MEpedia - User contributions [en]

David Tuller

2017-06-29T01:15:49Z

DxCFS:/* Writings about ME/CFS */ Trial by Error, Continued: More on Graded Exercise from Peter White and The Lancet

[[File:David tuller.jpg|right]]
'''David Tuller''', DrPh, is academic coordinator of [https://en.wikipedia.org/wiki/University_of_California%2C_Berkeley University of California, Berkeley]'s joint masters program in public health and journalism. He was a reporter and editor for ten years at the ''San Francisco Chronicle'', served as health editor at ''Salon.com'' and frequently writes about health for ''The New York Times''.<ref>[https://journalism.berkeley.edu/faculty/david_tuller/ University of California, Berkeley - Berkeley Journalism - David Tuller Bio]</ref>

He's an experienced public health activist with a background as an ACT UP/NY activist which included an arrest at the Wall Street demonstration in 1987.<ref>http://mpetrelis.blogspot.com/2013/05/jay-blotchers-act-up-friends-reunion-in.html</ref>

David Tuller covered the [[PACE trial]] results for ''The New York Times'' as health editor in February 2011. <ref> http://www.nytimes.com/2011/02/18/health/research/18fatigue.html </ref> However he became concerned about the trial and wrote a further article regarding case definitions which resulted in an immediate response from the PACE trial authors which resulted him in investigating the trial and its authors further after contact with others in the patient community. <ref> http://www.nytimes.com/2011/03/08/health/research/08fatigue.html </ref> <ref> http://www.nytimes.com/2011/03/15/health/15letters-STUDYINGAFAT_LETTERS.html </ref>

Tuller is sympathetic toward the cause of the [[myalgic encephalomyelitis]]/[[chronic fatigue syndrome]] ([[ME/CFS]]) patient community. In an article in 2015 he wrote:

<blockquote>"In the course of my reporting, I’d realized that the disease was both devastating and widely misunderstood. People were really, really sick—some were homebound for months and years at a stretch. Yet their condition had been saddled with one of the most condescending names ever given a major illness."<ref>[http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped "Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough"]</ref></blockquote>

==Education==
*2005, Masters in Public Health from University of California, Berkeley

==Talks & interviews==
*May 31, 2017 - [[Virology blog]] Podcast: [http://www.microbe.tv/twiv/twivs-tuller3/ TWiV Special: Trial by Error, Continued] David Tuller returns to discuss the continuing saga of the UK’s PACE trial for chronic fatigue syndrome, including the accusation that he is engaging in libelous blogging.

*Feb 20, 2017 - [[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]]

*Oct 29, 2016 - Undark Podcast [http://undark.org/2016/10/31/undark-podcast-chronic-fatigue/ #8: Worse Than the Disease] Dr. Tuller discusses [[Graded Exercise Therapy]] (GET) "a therapy commonly prescribed for chronic fatigue syndrome — one for which supporting research is now unraveling."

* Aug 21, 2016 - Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-403/ TWiV 403: It’s not easy being vaccine] Discussion with David Tuller regarding PACE trial at 00.17.38- 00.23.57.

*Jul 10, 2016 - Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error] Dr. Tuller speaks at length and in detail about the [[PACE trial]] (calling the PACE Trial preposterous and a pack of nonsense, and a piece of crap) and [[FINE trial]], ''[[The Lancet]]'', ''[[British Medical Journal]]'' (BMJ) and ''[[PLOS ONE]]'', patients being ill yet deconstructing the PACE Trial, how [[ME/CFS]] is a disease being treated inappropriately with [[Exercise]], [[GET]] and [[CBT]], touches on the [[Institute of Medicine report]] and [[SEID]], [[Valerie Eliot Smith]] and [[Karina Hansen]], and more.<ref>[http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error]</ref>

*Feb 28, 2016 - [https://www.youtube.com/watch?v=1fS6Gzc52VI Speech on PACE Trial with Q&As] in Amsterdam.

*Feb 27, 2016 - [https://www.youtube.com/watch?v=UN1bYhkDHA4&feature=youtu.be Discussed the flaws of the Pace trial] with [[Frank Twisk]] while in Amsterdam at The [[Forgotten Plague]] Conference.

*Feb 6, 2011 - Virology blog podcast: [http://www.twiv.tv/2011/02/06/twiv-119-science-and-journalism-with-david-tuller/ TWiV 119: Science and journalism with David Tuller]. Dr. Tuller appeared as a guest on [[Vincent Racaniello]]'s podcast.

==Awards==
*2016, [[IACFS/ME]] Special Service Award - for outstanding personal effort and contribution to the CFS/ME community
*2016, [[Tymes Trust]] Award for Scientific Journalism<ref>https://www.facebook.com/tymestrust/photos/pb.1482582732026864.-2207520000.1477637753./1823344051284062/?type=3&theater</ref>

==Writings about ME/CFS==
'''Virology Blog'''
*Jun 28, 2017 - [http://www.virology.ws/2017/06/28/trial-by-error-continued-more-on-graded-exercise-from-peter-white-and-the-lancet/ Trial by Error, Continued: More on Graded Exercise from Peter White and The Lancet]
*Jun 24, 2017 - [http://www.virology.ws/2017/06/24/trial-by-error-continued-is-pace-a-case-of-research-misconduct/ Trial by Error, Continued: Is PACE a Case of Research Misconduct?]
*May 22, 2017 - [http://www.virology.ws/2017/05/22/trial-by-error-continued-me-research-uk-drops-out-of-cmrc/ Trial By Error, Continued: ME Research UK Drops Out of CMRC]
*May 15 2017 - [http://www.virology.ws/2017/05/15/trial-by-error-continued-the-cmrc-affirms-full-support-for-libelous-esther/ Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Esther]
*May 10 2017 - [http://www.virology.ws/2017/05/10/trial-by-error-continued-cmrc-to-virology-blog-fk-off/ Trial By Error, Continued: CMRC to Virology Blog: 'F**k Off!']
*May 8 2017 - [http://www.virology.ws/2017/05/08/trial-by-error-continued-an-open-letter-to-the-board-of-the-cfsme-research-collaborative/ Trial By Error, Continued: An Open Letter to the Board of the CFS/ME Research Collaborative]
*May 3, 2017 - [http://www.virology.ws/2017/05/03/trial-by-error-continued-my-libelous-blogging-on-virology-blog/ Trial By Error, Continued: My Libelous Blogging on Virology Blog]
*Mar 23, 2017 - [http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/ An open letter to Psychological Medicine, again!]
*Mar 13, 2017 - [http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/ An open letter to Psychological Medicine about “recovery” and the PACE trial]
*Nov 28, 2016 - [http://www.virology.ws/2016/11/28/trial-by-error-continued-a-follow-up-post-on-fitnet-nhs/ Trial By Error, Continued: A Follow-Up Post on FITNET-NHS]
*Nov 21, 2016 - [http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/ Trial By Error, Continued: The New FITNET Trial for Kids]
*Sep 22, 2016 - [http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ Trial By Error, Continued: The Real Data]
*Sep 1, 2016 - [http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ Trial By Error, Continued: My Questions for Lancet Editor Richard Horton]
*Aug 29, 2016 - [http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ Once Again, Lancet Stumbles on PACE]
*Feb 1, 2016 - [http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/ Trial By Error, Continued: A Few Words About 'Harassment']
*Jan 19, 2016 - [http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/ Trial By Error, Continued: More Nonsense from The Lancet Psychiatry]
*Jan 7, 2016 - [http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/ Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?] (coauthored by [[Julie Rehmeyer]])
*Jan 4, 2016 - [http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/ Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues]
*Dec 22, 2015 - [http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/ Revisiting the PLoS One economics analysis of PACE]
*Dec 17, 2015 - [http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/ A request for data from the PACE trial]
*Nov 17, 2015 - [http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?]
*Nov 13, 2015 - [http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/ An open letter to Dr. Richard Horton and The Lancet]
*Nov 9, 2015 - [http://www.virology.ws/2015/11/09/trial-by-error-continued-why-has-the-pace-studys-sister-trial-been-disappeared-and-forgotten/ Trial By Error, Continued: Why has the PACE Study’s Sister Trial been Disappeared and Forgotten?]
*Nov 4, 2015 - [http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/ Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?]
*Oct 30, 2015 - [http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/ David Tuller responds to the PACE Investigators]
*Oct 30, 2015 - [http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/ PACE trial investigators respond to David Tuller]
*Oct 23, 2015 - [http://www.virology.ws/2015/10/23/trial-by-error-iii/ TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (final installment)]
*Oct 22, 2015 - [http://www.virology.ws/2015/10/22/trial-by-error-ii/ TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second installment)]
*Oct 21, 2015 - [http://www.virology.ws/2015/10/21/trial-by-error-i/ TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study]
*Nov 23, 2011 - [http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/ Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale]

'''The New York Times'''
*Mar 18, 2017 - [https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?smid=tw-share&_r=0 Getting It Wrong on Chronic Fatigue Syndrome] (with [[Julie Rehmeyer]]) and Letters of response' [https://mobile.nytimes.com/2017/03/27/opinion/understanding-and-treating-chronic-fatigue.html?em_pos=small&emc=edit_ty_20170327&nl=opinion-today&nl_art=14&nlid=77538787&ref=headline&te=1&referer= Letters - The New York Times]
*Feb 10, 2015 - [http://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/ Chronic Fatigue Syndrome Gets a New Name]
*Nov 24, 2014 - [[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)]]
*Sep 18, 2012 - [http://well.blogs.nytimes.com/2012/09/18/chronic-fatigue-syndrome-back-to-square-1/ Chronic Fatigue Syndrome Back to Square 1]
*Feb 6, 2012 - [http://www.nytimes.com/2012/02/07/health/fallout-from-fatigue-syndrome-retraction-is-far-and-wide.html?pagewanted=1&_r=1 Fallout From Fatigue Syndrome Retraction Is Wide]
*Dec 26, 2011 - [http://www.nytimes.com/2011/12/27/health/research/scholars-retract-another-study-linking-xmrv-to-chronic-fatigue-syndrome.html Scholars Retract Another Study Linking Virus to Fatigue Syndrome]
*Dec 22, 2011 - [http://www.nytimes.com/2011/12/23/health/research/science-journal-retracts-chronic-fatigue-syndrome-paper.html?ref=research Fatigue Syndrome Study Is Retracted by Journal]
*Sep 22, 2011 - [http://www.nytimes.com/2011/09/23/health/research/23fatigue.html Viral Theory Is Set Back in Chronic Fatigue Syndrome Study]
*Jun 1, 2011 - [http://www.nytimes.com/2011/06/01/health/research/01fatigue.html?_r=1 2 Studies Examine Syndrome of Fatigue]
*Mar 4, 2011 - [http://www.nytimes.com/2011/03/08/health/research/08fatigue.html Defining an Illness Is Fodder for Debate]
*Feb 17, 2011 - [http://www.nytimes.com/2011/02/18/health/research/18fatigue.html Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds]
*Jan 3, 2011 - [http://www.nytimes.com/2011/01/04/health/04fatigue.html Exhausted by Illness, and Doubts]
*Aug 24, 2010 - [http://query.nytimes.com/gst/fullpage.html?res=9C00E4DB1439F937A1575BC0A9669D8B63 Study Links Chronic Fatigue to Virus Class]
*May 30, 2008 - [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-expert.html Learning Firsthand About Chronic Fatigue Syndrome]
*May 30, 2008 - [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-questions.html What to Ask About Chronic Fatigue Syndrome]
*Jul 17, 2007 - [http://www.nytimes.com/2007/07/17/science/17fatigue.html Chronic Fatigue No Longer Seen as 'Yuppie Flu']

'''Other print media'''
*Oct 27, 2016 - [http://undark.org/article/chronic-fatigue-graded-exercise-pace/ Worse Than the Disease] ''Undark''
*Nov 18, 2015 - [http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped Reporter Excoriates Chronic Fatigue Syndrome Study: "I Stopped at 14,000 Words-Enough Was Enough"] ''California Magazine''
*Jan 27, 2014 - [http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome#.tnegBjJ82 How 'Chronic Fatigue Syndrome' Obscures A Serious Illness] ''Buzzfeed''

==Online presence==
*[http://www.twitter.com/davidtuller1 Twitter]
*[https://www.crowdrise.com/virology-blogs-trial-by-error-more-reporting-on-pace-mecfs-and-related-issues1/fundraiser/davidtuller?utm_source=dash-gtwo-cr&utm_platform=twt&utm_device=desktop Crowdrise] Virology Blog's Trial By Error: Reporting on PACE, ME/CFS and Related Issues (2017)

==Learn more==
*[http://www.berkeleywellness.com/author/davidtullerdrph Berkeley Wellness - David Tuller]

==References==
<references>
</references>

[[Category:Journalists]][[Category:Advocates or allies]][[Category:Psychological paradigm critics]][[Category:PACE trial critics]]

Metabolomics

2017-06-28T23:30:02Z

DxCFS:Finding the cause of Chronic Fatigue Syndrome/ME

'''Metabolomics''' is defined by the [http://metabolomicssociety.org/ Metabolomics Society] as "a newly emerging field of "omics" research concerned with the comprehensive characterization of the small molecule metabolites in biological systems. It can provide an overview of the metabolic status and global biochemical events associated with a cellular or biological system."<ref>[http://metabolomicssociety.org/ Metabolomics Society - Home]</ref>

==Notable studies==
*[http://www.uib.no/en/biomedisin/108972/finding-cause-chronic-fatigue-syndromeme Finding the cause of Chronic Fatigue Syndrome/ME] Beginning July 2017
*[[Metabolic features of chronic fatigue syndrome]] Completed 2016

== References ==

[[Category:Metabolism]]

Xenotropic murine leukemia virus-related virus

2017-06-28T01:49:12Z

DxCFS:/* Learn more */ False Positive

'''Xenotropic murine leukemia virus-related virus''' (XMRV) is "a laboratory-derived mouse virus that was generated through recombination between two endogenous murine retroviruses during propagation of a prostate cancer xenograft in the mid-1990’s."<ref>[http://sciencewatch.com/articles/ncis-vinay-k-pathak-de-discovery-retrovirus-disease-link NCI'S Vinay K. Pathak on the "De-Discovery" of a retrovirus-disease link]</ref>

==Chronic fatigue syndrome==
An October 2009 paper by [[Vincent Lombardi]], [[Francis Ruscetti]], Jaydip Das Gupta, [[Max Pfost]], Kathryn S. Hagen, [[Daniel Peterson]], [[Sandra Ruscetti]], Rachel K. Bagni, Cari Petrow-Sadowski, Bert Gold, Michael Dean, [[Robert Silverman]] [[Judy Mikovits]] entitled "Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with [[Chronic Fatigue Syndrome]]" claimed to have found a link between [[chronic fatigue syndrome]] and the presence of the retrovirus.<ref>[http://science.sciencemag.org/content/326/5952/585 Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome]</ref> The paper's primary authors were at that time based at the [[Whittemore Peterson Institute]] (WPI) in Reno, Nevada, United States. The WPI soon began offering a controversial commercial XMRV testing service.<ref>[http://www.prohealth.com/library/showarticle.cfm?libid=15552 WPI-Licensed Test for XMRV & Variants Now Available]</ref><ref>[http://www.meassociation.org.uk/2010/04/xmrv-testing-in-the-uk/ XMRV testing in the UK]</ref>

Other labs around the world were unable to detect XMRV in their patient samples. In July 2011 the journal issued an editorial expression of concern about the paper.<ref>[http://science.sciencemag.org/content/333/6038/35.1 Editorial Expression of Concern]</ref>

The paper was fully retracted in December 2011 by the journal.<ref>[http://retractionwatch.com/2011/12/22/chronic-fatigue-syndrome-xmrv-paper-retracted-by-science-completely-this-time/ Chronic fatigue syndrome-XMRV paper retracted by Science, completely this time]</ref><ref>[http://science.sciencemag.org/content/334/6063/1636.1 Retraction]</ref>

One of the key scientists involved in efforts to clarify the situation surrounding XMRV, and eventually to debunk the science, was [[Ian Lipkin]] of Columbia University in New York.<ref>[http://www.nature.com/news/the-scientist-who-put-the-nail-in-xmrv-s-coffin-1.11444 The scientist who put the nail in XMRV's coffin]</ref>

Doctor [[Judy Mikovits|Mikovits]] has maintained her view that XMRV is a public health risk and documents those views in her book [[Plague]] with co-author [[Kent Heckenlively]].<ref>[http://www.greenmedinfo.com/blog/plague-update-xmrv PLAGUE – The Update on XMRV]</ref><ref>[http://retractionwatch.com/2014/03/11/chronic-fatigue-syndrome-researcher-mikovits-who-championed-link-to-xmrv-to-publish-book/ Tracking retractions as a window into the scientific process Chronic fatigue syndrome researcher Mikovits, who championed link to XMRV, to publish book]</ref>

Mainstream science considers XMRV to be a laboratory artefact and not a threat to human health or related to chronic fatigue syndrome.<ref>[https://en.wikipedia.org/wiki/Xenotropic_murine_leukemia_virus-related_virus#Chronic_fatigue_syndrome Wikipedia - XMRV - Chronic fatigue syndrome]</ref><ref>[http://www.sciencemag.org/news/2012/09/final-study-confirms-virus-not-implicated-chronic-fatigue-syndrome Final Study Confirms: Virus Not Implicated in Chronic Fatigue Syndrome]</ref>

==Notable studies==
*2017, [http://journal.frontiersin.org/article/10.3389/fpubh.2017.00108/full XMRV and Public Health: The Retroviral Genome Is Not a Suitable Template for Diagnostic PCR, and Its Association with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Appears Unreliable]
*2016, [https://www.ncbi.nlm.nih.gov/pubmed/27358491 Xenotropic Murine Leukemia Virus-Related Virus (XMRV) and the Safety of the Blood Supply]

==Studies unable to detect XMRV in CFS patients==
*2017, (Italy) ''XMRV and Public Health: The Retroviral Genome Is Not a Suitable Template for Diagnostic PCR, and Its Association with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Appears Unreliable'' [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5439170/(FULL TEXT)] <ref>APA Panelli, S., Lorusso, L., Balestrieri, A., Lupo, G., & Capelli, E. (2017). XMRV and Public Health: The Retroviral Genome Is Not a Suitable Template for Diagnostic PCR, and Its Association with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Appears Unreliable. Frontiers in Public Health, 5, 108. http://doi.org/10.3389/fpubh.2017.00108</ref>
*2012, (USA) ''A Multicenter Blinded Analysis Indicates No Association between Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and either Xenotropic Murine Leukemia Virus-Related Virus or Polytropic Murine Leukemia Virus.'' [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3448165/ (FULL TEXT)]<ref name="Alter, et al, 2012"/>
*2011, (USA) [http://www.ncbi.nlm.nih.gov/pubmed/21543496 ''Absence of XMRV retrovirus and other murine leukemia virus-related viruses in patients with chronic fatigue syndrome.'']<ref>Shin CH, [[Lucinda Bateman|Bateman L]], Schlaberg R, Bunker AM, Leonard CJ, Hughen RW, [[Alan Light|Light AR]], [[Kathleen Light|Light KC]], Singh IR. (2011) Absence of XMRV retrovirus and other murine leukemia virus-related viruses in patients with chronic fatigue syndrome. ''Journal of Virology''. 2011 Jul;85(14):7195-202. doi: 10.1128/JVI.00693-11.</ref>
*2011, (USA) [http://www.ncbi.nlm.nih.gov/pubmed/22312356 ''Failure to Detect XMRV-Specific Antibodies in the Plasma of CFS Patients Using Highly Sensitive Chemiluminescence Immunoassays.'']<ref>Oakes B, Qiu X, Levine S, Hackett J Jr, Huber BT. (2011). Failure to Detect XMRV-Specific Antibodies in the Plasma of CFS Patients Using Highly Sensitive Chemiluminescence Immunoassays. ''Advances in Virology,2011'':854540. doi: 10.1155/2011/854540.</ref>
*2011, (Canada) [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3219700/ ''No Evidence for XMRV Nucleic Acids, Infectious Virus or Anti-XMRV Antibodies in Canadian Patients with Chronic Fatigue Syndrome'' - (FULL TEXT)]<ref>Imke Steffen, D. Lorne Tyrrell, [[Eleanor Stein]], Leilani Montalvo, Tzong-Hae Lee, Yanchen Zhou, Kai Lu, William M. Switzer, Shaohua Tang, Hongwei Jia, Darren Hockman, Deanna M. Santer, Michael Logan, Amir Landi, John Law, [[Michael Houghton]], and Graham Simmons. (2011). No Evidence for XMRV Nucleic Acids, Infectious Virus or Anti-XMRV Antibodies in Canadian Patients with Chronic Fatigue Syndrome. PLoS ONE, 6(11), e27870. http://doi.org/10.1371/journal.pone.0027870</ref>
*2011, (Japan) [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065418/ ''No association of xenotropic murine leukemia virus-related virus with prostate cancer or chronic fatigue syndrome in Japan'' - (FULL TEXT)]<ref>Furuta, R. A., Miyazawa, T., Sugiyama, T., Kuratsune, H., Ikeda, Y., Sato, E., … Hirayama, F. (2011). No association of xenotropic murine leukemia virus-related virus with prostate cancer or chronic fatigue syndrome in Japan. Retrovirology, 8, 20. http://doi.org/10.1186/1742-4690-8-20</ref>
*2010, (UK) ''Absence of xenotropic murine leukaemia virus-related virus in UK patients with chronic fatigue syndrome'' [http://retrovirology.biomedcentral.com/articles/10.1186/1742-4690-7-10 (FULL TEXT)]<ref>Harriet CT Groom, Virginie C Boucherit, Kerry Makinson, Edward Randal, Sarah Baptista, Suzanne Hagan, John W Gow, Frank M Mattes, Judith Breuer, [[Jonathan Kerr|Jonathan R Kerr]], Jonathan P Stoye and Kate N Bishop. (2010). Absence of xenotropic murine leukaemia virus-related virus in UK patients with chronic fatigue syndrome. ''Retrovirology'', 2010, 7:10. doi: 10.1186/1742-4690-7-10</ref>
*2010, (Netherlands) ''Prevalence of xenotropic murine leukaemia virus-related virus in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort'' [http://www.bmj.com/content/340/bmj.c1018 - (FULL TEXT)]<ref>
van Kuppeveld Frank J M, Jong Arjan S de, Lanke Kjerstin H, Verhaegh Gerald W, Melchers Willem J G, Swanink Caroline M A et al. Prevalence of xenotropic murine leukaemia virus-related virus in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort BMJ 2010; 340 :c1018</ref>
*2010, (China) ''Failure to detect Xenotropic murine leukaemia virus-related virus in Chinese patients with chronic fatigue syndrome'' [http://virologyj.biomedcentral.com/articles/10.1186/1743-422X-7-224 - (FULL TEXT)]<ref>Ping Hong, Jinming LiEmail, and Yongzhe Li. (2010). Failure to detect Xenotropic murine leukaemia virus-related virus in Chinese patients with chronic fatigue syndrome. Virology Journal, 2010, 7:224. doi: 10.1186/1743-422X-7-224</ref>
*2010, (Germany) ''No Evidence for XMRV in German CFS and MS Patients with Fatigue Despite the Ability of the Virus to Infect Human Blood Cells In Vitro'' [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3008728/ - (FULL TEXT)]<ref>Hohn, O., Strohschein, K., Brandt, A. U., Seeher, S., Klein, S., Kurth, R., … Bannert, N. (2010). No Evidence for XMRV in German CFS and MS Patients with Fatigue Despite the Ability of the Virus to Infect Human Blood Cells In Vitro. PLoS ONE, 5(12), e15632. http://doi.org/10.1371/journal.pone.0015632</ref>

==Learn more==
*[https://en.wikipedia.org/wiki/Xenotropic_murine_leukemia_virus-related_virus Wikipedia - Xenotropic murine leukemia virus-related virus]
*2012, [https://www.sciencebasedmedicine.org/xmrv-chronic-fatigue-syndrome-update/ XMRV Chronic Fatigue Syndrome Update] (Science Based Medicine)
*2011, [http://science.sciencemag.org/content/333/6050/1694.full?sid=b7ed914a-6290-4f3f-a625-2c4d4557472f False Positive] (Science Magazine)

=== Abbie Smith ERV blog series of XMRV research ===
*Sep 26 2011, [http://scienceblogs.com/erv/2011/09/26/xmrv-and-chronic-fatigue-syndr-28/ XMRV and chronic fatigue syndrome: Isnt that weird?]
*Jun 3 2011, [http://scienceblogs.com/erv/2011/06/03/xmrv-and-chronic-fatigue-syndr-26/ XMRV and chronic fatigue syndrome: So long, and thanks for all the lulz, Part III]
*Jun 1 2011, [http://scienceblogs.com/erv/2011/06/01/xmrv-and-chronic-fatigue-syndr-25/ XMRV and chronic fatigue syndrome: So long, and thanks for all the lulz, Part II]
*May 31 2011, [http://scienceblogs.com/erv/2011/05/31/xmrv-and-chronic-fatigue-syndr-23/ XMRV and chronic fatigue syndrome: So long, and thanks for all the lulz, Part I]
*Feb 25 2011, [http://scienceblogs.com/erv/2011/02/25/xmrv-lab-contaminant/ XMRV = Lab contaminant.]
*Apr 19 2010, [http://scienceblogs.com/erv/2010/04/19/xmrv-and-chronic-fatigue-syndr-12/ XMRV and chronic fatigue syndrome: A Tale of Two Laboratories]
*Oct 15 2010, [http://scienceblogs.com/erv/2010/10/15/xmrv-and-autism-best-conflict/ XMRV and Autism: Best conflict of interest EVAH!]
*Jun 14 2010, [http://scienceblogs.com/erv/2010/06/14/xmrv-and-antiretrovirals-1/ XMRV and antiretrovirals]

*[http://scienceblogs.com/erv/tag/xmrv/ All blogs tagged XMRV]

=== Nevada newsmakers report on XMRV ===
*2009, [https://www.youtube.com/watch?v=HjNYMxK86tA XMRV explained on Nevada Newsmakers October 2009]

==See also==
*[[Judy Mikovits]] (and her book [[Plague]])
*[[Elaine DeFreitas]]
*[[HTLV-1]]

==References==
<references>
<ref name="Alter, et al, 2012">
{{Citation
| last1 = Alter | first1 = Harvey J. | authorlink1 =
| last2 = Mikovits | first2 = Judy A. | authorlink2 = Judy Mikovits
| last3 = Switzer | first3 = William M. | authorlink3 =
| last4 = Ruscetti | first4 = Francis W. | authorlink4 =
| last5 = Lo | first5 = Shyh-Ching | authorlink5 =
| last6 = Klimas | first6 = Nancy | authorlink6 = Nancy Klimas
| last7 = Komaroff | first7 = Anthony L. | authorlink7 = Anthony Komaroff
| last8 = Montoya | first8 = Jose G. | authorlink8 = Jose Montoya
| last9 = Bateman | first9 = Lucinda | authorlink9 = Lucinda Bateman
| last10 = Levine | first10 = Susan | authorlink10 = Susan Levine
| last11 = Peterson | first11 = Daniel | authorlink11 = Daniel Peterson
| last12 = Levin | first12 = Bruce | authorlink12 = Bruce Levin
| last13 = Hanson | first13 = Maureen R. | authorlink13 = Maureen Hanson
| last14 = Genfi | first14 = Afia | authorlink14 =
| last15 = Bhat | first15 = Meera | authorlink15 =
| last16 = Zheng | first16 = HaoQiang | authorlink16 =
| last17 = Wang | first17 = Richard | authorlink17 =
| last18 = Li | first18 = Bingjie | authorlink18 =
| last19 = Hung | first19 = Guo-Chiuan | authorlink19 =
| last20 = Lee | first20 = Li Ling | authorlink20 =
| last21 = Sameroff | first21 = Stephen | authorlink21 =
| last22 = Heneine | first22 = Walid | authorlink22 =
| last23 = Coffin | first23 = John | authorlink23 =
| last24 = Hornig | first24 = Mady | authorlink24 = Mady Hornig
| last25 = Lipkin | first25 = W. Ian | authorlink25 = Ian Lipkin
| title = A Multicenter Blinded Analysis Indicates No Association between Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and either Xenotropic Murine Leukemia Virus-Related Virus or Polytropic Murine Leukemia Virus
| journal = mBio | volume = 3 | issue = 5 | page = e00266–12
| date = 2012
| pmid =
| doi = 10.1128/mBio.00266-12
}}
</ref>
</references>

[[Category:Infectious agents]]
[[Category:History]]
[[Category:Notable studies]]

David Tuller

2017-06-25T15:09:20Z

DxCFS:/* Talks & interviews */ Wording, Quote

[[File:David tuller.jpg|right]]
'''David Tuller''', DrPh, is academic coordinator of [https://en.wikipedia.org/wiki/University_of_California%2C_Berkeley University of California, Berkeley]'s joint masters program in public health and journalism. He was a reporter and editor for ten years at the ''San Francisco Chronicle'', served as health editor at ''Salon.com'' and frequently writes about health for ''The New York Times''.<ref>[https://journalism.berkeley.edu/faculty/david_tuller/ University of California, Berkeley - Berkeley Journalism - David Tuller Bio]</ref>

He's an experienced public health activist with a background as an ACT UP/NY activist which included an arrest at the Wall Street demonstration in 1987.<ref>http://mpetrelis.blogspot.com/2013/05/jay-blotchers-act-up-friends-reunion-in.html</ref>

David Tuller covered the [[PACE trial]] results for ''The New York Times'' as health editor in February 2011. <ref> http://www.nytimes.com/2011/02/18/health/research/18fatigue.html </ref> However he became concerned about the trial and wrote a further article regarding case definitions which resulted in an immediate response from the PACE trial authors which resulted him in investigating the trial and its authors further after contact with others in the patient community. <ref> http://www.nytimes.com/2011/03/08/health/research/08fatigue.html </ref> <ref> http://www.nytimes.com/2011/03/15/health/15letters-STUDYINGAFAT_LETTERS.html </ref>

Tuller is sympathetic toward the cause of the [[myalgic encephalomyelitis]]/[[chronic fatigue syndrome]] ([[ME/CFS]]) patient community. In an article in 2015 he wrote:

<blockquote>"In the course of my reporting, I’d realized that the disease was both devastating and widely misunderstood. People were really, really sick—some were homebound for months and years at a stretch. Yet their condition had been saddled with one of the most condescending names ever given a major illness."<ref>[http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped "Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough"]</ref></blockquote>

==Education==
*2005, Masters in Public Health from University of California, Berkeley

==Talks & interviews==
*May 31, 2017 - [[Virology blog]] Podcast: [http://www.microbe.tv/twiv/twivs-tuller3/ TWiV Special: Trial by Error, Continued] David Tuller returns to discuss the continuing saga of the UK’s PACE trial for chronic fatigue syndrome, including the accusation that he is engaging in libelous blogging.

*Feb 20, 2017 - [[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]]

*Oct 29, 2016 - Undark Podcast [http://undark.org/2016/10/31/undark-podcast-chronic-fatigue/ #8: Worse Than the Disease] Dr. Tuller discusses [[Graded Exercise Therapy]] (GET) "a therapy commonly prescribed for chronic fatigue syndrome — one for which supporting research is now unraveling."

* Aug 21, 2016 - Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-403/ TWiV 403: It’s not easy being vaccine] Discussion with David Tuller regarding PACE trial at 00.17.38- 00.23.57.

*Jul 10, 2016 - Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error] Dr. Tuller speaks at length and in detail about the [[PACE trial]] (calling the PACE Trial preposterous and a pack of nonsense, and a piece of crap) and [[FINE trial]], ''[[The Lancet]]'', ''[[British Medical Journal]]'' (BMJ) and ''[[PLOS ONE]]'', patients being ill yet deconstructing the PACE Trial, how [[ME/CFS]] is a disease being treated inappropriately with [[Exercise]], [[GET]] and [[CBT]], touches on the [[Institute of Medicine report]] and [[SEID]], [[Valerie Eliot Smith]] and [[Karina Hansen]], and more.<ref>[http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error]</ref>

*Feb 28, 2016 - [https://www.youtube.com/watch?v=1fS6Gzc52VI Speech on PACE Trial with Q&As] in Amsterdam.

*Feb 27, 2016 - [https://www.youtube.com/watch?v=UN1bYhkDHA4&feature=youtu.be Discussed the flaws of the Pace trial] with [[Frank Twisk]] while in Amsterdam at The [[Forgotten Plague]] Conference.

*Feb 6, 2011 - Virology blog podcast: [http://www.twiv.tv/2011/02/06/twiv-119-science-and-journalism-with-david-tuller/ TWiV 119: Science and journalism with David Tuller]. Dr. Tuller appeared as a guest on [[Vincent Racaniello]]'s podcast.

==Awards==
*2016, [[IACFS/ME]] Special Service Award - for outstanding personal effort and contribution to the CFS/ME community
*2016, [[Tymes Trust]] Award for Scientific Journalism<ref>https://www.facebook.com/tymestrust/photos/pb.1482582732026864.-2207520000.1477637753./1823344051284062/?type=3&theater</ref>

==Writings about ME/CFS==
'''Virology Blog'''
*Jun 24, 2017 - [http://www.virology.ws/2017/06/24/trial-by-error-continued-is-pace-a-case-of-research-misconduct/ Trial by Error, Continued: Is PACE a Case of Research Misconduct?]
*May 22, 2017 - [http://www.virology.ws/2017/05/22/trial-by-error-continued-me-research-uk-drops-out-of-cmrc/ Trial By Error, Continued: ME Research UK Drops Out of CMRC]
*May 15 2017 - [http://www.virology.ws/2017/05/15/trial-by-error-continued-the-cmrc-affirms-full-support-for-libelous-esther/ Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Esther]
*May 10 2017 - [http://www.virology.ws/2017/05/10/trial-by-error-continued-cmrc-to-virology-blog-fk-off/ Trial By Error, Continued: CMRC to Virology Blog: 'F**k Off!']
*May 8 2017 - [http://www.virology.ws/2017/05/08/trial-by-error-continued-an-open-letter-to-the-board-of-the-cfsme-research-collaborative/ Trial By Error, Continued: An Open Letter to the Board of the CFS/ME Research Collaborative]
*May 3, 2017 - [http://www.virology.ws/2017/05/03/trial-by-error-continued-my-libelous-blogging-on-virology-blog/ Trial By Error, Continued: My Libelous Blogging on Virology Blog]
*Mar 23, 2017 - [http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/ An open letter to Psychological Medicine, again!]
*Mar 13, 2017 - [http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/ An open letter to Psychological Medicine about “recovery” and the PACE trial]
*Nov 28, 2016 - [http://www.virology.ws/2016/11/28/trial-by-error-continued-a-follow-up-post-on-fitnet-nhs/ Trial By Error, Continued: A Follow-Up Post on FITNET-NHS]
*Nov 21, 2016 - [http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/ Trial By Error, Continued: The New FITNET Trial for Kids]
*Sep 22, 2016 - [http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ Trial By Error, Continued: The Real Data]
*Sep 1, 2016 - [http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ Trial By Error, Continued: My Questions for Lancet Editor Richard Horton]
*Aug 29, 2016 - [http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ Once Again, Lancet Stumbles on PACE]
*Feb 1, 2016 - [http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/ Trial By Error, Continued: A Few Words About 'Harassment']
*Jan 19, 2016 - [http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/ Trial By Error, Continued: More Nonsense from The Lancet Psychiatry]
*Jan 7, 2016 - [http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/ Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?] (coauthored by [[Julie Rehmeyer]])
*Jan 4, 2016 - [http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/ Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues]
*Dec 22, 2015 - [http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/ Revisiting the PLoS One economics analysis of PACE]
*Dec 17, 2015 - [http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/ A request for data from the PACE trial]
*Nov 17, 2015 - [http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?]
*Nov 13, 2015 - [http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/ An open letter to Dr. Richard Horton and The Lancet]
*Nov 9, 2015 - [http://www.virology.ws/2015/11/09/trial-by-error-continued-why-has-the-pace-studys-sister-trial-been-disappeared-and-forgotten/ Trial By Error, Continued: Why has the PACE Study’s Sister Trial been Disappeared and Forgotten?]
*Nov 4, 2015 - [http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/ Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?]
*Oct 30, 2015 - [http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/ David Tuller responds to the PACE Investigators]
*Oct 30, 2015 - [http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/ PACE trial investigators respond to David Tuller]
*Oct 23, 2015 - [http://www.virology.ws/2015/10/23/trial-by-error-iii/ TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (final installment)]
*Oct 22, 2015 - [http://www.virology.ws/2015/10/22/trial-by-error-ii/ TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second installment)]
*Oct 21, 2015 - [http://www.virology.ws/2015/10/21/trial-by-error-i/ TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study]
*Nov 23, 2011 - [http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/ Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale]

'''The New York Times'''
*Mar 18, 2017 - [https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?smid=tw-share&_r=0 Getting It Wrong on Chronic Fatigue Syndrome] (with [[Julie Rehmeyer]]) and Letters of response' [https://mobile.nytimes.com/2017/03/27/opinion/understanding-and-treating-chronic-fatigue.html?em_pos=small&emc=edit_ty_20170327&nl=opinion-today&nl_art=14&nlid=77538787&ref=headline&te=1&referer= Letters - The New York Times]
*Feb 10, 2015 - [http://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/ Chronic Fatigue Syndrome Gets a New Name]
*Nov 24, 2014 - [[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)]]
*Sep 18, 2012 - [http://well.blogs.nytimes.com/2012/09/18/chronic-fatigue-syndrome-back-to-square-1/ Chronic Fatigue Syndrome Back to Square 1]
*Feb 6, 2012 - [http://www.nytimes.com/2012/02/07/health/fallout-from-fatigue-syndrome-retraction-is-far-and-wide.html?pagewanted=1&_r=1 Fallout From Fatigue Syndrome Retraction Is Wide]
*Dec 26, 2011 - [http://www.nytimes.com/2011/12/27/health/research/scholars-retract-another-study-linking-xmrv-to-chronic-fatigue-syndrome.html Scholars Retract Another Study Linking Virus to Fatigue Syndrome]
*Dec 22, 2011 - [http://www.nytimes.com/2011/12/23/health/research/science-journal-retracts-chronic-fatigue-syndrome-paper.html?ref=research Fatigue Syndrome Study Is Retracted by Journal]
*Sep 22, 2011 - [http://www.nytimes.com/2011/09/23/health/research/23fatigue.html Viral Theory Is Set Back in Chronic Fatigue Syndrome Study]
*Jun 1, 2011 - [http://www.nytimes.com/2011/06/01/health/research/01fatigue.html?_r=1 2 Studies Examine Syndrome of Fatigue]
*Mar 4, 2011 - [http://www.nytimes.com/2011/03/08/health/research/08fatigue.html Defining an Illness Is Fodder for Debate]
*Feb 17, 2011 - [http://www.nytimes.com/2011/02/18/health/research/18fatigue.html Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds]
*Jan 3, 2011 - [http://www.nytimes.com/2011/01/04/health/04fatigue.html Exhausted by Illness, and Doubts]
*Aug 24, 2010 - [http://query.nytimes.com/gst/fullpage.html?res=9C00E4DB1439F937A1575BC0A9669D8B63 Study Links Chronic Fatigue to Virus Class]
*May 30, 2008 - [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-expert.html Learning Firsthand About Chronic Fatigue Syndrome]
*May 30, 2008 - [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-questions.html What to Ask About Chronic Fatigue Syndrome]
*Jul 17, 2007 - [http://www.nytimes.com/2007/07/17/science/17fatigue.html Chronic Fatigue No Longer Seen as 'Yuppie Flu']

'''Other print media'''
*Oct 27, 2016 - [http://undark.org/article/chronic-fatigue-graded-exercise-pace/ Worse Than the Disease] ''Undark''
*Nov 18, 2015 - [http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped Reporter Excoriates Chronic Fatigue Syndrome Study: "I Stopped at 14,000 Words-Enough Was Enough"] ''California Magazine''
*Jan 27, 2014 - [http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome#.tnegBjJ82 How 'Chronic Fatigue Syndrome' Obscures A Serious Illness] ''Buzzfeed''

==Online presence==
*[http://www.twitter.com/davidtuller1 Twitter]
*[https://www.crowdrise.com/virology-blogs-trial-by-error-more-reporting-on-pace-mecfs-and-related-issues1/fundraiser/davidtuller?utm_source=dash-gtwo-cr&utm_platform=twt&utm_device=desktop Crowdrise] Virology Blog's Trial By Error: Reporting on PACE, ME/CFS and Related Issues (2017)

==Learn more==
*[http://www.berkeleywellness.com/author/davidtullerdrph Berkeley Wellness - David Tuller]

==References==
<references>
</references>

[[Category:Journalists]][[Category:Advocates or allies]][[Category:Psychological paradigm critics]][[Category:PACE trial critics]]

David Tuller

2017-06-25T14:55:07Z

DxCFS:Education

[[File:David tuller.jpg|right]]
'''David Tuller''', DrPh, is academic coordinator of [https://en.wikipedia.org/wiki/University_of_California%2C_Berkeley University of California, Berkeley]'s joint masters program in public health and journalism. He was a reporter and editor for ten years at the ''San Francisco Chronicle'', served as health editor at ''Salon.com'' and frequently writes about health for ''The New York Times''.<ref>[https://journalism.berkeley.edu/faculty/david_tuller/ University of California, Berkeley - Berkeley Journalism - David Tuller Bio]</ref>

He's an experienced public health activist with a background as an ACT UP/NY activist which included an arrest at the Wall Street demonstration in 1987.<ref>http://mpetrelis.blogspot.com/2013/05/jay-blotchers-act-up-friends-reunion-in.html</ref>

David Tuller covered the [[PACE trial]] results for ''The New York Times'' as health editor in February 2011. <ref> http://www.nytimes.com/2011/02/18/health/research/18fatigue.html </ref> However he became concerned about the trial and wrote a further article regarding case definitions which resulted in an immediate response from the PACE trial authors which resulted him in investigating the trial and its authors further after contact with others in the patient community. <ref> http://www.nytimes.com/2011/03/08/health/research/08fatigue.html </ref> <ref> http://www.nytimes.com/2011/03/15/health/15letters-STUDYINGAFAT_LETTERS.html </ref>

Tuller is sympathetic toward the cause of the [[myalgic encephalomyelitis]]/[[chronic fatigue syndrome]] ([[ME/CFS]]) patient community. In an article in 2015 he wrote:

<blockquote>"In the course of my reporting, I’d realized that the disease was both devastating and widely misunderstood. People were really, really sick—some were homebound for months and years at a stretch. Yet their condition had been saddled with one of the most condescending names ever given a major illness."<ref>[http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped "Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough"]</ref></blockquote>

==Education==
*2005, Masters in Public Health from University of California, Berkeley

==Talks & interviews==
*May 31, 2017 - [[Virology blog]] Podcast: [http://www.microbe.tv/twiv/twivs-tuller3/ TWiV Special: Trial by Error, Continued] David Tuller returns to discuss the continuing saga of the UK’s PACE trial for chronic fatigue syndrome, including the accusation that he is engaging in libelous blogging.

*Feb 20, 2017 - [[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]]

*Oct 29, 2016 - Undark Podcast [http://undark.org/2016/10/31/undark-podcast-chronic-fatigue/ #8: Worse Than the Disease] Dr. Tuller [[Graded Exercise Therapy]] (GET) commonly prescribed for chronic fatigue syndrome — one for which supporting research is now unraveling.

* Aug 21, 2016 - Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-403/ TWiV 403: It’s not easy being vaccine] Discussion with David Tuller regarding PACE trial at 00.17.38- 00.23.57.

*Jul 10, 2016 - Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error], Dr. Tuller speaks at length and in detail about the [[PACE trial]] (calling the PACE Trial preposterous and a pack of nonsense, and a piece of crap) and [[FINE trial]], ''[[The Lancet]]'', ''[[British Medical Journal]]'' (BMJ) and ''[[PLOS ONE]]'', patients being ill yet deconstructing the PACE Trial, how [[ME/CFS]] is a disease being treated inappropriately with [[Exercise]], [[GET]] and [[CBT]], touches on the [[Institute of Medicine report]] and [[SEID]], [[Valerie Eliot Smith]] and [[Karina Hansen]], and more.<ref>[http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error]</ref>

*Feb 28, 2016 - [https://www.youtube.com/watch?v=1fS6Gzc52VI Speech on PACE Trial with Q&As] in Amsterdam.

*Feb 27, 2016 - [https://www.youtube.com/watch?v=UN1bYhkDHA4&feature=youtu.be Discussed the flaws of the Pace trial] with [[Frank Twisk]] while in Amsterdam at The [[Forgotten Plague]] Conference.

*Feb 6, 2011 - Virology blog podcast: [http://www.twiv.tv/2011/02/06/twiv-119-science-and-journalism-with-david-tuller/ TWiV 119: Science and journalism with David Tuller]. Dr. Tuller appeared as a guest on [[Vincent Racaniello]]'s podcast.

==Awards==
*2016, [[IACFS/ME]] Special Service Award - for outstanding personal effort and contribution to the CFS/ME community
*2016, [[Tymes Trust]] Award for Scientific Journalism<ref>https://www.facebook.com/tymestrust/photos/pb.1482582732026864.-2207520000.1477637753./1823344051284062/?type=3&theater</ref>

==Writings about ME/CFS==
'''Virology Blog'''
*Jun 24, 2017 - [http://www.virology.ws/2017/06/24/trial-by-error-continued-is-pace-a-case-of-research-misconduct/ Trial by Error, Continued: Is PACE a Case of Research Misconduct?]
*May 22, 2017 - [http://www.virology.ws/2017/05/22/trial-by-error-continued-me-research-uk-drops-out-of-cmrc/ Trial By Error, Continued: ME Research UK Drops Out of CMRC]
*May 15 2017 - [http://www.virology.ws/2017/05/15/trial-by-error-continued-the-cmrc-affirms-full-support-for-libelous-esther/ Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Esther]
*May 10 2017 - [http://www.virology.ws/2017/05/10/trial-by-error-continued-cmrc-to-virology-blog-fk-off/ Trial By Error, Continued: CMRC to Virology Blog: 'F**k Off!']
*May 8 2017 - [http://www.virology.ws/2017/05/08/trial-by-error-continued-an-open-letter-to-the-board-of-the-cfsme-research-collaborative/ Trial By Error, Continued: An Open Letter to the Board of the CFS/ME Research Collaborative]
*May 3, 2017 - [http://www.virology.ws/2017/05/03/trial-by-error-continued-my-libelous-blogging-on-virology-blog/ Trial By Error, Continued: My Libelous Blogging on Virology Blog]
*Mar 23, 2017 - [http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/ An open letter to Psychological Medicine, again!]
*Mar 13, 2017 - [http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/ An open letter to Psychological Medicine about “recovery” and the PACE trial]
*Nov 28, 2016 - [http://www.virology.ws/2016/11/28/trial-by-error-continued-a-follow-up-post-on-fitnet-nhs/ Trial By Error, Continued: A Follow-Up Post on FITNET-NHS]
*Nov 21, 2016 - [http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/ Trial By Error, Continued: The New FITNET Trial for Kids]
*Sep 22, 2016 - [http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ Trial By Error, Continued: The Real Data]
*Sep 1, 2016 - [http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ Trial By Error, Continued: My Questions for Lancet Editor Richard Horton]
*Aug 29, 2016 - [http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ Once Again, Lancet Stumbles on PACE]
*Feb 1, 2016 - [http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/ Trial By Error, Continued: A Few Words About 'Harassment']
*Jan 19, 2016 - [http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/ Trial By Error, Continued: More Nonsense from The Lancet Psychiatry]
*Jan 7, 2016 - [http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/ Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?] (coauthored by [[Julie Rehmeyer]])
*Jan 4, 2016 - [http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/ Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues]
*Dec 22, 2015 - [http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/ Revisiting the PLoS One economics analysis of PACE]
*Dec 17, 2015 - [http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/ A request for data from the PACE trial]
*Nov 17, 2015 - [http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?]
*Nov 13, 2015 - [http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/ An open letter to Dr. Richard Horton and The Lancet]
*Nov 9, 2015 - [http://www.virology.ws/2015/11/09/trial-by-error-continued-why-has-the-pace-studys-sister-trial-been-disappeared-and-forgotten/ Trial By Error, Continued: Why has the PACE Study’s Sister Trial been Disappeared and Forgotten?]
*Nov 4, 2015 - [http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/ Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?]
*Oct 30, 2015 - [http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/ David Tuller responds to the PACE Investigators]
*Oct 30, 2015 - [http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/ PACE trial investigators respond to David Tuller]
*Oct 23, 2015 - [http://www.virology.ws/2015/10/23/trial-by-error-iii/ TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (final installment)]
*Oct 22, 2015 - [http://www.virology.ws/2015/10/22/trial-by-error-ii/ TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second installment)]
*Oct 21, 2015 - [http://www.virology.ws/2015/10/21/trial-by-error-i/ TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study]
*Nov 23, 2011 - [http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/ Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale]

'''The New York Times'''
*Mar 18, 2017 - [https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?smid=tw-share&_r=0 Getting It Wrong on Chronic Fatigue Syndrome] (with [[Julie Rehmeyer]]) and Letters of response' [https://mobile.nytimes.com/2017/03/27/opinion/understanding-and-treating-chronic-fatigue.html?em_pos=small&emc=edit_ty_20170327&nl=opinion-today&nl_art=14&nlid=77538787&ref=headline&te=1&referer= Letters - The New York Times]
*Feb 10, 2015 - [http://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/ Chronic Fatigue Syndrome Gets a New Name]
*Nov 24, 2014 - [[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)]]
*Sep 18, 2012 - [http://well.blogs.nytimes.com/2012/09/18/chronic-fatigue-syndrome-back-to-square-1/ Chronic Fatigue Syndrome Back to Square 1]
*Feb 6, 2012 - [http://www.nytimes.com/2012/02/07/health/fallout-from-fatigue-syndrome-retraction-is-far-and-wide.html?pagewanted=1&_r=1 Fallout From Fatigue Syndrome Retraction Is Wide]
*Dec 26, 2011 - [http://www.nytimes.com/2011/12/27/health/research/scholars-retract-another-study-linking-xmrv-to-chronic-fatigue-syndrome.html Scholars Retract Another Study Linking Virus to Fatigue Syndrome]
*Dec 22, 2011 - [http://www.nytimes.com/2011/12/23/health/research/science-journal-retracts-chronic-fatigue-syndrome-paper.html?ref=research Fatigue Syndrome Study Is Retracted by Journal]
*Sep 22, 2011 - [http://www.nytimes.com/2011/09/23/health/research/23fatigue.html Viral Theory Is Set Back in Chronic Fatigue Syndrome Study]
*Jun 1, 2011 - [http://www.nytimes.com/2011/06/01/health/research/01fatigue.html?_r=1 2 Studies Examine Syndrome of Fatigue]
*Mar 4, 2011 - [http://www.nytimes.com/2011/03/08/health/research/08fatigue.html Defining an Illness Is Fodder for Debate]
*Feb 17, 2011 - [http://www.nytimes.com/2011/02/18/health/research/18fatigue.html Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds]
*Jan 3, 2011 - [http://www.nytimes.com/2011/01/04/health/04fatigue.html Exhausted by Illness, and Doubts]
*Aug 24, 2010 - [http://query.nytimes.com/gst/fullpage.html?res=9C00E4DB1439F937A1575BC0A9669D8B63 Study Links Chronic Fatigue to Virus Class]
*May 30, 2008 - [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-expert.html Learning Firsthand About Chronic Fatigue Syndrome]
*May 30, 2008 - [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-questions.html What to Ask About Chronic Fatigue Syndrome]
*Jul 17, 2007 - [http://www.nytimes.com/2007/07/17/science/17fatigue.html Chronic Fatigue No Longer Seen as 'Yuppie Flu']

'''Other print media'''
*Oct 27, 2016 - [http://undark.org/article/chronic-fatigue-graded-exercise-pace/ Worse Than the Disease] ''Undark''
*Nov 18, 2015 - [http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped Reporter Excoriates Chronic Fatigue Syndrome Study: "I Stopped at 14,000 Words-Enough Was Enough"] ''California Magazine''
*Jan 27, 2014 - [http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome#.tnegBjJ82 How 'Chronic Fatigue Syndrome' Obscures A Serious Illness] ''Buzzfeed''

==Online presence==
*[http://www.twitter.com/davidtuller1 Twitter]
*[https://www.crowdrise.com/virology-blogs-trial-by-error-more-reporting-on-pace-mecfs-and-related-issues1/fundraiser/davidtuller?utm_source=dash-gtwo-cr&utm_platform=twt&utm_device=desktop Crowdrise] Virology Blog's Trial By Error: Reporting on PACE, ME/CFS and Related Issues (2017)

==Learn more==
*[http://www.berkeleywellness.com/author/davidtullerdrph Berkeley Wellness - David Tuller]

==References==
<references>
</references>

[[Category:Journalists]][[Category:Advocates or allies]][[Category:Psychological paradigm critics]][[Category:PACE trial critics]]

David Tuller

2017-06-25T14:44:42Z

DxCFS:/* Online presence */ x

[[File:David tuller.jpg|right]]
'''David Tuller''', DrPh, is academic coordinator of [https://en.wikipedia.org/wiki/University_of_California%2C_Berkeley University of California, Berkeley]'s joint masters program in public health and journalism. He was a reporter and editor for ten years at the ''San Francisco Chronicle'', served as health editor at ''Salon.com'' and frequently writes about health for ''The New York Times''.<ref>[https://journalism.berkeley.edu/faculty/david_tuller/ University of California, Berkeley - Berkeley Journalism - David Tuller Bio]</ref>

He's an experienced public health activist with a background as an ACT UP/NY activist which included an arrest at the Wall Street demonstration in 1987.<ref>http://mpetrelis.blogspot.com/2013/05/jay-blotchers-act-up-friends-reunion-in.html</ref>

David Tuller covered the [[PACE trial]] results for ''The New York Times'' as health editor in February 2011. <ref> http://www.nytimes.com/2011/02/18/health/research/18fatigue.html </ref> However he became concerned about the trial and wrote a further article regarding case definitions which resulted in an immediate response from the PACE trial authors which resulted him in investigating the trial and its authors further after contact with others in the patient community. <ref> http://www.nytimes.com/2011/03/08/health/research/08fatigue.html </ref> <ref> http://www.nytimes.com/2011/03/15/health/15letters-STUDYINGAFAT_LETTERS.html </ref>

Tuller is sympathetic toward the cause of the [[myalgic encephalomyelitis]]/[[chronic fatigue syndrome]] ([[ME/CFS]]) patient community. In an article in 2015 he wrote:

<blockquote>"In the course of my reporting, I’d realized that the disease was both devastating and widely misunderstood. People were really, really sick—some were homebound for months and years at a stretch. Yet their condition had been saddled with one of the most condescending names ever given a major illness."<ref>[http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped "Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough"]</ref></blockquote>

==Talks & interviews==
*May 31, 2017 - [[Virology blog]] Podcast: [http://www.microbe.tv/twiv/twivs-tuller3/ TWiV Special: Trial by Error, Continued] David Tuller returns to discuss the continuing saga of the UK’s PACE trial for chronic fatigue syndrome, including the accusation that he is engaging in libelous blogging.

*Feb 20, 2017 - [[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]]

*Oct 29, 2016 - Undark Podcast [http://undark.org/2016/10/31/undark-podcast-chronic-fatigue/ #8: Worse Than the Disease] Dr. Tuller [[Graded Exercise Therapy]] (GET) commonly prescribed for chronic fatigue syndrome — one for which supporting research is now unraveling.

* Aug 21, 2016 - Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-403/ TWiV 403: It’s not easy being vaccine] Discussion with David Tuller regarding PACE trial at 00.17.38- 00.23.57.

*Jul 10, 2016 - Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error], Dr. Tuller speaks at length and in detail about the [[PACE trial]] (calling the PACE Trial preposterous and a pack of nonsense, and a piece of crap) and [[FINE trial]], ''[[The Lancet]]'', ''[[British Medical Journal]]'' (BMJ) and ''[[PLOS ONE]]'', patients being ill yet deconstructing the PACE Trial, how [[ME/CFS]] is a disease being treated inappropriately with [[Exercise]], [[GET]] and [[CBT]], touches on the [[Institute of Medicine report]] and [[SEID]], [[Valerie Eliot Smith]] and [[Karina Hansen]], and more.<ref>[http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error]</ref>

*Feb 28, 2016 - [https://www.youtube.com/watch?v=1fS6Gzc52VI Speech on PACE Trial with Q&As] in Amsterdam.

*Feb 27, 2016 - [https://www.youtube.com/watch?v=UN1bYhkDHA4&feature=youtu.be Discussed the flaws of the Pace trial] with [[Frank Twisk]] while in Amsterdam at The [[Forgotten Plague]] Conference.

*Feb 6, 2011 - Virology blog podcast: [http://www.twiv.tv/2011/02/06/twiv-119-science-and-journalism-with-david-tuller/ TWiV 119: Science and journalism with David Tuller]. Dr. Tuller appeared as a guest on [[Vincent Racaniello]]'s podcast.

==Awards==
*2016, [[IACFS/ME]] Special Service Award - for outstanding personal effort and contribution to the CFS/ME community
*2016, [[Tymes Trust]] Award for Scientific Journalism<ref>https://www.facebook.com/tymestrust/photos/pb.1482582732026864.-2207520000.1477637753./1823344051284062/?type=3&theater</ref>

==Writings about ME/CFS==
'''Virology Blog'''
*Jun 24, 2017 - [http://www.virology.ws/2017/06/24/trial-by-error-continued-is-pace-a-case-of-research-misconduct/ Trial by Error, Continued: Is PACE a Case of Research Misconduct?]
*May 22, 2017 - [http://www.virology.ws/2017/05/22/trial-by-error-continued-me-research-uk-drops-out-of-cmrc/ Trial By Error, Continued: ME Research UK Drops Out of CMRC]
*May 15 2017 - [http://www.virology.ws/2017/05/15/trial-by-error-continued-the-cmrc-affirms-full-support-for-libelous-esther/ Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Esther]
*May 10 2017 - [http://www.virology.ws/2017/05/10/trial-by-error-continued-cmrc-to-virology-blog-fk-off/ Trial By Error, Continued: CMRC to Virology Blog: 'F**k Off!']
*May 8 2017 - [http://www.virology.ws/2017/05/08/trial-by-error-continued-an-open-letter-to-the-board-of-the-cfsme-research-collaborative/ Trial By Error, Continued: An Open Letter to the Board of the CFS/ME Research Collaborative]
*May 3, 2017 - [http://www.virology.ws/2017/05/03/trial-by-error-continued-my-libelous-blogging-on-virology-blog/ Trial By Error, Continued: My Libelous Blogging on Virology Blog]
*Mar 23, 2017 - [http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/ An open letter to Psychological Medicine, again!]
*Mar 13, 2017 - [http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/ An open letter to Psychological Medicine about “recovery” and the PACE trial]
*Nov 28, 2016 - [http://www.virology.ws/2016/11/28/trial-by-error-continued-a-follow-up-post-on-fitnet-nhs/ Trial By Error, Continued: A Follow-Up Post on FITNET-NHS]
*Nov 21, 2016 - [http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/ Trial By Error, Continued: The New FITNET Trial for Kids]
*Sep 22, 2016 - [http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ Trial By Error, Continued: The Real Data]
*Sep 1, 2016 - [http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ Trial By Error, Continued: My Questions for Lancet Editor Richard Horton]
*Aug 29, 2016 - [http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ Once Again, Lancet Stumbles on PACE]
*Feb 1, 2016 - [http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/ Trial By Error, Continued: A Few Words About 'Harassment']
*Jan 19, 2016 - [http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/ Trial By Error, Continued: More Nonsense from The Lancet Psychiatry]
*Jan 7, 2016 - [http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/ Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?] (coauthored by [[Julie Rehmeyer]])
*Jan 4, 2016 - [http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/ Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues]
*Dec 22, 2015 - [http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/ Revisiting the PLoS One economics analysis of PACE]
*Dec 17, 2015 - [http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/ A request for data from the PACE trial]
*Nov 17, 2015 - [http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?]
*Nov 13, 2015 - [http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/ An open letter to Dr. Richard Horton and The Lancet]
*Nov 9, 2015 - [http://www.virology.ws/2015/11/09/trial-by-error-continued-why-has-the-pace-studys-sister-trial-been-disappeared-and-forgotten/ Trial By Error, Continued: Why has the PACE Study’s Sister Trial been Disappeared and Forgotten?]
*Nov 4, 2015 - [http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/ Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?]
*Oct 30, 2015 - [http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/ David Tuller responds to the PACE Investigators]
*Oct 30, 2015 - [http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/ PACE trial investigators respond to David Tuller]
*Oct 23, 2015 - [http://www.virology.ws/2015/10/23/trial-by-error-iii/ TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (final installment)]
*Oct 22, 2015 - [http://www.virology.ws/2015/10/22/trial-by-error-ii/ TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second installment)]
*Oct 21, 2015 - [http://www.virology.ws/2015/10/21/trial-by-error-i/ TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study]
*Nov 23, 2011 - [http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/ Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale]

'''The New York Times'''
*Mar 18, 2017 - [https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?smid=tw-share&_r=0 Getting It Wrong on Chronic Fatigue Syndrome] (with [[Julie Rehmeyer]]) and Letters of response' [https://mobile.nytimes.com/2017/03/27/opinion/understanding-and-treating-chronic-fatigue.html?em_pos=small&emc=edit_ty_20170327&nl=opinion-today&nl_art=14&nlid=77538787&ref=headline&te=1&referer= Letters - The New York Times]
*Feb 10, 2015 - [http://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/ Chronic Fatigue Syndrome Gets a New Name]
*Nov 24, 2014 - [[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)]]
*Sep 18, 2012 - [http://well.blogs.nytimes.com/2012/09/18/chronic-fatigue-syndrome-back-to-square-1/ Chronic Fatigue Syndrome Back to Square 1]
*Feb 6, 2012 - [http://www.nytimes.com/2012/02/07/health/fallout-from-fatigue-syndrome-retraction-is-far-and-wide.html?pagewanted=1&_r=1 Fallout From Fatigue Syndrome Retraction Is Wide]
*Dec 26, 2011 - [http://www.nytimes.com/2011/12/27/health/research/scholars-retract-another-study-linking-xmrv-to-chronic-fatigue-syndrome.html Scholars Retract Another Study Linking Virus to Fatigue Syndrome]
*Dec 22, 2011 - [http://www.nytimes.com/2011/12/23/health/research/science-journal-retracts-chronic-fatigue-syndrome-paper.html?ref=research Fatigue Syndrome Study Is Retracted by Journal]
*Sep 22, 2011 - [http://www.nytimes.com/2011/09/23/health/research/23fatigue.html Viral Theory Is Set Back in Chronic Fatigue Syndrome Study]
*Jun 1, 2011 - [http://www.nytimes.com/2011/06/01/health/research/01fatigue.html?_r=1 2 Studies Examine Syndrome of Fatigue]
*Mar 4, 2011 - [http://www.nytimes.com/2011/03/08/health/research/08fatigue.html Defining an Illness Is Fodder for Debate]
*Feb 17, 2011 - [http://www.nytimes.com/2011/02/18/health/research/18fatigue.html Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds]
*Jan 3, 2011 - [http://www.nytimes.com/2011/01/04/health/04fatigue.html Exhausted by Illness, and Doubts]
*Aug 24, 2010 - [http://query.nytimes.com/gst/fullpage.html?res=9C00E4DB1439F937A1575BC0A9669D8B63 Study Links Chronic Fatigue to Virus Class]
*May 30, 2008 - [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-expert.html Learning Firsthand About Chronic Fatigue Syndrome]
*May 30, 2008 - [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-questions.html What to Ask About Chronic Fatigue Syndrome]
*Jul 17, 2007 - [http://www.nytimes.com/2007/07/17/science/17fatigue.html Chronic Fatigue No Longer Seen as 'Yuppie Flu']

'''Other print media'''
*Oct 27, 2016 - [http://undark.org/article/chronic-fatigue-graded-exercise-pace/ Worse Than the Disease] ''Undark''
*Nov 18, 2015 - [http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped Reporter Excoriates Chronic Fatigue Syndrome Study: "I Stopped at 14,000 Words-Enough Was Enough"] ''California Magazine''
*Jan 27, 2014 - [http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome#.tnegBjJ82 How 'Chronic Fatigue Syndrome' Obscures A Serious Illness] ''Buzzfeed''

==Online presence==
*[http://www.twitter.com/davidtuller1 Twitter]
*[https://www.crowdrise.com/virology-blogs-trial-by-error-more-reporting-on-pace-mecfs-and-related-issues1/fundraiser/davidtuller?utm_source=dash-gtwo-cr&utm_platform=twt&utm_device=desktop Crowdrise] Virology Blog's Trial By Error: Reporting on PACE, ME/CFS and Related Issues (2017)

==Learn more==
*[http://www.berkeleywellness.com/author/davidtullerdrph Berkeley Wellness - David Tuller]

==References==
<references>
</references>

[[Category:Journalists]][[Category:Advocates or allies]][[Category:Psychological paradigm critics]][[Category:PACE trial critics]]

David Tuller

2017-06-25T14:33:40Z

DxCFS:/* Writings about ME/CFS */ Formatting Titles

[[File:David tuller.jpg|right]]
'''David Tuller''', DrPh, is academic coordinator of [https://en.wikipedia.org/wiki/University_of_California%2C_Berkeley University of California, Berkeley]'s joint masters program in public health and journalism. He was a reporter and editor for ten years at the ''San Francisco Chronicle'', served as health editor at ''Salon.com'' and frequently writes about health for ''The New York Times''.<ref>[https://journalism.berkeley.edu/faculty/david_tuller/ University of California, Berkeley - Berkeley Journalism - David Tuller Bio]</ref>

He's an experienced public health activist with a background as an ACT UP/NY activist which included an arrest at the Wall Street demonstration in 1987.<ref>http://mpetrelis.blogspot.com/2013/05/jay-blotchers-act-up-friends-reunion-in.html</ref>

David Tuller covered the [[PACE trial]] results for ''The New York Times'' as health editor in February 2011. <ref> http://www.nytimes.com/2011/02/18/health/research/18fatigue.html </ref> However he became concerned about the trial and wrote a further article regarding case definitions which resulted in an immediate response from the PACE trial authors which resulted him in investigating the trial and its authors further after contact with others in the patient community. <ref> http://www.nytimes.com/2011/03/08/health/research/08fatigue.html </ref> <ref> http://www.nytimes.com/2011/03/15/health/15letters-STUDYINGAFAT_LETTERS.html </ref>

Tuller is sympathetic toward the cause of the [[myalgic encephalomyelitis]]/[[chronic fatigue syndrome]] ([[ME/CFS]]) patient community. In an article in 2015 he wrote:

<blockquote>"In the course of my reporting, I’d realized that the disease was both devastating and widely misunderstood. People were really, really sick—some were homebound for months and years at a stretch. Yet their condition had been saddled with one of the most condescending names ever given a major illness."<ref>[http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped "Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough"]</ref></blockquote>

==Talks & interviews==
*May 31, 2017 - [[Virology blog]] Podcast: [http://www.microbe.tv/twiv/twivs-tuller3/ TWiV Special: Trial by Error, Continued] David Tuller returns to discuss the continuing saga of the UK’s PACE trial for chronic fatigue syndrome, including the accusation that he is engaging in libelous blogging.

*Feb 20, 2017 - [[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]]

*Oct 29, 2016 - Undark Podcast [http://undark.org/2016/10/31/undark-podcast-chronic-fatigue/ #8: Worse Than the Disease] Dr. Tuller [[Graded Exercise Therapy]] (GET) commonly prescribed for chronic fatigue syndrome — one for which supporting research is now unraveling.

* Aug 21, 2016 - Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-403/ TWiV 403: It’s not easy being vaccine] Discussion with David Tuller regarding PACE trial at 00.17.38- 00.23.57.

*Jul 10, 2016 - Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error], Dr. Tuller speaks at length and in detail about the [[PACE trial]] (calling the PACE Trial preposterous and a pack of nonsense, and a piece of crap) and [[FINE trial]], ''[[The Lancet]]'', ''[[British Medical Journal]]'' (BMJ) and ''[[PLOS ONE]]'', patients being ill yet deconstructing the PACE Trial, how [[ME/CFS]] is a disease being treated inappropriately with [[Exercise]], [[GET]] and [[CBT]], touches on the [[Institute of Medicine report]] and [[SEID]], [[Valerie Eliot Smith]] and [[Karina Hansen]], and more.<ref>[http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error]</ref>

*Feb 28, 2016 - [https://www.youtube.com/watch?v=1fS6Gzc52VI Speech on PACE Trial with Q&As] in Amsterdam.

*Feb 27, 2016 - [https://www.youtube.com/watch?v=UN1bYhkDHA4&feature=youtu.be Discussed the flaws of the Pace trial] with [[Frank Twisk]] while in Amsterdam at The [[Forgotten Plague]] Conference.

*Feb 6, 2011 - Virology blog podcast: [http://www.twiv.tv/2011/02/06/twiv-119-science-and-journalism-with-david-tuller/ TWiV 119: Science and journalism with David Tuller]. Dr. Tuller appeared as a guest on [[Vincent Racaniello]]'s podcast.

==Awards==
*2016, [[IACFS/ME]] Special Service Award - for outstanding personal effort and contribution to the CFS/ME community
*2016, [[Tymes Trust]] Award for Scientific Journalism<ref>https://www.facebook.com/tymestrust/photos/pb.1482582732026864.-2207520000.1477637753./1823344051284062/?type=3&theater</ref>

==Writings about ME/CFS==
'''Virology Blog'''
*Jun 24, 2017 - [http://www.virology.ws/2017/06/24/trial-by-error-continued-is-pace-a-case-of-research-misconduct/ Trial by Error, Continued: Is PACE a Case of Research Misconduct?]
*May 22, 2017 - [http://www.virology.ws/2017/05/22/trial-by-error-continued-me-research-uk-drops-out-of-cmrc/ Trial By Error, Continued: ME Research UK Drops Out of CMRC]
*May 15 2017 - [http://www.virology.ws/2017/05/15/trial-by-error-continued-the-cmrc-affirms-full-support-for-libelous-esther/ Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Esther]
*May 10 2017 - [http://www.virology.ws/2017/05/10/trial-by-error-continued-cmrc-to-virology-blog-fk-off/ Trial By Error, Continued: CMRC to Virology Blog: 'F**k Off!']
*May 8 2017 - [http://www.virology.ws/2017/05/08/trial-by-error-continued-an-open-letter-to-the-board-of-the-cfsme-research-collaborative/ Trial By Error, Continued: An Open Letter to the Board of the CFS/ME Research Collaborative]
*May 3, 2017 - [http://www.virology.ws/2017/05/03/trial-by-error-continued-my-libelous-blogging-on-virology-blog/ Trial By Error, Continued: My Libelous Blogging on Virology Blog]
*Mar 23, 2017 - [http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/ An open letter to Psychological Medicine, again!]
*Mar 13, 2017 - [http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/ An open letter to Psychological Medicine about “recovery” and the PACE trial]
*Nov 28, 2016 - [http://www.virology.ws/2016/11/28/trial-by-error-continued-a-follow-up-post-on-fitnet-nhs/ Trial By Error, Continued: A Follow-Up Post on FITNET-NHS]
*Nov 21, 2016 - [http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/ Trial By Error, Continued: The New FITNET Trial for Kids]
*Sep 22, 2016 - [http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ Trial By Error, Continued: The Real Data]
*Sep 1, 2016 - [http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ Trial By Error, Continued: My Questions for Lancet Editor Richard Horton]
*Aug 29, 2016 - [http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ Once Again, Lancet Stumbles on PACE]
*Feb 1, 2016 - [http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/ Trial By Error, Continued: A Few Words About 'Harassment']
*Jan 19, 2016 - [http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/ Trial By Error, Continued: More Nonsense from The Lancet Psychiatry]
*Jan 7, 2016 - [http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/ Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?] (coauthored by [[Julie Rehmeyer]])
*Jan 4, 2016 - [http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/ Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues]
*Dec 22, 2015 - [http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/ Revisiting the PLoS One economics analysis of PACE]
*Dec 17, 2015 - [http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/ A request for data from the PACE trial]
*Nov 17, 2015 - [http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?]
*Nov 13, 2015 - [http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/ An open letter to Dr. Richard Horton and The Lancet]
*Nov 9, 2015 - [http://www.virology.ws/2015/11/09/trial-by-error-continued-why-has-the-pace-studys-sister-trial-been-disappeared-and-forgotten/ Trial By Error, Continued: Why has the PACE Study’s Sister Trial been Disappeared and Forgotten?]
*Nov 4, 2015 - [http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/ Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?]
*Oct 30, 2015 - [http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/ David Tuller responds to the PACE Investigators]
*Oct 30, 2015 - [http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/ PACE trial investigators respond to David Tuller]
*Oct 23, 2015 - [http://www.virology.ws/2015/10/23/trial-by-error-iii/ TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (final installment)]
*Oct 22, 2015 - [http://www.virology.ws/2015/10/22/trial-by-error-ii/ TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second installment)]
*Oct 21, 2015 - [http://www.virology.ws/2015/10/21/trial-by-error-i/ TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study]
*Nov 23, 2011 - [http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/ Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale]

'''The New York Times'''
*Mar 18, 2017 - [https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?smid=tw-share&_r=0 Getting It Wrong on Chronic Fatigue Syndrome] (with [[Julie Rehmeyer]]) and Letters of response' [https://mobile.nytimes.com/2017/03/27/opinion/understanding-and-treating-chronic-fatigue.html?em_pos=small&emc=edit_ty_20170327&nl=opinion-today&nl_art=14&nlid=77538787&ref=headline&te=1&referer= Letters - The New York Times]
*Feb 10, 2015 - [http://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/ Chronic Fatigue Syndrome Gets a New Name]
*Nov 24, 2014 - [[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)]]
*Sep 18, 2012 - [http://well.blogs.nytimes.com/2012/09/18/chronic-fatigue-syndrome-back-to-square-1/ Chronic Fatigue Syndrome Back to Square 1]
*Feb 6, 2012 - [http://www.nytimes.com/2012/02/07/health/fallout-from-fatigue-syndrome-retraction-is-far-and-wide.html?pagewanted=1&_r=1 Fallout From Fatigue Syndrome Retraction Is Wide]
*Dec 26, 2011 - [http://www.nytimes.com/2011/12/27/health/research/scholars-retract-another-study-linking-xmrv-to-chronic-fatigue-syndrome.html Scholars Retract Another Study Linking Virus to Fatigue Syndrome]
*Dec 22, 2011 - [http://www.nytimes.com/2011/12/23/health/research/science-journal-retracts-chronic-fatigue-syndrome-paper.html?ref=research Fatigue Syndrome Study Is Retracted by Journal]
*Sep 22, 2011 - [http://www.nytimes.com/2011/09/23/health/research/23fatigue.html Viral Theory Is Set Back in Chronic Fatigue Syndrome Study]
*Jun 1, 2011 - [http://www.nytimes.com/2011/06/01/health/research/01fatigue.html?_r=1 2 Studies Examine Syndrome of Fatigue]
*Mar 4, 2011 - [http://www.nytimes.com/2011/03/08/health/research/08fatigue.html Defining an Illness Is Fodder for Debate]
*Feb 17, 2011 - [http://www.nytimes.com/2011/02/18/health/research/18fatigue.html Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds]
*Jan 3, 2011 - [http://www.nytimes.com/2011/01/04/health/04fatigue.html Exhausted by Illness, and Doubts]
*Aug 24, 2010 - [http://query.nytimes.com/gst/fullpage.html?res=9C00E4DB1439F937A1575BC0A9669D8B63 Study Links Chronic Fatigue to Virus Class]
*May 30, 2008 - [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-expert.html Learning Firsthand About Chronic Fatigue Syndrome]
*May 30, 2008 - [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-questions.html What to Ask About Chronic Fatigue Syndrome]
*Jul 17, 2007 - [http://www.nytimes.com/2007/07/17/science/17fatigue.html Chronic Fatigue No Longer Seen as 'Yuppie Flu']

'''Other print media'''
*Oct 27, 2016 - [http://undark.org/article/chronic-fatigue-graded-exercise-pace/ Worse Than the Disease] ''Undark''
*Nov 18, 2015 - [http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped Reporter Excoriates Chronic Fatigue Syndrome Study: "I Stopped at 14,000 Words-Enough Was Enough"] ''California Magazine''
*Jan 27, 2014 - [http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome#.tnegBjJ82 How 'Chronic Fatigue Syndrome' Obscures A Serious Illness] ''Buzzfeed''

==Online presence==
*[http://www.twitter.com/davidtuller1 Twitter]
*[https://www.crowdrise.com/virology-blogs-trial-by-error-more-reporting-on-pace-mecfs-and-related-issues1/fundraiser/davidtuller?utm_source=dash-gtwo-cr&utm_platform=twt&utm_device=desktop Crowdrise] (2017) Virology Blog's Trial By Error: Reporting on PACE, ME/CFS and Related Issues

==Learn more==
*[http://www.berkeleywellness.com/author/davidtullerdrph Berkeley Wellness - David Tuller]

==References==
<references>
</references>

[[Category:Journalists]][[Category:Advocates or allies]][[Category:Psychological paradigm critics]][[Category:PACE trial critics]]

David Tuller

2017-06-25T14:25:22Z

DxCFS:/* Talks & interviews */ Format Dates

[[File:David tuller.jpg|right]]
'''David Tuller''', DrPh, is academic coordinator of [https://en.wikipedia.org/wiki/University_of_California%2C_Berkeley University of California, Berkeley]'s joint masters program in public health and journalism. He was a reporter and editor for ten years at the ''San Francisco Chronicle'', served as health editor at ''Salon.com'' and frequently writes about health for ''The New York Times''.<ref>[https://journalism.berkeley.edu/faculty/david_tuller/ University of California, Berkeley - Berkeley Journalism - David Tuller Bio]</ref>

He's an experienced public health activist with a background as an ACT UP/NY activist which included an arrest at the Wall Street demonstration in 1987.<ref>http://mpetrelis.blogspot.com/2013/05/jay-blotchers-act-up-friends-reunion-in.html</ref>

David Tuller covered the [[PACE trial]] results for ''The New York Times'' as health editor in February 2011. <ref> http://www.nytimes.com/2011/02/18/health/research/18fatigue.html </ref> However he became concerned about the trial and wrote a further article regarding case definitions which resulted in an immediate response from the PACE trial authors which resulted him in investigating the trial and its authors further after contact with others in the patient community. <ref> http://www.nytimes.com/2011/03/08/health/research/08fatigue.html </ref> <ref> http://www.nytimes.com/2011/03/15/health/15letters-STUDYINGAFAT_LETTERS.html </ref>

Tuller is sympathetic toward the cause of the [[myalgic encephalomyelitis]]/[[chronic fatigue syndrome]] ([[ME/CFS]]) patient community. In an article in 2015 he wrote:

<blockquote>"In the course of my reporting, I’d realized that the disease was both devastating and widely misunderstood. People were really, really sick—some were homebound for months and years at a stretch. Yet their condition had been saddled with one of the most condescending names ever given a major illness."<ref>[http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped "Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough"]</ref></blockquote>

==Talks & interviews==
*May 31, 2017 - [[Virology blog]] Podcast: [http://www.microbe.tv/twiv/twivs-tuller3/ TWiV Special: Trial by Error, Continued] David Tuller returns to discuss the continuing saga of the UK’s PACE trial for chronic fatigue syndrome, including the accusation that he is engaging in libelous blogging.

*Feb 20, 2017 - [[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]]

*Oct 29, 2016 - Undark Podcast [http://undark.org/2016/10/31/undark-podcast-chronic-fatigue/ #8: Worse Than the Disease] Dr. Tuller [[Graded Exercise Therapy]] (GET) commonly prescribed for chronic fatigue syndrome — one for which supporting research is now unraveling.

* Aug 21, 2016 - Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-403/ TWiV 403: It’s not easy being vaccine] Discussion with David Tuller regarding PACE trial at 00.17.38- 00.23.57.

*Jul 10, 2016 - Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error], Dr. Tuller speaks at length and in detail about the [[PACE trial]] (calling the PACE Trial preposterous and a pack of nonsense, and a piece of crap) and [[FINE trial]], ''[[The Lancet]]'', ''[[British Medical Journal]]'' (BMJ) and ''[[PLOS ONE]]'', patients being ill yet deconstructing the PACE Trial, how [[ME/CFS]] is a disease being treated inappropriately with [[Exercise]], [[GET]] and [[CBT]], touches on the [[Institute of Medicine report]] and [[SEID]], [[Valerie Eliot Smith]] and [[Karina Hansen]], and more.<ref>[http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error]</ref>

*Feb 28, 2016 - [https://www.youtube.com/watch?v=1fS6Gzc52VI Speech on PACE Trial with Q&As] in Amsterdam.

*Feb 27, 2016 - [https://www.youtube.com/watch?v=UN1bYhkDHA4&feature=youtu.be Discussed the flaws of the Pace trial] with [[Frank Twisk]] while in Amsterdam at The [[Forgotten Plague]] Conference.

*Feb 6, 2011 - Virology blog podcast: [http://www.twiv.tv/2011/02/06/twiv-119-science-and-journalism-with-david-tuller/ TWiV 119: Science and journalism with David Tuller]. Dr. Tuller appeared as a guest on [[Vincent Racaniello]]'s podcast.

==Awards==
*2016, [[IACFS/ME]] Special Service Award - for outstanding personal effort and contribution to the CFS/ME community
*2016, [[Tymes Trust]] Award for Scientific Journalism<ref>https://www.facebook.com/tymestrust/photos/pb.1482582732026864.-2207520000.1477637753./1823344051284062/?type=3&theater</ref>

==Writings about ME/CFS==
'''Virology Blog'''
*Jun 24, 2017 - [http://www.virology.ws/2017/06/24/trial-by-error-continued-is-pace-a-case-of-research-misconduct/ Trial by Error, Continued: Is PACE a Case of Research Misconduct?]
*May 22, 2017 - [http://www.virology.ws/2017/05/22/trial-by-error-continued-me-research-uk-drops-out-of-cmrc/ "Trial By Error, Continued: ME Research UK Drops Out of CMRC"]
*May 15 2017 - [http://www.virology.ws/2017/05/15/trial-by-error-continued-the-cmrc-affirms-full-support-for-libelous-esther/ "Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Esther"]
*May 10 2017 - [http://www.virology.ws/2017/05/10/trial-by-error-continued-cmrc-to-virology-blog-fk-off/ "Trial By Error, Continued: CMRC to Virology Blog: 'F**k Off!'"]
*May 8 2017 - [http://www.virology.ws/2017/05/08/trial-by-error-continued-an-open-letter-to-the-board-of-the-cfsme-research-collaborative/ "Trial By Error, Continued: An Open Letter to the Board of the CFS/ME Research Collaborative"]
*May 3, 2017 - [http://www.virology.ws/2017/05/03/trial-by-error-continued-my-libelous-blogging-on-virology-blog/ "Trial By Error, Continued: My Libelous Blogging on Virology Blog"]
*Mar 23, 2017 - [http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/ "An open letter to Psychological Medicine, again!"]
*Mar 13, 2017 - [http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/ "An open letter to Psychological Medicine about “recovery” and the PACE trial"]
*Nov 28, 2016 - [http://www.virology.ws/2016/11/28/trial-by-error-continued-a-follow-up-post-on-fitnet-nhs/ "Trial By Error, Continued: A Follow-Up Post on FITNET-NHS"]
*Nov 21, 2016 - [http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/ "Trial By Error, Continued: The New FITNET Trial for Kids"]
*Sep 22, 2016 - [http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ "Trial By Error, Continued: The Real Data"]
*Sep 1, 2016 - [http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ "Trial By Error, Continued: My Questions for Lancet Editor Richard Horton"]
*Aug 29, 2016 - [http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ "Once Again, Lancet Stumbles on PACE"]
*Feb 1, 2016 - [http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/ "Trial By Error, Continued: A Few Words About 'Harassment'"]
*Jan 19, 2016 - [http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/ "Trial By Error, Continued: More Nonsense from The Lancet Psychiatry"]
*Jan 7, 2016 - [http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/ "Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?"] (coauthored by [[Julie Rehmeyer]])
*Jan 4, 2016 - [http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/ "Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues"]
*Dec 22, 2015 - [http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/ "Revisiting the PLoS One economics analysis of PACE"]
*Dec 17, 2015 - [http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/ "A request for data from the PACE trial"]
*Nov 17, 2015 - [http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ "Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?"]
*Nov 13, 2015 - [http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/ "An open letter to Dr. Richard Horton and The Lancet"]
*Nov 9, 2015 - [http://www.virology.ws/2015/11/09/trial-by-error-continued-why-has-the-pace-studys-sister-trial-been-disappeared-and-forgotten/ "Trial By Error, Continued: Why has the PACE Study’s Sister Trial been Disappeared and Forgotten?"]
*Nov 4, 2015 - [http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/ "Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?"]
*Oct 30, 2015 - [http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/ "David Tuller responds to the PACE Investigators"]
*Oct 30, 2015 - [http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/ "PACE trial investigators respond to David Tuller"]
*Oct 23, 2015 - [http://www.virology.ws/2015/10/23/trial-by-error-iii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (final installment)"]
*Oct 22, 2015 - [http://www.virology.ws/2015/10/22/trial-by-error-ii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second installment)"]
*Oct 21, 2015 - [http://www.virology.ws/2015/10/21/trial-by-error-i/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study"]
*Nov 23, 2011 - [http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/ "Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale"]

'''The New York Times'''
*Mar 18, 2017 - [https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?smid=tw-share&_r=0 "Getting It Wrong on Chronic Fatigue Syndrome"] (with [[Julie Rehmeyer]]) and Letters of response' [https://mobile.nytimes.com/2017/03/27/opinion/understanding-and-treating-chronic-fatigue.html?em_pos=small&emc=edit_ty_20170327&nl=opinion-today&nl_art=14&nlid=77538787&ref=headline&te=1&referer= Letters - The New York Times]
*Feb 10, 2015 - [http://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/ "Chronic Fatigue Syndrome Gets a New Name"]
*Nov 24, 2014 - [[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)]]
*Sep 18, 2012 - [http://well.blogs.nytimes.com/2012/09/18/chronic-fatigue-syndrome-back-to-square-1/ "Chronic Fatigue Syndrome Back to Square 1"]
*Feb 6, 2012 - [http://www.nytimes.com/2012/02/07/health/fallout-from-fatigue-syndrome-retraction-is-far-and-wide.html?pagewanted=1&_r=1 "Fallout From Fatigue Syndrome Retraction Is Wide"]
*Dec 26, 2011 - [http://www.nytimes.com/2011/12/27/health/research/scholars-retract-another-study-linking-xmrv-to-chronic-fatigue-syndrome.html "Scholars Retract Another Study Linking Virus to Fatigue Syndrome"]
*Dec 22, 2011 - [http://www.nytimes.com/2011/12/23/health/research/science-journal-retracts-chronic-fatigue-syndrome-paper.html?ref=research "Fatigue Syndrome Study Is Retracted by Journal"]
*Sep 22, 2011 - [http://www.nytimes.com/2011/09/23/health/research/23fatigue.html "Viral Theory Is Set Back in Chronic Fatigue Syndrome Study"]
*Jun 1, 2011 - [http://www.nytimes.com/2011/06/01/health/research/01fatigue.html?_r=1 "2 Studies Examine Syndrome of Fatigue"]
*Mar 4, 2011 - [http://www.nytimes.com/2011/03/08/health/research/08fatigue.html "Defining an Illness Is Fodder for Debate"]
*Feb 17, 2011 - [http://www.nytimes.com/2011/02/18/health/research/18fatigue.html "Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds"]
*Jan 3, 2011 - [http://www.nytimes.com/2011/01/04/health/04fatigue.html "Exhausted by Illness, and Doubts"]
*Aug 24, 2010 - [http://query.nytimes.com/gst/fullpage.html?res=9C00E4DB1439F937A1575BC0A9669D8B63 "Study Links Chronic Fatigue to Virus Class"]
*May 30, 2008 - [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-expert.html "Learning Firsthand About Chronic Fatigue Syndrome"]
*May 30, 2008 - [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-questions.html "What to Ask About Chronic Fatigue Syndrome"]
*Jul 17, 2007 - [http://www.nytimes.com/2007/07/17/science/17fatigue.html "Chronic Fatigue No Longer Seen as 'Yuppie Flu'"]

'''Other print media'''
*Oct 27, 2016 - [http://undark.org/article/chronic-fatigue-graded-exercise-pace/ "Worse Than the Disease" in ''Undark'']
*Nov 18, 2015 - [http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped "Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough" in ''California Magazine'']
*Jan 27, 2014 - [http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome#.tnegBjJ82 "How 'Chronic Fatigue Syndrome' Obscures A Serious Illness" in ''Buzzfeed'']

==Online presence==
*[http://www.twitter.com/davidtuller1 Twitter]
*[https://www.crowdrise.com/virology-blogs-trial-by-error-more-reporting-on-pace-mecfs-and-related-issues1/fundraiser/davidtuller?utm_source=dash-gtwo-cr&utm_platform=twt&utm_device=desktop Crowdrise] (2017) Virology Blog's Trial By Error: Reporting on PACE, ME/CFS and Related Issues

==Learn more==
*[http://www.berkeleywellness.com/author/davidtullerdrph Berkeley Wellness - David Tuller]

==References==
<references>
</references>

[[Category:Journalists]][[Category:Advocates or allies]][[Category:Psychological paradigm critics]][[Category:PACE trial critics]]

David Tuller

2017-06-25T14:23:28Z

DxCFS:/* Writings about ME/CFS */ Trial by Error, Continued: Is PACE a Case of Research Misconduct? - Format Dates

[[File:David tuller.jpg|right]]
'''David Tuller''', DrPh, is academic coordinator of [https://en.wikipedia.org/wiki/University_of_California%2C_Berkeley University of California, Berkeley]'s joint masters program in public health and journalism. He was a reporter and editor for ten years at the ''San Francisco Chronicle'', served as health editor at ''Salon.com'' and frequently writes about health for ''The New York Times''.<ref>[https://journalism.berkeley.edu/faculty/david_tuller/ University of California, Berkeley - Berkeley Journalism - David Tuller Bio]</ref>

He's an experienced public health activist with a background as an ACT UP/NY activist which included an arrest at the Wall Street demonstration in 1987.<ref>http://mpetrelis.blogspot.com/2013/05/jay-blotchers-act-up-friends-reunion-in.html</ref>

David Tuller covered the [[PACE trial]] results for ''The New York Times'' as health editor in February 2011. <ref> http://www.nytimes.com/2011/02/18/health/research/18fatigue.html </ref> However he became concerned about the trial and wrote a further article regarding case definitions which resulted in an immediate response from the PACE trial authors which resulted him in investigating the trial and its authors further after contact with others in the patient community. <ref> http://www.nytimes.com/2011/03/08/health/research/08fatigue.html </ref> <ref> http://www.nytimes.com/2011/03/15/health/15letters-STUDYINGAFAT_LETTERS.html </ref>

Tuller is sympathetic toward the cause of the [[myalgic encephalomyelitis]]/[[chronic fatigue syndrome]] ([[ME/CFS]]) patient community. In an article in 2015 he wrote:

<blockquote>"In the course of my reporting, I’d realized that the disease was both devastating and widely misunderstood. People were really, really sick—some were homebound for months and years at a stretch. Yet their condition had been saddled with one of the most condescending names ever given a major illness."<ref>[http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped "Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough"]</ref></blockquote>

==Talks & interviews==
*May 31 2017, [[Virology blog]] Podcast: [http://www.microbe.tv/twiv/twivs-tuller3/ TWiV Special: Trial by Error, Continued] David Tuller returns to discuss the continuing saga of the UK’s PACE trial for chronic fatigue syndrome, including the accusation that he is engaging in libelous blogging.

*Feb 20 2017, [[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]]

*Oct 29 2016, Undark Podcast [http://undark.org/2016/10/31/undark-podcast-chronic-fatigue/ #8: Worse Than the Disease] Dr. Tuller [[Graded Exercise Therapy]] (GET) commonly prescribed for chronic fatigue syndrome — one for which supporting research is now unraveling.

* Aug 21 2016, Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-403/ TWiV 403: It’s not easy being vaccine] Discussion with David Tuller regarding PACE trial at 00.17.38- 00.23.57.

*Jul 10 2016, Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error], Dr. Tuller speaks at length and in detail about the [[PACE trial]] (calling the PACE Trial preposterous and a pack of nonsense, and a piece of crap) and [[FINE trial]], ''[[The Lancet]]'', ''[[British Medical Journal]]'' (BMJ) and ''[[PLOS ONE]]'', patients being ill yet deconstructing the PACE Trial, how [[ME/CFS]] is a disease being treated inappropriately with [[Exercise]], [[GET]] and [[CBT]], touches on the [[Institute of Medicine report]] and [[SEID]], [[Valerie Eliot Smith]] and [[Karina Hansen]], and more.<ref>[http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error]</ref>

*Feb 28 2016, [https://www.youtube.com/watch?v=1fS6Gzc52VI Speech on PACE Trial with Q&As] in Amsterdam.

*Feb 27 2016, [https://www.youtube.com/watch?v=UN1bYhkDHA4&feature=youtu.be Discussed the flaws of the Pace trial] with [[Frank Twisk]] while in Amsterdam at The [[Forgotten Plague]] Conference.

*Feb 6 2011, Virology blog podcast: [http://www.twiv.tv/2011/02/06/twiv-119-science-and-journalism-with-david-tuller/ TWiV 119: Science and journalism with David Tuller]. Dr. Tuller appeared as a guest on [[Vincent Racaniello]]'s podcast.

==Awards==
*2016, [[IACFS/ME]] Special Service Award - for outstanding personal effort and contribution to the CFS/ME community
*2016, [[Tymes Trust]] Award for Scientific Journalism<ref>https://www.facebook.com/tymestrust/photos/pb.1482582732026864.-2207520000.1477637753./1823344051284062/?type=3&theater</ref>

==Writings about ME/CFS==
'''Virology Blog'''
*Jun 24, 2017 - [http://www.virology.ws/2017/06/24/trial-by-error-continued-is-pace-a-case-of-research-misconduct/ Trial by Error, Continued: Is PACE a Case of Research Misconduct?]
*May 22, 2017 - [http://www.virology.ws/2017/05/22/trial-by-error-continued-me-research-uk-drops-out-of-cmrc/ "Trial By Error, Continued: ME Research UK Drops Out of CMRC"]
*May 15 2017 - [http://www.virology.ws/2017/05/15/trial-by-error-continued-the-cmrc-affirms-full-support-for-libelous-esther/ "Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Esther"]
*May 10 2017 - [http://www.virology.ws/2017/05/10/trial-by-error-continued-cmrc-to-virology-blog-fk-off/ "Trial By Error, Continued: CMRC to Virology Blog: 'F**k Off!'"]
*May 8 2017 - [http://www.virology.ws/2017/05/08/trial-by-error-continued-an-open-letter-to-the-board-of-the-cfsme-research-collaborative/ "Trial By Error, Continued: An Open Letter to the Board of the CFS/ME Research Collaborative"]
*May 3, 2017 - [http://www.virology.ws/2017/05/03/trial-by-error-continued-my-libelous-blogging-on-virology-blog/ "Trial By Error, Continued: My Libelous Blogging on Virology Blog"]
*Mar 23, 2017 - [http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/ "An open letter to Psychological Medicine, again!"]
*Mar 13, 2017 - [http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/ "An open letter to Psychological Medicine about “recovery” and the PACE trial"]
*Nov 28, 2016 - [http://www.virology.ws/2016/11/28/trial-by-error-continued-a-follow-up-post-on-fitnet-nhs/ "Trial By Error, Continued: A Follow-Up Post on FITNET-NHS"]
*Nov 21, 2016 - [http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/ "Trial By Error, Continued: The New FITNET Trial for Kids"]
*Sep 22, 2016 - [http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ "Trial By Error, Continued: The Real Data"]
*Sep 1, 2016 - [http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ "Trial By Error, Continued: My Questions for Lancet Editor Richard Horton"]
*Aug 29, 2016 - [http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ "Once Again, Lancet Stumbles on PACE"]
*Feb 1, 2016 - [http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/ "Trial By Error, Continued: A Few Words About 'Harassment'"]
*Jan 19, 2016 - [http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/ "Trial By Error, Continued: More Nonsense from The Lancet Psychiatry"]
*Jan 7, 2016 - [http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/ "Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?"] (coauthored by [[Julie Rehmeyer]])
*Jan 4, 2016 - [http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/ "Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues"]
*Dec 22, 2015 - [http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/ "Revisiting the PLoS One economics analysis of PACE"]
*Dec 17, 2015 - [http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/ "A request for data from the PACE trial"]
*Nov 17, 2015 - [http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ "Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?"]
*Nov 13, 2015 - [http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/ "An open letter to Dr. Richard Horton and The Lancet"]
*Nov 9, 2015 - [http://www.virology.ws/2015/11/09/trial-by-error-continued-why-has-the-pace-studys-sister-trial-been-disappeared-and-forgotten/ "Trial By Error, Continued: Why has the PACE Study’s Sister Trial been Disappeared and Forgotten?"]
*Nov 4, 2015 - [http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/ "Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?"]
*Oct 30, 2015 - [http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/ "David Tuller responds to the PACE Investigators"]
*Oct 30, 2015 - [http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/ "PACE trial investigators respond to David Tuller"]
*Oct 23, 2015 - [http://www.virology.ws/2015/10/23/trial-by-error-iii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (final installment)"]
*Oct 22, 2015 - [http://www.virology.ws/2015/10/22/trial-by-error-ii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second installment)"]
*Oct 21, 2015 - [http://www.virology.ws/2015/10/21/trial-by-error-i/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study"]
*Nov 23, 2011 - [http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/ "Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale"]

'''The New York Times'''
*Mar 18, 2017 - [https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?smid=tw-share&_r=0 "Getting It Wrong on Chronic Fatigue Syndrome"] (with [[Julie Rehmeyer]]) and Letters of response' [https://mobile.nytimes.com/2017/03/27/opinion/understanding-and-treating-chronic-fatigue.html?em_pos=small&emc=edit_ty_20170327&nl=opinion-today&nl_art=14&nlid=77538787&ref=headline&te=1&referer= Letters - The New York Times]
*Feb 10, 2015 - [http://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/ "Chronic Fatigue Syndrome Gets a New Name"]
*Nov 24, 2014 - [[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)]]
*Sep 18, 2012 - [http://well.blogs.nytimes.com/2012/09/18/chronic-fatigue-syndrome-back-to-square-1/ "Chronic Fatigue Syndrome Back to Square 1"]
*Feb 6, 2012 - [http://www.nytimes.com/2012/02/07/health/fallout-from-fatigue-syndrome-retraction-is-far-and-wide.html?pagewanted=1&_r=1 "Fallout From Fatigue Syndrome Retraction Is Wide"]
*Dec 26, 2011 - [http://www.nytimes.com/2011/12/27/health/research/scholars-retract-another-study-linking-xmrv-to-chronic-fatigue-syndrome.html "Scholars Retract Another Study Linking Virus to Fatigue Syndrome"]
*Dec 22, 2011 - [http://www.nytimes.com/2011/12/23/health/research/science-journal-retracts-chronic-fatigue-syndrome-paper.html?ref=research "Fatigue Syndrome Study Is Retracted by Journal"]
*Sep 22, 2011 - [http://www.nytimes.com/2011/09/23/health/research/23fatigue.html "Viral Theory Is Set Back in Chronic Fatigue Syndrome Study"]
*Jun 1, 2011 - [http://www.nytimes.com/2011/06/01/health/research/01fatigue.html?_r=1 "2 Studies Examine Syndrome of Fatigue"]
*Mar 4, 2011 - [http://www.nytimes.com/2011/03/08/health/research/08fatigue.html "Defining an Illness Is Fodder for Debate"]
*Feb 17, 2011 - [http://www.nytimes.com/2011/02/18/health/research/18fatigue.html "Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds"]
*Jan 3, 2011 - [http://www.nytimes.com/2011/01/04/health/04fatigue.html "Exhausted by Illness, and Doubts"]
*Aug 24, 2010 - [http://query.nytimes.com/gst/fullpage.html?res=9C00E4DB1439F937A1575BC0A9669D8B63 "Study Links Chronic Fatigue to Virus Class"]
*May 30, 2008 - [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-expert.html "Learning Firsthand About Chronic Fatigue Syndrome"]
*May 30, 2008 - [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-questions.html "What to Ask About Chronic Fatigue Syndrome"]
*Jul 17, 2007 - [http://www.nytimes.com/2007/07/17/science/17fatigue.html "Chronic Fatigue No Longer Seen as 'Yuppie Flu'"]

'''Other print media'''
*Oct 27, 2016 - [http://undark.org/article/chronic-fatigue-graded-exercise-pace/ "Worse Than the Disease" in ''Undark'']
*Nov 18, 2015 - [http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped "Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough" in ''California Magazine'']
*Jan 27, 2014 - [http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome#.tnegBjJ82 "How 'Chronic Fatigue Syndrome' Obscures A Serious Illness" in ''Buzzfeed'']

==Online presence==
*[http://www.twitter.com/davidtuller1 Twitter]
*[https://www.crowdrise.com/virology-blogs-trial-by-error-more-reporting-on-pace-mecfs-and-related-issues1/fundraiser/davidtuller?utm_source=dash-gtwo-cr&utm_platform=twt&utm_device=desktop Crowdrise] (2017) Virology Blog's Trial By Error: Reporting on PACE, ME/CFS and Related Issues

==Learn more==
*[http://www.berkeleywellness.com/author/davidtullerdrph Berkeley Wellness - David Tuller]

==References==
<references>
</references>

[[Category:Journalists]][[Category:Advocates or allies]][[Category:Psychological paradigm critics]][[Category:PACE trial critics]]

Primer for family, friends and care providers

2017-06-25T14:13:33Z

DxCFS:x

'''Primer for family, friends and care providers''' is for those who know or care for someone with [[Myalgic Encephalomyelitis]]/[[Chronic Fatigue Syndrome]] (ME/CFS), a complicated and life-altering systemic, biological neuro-immune disease.<ref>[http://www.openmedicinefoundation.org/what-is-mecfs/ What is ME/CFS? - Open Medicine Foundation]</ref> Patient care and severity of the disease is poorly understood due to decades of research neglect and a lack of clinical care worldwide.<ref>[http://healthaffairs.org/blog/2016/02/04/reexamining-chronic-fatigue-syndrome-research-and-treatment-policy/ Reexamining Chronic Fatigue Syndrome Research And Treatment Policy - Health Affairs Blog By: David Tuller]</ref><ref>[http://www.meaction.net/2017/01/22/funding-for-me-research-centers-announced-falls-way-short/ Funding for ME Research Centers Announced Falls Way Short -#MEAction]</ref>

[[Chronic Fatigue Syndrome]] (CFS) is not [[Chronic Fatigue]]. It is not a psychiatric illness or "illness beliefs" which is the widely accepted hypothesis in the UK.<ref>[http://www.25megroup.org/infomedical_MWilliams_submission_DSM.html Submission re: DSM-V and ME/CFS 25% ME Group]</ref><ref>[https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?smid=tw-share Getting it Wrong on Chronic Fatigue Syndrome - New York Times By: Julie Rehmeyer and David Tuller]</ref> This has led to the use of [[Graded exercise therapy]] (GET), which can severely injure persons with [[ME/CFS]], and [[Cognitive behavioral therapy]] (CBT) that cannot treat a physiological disease. [[Exercise]] and exertion make patients worse triggering a myriad of chronic and disabling symptoms.<ref>[https://directorsblog.nih.gov/2017/03/21/moving-toward-answers-in-mecfs/ Moving Toward Answers in ME/CFS - NIH Director's Blog By Dr. Walter Koroshetz and Dr. Francis Collins]</ref><ref>[http://www.openmedicinefoundation.org/what-is-mecfs/ What is ME/CFS? - Open Medicine Foundation]</ref><ref>[http://solvecfs.org/what-is-mecfs/ Get the Facts about ME/CFS]</ref> The hallmark symptom is [[Post-exertional malaise]] (PEM).

ME/CFS affects up to 2.5 million Americans with estimates of 17 million worldwide.<ref>[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf ''Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts - Feb 2015'']</ref><ref>[http://www.meresearch.org.uk/news/how-many-people-have-mecfs/ How many people have ME/CFS - ME Research UK]</ref> "A quarter of all patients are entirely house-, bed- or wheelchair bound. One in ten dies prematurely due to major organ failure, [[cancer]], heart disease or [[suicide]]."<ref>[http://sacfs.asn.au/news/2013/10/10_08_fdas_voice_of_the_patient_report.htm FDA's Voice of the Patient Report on Chronic Fatigue Syndrome Reveals Disease Impact and Areas for Progress - ME/CFS Australia (SA) Inc - By: Pandora.org]</ref> In 2012, the [[Centers for Disease Control & Prevention]] (CDC) estimated less than 20% of Americans that have CFS were diagnosed.<ref>[https://www.cdc.gov/cfs/diagnosis/index.html Chronic Fatigue Syndrome - Diagnostic Challenges - CDC - 2012]</ref> Diagnosis can take years with a patient seeing several doctors before receiving a diagnosis. A 2008 [[ProHealth]] survey of 1,210 ME/CFS patients showed "29% had been ill from 6 to 20-plus years before being diagnosed."<ref>[http://www.prohealth.com/library/showarticle.cfm?libid=13672 A Profile of ME/CFS Patients - How Many Years and How Many Doctors?]</ref>

Diagnosing is difficult as there is no [[biomarker]] and there are numerous definitions and criteria that have been developed and utilized over the decades. ''See:'' [[Definitions of ME and CFS]].

== Disease onset and course of illness==
The disease [[ME/CFS]] is diagnosed when a person does not recover from a flu-like illness, [[EBV]], [[Mononucleosis]], [[HHV]], [[Q fever]], [[Virus]] or other infections and meets one or more diagnostic criteria for either ME, CFS or ME/CFS.<ref>[https://www.nap.edu/read/19012/chapter/7#157 IOM Report - INFECTION]</ref><ref>[http://www.cortjohnson.org/blog/2014/01/09/lipkin-study-vagus-nerve-hhv-6-loomis-hhv-6-foundation/ The Lipkin Study, The Vagus Nerve Infection Hypothesis and HHV-6: Kristin Loomis of the HHV-6 Foundation Talks – Pt. I - Health Rising - By: Cort Johnson - June 2014]</ref><ref>[http://me-pedia.org/wiki/Definitions_of_ME_and_CFS Definitions of ME and CFS - MEpedia]</ref> "Occasionally, ME/CFS has been triggered by environmental toxins, the receipt of an immunizing injection, or surviving a major trauma."<ref>[https://www.masscfids.org/images/pdf/Primer_2014.pdf Chronic Fatigue Syndrome Myalgic Encephalomyelitis - Primer for Clinical Practitioners - 2014 Edition - Massachusettes CFIDS/FM Assoc]</ref> Patient health is never the same and they experience numerous symptoms and disease severity which fluctuate day to day, week to week, month to month, year to year and decade to decade as well as varying symptoms and disease severity among patients.<ref>[http://www.meassociation.org.uk/about/the-symptoms-and-diagnosis-of-mecfs/ Symptoms and diagnosis of ME/CFS - ME Association]</ref><ref>[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref><ref>[http://phoenixrising.me/mecfs-basics/chronic-fatigue-syndrome-mecfs-facts-chronic-fatigue-syndrome-is-2 Facts (ME/CFS) Severity]</ref>

==== Pediatric ME/CFS ====
Children are also afflicted with ME/CFS.<ref>[http://www.openmedicinefoundation.org/2016/06/25/mecfs-in-children-by-dr-david-s-bell-2/ ME/CFS in Children - by David S. Bell, MD - Open Medicine Foundation]</ref><ref>[https://www.masscfids.org/pediatric-me-cfs-links Pediatric ME/CFS - Massachusetts CFIDS/ME FM Association]</ref> ''See'': [[Pediatric]].

==== Prognosis ====
Prognosis for ME/CFS is generally poor. ''See'': [[Prognosis]]

==== Female to male ratio ====
Like many auto-immune and neuro-immune diseases where mostly women are afflicted,<ref>[http://www.rightdiagnosis.com/artic/fact_sheet_autoimmune_disease_in_women_nwhic.htm Fact Sheet Autoimmune Disease in Women: NWHIC - Right Diagnosis - Aug 2015]</ref> the ME/CFS female/male patient ratio is 6:1.<ref>[https://www.ncbi.nlm.nih.gov/pubmed/21244747 Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010]</ref> [[Fibromyalgia]] has a F/M 7:1 ratio<ref>[http://emedicine.medscape.com/article/329838-overview#a5 Fibromyalgia:Epidemiology - Medscape]</ref> and some ME/CFS patients have this additional diagnosis.<ref>[http://www.cdc.gov/arthritis/basics/fibromyalgia.htm Fibromyalgia - CDC]</ref><ref>[http://solvecfs.org/what-is-mecfs/ What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative]</ref>

== Recommended viewing ==

==== Documentary ====
*[[Forgotten Plague]] is a US documentary about [[Ryan Prior]], an afflicted journalist who investigates the disease and its history and why the [[CDC]] has left millions sidelined from life; available for [http://www.forgottenplague.com/ streaming and DVD ''purchase'']. (2015)

*[[Unrest]] is a US documentary film that will air on PBS's Independent Lens in 2018. [[Jennifer Brea]], a person with [[ME]], directs. (2017)

==== Mini-doc & Short film ====
*[[Invisible Illness - Stories of Chronic Fatigue Syndrome]] is a [https://www.youtube.com/watch?v=9_HwOUiImvw Palo Alto Online, US Mini-Doc on Youtube]. It documents 3 people with [[CFS]] suffering from the same disease in varying degrees of illness. (2015)

*[[The Last Great Medical Cover Up]] is a [https://vimeo.com/143904110 UK short Film on Vimeo] with several patient interviews. (2015)

====Shorts ====
* #[[MillionsMissing]] provides a <5 min. short UK Video [http://millionsmissing.org/learn/?utm_content=bufferf61ee&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer 'What Is M.E.?'] Discusses the disease impact on several people with [[ME]]. (2016)

==== News media ====
*[[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]] TV report, South Africa (2017)

==== Talks and interviews ====
*[http://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose Video: What happens when you have a disease doctors can't diagnose] Jennifer Brea gives a [https://en.wikipedia.org/wiki/TED_(conference) TED Talk] to explain her psychiatric misdiagnosis of [https://en.wikipedia.org/wiki/Conversion_disorder Conversion disorder], her correct diagnosis of [[Myalgic encephalomyelitis]], the disease impact on her life and how women are more often to receive a psychiatric misdiagnosis for a biologic disease. (2016)

*Jennifer Brea is interviewed for the upcoming BRIC Flix on her ME/CFS disease experience and her 2017 documentary film [[Canary in a Coal Mine]] (now titled Unrest) at [https://www.youtube.com/watch?v=zeIefNymFuw 5:30 and 10:20 - Youtube] (2016)

== Recommended reading ==
====Government health organizations====
:'''USA'''

:[[Centers for Disease Control]] (CDC)
:*[https://www.cdc.gov/cfs/pediatric/factsheets.html Factsheets - Pediatric] Factsheets for Healthcare Professionals, Parents, and Education Professionals. (2014)

:[[National Institutes of Health]] (NIH)
:*[[Moving Toward Answers in ME/CFS - NIH Director's Blog (2017)]]

:[[Institute of Medicine]] (IOM)
:*[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts] From the [[Institute of Medicine report]]. (2015)

:*[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness] Report Brief on the Institute of Medicine report. (2015)

==== ME/CFS research foundations ====
:'''UK'''

:[[Invest in ME]]
:*[http://www.investinme.org/faqs.shtml Frequently Asked Questions]

:'''USA'''

:[[Open Medicine Foundation]] (OMF)
:*[http://www.openmedicinefoundation.org/what-is-mecfs/ What is ME/CFS?]

==== ME/CFS organizations ====
:'''Australia'''

:[[Emerge Australia]]
:*[https://emerge.org.au/about-mecfs/diagnosis/mecfs/ What is ME/CFS?]

:'''UK'''

:[[ME Association]]
:*[http://www.meassociation.org.uk/about/what-is-mecfs/ What is ME/CFS?]

:[[Tymes Trust]] (Pediatric)
:*[http://www.tymestrust.org/pdfs/mecfsseid.pdf Pediatric ME, CFS, SEID for Families and their GPs] (2016)

:'''USA'''
:[[Massachusetts CFIDS/ME & FM Association]]
:*[https://www.masscfids.org/cfids-me-cfs About ME/CFS]

:[[Solve ME/CFS]]
:*[https://drive.google.com/file/d/0B6UlcglLsyp7WkgxbmdaWXVhbVU/view What, Exactly, is a Biomarker Anyway? And Why Don't We Have One for ME/CFS?] (2017)

:*[http://solvecfs.org/what-is-mecfs/ Get the Facts about ME/CFS] (2016)

:*[http://solvecfs.org/wp-content/uploads/2013/06/SMCI_MECFS_FactSheet.pdf What is ME/CFS?] (2013)

:'''International'''
:[[MEAction]]
:*[http://www.meaction.net/wp-content/uploads/2015/10/ME-Facts-v2-1.pdf Facts about Myalgic Encephalomyelitis (ME) (Also called chronic fatigue syndrome or CFS)] (2015)

:*[http://www.meaction.net/reports-and-fact-sheets/?utm_content=bufferc2125&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer Reports and Fact Sheets] (2015)

==== Other organizations ====
:[https://rarediseases.org/ National Organization for Rare Disorders] (NORD)
:*[https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/ Myalgic Encephalomyelitis]

==== Other reading====
:*[http://thirdage.com/what-do-you-do-when-a-loved-one-becomes-chronically-ill/ What Do You Do When a Loved One Becomes Chronically Ill?] By Suzan Jackson

== Research avenues ==
*Dr. [[Anthony Komaroff]] Webinar [https://www.youtube.com/watch?v=ENrdrGj0p-c Hot Areas in ME/CFS Research] (2016)
*[[Beyond the Data – Chronic Fatigue Syndrome: Advancing Research and Clinical Education]] CDC Video (2016)

== Notable studies ==
*[[Metabolic features of chronic fatigue syndrome]] (2016)
*[[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)]] With brain images.
*[[Cytokine#Notable_Studies|Cytokine ("Notable studies")]]

== Learn more ==
*[[Biopsychosocial model]] (BPS model)
*[[Primer for patients]]
*[[Primer for the public]]
*[http://me-pedia.org/wiki/Category:Patient_groups_by_country Patient groups by country]

== See also ==
*Twitter [https://twitter.com/search?f=tweets&vertical=default&q=%23mecfs&src=typd #mecfs]
*[https://voat.co/v/CFS/new VOAT Chronic Fatigue Syndrome Subverse] Articles, research, videos and more.

== References ==

[[Category:Primers]]

Anthony Komaroff

2017-06-23T01:31:23Z

DxCFS:Fixed Photo Link

[[File:Anthony Komaroff.png|300px|thumb|right|Source:bwh.harvard.edu]]
'''Anthony L. Komaroff''', MD, is an Internal Medicine physician and since 1993, a professor at Harvard Medical School in the United States, holding the title of the Steven P. Simcox, Patrick A. Clifford and James H. Higby Distinguished Professor of Medicine.<ref>https://connects.catalyst.harvard.edu/Profiles/display/Person/66899</ref><ref>https://www.linkedin.com/in/anthony-l-komaroff-64133346</ref>

He was quoted in a Rolling Stone article in 1987, written by [[Hillary Johnson]], stating that he did not agree the illness was a "yuppie disease", which became the derogatory label that became commonly used later, [[Yuppie Flu]].<ref>[http://www.rollingstone.com/culture/features/journey-into-fear-part-two-the-growing-nightmare-of-epstein-barr-virus-19870813?page=3 Journey Into Fear: Part Two]</ref> He is featured in [[Ryan Prior]]'s documentary, [[Forgotten Plague]].

He served as past President of the Board of Directors of the [[International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis]] from 1991-1992.<ref>http://iacfsme.org/Organization/Committees-of-the-IACFS-ME.aspx</ref>

==Education==
*1963 – 1967, M.D., University of Washington
*1959 – 1963, A.B., History, Pre-Med, Stanford University

==Awards and Honors==
*2001, Rudy Perpich Senior Lectureship Award, presented to a distinguished CFS/FM scientist, physician or healthcare worker awarded by [[IACFS/ME]]<ref>http://iacfsme.org/Organization/Former-IACFS-ME-Awardees.aspx</ref>
*Fellow of the American Association for the Advancement of Science, the American College of Physicians, and the Association for Health Services Research.
*Served on advisory committees for the [[U.S. Department of Health and Human Services]], the Surgeon General of the United States, the [[Centers for Disease Control]] and Prevention, and the Institute of Medicine/National Academy of Sciences.
*Member of the Scientific Advisory Board of the HHV-6 Foundation.<ref>http://hhv-6foundation.org/about-us/scientific-advisory-board</ref>

==Medscape Continuing Medicine Education==
*2013, [http://www.medscape.org/viewarticle/782106_transcript ''A Case-Based Approach to Chronic Fatigue Syndrome''] was a Medscape Continuing Medicine Education program co-authored by Dr [[Lisa Corbin]], Dr Anthony Komaroff, Dr [[Benjamin Natelson]], and Dr [[Peter Rowe]].<ref>http://www.medscape.org/viewarticle/782106_transcript</ref>

==Articles==
*2015, [http://www.jwatch.org/na37817/2015/06/15/chronic-fatigue-syndrome-biology-diagnosis-and-management Chronic Fatigue Syndrome: Biology, Diagnosis, and Management] by Dr Anthony Komaroff

==Notable studies==
*2017, Fecal metagenomic profiles in subgroups of patients with myalgic encephalomyelitis/chronic fatigue syndrome [https://microbiomejournal.biomedcentral.com/articles/10.1186/s40168-017-0261-y (FULL TEXT)]<blockquote> Abstract - Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is characterized by unexplained persistent fatigue, commonly accompanied by cognitive dysfunction, sleeping disturbances, orthostatic intolerance, fever, lymphadenopathy, and irritable bowel syndrome (IBS). The extent to which the gastrointestinal microbiome and peripheral inflammation are associated with ME/CFS remains unclear. We pursued rigorous clinical characterization, fecal bacterial metagenomics, and plasma immune molecule analyses in 50 ME/CFS patients and 50 healthy controls frequency-matched for age, sex, race/ethnicity, geographic site, and season of sampling. Results: Topological analysis revealed associations between IBS co-morbidity, body mass index, fecal bacterial composition, and bacterial metabolic pathways but not plasma immune molecules. IBS co-morbidity was the strongest driving factor in the separation of topological networks based on bacterial profiles and metabolic pathways. Predictive selection models based on bacterial profiles supported findings from topological analyses indicating that ME/CFS subgroups, defined by IBS status, could be distinguished from control subjects with high predictive accuracy. Bacterial taxa predictive of ME/CFS patients with IBS were distinct from taxa associated with ME/CFS patients without IBS. Increased abundance of unclassified Alistipes and decreased Faecalibacterium emerged as the top biomarkers of ME/CFS with IBS; while increased unclassified Bacteroides abundance and decreased Bacteroides vulgatus were the top biomarkers of ME/CFS without IBS. Despite findings of differences in bacterial taxa and metabolic pathways defining ME/CFS subgroups, decreased metabolic pathways associated with unsaturated fatty acid biosynthesis and increased atrazine degradation pathways were independent of IBS co-morbidity. Increased vitamin B6 biosynthesis/salvage and pyrimidine ribonucleoside degradation were the top metabolic pathways in ME/CFS without IBS as well as in the total ME/CFS cohort. In ME/CFS subgroups, symptom severity measures including pain, fatigue, and reduced motivation were correlated with the abundance of distinct bacterial taxa and metabolic pathways. Conclusions: Independent of IBS, ME/CFS is associated with dysbiosis and distinct bacterial metabolic disturbances that may influence disease severity. However, our findings indicate that dysbiotic features that are uniquely ME/CFS-associated may be masked by disturbances arising from the high prevalence of IBS co-morbidity in ME/CFS. These insights may enable more accurate diagnosis and lead to insights that inform the development of specific therapeutic strategies in ME/CFS subgroups.<ref name="Nagy-Szakal, 2017"/></blockquote>
*2016, [https://www.cdc.gov/mmwr/volumes/65/wr/mm655051a4.htm#contribAff CDC Grand Rounds: Chronic Fatigue Syndrome — Advancing Research and Clinical Education. Morbidity and Mortality Weekly Report]<ref name="Unger, 122016"/>
*2015, Findings from a clinical and laboratory database developed for discovery of pathogenic mechanisms in myalgic encephalomyelitis/chronic fatigue syndrome. [http://www.tandfonline.com/doi/full/10.1080/21641846.2015.1023652 Abstract]<ref name="KlimasNG, 2015"/>
*2015, Distinct plasma immune signatures in ME/CFS are present early in the course of illness [http://advances.sciencemag.org/content/1/1/e1400121.full FULL TEXT]<blockquote>"Abstract: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an unexplained incapacitating illness that may affect up to 4 million people in the United States alone. There are no validated laboratory tests for diagnosis or management despite global efforts to find biomarkers of disease. We considered the possibility that inability to identify such biomarkers reflected variations in diagnostic criteria and laboratory methods as well as the timing of sample collection during the course of the illness. Accordingly, we leveraged two large, multicenter cohort studies of ME/CFS to assess the relationship of immune signatures with diagnosis, illness duration, and other clinical variables. Controls were frequency-matched on key variables known to affect immune status, including season of sampling and geographic site, in addition to age and sex. We report here distinct alterations in plasma immune signatures early in the course of ME/CFS (n = 52) relative to healthy controls (n = 348) that are not present in subjects with longer duration of illness (n = 246). Analyses based on disease duration revealed that early ME/CFS cases had a prominent activation of both pro- and anti-inflammatory cytokines as well as dissociation of intercytokine regulatory networks. We found a stronger correlation of cytokine alterations with illness duration than with measures of illness severity, suggesting that the immunopathology of ME/CFS is not static. These findings have critical implications for discovery of interventional strategies and early diagnosis of ME/CFS."<ref name="Hornig, 2015"/></blockquote>
*2012, ''A Multicenter Blinded Analysis Indicates No Association between Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and either Xenotropic Murine Leukemia Virus-Related Virus or Polytropic Murine Leukemia Virus.'' [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3448165/ (FULL TEXT)]<ref name="Alter, et al, 2012"/>
*2007, Changes in Functional Status in Chronic Fatigue Syndrome Over a Decade: Do Age and Gender Matter?<blockquote>"Abstract - Objective: Patients with chronic fatigue syndrome (CFS) have substantial deficits in functional capacity, but the course of these deficits over time has not often been studied. This study measured functional capacity on three occasions over a decade, in patients with CFS. Methods: The study was a longitudinal cohort study, and employed the Medical Outcomes Study Short Form-36 (SF-36) instrument to assess physical and mental/emotional functional status. Results: Physical function, as reflected in several different scales, improved modestly but significantly over time, particularly for patients aged 18-60 years and for women. Mental/emotional function was not substantially impaired at the outset of the study, and did not change over time. Conclusion: This study found that physical function tended to improve formany patients over time, despite the fact that they were aging. Physical function did not deteriorate with time."<ref>Rosalind M. Matthews & Anthony L. Komaroff. (2007). Changes in Functional Status in Chronic Fatigue Syndrome Over a Decade: Do Age and Gender Matter? ''Journal of Chronic Fatigue Syndrome'', Vol. 14, Iss. 1, pp. 33-42. http://dx.doi.org/10.1300/J092v14n01_04</ref></blockquote>
*2001, Increased Eosinophil Protein X Levels in Chronic Fatigue Syndrome<blockquote>"Abstract - Chronic fatigue syndrome is a condition of unknown etiology characterized by severe fatigue and accompanied by symptoms including cognitive difficulties, myalgias, and headaches. Studies of this illness have found chronic activation of the immune system, including one reporting elevated levels of eosinophil cationic protein, considered an eosinophil activation marker. The aim of this study was to measure serum levels of eosinophil protein X, a cationic protein not measured previously in this illness. Measurements are reported on serum samples from 29 patients meeting the Centers for Disease Control and Prevention criteria for chronic fatigue syndrome, and 30 healthy controls of similar age and gender. The median serum eosinophil protein X level in patients was higher than controls: 37.9 vs. 25.3μg/L (p = 0.037). Forty-eight percent of patients versus 23% of controls had levels above the normal range. The marked increase in serum levels of eosinophil protein X in chronic fatigue syndrome patients could reflect eosinophil activation in this illness."<ref>Richard S. Schacterle, Fabrizio Conti, Laura Magrini, Anthony L. Komaroff & Guido Valesini. (2001). Increased Eosinophil Protein X Levels in Chronic Fatigue Syndrome. ''Journal of Chronic Fatigue Syndrome'', Vol. 9, Iss. 1-2, pp. 21-30. http://dx.doi.org/10.1300/J092v09n01_03</ref></blockquote>
*1994, [[Ampligen]] inhibits human herpesvirus-6 in vitro.<blockquote>Abstract: "The recently discovered human herpesvirus-6 (HHV-6) is being associated with an increasing number of conditions in which there is evidence of immunologic dysfunction. A number of widely available antiviral agents have shown little or no activity against the virus. We found that [[Ampligen]] [Poly (1): Poly (C12U), a synthetic, mismatched, double-stranded RNA, has potent, previously unexpected antiviral effects. Cells known to allow replication of HHV-6 were infected with the virus and treated with Ampligen under various conditions. When cells were pretreated with Ampligen (concentrations of 100 or 200 micrograms/ml) prior to infection or treated shortly after infection, viral replication was inhibited by 46-98%. At 100 and 200 micrograms/ml, Ampligen also inhibited the DNA polymerase activity of HHV-6 by 42-98%. When lower concentrations of Ampligen (10 and 50 micrograms/ml) were used, only pretreatment of cells, with Ampligen, followed by virus infection and carrying the infected cells with Ampligen, significantly inhibited HHV-6 infection (83.7 and 89.1% respectively). Indirect evidence suggests that Ampligen may inhibit viral attachment to cellular receptors and/or inhibit intracellular maturation of the virus. The above concentrations of Ampligen were not toxic to the cells used in the study. Given these in vitro findings, and the low frequency of toxicity reported with the use of Ampligen, clinical trials of this drug in patients with evidence of reactivated HHV-6 infection would seem to be warranted."<ref>[[Dharam Ablashi|Ablashi DV]], Berneman ZN, Williams M, [[David Strayer|Strayer DR]], Kramarsky B, Suhadolnik RJ, Reichenbach N, Hiltzges P, Komaroff AL. (1994). Ampligen inhibits human herpesvirus-6 in vitro. ''In Vivo, 8'' (4):587-91. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/7893986</ref></blockquote>
*1992, A chronic illness characterized by fatigue, neurologic and immunologic disorders, and active human herpesvirus type 6 infection<ref name="Buchwald, 1992"/>

==Talks & interviews==
*May 24, 2017 - Speaker at the Personalized Medicine World Conference (PMWC) 2017 at Duke
:Topic: "ME/CFS: The Mysterious Illness Science Has Yet to Unravel"<ref>http://www.bioquicknews.com/node/4263</ref><ref>http://www.pmwcintl.com/2017duke/sessionthemes-mecfs-the-mysterious-illness-science-has-yet-to-unravel/</ref>
*18 Nov 2016, [https://www.youtube.com/watch?v=xCyvAqULXFg, [[ME/CFS Alert]] Episode 85 - Dr Anthony Komaroff on ME/CFS Treatment and Research]
*10 Nov 2016, [https://www.youtube.com/watch?v=ENrdrGj0p-c [[Solve ME/CFS Initiative]] Webinar with Dr. Anthony Komaroff, "Hot Areas in ME/CFS Research"]
*5 Nov, 2016, [https://www.youtube.com/watch?v=t5rhs8JJi2U "The Latest Research on ME/CFS" Lecture to [[Massachusetts CFIDS/ME & FM Association]]]
*16 Feb 2016, [https://www.cdc.gov/cdcgrandrounds/archives/2016/february2016.htm CDC Grand Rounds - Chronic Fatigue Syndrome: Advancing Research and Clinical Education] with [[Charles Lapp]], MD, [[Elizabeth Unger]], PhD, MD, Anthony Komaroff, MD and [[Avindra Nath]], MD
*2016, [https://www.youtube.com/watch?v=hRdn4A2SGic Beyond the Data – Chronic Fatigue Syndrome: Advancing Research and Clinical Education] ([[NIH Post-Infectious ME/CFS Study]])
*2014, [[ME/CFS Alert]] Interviews: [https://www.youtube.com/watch?v=xuiZbrIQ6Ko Part 1] [https://www.youtube.com/watch?v=bgmffj4ItZo Part2] [https://www.youtube.com/watch?v=eMosC6O1VZc Part3] [https://www.youtube.com/watch?v=HiUCoIoybUw Advice for the Department of Health]

==Online presence==
*[https://www.ncbi.nlm.nih.gov/pubmed/?term=Komaroff%20AL%5BAuthor%5D&cauthor=true&cauthor_uid=26075760 PubMed - Anthony Komaroff]
*[http://www.askdoctork.com/ Ask Doctor K - an online medical information column for patients]
*[https://www.linkedin.com/in/anthony-l-komaroff-64133346 LinkedIn]

==Learn more==
*[https://en.wikipedia.org/wiki/Anthony_L._Komaroff Wikipedia]

==See also==
*[[Forgotten Plague]]

==References==
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</references>

[[Category:Researchers]]
[[Category:USA researchers]]
[[Category:Clinicians]]
[[Category:American clinicians]]
[[Category:Massachusetts clinicians]]
[[Category:CFSAC members]]

Ketogenic diet

2017-06-18T19:31:20Z

DxCFS:/* Risks & side effects */ x

The ketogenic diet is a high-[[fat]], medium [[protein]], low [[carbohydrate]] diet primarily used for children with treatment-resistant [[epilepsy]]. It induces [[ketosis]], a metabolic state in which the body derives most of its energy from [[ketones]] rather than [[glucose]].

== Types of ketogenic diets ==

== Evidence for a ketogenic diet ==

=== General effects ===

In an animal model, a ketogenic diet was shown to increase [[mitochondria]]l biogenesis.<ref name="RhoJM2007"/> A similar result was found in a study of fasting mice.<ref name="Cerqueira2011"/>

=== Epilepsy ===

[[Neurotransmitter]]s regulate nerve impulses is the brain by either inhibiting impulse firing or exciting the [[neuron]] to fire. A primary inhibitory neurotransmitters is [[GABA]] and a primary excitatory neurotransmitters is [[glutamate]]. In patients with epilepsy, if the normal balance of inhibition and excitation is disrupted, a seizure can occur.

It us unknown why ketogenic diets are protective against epilepsy. In animal models, the ketone bodies [[acetoacetate]] and [[acetone]] have anticonvulsant properities through a novel pathway.<ref name="Hartman2007"/> Ketone bodies are also a more efficient fuel than glucose.

The Charlie Foundation supports the use of ketogenic diets with children with severe epilepsy.<ref name="CharlieFoundation"/>

=== Neurodegenerative diseases ===

There is evidence from uncontrolled clinical trials and animal models that ketogenic diets may be protective in neurodegenerative disorders including [[Alzheimer's]] and [[Parkinson's]].<ref name="Gasior2006"/>

Mice fed a ketogenic diet had increased activity of [[dopamine]]rgic neurons.<ref name="ChurchWH2014"/> In a rat model of Parkinson's, a ketogenic diet was protective against neurotoxicity by up-regulating glutathione.<ref name="ChengB2009"/>

A study found dietary ketosis enhanced memory in patients with mild cognitive impairment.<ref name="Krikorian2012"/>

=== Chronic fatigue syndrome ===

No studies have been done on the effects of ketogenic diets in [[Chronic fatigue syndrome]]. Some CFS clinicians recommend ketogenic diets as a management strategy<ref name="Myhillketo1"/><ref name="Craig20150325"/> citing [[mitochondria]]l dysfunction<ref name="Myhill2009"/>, [[immune system|immune]] dysfunction, and [[neuroinflammation]] as pathways through which ketogenic diets could confer some benefit.

==Risks & side effects==
*The ketogenic diet was found to regulate [[blood sugar]] but over the long term cause fat to accumulate in the liver in an animal model of Type II [[Diabetes]].<ref name="ZhangX2016"/>
*Two children on the diet for [[refractory epilepsy]] had [[selenium]] deficiency which resulted in sudden cardiac death.<ref>[http://www.pedneur.com/article/S0887-8994(08)00399-8/abstract?cc=y= Sudden Cardiac Death in Association With the Ketogenic Diet - Pediatric Neurology - December 2008]</ref>
*[https://www.youtube.com/watch?v=MzHLAqyO7PQ Diet Debunked: The Ketogenic Diet] YouTube (2017) "The keto diet has a dark side that only few in the community have the courage to confront and it is all based on the scientific literature."

== Notable studies ==
*[https://clinicaltrials.gov/ct2/show/NCT01906398 Efficacy and Safety of Ketogenic Diet as Adjunctive Treatment in Adults With Refractory Epilepsy (KD)] (This study is ongoing, but not recruiting participants.)

==Medium chain triglycerides (MCT)==
Supplementation with [[medium-chain triglycerides]] (MCTs) increases blood levels of ketones.<ref name="WikiMCT"/> They are often used in ketogenic diets to help maintain ketosis at a lower proportion of fat intake. A study showed improved cognition in [[Alzheimer's disease]] patients.<ref name="RegerMA2004"/>

==Exogenous ketones==
Ketone salts can be supplemented so that ketone bodies are present in the blood at higher concentrations, indicating ketosis, much more quickly than with a typical ketogenic diet.<ref name="keystoketosisbegin"/>

==Clinical use==
Doctor [[Sarah Myhill]] has a page on her web site describing the ketogenic diet.<ref name="Myhillketo2"/>
Doctor [[Courtney Craig]] has published a hypothesis on the treatment of [[mitochondria]]l failure in [[ME/CFS]] using a ketogenic diet, as well as [[caloric restriction]] and [[fasting]].<ref name="Craig2015"/>

==Learn more==
*2017, [https://www.healthrising.org/blog/2017/06/16/ketogenic-diets-fibromyalgia-mecfs-review/ Getting Clear on Ketogenic Diets (for Fibromyalgia and ME/CFS): A Review]
*[https://en.wikipedia.org/wiki/Ketogenic_diet Wikipedia - Ketogenic diet]
*[http://www.ketogenic-diet-resource.com/ Ketogenic Diet Resource]
*[https://en.wikipedia.org/wiki/Fatty_acid_metabolism Wikipedia - Fatty acid metabolism]

== See also ==
*[[Fasting]]
*[[Ketosis]]

==References==
<references>

<ref name="Cerqueira2011">{{Citation
| last1 = Cerqueira | first1 = Fernanda M
| last2 = Laurindo | first2 = Francisco R M
| last3 = Kowaltowski | first3 = Alicia J
| title = Mild Mitochondrial Uncoupling and Calorie Restriction Increase Fasting eNOS, Akt and Mitochondrial Biogenesis
| journal = PLOS ONE | volume = 6| issue = 3| pages = –18433
| date = 31 Mar 2011
| doi = 10.1371/journal.pone.0018433
| url = http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0018433
}}</ref>

<ref name="CharlieFoundation">
| title = The Charlie Foundation for Ketogenic Therapies
| url = http://www.charliefoundation.org/
</ref>

<ref name="ChengB2009">{{Citation
| last1 = Cheng | first1 = Baohua
| last2 = Yang | first2 = Xinxin
| last3 = An | first3 = Liangxiang
| last4 = Gao | first4 = Bo
| last5 = Liu | first5 = Xia
| last6 = Liu | first6 = Shuwei
| display-authors = 3
| title = Ketogenic diet protects dopaminergic neurons against 6-OHDA neurotoxicity via up-regulating glutathione in a rat model of Parkinson's disease
| journal = Brain Research | volume = 1286| pages = 25–31
| date = 2009-08-25
| doi = 10.1016/j.brainres.2009.06.060
| url = http://www.sciencedirect.com/science/article/pii/S0006899309012797
}}</ref>

<ref name="ChurchWH2014">{{Citation
| last1 = Church | first1 = William H
| last2 = Adams | first2 = Ryan E
| last3 = Wyss | first3 = Livia S
| title = Ketogenic diet alters dopaminergic activity in the mouse cortex
| journal = Neuroscience Letters | volume = 571| pages = 1–4
| date = 2014-06-13
| doi = 10.1016/j.neulet.2014.04.016
| pmid = 24769322
| URL = http://www.ncbi.nlm.nih.gov/pubmed/24769322
}}</ref>

<ref name="Craig2015">{{Citation
| last1 = Craig | first1 = Courtney | authorlink1 = Courtney Craig
| title = Mitoprotective dietary approaches for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Caloric restriction, fasting, and ketogenic diets
| journal = Medical Hypotheses | volume = 85 | issue = 5 | page = 690-693
| date = November 2015
| pmid = 26315446
| doi = 10.1016/j.mehy.2015.08.013
}}</ref>

<ref name="Craig20150325">{{citation
| last1 = Craig | first1 = Courtney | authorlink1 = Courtney Craig
| title = A Ketogenic Diet for ME/CFS & Fibro
| date = 30 Mar 2015
| url = http://www.drcourtneycraig.com/blog/2015/3/25/a-ketogenic-diet-for-mecfs-fibro
}}</ref>

<ref name="Gasior2006">{{Citation
| last1 = Gasior | first1 = Maciej
| last2 = Rogawski | first2 = Michael A
| last3 = Hartman | first3 = Adam L
| title = Neuroprotective and disease-modifying effects of the ketogenic diet
| journal = Behavioural Pharmacology | volume = 17| issue = 5-6| pages = 431–439
| date = Sep 2006
| pmid = 16940764
| url = http://www.ncbi.nlm.nih.gov/pubmed/16940764/
}}</ref>

<ref name="Hartman2007">{{Citation
| last1 = Hartman | first1 = Adam L
| last2 = Gasior | first2 = Maciej
| last3 = Vining | first3 = Eileen P G
| last4 = Rogawski | first4 = Michael A
| title = The Neuropharmacology of the Ketogenic Diet
| journal = Pediatric neurology | volume = 36| issue = 5| pages = 281–292
| date = May 2007
| pmid = 17509459
| doi = 10.1016/j.pediatrneurol.2007.02.008
| url = http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1940242/
}}</ref>

<ref name="keystoketosisbegin">{{citation
| last1 = Keys to Ketosis
| title = The Beginner's Guide to Exogenous Ketones
| date = 11 Jan 2016
| url = http://keystoketosis.com/the-beginners-guide-to-exogenous-ketones/
}}</ref>

<ref name="Krikorian2012">{{Citation
| last1 = Krikorian | first1 = Robert
| last2 = Shidler | first2 = Marcelle D
| last3 = Dangelo | first3 = Krista
| last4 = Couch | first4 = Sarah C
| last5 = Benoit | first5 = Stephen C
| last6 = Clegg | first6 = Deborah J
| title = Dietary ketosis enhances memory in mild cognitive impairment
| journal = Neurobiology of Aging | volume = 33| issue = 2| pages = 425–19-27
| date = Feb 2012
| pmid = 21130529
| doi = 10.1016/j.neurobiolaging.2010.10.006
| url = https://www.ncbi.nlm.nih.gov/pubmed/21130529/
}}</ref>

<ref name="Myhill2009">{{citation
| last1 = Myhill | first1 = S | authorlink1 = Sarah Myhill
| last2 = Booth | first2 = NE | authorlink2 = Norman Booth
| last3 = McLaren-Howard | first3 = J | authorlink3 = John McLaren-Howard
| title = Chronic fatigue syndrome and mitochondrial dysfunction
| journal = Int J Clin Exp Med | volume = 2| issue = 1| pages = 1–16
| date = 15 Jan 2009
| pmid = 19436827
| url = http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680051/
}}</ref>

<ref name="Myhillketo1">{{citation
| last1 = Segura | first1 = Gabriela
| title = Ketogenic diet - a connection between mitochondria and diet
| date = 9 Aug 2013
| url = http://www.drmyhill.co.uk/wiki/Ketogenic_diet_-_a_connection_between_mitochondria_and_diet
}}</ref>

<ref name="Myhillketo2">{{citation
| last1 = Myhill | first1 = Sarah | authorlink1 = Sarah Myhill
| title = Ketogenic diet - the practical details
| url = http://www.doctormyhill.co.uk/wiki/Ketogenic_diet_-_the_practical_details
}}</ref>

<ref name="RegerMA2004">{{citation
| last1 = Reger | first1 = Mark A
| last2 = Henderson | first2 = Samuel T
| last3 = Hale | first3 = Cathy
| last4 = Cholerton | first4 = Brenna
| last5 = Baker | first5 = Laura D
| last6 = Watson | first6 = G S
| last7 = Hyde | first7 = Karen
| last8 = Chapman | first8 = Darla
| last9 = Craft | first9 = Suzanne
| display-authors = 3
| title = Effects of beta-hydroxybutyrate on cognition in memory-impaired adults
| journal = Neurobiology of Aging | volume = 25| issue = 3| pages = 311–314
| date = Mar 2004
| doi = 10.1016/S0197-4580(03)00087-3
| pmid = 15123336
}}</ref>

<ref name="RhoJM2007">{{Citation
| last1 = Rho | first1 = Jong M
| last2 = Rogawski | first2 = Michael A
| title = The Ketogenic Diet: Stoking the Powerhouse of the Cell
| journal = Epilepsy Currents | volume = 7| issue = 2| pages = 58–60
| date = Mar 2007
| doi = 10.1111/j.1535-7511.2007.00170.x
| pmid = 17505556
| url = http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1867088/
}}</ref>

<ref name="WikiMCT">{{citation
| title = Wikipedia - Ketogenic diet, MCT oil
| url = https://en.wikipedia.org/wiki/Ketogenic_diet#MCT_oil
}}</ref>

<ref name="ZhangX2016">{{citation
| last1 = Zhang | first1 = Xiaoyu
| last2 = Qin | first2 = Juliang
| last3 = Zhao | first3 = Yihan
| last4 = Shi | first4 = Jueping
| last5 = Lan | first5 = Rong
| last6 = Gan | first6 = Yunqiu
| last7 = Ren | first7 = Hua
| last8 = Zhu | first8 = Bing
| last9 = Qian | first9 = Min
| last10 = Du | first10 = Bing
| title = Long-term ketogenic diet contributes to glycemic control but promotes lipid accumulation and hepatic steatosis in type 2 diabetic mice
| journal = Nutrition Research | volume = 36| issue = 4| pages = 349–358
| date = 1 Apr 2016
| doi = 10.1016/j.nutres.2015.12.002
| url = http://www.nrjournal.com/article/S0271531715003012/abstract
}}</ref>

</references>

[[Category:Potential treatments]]
[[Category:Diets]]

Frank Twisk

2017-06-14T15:33:19Z

DxCFS:/* Published Articles, Commentary and Letters */ Fixed Info in Hyperlink

'''Frank N.M. Twisk''', MBA, MBI, BEd, BEc, is a Dutch [[myalgic encephalomyelitis]] (ME) advocate and writer. Prior to becoming ill with [[ME]] in 1996, he was a project manager, business administrator, information scientist, mathematician, higher education teacher, and avid footballer. He encourages those of different talents to work together in the goal for scientific answers to [[ME]] and advocates for a clear distinction between [[ME]] and [[chronic fatigue syndrome]] (CFS).<ref>https://www.youtube.com/watch?v=Xjg8fLP-BpM</ref>

Twisk is associated with a Dutch non-profit, ME-de-patiënten Foundation, in a voluntary (non-paid) capacity.

==Interviews & Talks==
* 2015 - [https://www.youtube.com/watch?v=Xjg8fLP-BpM ME and my life: past, present and future] (video - Dutch w/ English Closed Captions)<ref name="TwiskF20150817video"/>

== Published Articles, Commentary and Letters ==
*2017, [https://oatext.com/pdf/PMRR-2-134.pdf Dangerous exercise. The detrimental effects of exertion and orthostatic stress in Myalgic Encephalomyelitis and chronic fatigue syndrome]
*2016, [https://www.researchgate.net/publication/305630849_Myalgic_Encephalomyelitis_chronic_fatigue_syndrome_or_systemic_exercise_intolerance_disease_What%27s_in_a_name Myalgic Encephalomyelitis, chronic fatigue syndrome or systemic exercise intolerance disease: What’s in a name?]
*2016, [http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00554-4/fulltext PACE: CBT and GET are not rehabilitative therapies]<ref name="TwiskF20160118"/>
*7 Nov 2015, [http://www.jacobspublishers.com/images/Physiology/J_J_Physiology_1_2_007.pdf Deviant cellular and physiological responses to exercise in Myalgic Encephalomyelitis and chronic fatigue syndrome.] <blockquote>"Abstract: Post-exertional “malaise” is a hallmark symptom of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Various abnormalities, including abnormal physiological responses to exertion, can account for post-exertional “malaise” and “exercise avoidance”. Since these abnormalities are not observed in sedentary healthy controls, the abnormalities and deviant responses cannot be explained by “exercise avoidance” and subsequent deconditioning, nor by psychogenic factors."<ref name="TwiskF20150711"/></blockquote>
*26 Jun 2015, Accurate diagnosis of myalgic encephalomyelitis and chronic fatigue syndrome based upon objective test methods for characteristic symptoms [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4482824/ (FULL TEXT)] <blockquote> Abstract - Although myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are considered to be synonymous, the definitional criteria for ME and CFS define two distinct, partially overlapping, clinical entities. ME, whether defined by the original criteria or by the recently proposed criteria, is not equivalent to CFS, let alone a severe variant of incapacitating chronic fatigue. Distinctive features of ME are: muscle weakness and easy muscle fatigability, cognitive impairment, circulatory deficits, a marked variability of the symptoms in presence and severity, but above all, post-exertional “malaise”: a (delayed) prolonged aggravation of symptoms after a minor exertion. In contrast, CFS is primarily defined by (unexplained) chronic fatigue, which should be accompanied by four out of a list of 8 symptoms, e.g., headaches. Due to the subjective nature of several symptoms of ME and CFS, researchers and clinicians have questioned the physiological origin of these symptoms and qualified ME and CFS as functional somatic syndromes. However, various characteristic symptoms, e.g., post-exertional “malaise” and muscle weakness, can be assessed objectively using well-accepted methods, e.g., cardiopulmonary exercise tests and cognitive tests. The objective measures acquired by these methods should be used to accurately diagnose patients, to evaluate the severity and impact of the illness objectively and to assess the positive and negative effects of proposed therapies impartially.<ref>Twisk, F. N. (2015). Accurate diagnosis of myalgic encephalomyelitis and chronic fatigue syndrome based upon objective test methods for characteristic symptoms. World Journal of Methodology, 5(2), 68–87. http://doi.org/10.5662/wjm.v5.i2.68</ref>
*2015, Letter to the Editor, by Frank Twisk in ''[[Fatigue: Biomedicine, Health & Behavior]]''<ref>Twisk, F., (2015). Letter to the Editor. ''Fatigue: Biomedicine, Health & Behavior, 3'' (4), 242-243. doi:10.1080/21641846.2015.1083325</ref>
*2015, [http://www.tandfonline.com/doi/pdf/10.1080/21642850.2015.1027705 Commentary on Jason et al. (2015): towards separate empirical case definitions of Myalgic Encephalomyelitis and chronic fatigue syndrome]<ref name="Twisk, 2015"/>
*2014, Review Article: Deviant Cellular and Physiological Responses to Exercise in Myalgic Encephalomyelitis and Chronic Fatigue Syndrome<ref name="TwiskF20150711"/>
*2013, [http://www.rehab.research.va.gov/jour/2013/509/pdf/letterstotheeditor509.pdf Rebuttal to Ickmans et al. Association between cognitive performance, physical fitness, and physical activity level in women with chronic fatigue syndrome.]<ref name="Twisk, 2013"/>
*2011, Increased IgA responses to the LPS of commensal bacteria is associated with inflammation and activation of cell-mediated immunity in chronic fatigue syndrome.<ref name="MaesM20111002"/>
*2010, [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901228/pdf/1741-7015-8-35.pdf Chronic fatigue syndrome: Harvey and Wessely's (bio)psychosocial model versus a bio(psychosocial) model based on inflammatory and oxidative and nitrosative stress pathways]<blockquote> "Abstract - Background: In a recently published paper, Harvey and Wessely put forward a 'biopsychosocial' explanatory model for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is proposed to be applicable to (chronic) fatigue even when apparent medical causes are present. Methods: Here, we review the model proposed by Harvey and Wessely, which is the rationale for behaviourally oriented interventions, such as cognitive behaviour therapy (CBT ) and graded exercise therapy (GET ), and compare this model with a biological model, in which inflammatory, immune, oxidative and nitrosative (IO&NS) pathways are key elements. Discussion: Although human and animal studies have established that the pathophysiology of ME/CFS includes IO&NS pathways, these abnormalities are not included in the model proposed by Harvey and Wessely. Activation of IO&NS pathways is known to induce fatigue and somatic (F&S) symptoms and can be induced or maintained by viral and bacterial infections, physical and psychosocial stressors, or organic disorders such as (auto)immune disorders. Studies have shown that ME/CFS and major depression are both clinical manifestations of shared IO&NS pathways, and that both disorders can be discriminated by specific symptoms and unshared or differentiating pathways. Interventions with CBT/GET are potentially harmful for many patients with ME/CFS, since the underlying pathophysiological abnormalities may be intensified by physical stressors. Conclusions: In contrast to Harvey and Wessely's (bio)psychosocial model for ME/CFS a bio(psychosocial) model based upon IO&NS abnormalities is likely more appropriate to this complex disorder. In clinical practice, we suggest physicians should also explore the IO&NS pathophysiology by applying laboratory tests that examine the pathways involved."<ref name="Twisk, 2010"/></blockquote>
*2009, A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS.<blockquote>"Abstract: Benign Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) is a debilitating disease which, despite numerous biological abnormalities has remained highly controversial. Notwithstanding the medical pathogenesis of ME/CFS, the (bio)psychosocial model is adopted by many governmental organizations and medical professionals to legitimize the combination of Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) for ME/CFS. Justified by this model CBT and GET aim at eliminating presumed psychogenic and socially induced maintaining factors and reversing deconditioning, respectively. In this review we invalidate the (bio)psychosocial model for ME/CFS and demonstrate that the success claim for CBT/GET to treat ME/CFS is unjust. CBT/GET is not only hardly more effective than non-interventions or standard medical care, but many patients report that the therapy had affected them adversely, the majority of them even reporting substantial deterioration. Moreover, this review shows that exertion and thus GET most likely have a negative impact on many ME/CFS patients. Exertion induces [[post-exertional malaise]] with a decreased physical performance/aerobic capacity, increased muscoskeletal pain, neurocognitive impairment, "fatigue", and weakness, and a long lasting "recovery" time. This can be explained by findings that exertion may amplify pre-existing pathophysiological abnormalities underpinning ME/CFS, such as inflammation, immune dysfunction, oxidative and nitrosative stress, channelopathy, defective stress response mechanisms and a hypoactive hypothalamic-pituitary-adrenal axis. We conclude that it is unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful "rehabilitation therapies", such as CBT/GET.<ref name="Twisk2009"/></blockquote>

== Online Presence ==
* [https://twitter.com/FrankTwisk Twitter]
* [http://www.hetalternatief.org/ Website]
* [https://www.facebook.com/frank.twisk FaceBook]
* [https://www.linkedin.com/in/frank-twisk-9b4b477 LinkedIn]

== References ==
<references>
<ref name="Twisk, 2010">
{{Citation
| last1 = Twisk | first1 = Frank | authorlink1 = Frank Twisk
| last2 = Maes | first2 = Michael | authorlink2 = Michael Maes
| title = Chronic fatigue syndrome: Harvey and Wessely's (bio)psychosocial model versus a bio(psychosocial) model based on inflammatory and oxidative and nitrosative stress pathways
| journal = BMC Medicine | volume = 8 | issue = 35 | page =
| date = 2010
| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901228/pdf/1741-7015-8-35.pdf
}}
</ref>
<ref name="Twisk, 2015">
{{Citation
| last1 = Twisk | first1 = Frank | authorlink1 = Frank Twisk
| title = Commentary on Jason et al. (2015): towards separate empirical case definitions of Myalgic Encephalomyelitis and chronic fatigue syndrome
| journal = Health Psychology and Behavioral Medicine | volume = 3 | issue = 1 | page = 109-110
| date = 2015
| pmid =
| doi = 10.1080/21642850.2015.1027705
}}
</ref>
<ref name="Twisk, 2013">
{{Citation
| last1 = Twisk | first1 = Frank | authorlink1 = Frank Twisk
| title = Rebuttal to Ickmans et al. Association between cognitive performance, physical fitness, and physical activity level in women with chronic fatigue syndrome.]
| journal = Journal of Rehabilitation Research & Development| volume = 50 | issue = 9 | page = vii-viii
| date = 2013
| url = http://www.rehab.research.va.gov/jour/2013/509/pdf/letterstotheeditor509.pdf
}}
</ref>
<ref name="MaesM20111002">{{citation
| last1 = Maes | first1 = Michael | authorlink1 = Michael Maes
| last2 = Twisk | first2 = Frank N | authorlink2 = Frank Twisk
| last3 = Kubera | first3 = M | authorlink3 =
| last4 = Ringel | first4 = K | authorlink4 =
| last5 = Leunis | first5 = JC | authorlink5 =
| last6 = Geffard | first6 = M | authorlink6 =
| display-authors =
| title = Increased IgA responses to the LPS of commensal bacteria is associated with inflammation and activation of cell-mediated immunity in chronic fatigue syndrome
| journal = J Affect Disord | volume = 2012 Feb;136(3) | page = 909-17
| date = 2 Oct 2011
| pmid = 21967891 | doi = 10.1016/j.jad.2011.09.010
}}</ref>
<ref name="TwiskF20150711">{{citation
| last1 = Twisk | first1 = Frank NM | author-link1 = Frank Twisk
| last2 = Geraghty | first2 = Keith J | author-link2 = Keith Geraghty
| title = Deviant Cellular and Physiological Responses to Exercise in Myalgic Encephalomyelitis and Chronic Fatigue Syndrome
| journal = Jacobs Journal of Physiology | volume = 2015, 1(2): 007
| date = 11 Jul 2015
| url = http://www.jacobspublishers.com/images/Physiology/J_J_Physiology_1_2_007.pdf
}}</ref>
<ref name="TwiskF20150817video">{{citation
| last1 = Twisk | first1 = Frank NM | author-link1 = Frank Twisk
| title = ME and my life: past, present and future (video - Dutch w/ English CC)
| journal = YouTube | volume = Wetenschap voor Patienten - ME/cvs Vereniging
| date = 17 Aug 2015
| url = https://www.youtube.com/watch?v=Xjg8fLP-BpM
}}</ref>
<ref name="TwiskF20160118">{{citation
| last1 = Twisk | first1 = Frank NM | author-link1 = Frank Twisk
| title = (correspondence) PACE: CBT and GET are not rehabilitative therapies
| journal = The Lancet Psychiatry
| date = 18 Jan 2016
| doi = 10.1016/S2215-0366(15)00554-4
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00554-4/fulltext
}}</ref>
<ref name="Twisk2009">{{citation
| last1 = Twisk | first1 = Frank NM | authorlink1 = Frank Twisk
| last2 = Maes | first2 = Michael | authorlink2 = Michael Maes
| title = A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS.
| journal = Neuroendocrinology Letters | volume = 30| issue = 3| pages = 284–299
| date = 2008
| pmid = 19855350
}}</ref>
</references>
[[Category:People with ME, CFS, and/or FMS]] [[Category:Advocates or allies]] [[Category:Dutch advocates or allies‎]]

Frank Twisk

2017-06-14T15:30:01Z

DxCFS:/* Published Articles, Commentary and Letters */ Dangerous exercise. The detrimental effects of exertion and orthostatic stress in Myalgic Encephalomyelitis and chronic fatigue syndrome

'''Frank N.M. Twisk''', MBA, MBI, BEd, BEc, is a Dutch [[myalgic encephalomyelitis]] (ME) advocate and writer. Prior to becoming ill with [[ME]] in 1996, he was a project manager, business administrator, information scientist, mathematician, higher education teacher, and avid footballer. He encourages those of different talents to work together in the goal for scientific answers to [[ME]] and advocates for a clear distinction between [[ME]] and [[chronic fatigue syndrome]] (CFS).<ref>https://www.youtube.com/watch?v=Xjg8fLP-BpM</ref>

Twisk is associated with a Dutch non-profit, ME-de-patiënten Foundation, in a voluntary (non-paid) capacity.

==Interviews & Talks==
* 2015 - [https://www.youtube.com/watch?v=Xjg8fLP-BpM ME and my life: past, present and future] (video - Dutch w/ English Closed Captions)<ref name="TwiskF20150817video"/>

== Published Articles, Commentary and Letters ==
*2017, [https://oatext.com/pdf/PMRR-2-134.pdf Dangerous exercise. The detrimental effects of exertion and orthostatic stress in Myalgic Encephalomyelitis and chronic fatigue syndrome]
*2016, [https://www.researchgate.net/publication/305630849_Myalgic_Encephalomyelitis_chronic_fatigue_syndrome_or_systemic_exercise_intolerance_disease_What%27s_in_a_name Myalgic Encephalomyelitis, chronic fatigue syndrome or systemic exercise intolerance disease: What’s in a name?]
*2016, [http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00554-4/fulltext Correspondence to The [[Lancet Psychiatry]] on the [[PACE trial]] - "PACE: CBT and GET are not rehabilitative therapies".]<ref name="TwiskF20160118"/>
*7 Nov 2015, [http://www.jacobspublishers.com/images/Physiology/J_J_Physiology_1_2_007.pdf Deviant cellular and physiological responses to exercise in Myalgic Encephalomyelitis and chronic fatigue syndrome.] <blockquote>"Abstract: Post-exertional “malaise” is a hallmark symptom of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Various abnormalities, including abnormal physiological responses to exertion, can account for post-exertional “malaise” and “exercise avoidance”. Since these abnormalities are not observed in sedentary healthy controls, the abnormalities and deviant responses cannot be explained by “exercise avoidance” and subsequent deconditioning, nor by psychogenic factors."<ref name="TwiskF20150711"/></blockquote>
*26 Jun 2015, Accurate diagnosis of myalgic encephalomyelitis and chronic fatigue syndrome based upon objective test methods for characteristic symptoms [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4482824/ (FULL TEXT)] <blockquote> Abstract - Although myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are considered to be synonymous, the definitional criteria for ME and CFS define two distinct, partially overlapping, clinical entities. ME, whether defined by the original criteria or by the recently proposed criteria, is not equivalent to CFS, let alone a severe variant of incapacitating chronic fatigue. Distinctive features of ME are: muscle weakness and easy muscle fatigability, cognitive impairment, circulatory deficits, a marked variability of the symptoms in presence and severity, but above all, post-exertional “malaise”: a (delayed) prolonged aggravation of symptoms after a minor exertion. In contrast, CFS is primarily defined by (unexplained) chronic fatigue, which should be accompanied by four out of a list of 8 symptoms, e.g., headaches. Due to the subjective nature of several symptoms of ME and CFS, researchers and clinicians have questioned the physiological origin of these symptoms and qualified ME and CFS as functional somatic syndromes. However, various characteristic symptoms, e.g., post-exertional “malaise” and muscle weakness, can be assessed objectively using well-accepted methods, e.g., cardiopulmonary exercise tests and cognitive tests. The objective measures acquired by these methods should be used to accurately diagnose patients, to evaluate the severity and impact of the illness objectively and to assess the positive and negative effects of proposed therapies impartially.<ref>Twisk, F. N. (2015). Accurate diagnosis of myalgic encephalomyelitis and chronic fatigue syndrome based upon objective test methods for characteristic symptoms. World Journal of Methodology, 5(2), 68–87. http://doi.org/10.5662/wjm.v5.i2.68</ref>
*2015, Letter to the Editor, by Frank Twisk in ''[[Fatigue: Biomedicine, Health & Behavior]]''<ref>Twisk, F., (2015). Letter to the Editor. ''Fatigue: Biomedicine, Health & Behavior, 3'' (4), 242-243. doi:10.1080/21641846.2015.1083325</ref>
*2015, [http://www.tandfonline.com/doi/pdf/10.1080/21642850.2015.1027705 Commentary on Jason et al. (2015): towards separate empirical case definitions of Myalgic Encephalomyelitis and chronic fatigue syndrome]<ref name="Twisk, 2015"/>
*2014, Review Article: Deviant Cellular and Physiological Responses to Exercise in Myalgic Encephalomyelitis and Chronic Fatigue Syndrome<ref name="TwiskF20150711"/>
*2013, [http://www.rehab.research.va.gov/jour/2013/509/pdf/letterstotheeditor509.pdf Rebuttal to Ickmans et al. Association between cognitive performance, physical fitness, and physical activity level in women with chronic fatigue syndrome.]<ref name="Twisk, 2013"/>
*2011, Increased IgA responses to the LPS of commensal bacteria is associated with inflammation and activation of cell-mediated immunity in chronic fatigue syndrome.<ref name="MaesM20111002"/>
*2010, [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901228/pdf/1741-7015-8-35.pdf Chronic fatigue syndrome: Harvey and Wessely's (bio)psychosocial model versus a bio(psychosocial) model based on inflammatory and oxidative and nitrosative stress pathways]<blockquote> "Abstract - Background: In a recently published paper, Harvey and Wessely put forward a 'biopsychosocial' explanatory model for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is proposed to be applicable to (chronic) fatigue even when apparent medical causes are present. Methods: Here, we review the model proposed by Harvey and Wessely, which is the rationale for behaviourally oriented interventions, such as cognitive behaviour therapy (CBT ) and graded exercise therapy (GET ), and compare this model with a biological model, in which inflammatory, immune, oxidative and nitrosative (IO&NS) pathways are key elements. Discussion: Although human and animal studies have established that the pathophysiology of ME/CFS includes IO&NS pathways, these abnormalities are not included in the model proposed by Harvey and Wessely. Activation of IO&NS pathways is known to induce fatigue and somatic (F&S) symptoms and can be induced or maintained by viral and bacterial infections, physical and psychosocial stressors, or organic disorders such as (auto)immune disorders. Studies have shown that ME/CFS and major depression are both clinical manifestations of shared IO&NS pathways, and that both disorders can be discriminated by specific symptoms and unshared or differentiating pathways. Interventions with CBT/GET are potentially harmful for many patients with ME/CFS, since the underlying pathophysiological abnormalities may be intensified by physical stressors. Conclusions: In contrast to Harvey and Wessely's (bio)psychosocial model for ME/CFS a bio(psychosocial) model based upon IO&NS abnormalities is likely more appropriate to this complex disorder. In clinical practice, we suggest physicians should also explore the IO&NS pathophysiology by applying laboratory tests that examine the pathways involved."<ref name="Twisk, 2010"/></blockquote>
*2009, A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS.<blockquote>"Abstract: Benign Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) is a debilitating disease which, despite numerous biological abnormalities has remained highly controversial. Notwithstanding the medical pathogenesis of ME/CFS, the (bio)psychosocial model is adopted by many governmental organizations and medical professionals to legitimize the combination of Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) for ME/CFS. Justified by this model CBT and GET aim at eliminating presumed psychogenic and socially induced maintaining factors and reversing deconditioning, respectively. In this review we invalidate the (bio)psychosocial model for ME/CFS and demonstrate that the success claim for CBT/GET to treat ME/CFS is unjust. CBT/GET is not only hardly more effective than non-interventions or standard medical care, but many patients report that the therapy had affected them adversely, the majority of them even reporting substantial deterioration. Moreover, this review shows that exertion and thus GET most likely have a negative impact on many ME/CFS patients. Exertion induces [[post-exertional malaise]] with a decreased physical performance/aerobic capacity, increased muscoskeletal pain, neurocognitive impairment, "fatigue", and weakness, and a long lasting "recovery" time. This can be explained by findings that exertion may amplify pre-existing pathophysiological abnormalities underpinning ME/CFS, such as inflammation, immune dysfunction, oxidative and nitrosative stress, channelopathy, defective stress response mechanisms and a hypoactive hypothalamic-pituitary-adrenal axis. We conclude that it is unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful "rehabilitation therapies", such as CBT/GET.<ref name="Twisk2009"/></blockquote>

== Online Presence ==
* [https://twitter.com/FrankTwisk Twitter]
* [http://www.hetalternatief.org/ Website]
* [https://www.facebook.com/frank.twisk FaceBook]
* [https://www.linkedin.com/in/frank-twisk-9b4b477 LinkedIn]

== References ==
<references>
<ref name="Twisk, 2010">
{{Citation
| last1 = Twisk | first1 = Frank | authorlink1 = Frank Twisk
| last2 = Maes | first2 = Michael | authorlink2 = Michael Maes
| title = Chronic fatigue syndrome: Harvey and Wessely's (bio)psychosocial model versus a bio(psychosocial) model based on inflammatory and oxidative and nitrosative stress pathways
| journal = BMC Medicine | volume = 8 | issue = 35 | page =
| date = 2010
| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901228/pdf/1741-7015-8-35.pdf
}}
</ref>
<ref name="Twisk, 2015">
{{Citation
| last1 = Twisk | first1 = Frank | authorlink1 = Frank Twisk
| title = Commentary on Jason et al. (2015): towards separate empirical case definitions of Myalgic Encephalomyelitis and chronic fatigue syndrome
| journal = Health Psychology and Behavioral Medicine | volume = 3 | issue = 1 | page = 109-110
| date = 2015
| pmid =
| doi = 10.1080/21642850.2015.1027705
}}
</ref>
<ref name="Twisk, 2013">
{{Citation
| last1 = Twisk | first1 = Frank | authorlink1 = Frank Twisk
| title = Rebuttal to Ickmans et al. Association between cognitive performance, physical fitness, and physical activity level in women with chronic fatigue syndrome.]
| journal = Journal of Rehabilitation Research & Development| volume = 50 | issue = 9 | page = vii-viii
| date = 2013
| url = http://www.rehab.research.va.gov/jour/2013/509/pdf/letterstotheeditor509.pdf
}}
</ref>
<ref name="MaesM20111002">{{citation
| last1 = Maes | first1 = Michael | authorlink1 = Michael Maes
| last2 = Twisk | first2 = Frank N | authorlink2 = Frank Twisk
| last3 = Kubera | first3 = M | authorlink3 =
| last4 = Ringel | first4 = K | authorlink4 =
| last5 = Leunis | first5 = JC | authorlink5 =
| last6 = Geffard | first6 = M | authorlink6 =
| display-authors =
| title = Increased IgA responses to the LPS of commensal bacteria is associated with inflammation and activation of cell-mediated immunity in chronic fatigue syndrome
| journal = J Affect Disord | volume = 2012 Feb;136(3) | page = 909-17
| date = 2 Oct 2011
| pmid = 21967891 | doi = 10.1016/j.jad.2011.09.010
}}</ref>
<ref name="TwiskF20150711">{{citation
| last1 = Twisk | first1 = Frank NM | author-link1 = Frank Twisk
| last2 = Geraghty | first2 = Keith J | author-link2 = Keith Geraghty
| title = Deviant Cellular and Physiological Responses to Exercise in Myalgic Encephalomyelitis and Chronic Fatigue Syndrome
| journal = Jacobs Journal of Physiology | volume = 2015, 1(2): 007
| date = 11 Jul 2015
| url = http://www.jacobspublishers.com/images/Physiology/J_J_Physiology_1_2_007.pdf
}}</ref>
<ref name="TwiskF20150817video">{{citation
| last1 = Twisk | first1 = Frank NM | author-link1 = Frank Twisk
| title = ME and my life: past, present and future (video - Dutch w/ English CC)
| journal = YouTube | volume = Wetenschap voor Patienten - ME/cvs Vereniging
| date = 17 Aug 2015
| url = https://www.youtube.com/watch?v=Xjg8fLP-BpM
}}</ref>
<ref name="TwiskF20160118">{{citation
| last1 = Twisk | first1 = Frank NM | author-link1 = Frank Twisk
| title = (correspondence) PACE: CBT and GET are not rehabilitative therapies
| journal = The Lancet Psychiatry
| date = 18 Jan 2016
| doi = 10.1016/S2215-0366(15)00554-4
| url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00554-4/fulltext
}}</ref>
<ref name="Twisk2009">{{citation
| last1 = Twisk | first1 = Frank NM | authorlink1 = Frank Twisk
| last2 = Maes | first2 = Michael | authorlink2 = Michael Maes
| title = A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS.
| journal = Neuroendocrinology Letters | volume = 30| issue = 3| pages = 284–299
| date = 2008
| pmid = 19855350
}}</ref>
</references>
[[Category:People with ME, CFS, and/or FMS]] [[Category:Advocates or allies]] [[Category:Dutch advocates or allies‎]]

Steven Lubet

2017-06-14T14:51:45Z

DxCFS:/* Notable Articles */ Defense of the PACE trial is based on argumentation fallacies

[[File:Steven Lubet.png|300px|thumb|right|Source:northwestern.edu]]
'''Steven Lubet''' is a Northwestern Law Professor and has been living with [[Chronic Fatigue Syndrome]] (CFS) since 2006.

[http://www.abajournal.com/authors/4 Debra Cassens Weiss] wrote about Professor Lubet's CFS battle in ''ABA Journal'': [http://www.abajournal.com/news/article/well_known_law_prof_battles_stigma_of_chronic_fatigue_syndrome_by_going_pub/ Well-known law prof battles stigma of chronic fatigue syndrome by going public]. Professor Lubet notes patients are "treated as malingerers and met with disbelief" with many "referred to psychiatrists".<ref>[http://www.abajournal.com/news/article/well_known_law_prof_battles_stigma_of_chronic_fatigue_syndrome_by_going_pub/ "Well-known law prof battles stigma of chronic fatigue syndrome by going public"]</ref>

== Education ==
*BA, Northwestern University
*JD, University of California, Berkeley

==Open letters==
*2017, Mr. Lubert was one of the signers of [[an open letter to Psychological Medicine about “recovery” and the PACE trial| open letter]] requesting the journal, ''Psychological Medicine'', to retract their paper about the inflated recovery rates of the [[PACE trial]] immediately.<ref>http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/</ref>

==Notable articles==
Professor Lubet wrote the following articles on [[ME/CFS]] in ''The Faculty Lounge'':

*Nov, 2016: [http://www.thefacultylounge.org/2016/11/an-open-letter-to-dr-simon-wessely-defender-of-the-pace-study.html An Open Letter to Dr. Simon Wessely, Defender of the PACE Study]
*Nov, 2016: [http://www.thefacultylounge.org/2016/11/the-pace-study-open-access-and-conflicts-of-interest.html The PACE Study: Open Access and Conflicts of Interest (UPDATED with a note to commenters)]
*Sep, 2016: [http://www.thefacultylounge.org/2016/09/the-pace-study-results-exposed-as-meaningless-and-harmful.html The PACE Study Results Exposed as Meaningless and Harmful ]
*Aug, 2016: [http://www.thefacultylounge.org/2016/08/some-readers-will-recall-my-earlier-posts-about-the-serious-flaws-in-the-pace-trial-in-which-a-group-of-british-psychiatrist.html An Appalling Episode in ME/CFS Research]
*Nov, 2015: [http://www.thefacultylounge.org/2015/11/mecfs-and-law-schools.html ME/CFS and Law Schools]
*Oct, 2015: [http://www.thefacultylounge.org/2015/10/no-it-isnt-all-in-your-head.html No, It Isn't All in Your Head]
*Jan, 2015: [http://www.thefacultylounge.org/2015/01/laura-hillenbrand-chronic-fatigue-syndrome-and-me.html Laura Hillenbrand, Chronic Fatigue Syndrome, and me]

==Science journals==
*Jun, 2017: [http://journals.sagepub.com/doi/full/10.1177/1359105317712523 Defense of the PACE trial is based on argumentation fallacies]

== Learn more ==
*[https://en.wikipedia.org/wiki/Steven_Lubet Wikipedia page for Steven Lubet]
*[http://www.law.northwestern.edu/faculty/profiles/stevenlubet/ Northwestern Law Faculty page]

==See also==
*[[PACE trial]]

==References==
<references>

</references>

[[Category:People with ME, CFS, and/or FMS]][[Category:Psychological paradigm critics]]
[[Category:PACE trial critics]][[Category:Attorneys]]

Steven Lubet

2017-06-14T14:47:46Z

DxCFS:Fix Photo Link

[[File:Steven Lubet.png|300px|thumb|right|Source:northwestern.edu]]
'''Steven Lubet''' is a Northwestern Law Professor and has been living with [[Chronic Fatigue Syndrome]] (CFS) since 2006.

[http://www.abajournal.com/authors/4 Debra Cassens Weiss] wrote about Professor Lubet's CFS battle in ''ABA Journal'': [http://www.abajournal.com/news/article/well_known_law_prof_battles_stigma_of_chronic_fatigue_syndrome_by_going_pub/ Well-known law prof battles stigma of chronic fatigue syndrome by going public]. Professor Lubet notes patients are "treated as malingerers and met with disbelief" with many "referred to psychiatrists".<ref>[http://www.abajournal.com/news/article/well_known_law_prof_battles_stigma_of_chronic_fatigue_syndrome_by_going_pub/ "Well-known law prof battles stigma of chronic fatigue syndrome by going public"]</ref>

== Education ==
*BA, Northwestern University
*JD, University of California, Berkeley

==Open letters==
*2017, Mr. Lubert was one of the signers of [[an open letter to Psychological Medicine about “recovery” and the PACE trial| open letter]] requesting the journal, ''Psychological Medicine'', to retract their paper about the inflated recovery rates of the [[PACE trial]] immediately.<ref>http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/</ref>

==Notable Articles==
Professor Lubet wrote the following articles on [[ME/CFS]] in ''The Faculty Lounge'':

*Nov, 2016: [http://www.thefacultylounge.org/2016/11/an-open-letter-to-dr-simon-wessely-defender-of-the-pace-study.html An Open Letter to Dr. Simon Wessely, Defender of the PACE Study]
*Nov, 2016: [http://www.thefacultylounge.org/2016/11/the-pace-study-open-access-and-conflicts-of-interest.html The PACE Study: Open Access and Conflicts of Interest (UPDATED with a note to commenters)]
*Sept, 2016 [http://www.thefacultylounge.org/2016/09/the-pace-study-results-exposed-as-meaningless-and-harmful.html The PACE Study Results Exposed as Meaningless and Harmful ]
*Aug 2016 [http://www.thefacultylounge.org/2016/08/some-readers-will-recall-my-earlier-posts-about-the-serious-flaws-in-the-pace-trial-in-which-a-group-of-british-psychiatrist.html An Appalling Episode in ME/CFS Research]
*Nov, 2015: [http://www.thefacultylounge.org/2015/11/mecfs-and-law-schools.html ME/CFS and Law Schools]
*Oct, 2015: [http://www.thefacultylounge.org/2015/10/no-it-isnt-all-in-your-head.html No, It Isn't All in Your Head]
*Jan, 2015: [http://www.thefacultylounge.org/2015/01/laura-hillenbrand-chronic-fatigue-syndrome-and-me.html Laura Hillenbrand, Chronic Fatigue Syndrome, and me]

== Learn more ==
*[https://en.wikipedia.org/wiki/Steven_Lubet Wikipedia page for Steven Lubet]
*[http://www.law.northwestern.edu/faculty/profiles/stevenlubet/ Northwestern Law Faculty page]

==See also==
*[[PACE trial]]

==References==
<references>

</references>

[[Category:People with ME, CFS, and/or FMS]][[Category:Psychological paradigm critics]]
[[Category:PACE trial critics]][[Category:Attorneys]]

Vagus nerve infection hypothesis

2017-06-12T02:49:01Z

DxCFS:/* See also */ The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS

The '''Vagus Nerve Infection Hypothesis''' (VNIH) proposes that the symptoms of [[Chronic Fatigue Syndrome]] are caused by an infection in or around the [[vagus nerve]], longest nerve of the autonomic nervous system in the human body.

In 2013, [[Michael VanElzakker]], then a graduate student at Tufts University but now a postdoctoral researcher at Harvard Medical School, published the hypothesis.<ref name="VanElzakker2013"/>

The [[vagus nerve]], also called the tenth cranial nerve, starts in the brain and runs down the trunk of the body, with branches that innervate all of the major organs.<ref name="medscape_vn"/> It is responsible for the [[sickness response]], an involuntary response characterized by fatigue, fever, myalgia, depression, and other symptoms that are often observed in patients with CFS.<ref name="hhv6f-vnih"/>

==Theory==

As explained by Dr. [[Michael VanElzakker]]: "The vagus nerve infection hypothesis of CFS contends that CFS symptoms are a pathologically exaggerated version of normal sickness behavior that can occur when sensory vagal ganglia [structures containing a number of nerve cell bodies] or paraganglia [non-nerve cells that surround nerves] are themselves infected with any virus or bacteria.... [The] [[glial cell]]s [cells that support and protect neurons] can bombard the sensory vagus nerve with proinflammatory cytokines and other neuroexcitatory substances, initiating an exaggerated and intractable sickness behavior signal. According to this hypothesis, any pathogenic infection of the vagus nerve can cause CFS, which resolves the ongoing controversy about finding a single pathogen." The neuroimmune cells whose job is to protect the nerve, such as [[mast cell]]s and glial cells, can sense an infectious agent and become activated, in turn signaling the vagus nerve to tell the brain there is an infection present, causing a systemic reaction.<ref name="VanElzakker2013"/>

VanElzakker believes that any infectious agent with an affinity for nerve tissues can cause a vagus nerve infection, including [[HHV-6]], [[Epstein-Barr virus]], [[Varicella zoster virus]], [[Chickenpox]], certain kinds of [[enterovirus]]es and even [[Borrelia]], the bacterium that causes [[Lyme disease]]. He thinks this could explain why no single infective agent has been isolated as the cause of [[CFS]], even though all of these agents have been associated with disease.<ref name="lowhistchef-vnih"/>

To test his hypothesis, VanElzakker is using a combined [[MRI]] and [[PET scan]] with radiolabeled antibodies to look for "increased cellular activity in the brain stem in a place called the nucleus of the solitary tract, which is where about 80 percent of these sensory vagus nerve fibers have their cell bodies...The idea is that if we can see extra signal there, there’s more activity there in Chronic Fatigue Syndrome patients than there is in healthy people, that would be evidence that there’s an exaggerated signal coming from the vagus nerve into the brain."<ref name="lowhistchef-vnih"/>
In addition, he suggests that one possibility is vagus nerve biopsy samples from CFS patients who have died prematurely from other causes.<ref name="hhv6f-vnih"/> However, given the size and highly intricate branching of the vagus nerve, direct evidence of infection would be difficult to demonstrate.

==Treatment==
Potential treatments include:
*Antiviral treatments - potential problems with antivirals are that these drugs would need to be a broad spectrum antiviral because a specific virus may not be identified and that antiviral drugs tend not to be effective on the vagal paraganglia.<ref name="hhv6f-vnih"/> Dr. [[Jose Montoya]] and Dr. [[Martin Lerner]], have published studies suggesting that IV valganciclovir therapy may be effective for the subset of CFS patients suspected of having elevated IgG for [[EBV]]. Lerner also included patients with elevated IgG for [[CMV]]. Both Montoya and Lerner have shown that longer treatment terms (>6 months) have achieved greater success than short-term antiviral therapy.<ref name="Lerner2010"/><ref name="Montoya2013"/> Rodent studies have shown that the antiviral Famvir (famciclovir) penetrates peripheral nerve ganglia better than other antivirals (e.g., Thackray & Feld 1996 J Infect Dis 173; Thackray & Feld 1998 Antimicrob Agents & Chemother 42 [7]), which makes it an attractive option if symptoms are driven by latent or active herpesvirus infection of peripheral vagus ganglia.

*Glial cell inhibitors - such as lbudilast, an anti-inflammatory drug used mainly in Japan for asthma, stroke, and treatment of neuropathic pain as an adjunct with opioids.<ref>https://en.wikipedia.org/wiki/Ibudilast</ref> Ibudilast crosses the blood-brain barrier and suppresses [[glial cell]] activation.

*[[Vagus nerve stimulation]] - involves delivering electrical impulses to the vagus nerve via a medical device. Use is currently reserved as an adjunctive treatment for certain types of intractable epilepsy and treatment-resistant depression, but it is being researched as a viable treatment for many other conditions, including [[ME]], [[CFS]], and [[fibromyalgia]]<ref name="prohealth_vns"/>. Vagus nerve stimulation promotes the anti-inflammatory effects of the motor (efferent) vagus nerve. In the case of the vagus nerve infection hypothesis, it may also regulate exaggerated sensory (afferent) signaling.

*[[Mestinon]] (Pyridostigmine) - a drug that blocks the enzymatic breakdown of [[acetylcholine]], which is the primary neurotransmitter of the [[vagus nerve]], especially the parasympathetic/ motor/ efferent branch. Mestinon is frequently prescribed for [[POTS]], especially to improve tachycardia, and can work synergistically with vagus nerve stimulation.

*[[Celebrex]] - Celebrex is a COX2 inhibitor, which blocks an enzyme that is part of the production of prostaglandins. When glial cells become activated, they produce neuroexcitatory mediators - molecules that turn on nerve cells. According to the vagus nerve infection hypothesis, infection of vagus nerve ganglia causes activation of associated glial cells, which in turn overly-excite the vagus nerve via these mediators. Prostaglandins are one of these neuroexcitatory mediators, along with proinflammatory cytokines, nitric oxide, reactive oxygen species, glutamate, and nerve growth factor. Beside the antiinflammatory mechanism of COX2 inhibition, herpesviruses upregulate COX2 to aid with its own replication (e.g., Reynolds & Enquist 2006 Rev Med Virol 16).

*[[Ampligen]] - a drug that stimulates the production of natural [[interferon]].

==Evidence==
Indirect evidence is discussed at length in the hypothesis paper. Direct evidence of viral infection in the vagus nerve would be very difficult to obtain because the entire vagus nerve cannot be removed to be biopsied.

==Notable studies==
*2016: [http://www.sciencedirect.com/science/article/pii/S2213158216300584 Autonomic correlations with MRI are abnormal in the brainstem vasomotor centre in Chronic Fatigue Syndrome]<ref name="Barnden2016"/>
*2013, [http://www.ncbi.nlm.nih.gov/pubmed/23790471 Chronic fatigue syndrome from vagus nerve infection: a psychoneuroimmunological hypothesis.]<ref name="VanElzakker2013"/>

==Learn more==
*2016, [https://cfsremission.wordpress.com/2016/03/13/vagus-nerve-infection-hypothesis/ CFS Remission blog - ''Vagus Nerve Infection Hypothesis and the Driscoll Theory'']
*2015, [http://thelowhistaminechefpodcast.libsyn.com/chronic-fatigue-from-vagus-nerve-infection-a-psychoneuroimmunological-hypothesis The Low Histamine Chef podcast - ''Chronic Fatigue from Vagus Nerve Infection a Psychoneuroimmunological Hypothesis''] [http://thelowhistaminechef.com/harvard-neuroscientist-dr-michael-van-elzakker-chronic-fatigue-vagus-nerve-link/ transcript of podcast]
*2015, [http://c7c.37f.myftpupload.com/the-vagus-nerve-inflammation-connection/ The Low Histamine Chef blog - ''The Vagus Nerve Inflammation Connection'']
*2014, [http://simmaronresearch.com/2014/02/michael-vanelzakker-ph-d-talks-vagus-nerve-infection-hypothesis-chronic-fatigue-syndrome-mecfs/ ''Michael VanElzakker Ph.d Talks – About the Vagus Nerve Infection Hypothesis and Chronic Fatigue Syndrome (ME/CFS)''], by [[Cort Johnson]]
*2013, [http://hhv-6foundation.org/news/cfs-a-herpesvirus-infection-of-the-vagus-nerve HHV-6 Foundation Website - ''CFS: a herpesvirus infection of the vagus nerve?'']
*2013, [http://simmaronresearch.com/2013/12/one-theory-explain-vagus-nerve-infection-chronic-fatigue-syndrome/ ''One Theory To Explain Them All? The Vagus Nerve Infection Hypothesis for Chronic Fatigue Syndrome''], by [[Cort Johnson]]

==See also==
*[[Vagus nerve stimulation]]
*[https://twitter.com/search?f=tweets&vertical=default&q=%23VNIH&src=typd Twitter #VNIH]
*[[The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS]] by Dr. [[Willy Eriksen]]

==References==
<references>

<ref name="Barnden2016">{{citation
| last1 = Barnden | first1 = LR | authorlink1 = Leighton Barnden
| last2 = Kwiatek | first2 = R | authorlink2 = Richard Kwiatek
| last3 = Crouch | first3 = B | authorlink3 = Benjamin Crouch
| last4 = Burnet | first4 = R | authorlink4 = Richard Burnet
| last5 = Del Fante | first5 = P | authorlink5 = Peter Del Fante
| title = Autonomic correlations with MRI are abnormal in the brainstem vasomotor centre in Chronic Fatigue Syndrome
| journal = NeuroImage: Clinical| volume = 11 | page = 530-537
| date = 2016
| doi = 10.1016/j.nicl.2016.03.017
| url = http://www.sciencedirect.com/science/article/pii/S2213158216300584
}}</ref>

<ref name="VanElzakker2013">{{citation
| last1 = Van Elzakker | first1 = MB | authorlink1 = Michael Van ElZakker
| title = Chronic fatigue syndrome from vagus nerve infection: a psychoneuroimmunological hypothesis
| journal = Medical Hypotheses | volume = 81 | issue = 3 | page = 414-423
| date = Sep 2013
| pmid = 23790471 | doi = 10.1016/j.mehy.2013.05.034
| url = http://www.pdf-archive.com/2013/06/23/vanelzakker-vnih-cfs-in-press/vanelzakker-vnih-cfs-in-press.pdf
}}</ref>

<ref name="lowhistchef-vnih">{{citation
| last1 = Ykelenstam | first1 = Yasmina | authorlink1 = Yasmina Ykelenstam
| last2 = Van ElZakker | first2 = MB | authorlink2 = Michael Van ElZakker
| title = Harvard Neuroscientist Dr. Michael Van ElZakker: Chronic Fatigue Vagus Nerve Link
| type = interview
| journal = The Low Histamine Chef
| date = 8 Dec 2015
| url = http://thelowhistaminechef.com/harvard-neuroscientist-dr-michael-van-elzakker-chronic-fatigue-vagus-nerve-link
}}</ref>

<ref name="hhv6f-vnih">{{citation
| last1 = HHV-6 Foundation
| title = CFS: a herpesvirus infection of the vagus nerve?
| date = 13 Jul 2013
| url = http://hhv-6foundation.org/news/cfs-a-herpesvirus-infection-of-the-vagus-nerve
}}</ref>

<ref name="prohealth_vns">{{citation
| last1 = ProHealth Website
| title = Vagus Nerve Stimulation, Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS)
| date = 16 Feb 2016
| url = http://www.prohealth.com/library/showarticle.cfm?libid=24164
}}</ref>

<ref name="medscape_vn">{{citation
| last1 = Medscape
| title = Vagus Nerve Anatomy
| date = 17 Aug 2015
| url = http://emedicine.medscape.com/article/1875813-overview
}}</ref>

<ref name="Lerner2010">{{citation
| last1 = Lerner | first1 = AM | authorlink1 = A Martin Lerner
| last2 = Beqaj | first2 = S | authorlink2 = Safedin Beqaj
| last3 = Fitzgerald | first3 = JT | authorlink3 = James T Fitzgerald
| last4 = Gill | first4 = K | authorlink4 = Ken Gill
| last5 = Gill | first5 = C | authorlink5 = Carol Gill
| last6 = Edington | first6 = J | authorlink6 = James Edington
| title = Subset-directed antiviral treatment of 142 herpesvirus patients with chronic fatigue syndrome
| journal = Virus adaptation and treatment| volume = 2 | page = 47-57
| date = 2010
| url = https://www.dovepress.com/subset-directed-antiviral-treatment-of-142-herpesvirus-patients-with-c-peer-reviewed-article-VAAT
}}</ref>

<ref name="Montoya2013">{{citation
| last1 = Montoya | first1 = JG | authorlink1 = Jose Montoya
| last2 = Kogelnik | first2 = AM | authorlink2 = Andreas Kogelnik
| last3 = Bhangoo | first3 = M | authorlink3 =
| last4 = Lunn | first4 = MR | authorlink4 =
| last5 = Flamand | first5 = L | authorlink5 =
| last6 = Merrihew | first6 = LE | authorlink6 =
| last7 = Watt | first7 = T | authorlink7 =
| last8 = Kubo | first8 = JT | authorlink8 =
| last9 = Paik | first9 = J | authorlink9 =
| last10 = Desai | first10= M | authorlink10 =
| title = Randomized clinical trial to evaluate the efficacy and safety of valganciclovir in a subset of patients with chronic fatigue syndrome.
| journal = Journal of Medical Virology| volume = 85 | page = 2101-9
| date = 2013
| doi = 10.1002/jmv.23713
| url = http://www.ncbi.nlm.nih.gov/pubmed/23959519
}}</ref>

</references>
[[Category:Medical hypotheses]]

The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS

2017-06-12T02:46:44Z

DxCFS:x

'''The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS''' is a [http://www.medical-hypotheses.com/article/S0306-9877(16)30867-2/abstract hypothesis] by Dr. [[Willy Eriksen]] of the Norwegian Institute of Public Health.
==Abstract==

: According to the hypothesis presented here, [[myalgic encephalomyelitis]]/[[chronic fatigue syndrome]] ([[ME/CFS]]) develops over 3 steps: Step 1 is characterized by the aggregation of lymphoid cells in dorsal root ganglia or other nervous structures. The cause of this formation of ectopic lymphoid aggregates may be an acute infection, asymptomatic reactivations of a common neurotropic virus, exposure to a neurotoxin, or physical injury to peripheral nerves. In step 2, [[Epstein-Barr virus]] (EBV)-infected lymphocytes or monocytes bring [[EBV]] from the circulation to one or several of these lymphoid aggregates, whereupon cell-to-cell transmission of EBV and proliferation of latently EBV-infected lymphocytes lead to the presence of many EBV-infected cells in the lymphoid aggregates. The EBV-infected cells in the aggregates ignite an inflammation in the surrounding nervous tissue. This local inflammation elicits, in turn, a wave of glial cell activation that spreads from the EBV-infected area to parts of the nervous system that are not EBV-infected, disturbing the neuron-glial interaction in both the peripheral – and [[central nervous system]]. In step 3, immune cell exhaustion contributes to a consolidation of the pathological processes. There might be a cure: Infusions of autologous EBV-specific T-lymphocytes can perhaps remove the EBV-infected cells from the nervous system.<ref>[http://www.medical-hypotheses.com/article/S0306-9877(16)30867-2/abstract The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS - Medical Hypotheses]</ref>

==Learn more==
*[https://tracyduvall.com/2017/06/10/mecfs-a-new-explanation-and-cure/ ME/CFS: A new explanation – and cure?] by Tracy Duvall (2017)
*[https://tracyduvall.com/2017/06/10/eriksens-mecfs-hypothesis-interview/ Eriksen’s ME/CFS hypothesis: interview] by Tracy Duvall (2017)
*[https://tracyduvall.com/2017/06/09/__trashed/ Eriksen’s ME/CFS hypothesis: my comments] by Tracy Duvall (2017)

==See also==
*[[Vagus nerve infection hypothesis]]

== References ==

[[Category:Medical hypotheses]]

The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS

2017-06-12T02:22:46Z

DxCFS:x

The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS

2017-06-12T02:22:09Z

DxCFS:/* Abstract */ x

'''The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS''' is a [http://www.medical-hypotheses.com/article/S0306-9877(16)30867-2/abstract hypothesis] by [[Willy Eriksen]] of the Norwegian Institute of Public Health.
==Abstract==

: According to the hypothesis presented here, [[myalgic encephalomyelitis]]/[[chronic fatigue syndrome]] ([[ME/CFS]]) develops over 3 steps: Step 1 is characterized by the aggregation of lymphoid cells in dorsal root ganglia or other nervous structures. The cause of this formation of ectopic lymphoid aggregates may be an acute infection, asymptomatic reactivations of a common neurotropic virus, exposure to a neurotoxin, or physical injury to peripheral nerves. In step 2, [[Epstein-Barr virus]] (EBV)-infected lymphocytes or monocytes bring [[EBV]] from the circulation to one or several of these lymphoid aggregates, whereupon cell-to-cell transmission of EBV and proliferation of latently EBV-infected lymphocytes lead to the presence of many EBV-infected cells in the lymphoid aggregates. The EBV-infected cells in the aggregates ignite an inflammation in the surrounding nervous tissue. This local inflammation elicits, in turn, a wave of glial cell activation that spreads from the EBV-infected area to parts of the nervous system that are not EBV-infected, disturbing the neuron-glial interaction in both the peripheral – and [[central nervous system]]. In step 3, immune cell exhaustion contributes to a consolidation of the pathological processes. There might be a cure: Infusions of autologous EBV-specific T-lymphocytes can perhaps remove the EBV-infected cells from the nervous system.<ref>[http://www.medical-hypotheses.com/article/S0306-9877(16)30867-2/abstract The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS - Medical Hypotheses]</ref>

==Learn more==
*[https://tracyduvall.com/2017/06/10/mecfs-a-new-explanation-and-cure/ ME/CFS: A new explanation – and cure?] by Tracy Duvall (2017)
*[https://tracyduvall.com/2017/06/10/eriksens-mecfs-hypothesis-interview/ Eriksen’s ME/CFS hypothesis: interview] by Tracy Duvall (2017)
*[https://tracyduvall.com/2017/06/09/__trashed/ Eriksen’s ME/CFS hypothesis: my comments] by Tracy Duvall (2017)

== References ==

[[Category:Medical hypotheses]]

The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS

2017-06-12T02:17:49Z

DxCFS:/* Abstract */ Internal Links

'''The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS''' is a [http://www.medical-hypotheses.com/article/S0306-9877(16)30867-2/abstract hypothesis] by [[Willy Eriksen]] of the Norwegian Institute of Public Health.
==Abstract==

:According to the hypothesis presented here, [[myalgic encephalomyelitis]]/[[chronic fatigue syndrome]] (ME/CFS) develops over 3 steps: Step 1 is characterized by the aggregation of lymphoid cells in dorsal root ganglia or other nervous structures. The cause of this formation of ectopic lymphoid aggregates may be an acute infection, asymptomatic reactivations of a common neurotropic virus, exposure to a neurotoxin, or physical injury to peripheral nerves. In step 2, [[Epstein-Barr virus]] (EBV)-infected lymphocytes or monocytes bring [[EBV]] from the circulation to one or several of these lymphoid aggregates, whereupon cell-to-cell transmission of EBV and proliferation of latently EBV-infected lymphocytes lead to the presence of many EBV-infected cells in the lymphoid aggregates. The EBV-infected cells in the aggregates ignite an inflammation in the surrounding nervous tissue. This local inflammation elicits, in turn, a wave of glial cell activation that spreads from the EBV-infected area to parts of the nervous system that are not EBV-infected, disturbing the neuron-glial interaction in both the peripheral – and [[central nervous system]]. In step 3, immune cell exhaustion contributes to a consolidation of the pathological processes. There might be a cure: Infusions of autologous EBV-specific T-lymphocytes can perhaps remove the EBV-infected cells from the nervous system.<ref>[http://www.medical-hypotheses.com/article/S0306-9877(16)30867-2/abstract The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of [[ME/CFS]] - Medical Hypotheses]</ref>

==Learn more==
*[https://tracyduvall.com/2017/06/10/mecfs-a-new-explanation-and-cure/ ME/CFS: A new explanation – and cure?] by Tracy Duvall (2017)
*[https://tracyduvall.com/2017/06/10/eriksens-mecfs-hypothesis-interview/ Eriksen’s ME/CFS hypothesis: interview] by Tracy Duvall (2017)
*[https://tracyduvall.com/2017/06/09/__trashed/ Eriksen’s ME/CFS hypothesis: my comments] by Tracy Duvall (2017)

== References ==

[[Category:Medical hypotheses]]

The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS

2017-06-12T02:12:52Z

DxCFS:Internal Links

'''The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS''' is a [http://www.medical-hypotheses.com/article/S0306-9877(16)30867-2/abstract hypothesis] by [[Willy Eriksen]] of the Norwegian Institute of Public Health.
==Abstract==

:According to the hypothesis presented here, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) develops over 3 steps: Step 1 is characterized by the aggregation of lymphoid cells in dorsal root ganglia or other nervous structures. The cause of this formation of ectopic lymphoid aggregates may be an acute infection, asymptomatic reactivations of a common neurotropic virus, exposure to a neurotoxin, or physical injury to peripheral nerves. In step 2, [[Epstein-Barr virus]] (EBV)-infected lymphocytes or monocytes bring [[EBV]] from the circulation to one or several of these lymphoid aggregates, whereupon cell-to-cell transmission of EBV and proliferation of latently EBV-infected lymphocytes lead to the presence of many EBV-infected cells in the lymphoid aggregates. The EBV-infected cells in the aggregates ignite an inflammation in the surrounding nervous tissue. This local inflammation elicits, in turn, a wave of glial cell activation that spreads from the EBV-infected area to parts of the nervous system that are not EBV-infected, disturbing the neuron-glial interaction in both the peripheral – and [[central nervous system]]. In step 3, immune cell exhaustion contributes to a consolidation of the pathological processes. There might be a cure: Infusions of autologous EBV-specific T-lymphocytes can perhaps remove the EBV-infected cells from the nervous system.<ref>[http://www.medical-hypotheses.com/article/S0306-9877(16)30867-2/abstract The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS - Medical Hypotheses]</ref>

==Learn more==
*[https://tracyduvall.com/2017/06/10/mecfs-a-new-explanation-and-cure/ ME/CFS: A new explanation – and cure?] by Tracy Duvall (2017)
*[https://tracyduvall.com/2017/06/10/eriksens-mecfs-hypothesis-interview/ Eriksen’s ME/CFS hypothesis: interview] by Tracy Duvall (2017)
*[https://tracyduvall.com/2017/06/09/__trashed/ Eriksen’s ME/CFS hypothesis: my comments] by Tracy Duvall (2017)

== References ==

[[Category:Medical hypotheses]]

The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS

2017-06-12T02:09:58Z

DxCFS:Abstract

'''The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS''' is a [http://www.medical-hypotheses.com/article/S0306-9877(16)30867-2/abstract hypothesis] by [[Willy Eriksen]] of the Norwegian Institute of Public Health.
==Abstract==

:According to the hypothesis presented here, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) develops over 3 steps: Step 1 is characterized by the aggregation of lymphoid cells in dorsal root ganglia or other nervous structures. The cause of this formation of ectopic lymphoid aggregates may be an acute infection, asymptomatic reactivations of a common neurotropic virus, exposure to a neurotoxin, or physical injury to peripheral nerves. In step 2, Epstein-Barr virus (EBV)-infected lymphocytes or monocytes bring EBV from the circulation to one or several of these lymphoid aggregates, whereupon cell-to-cell transmission of EBV and proliferation of latently EBV-infected lymphocytes lead to the presence of many EBV-infected cells in the lymphoid aggregates. The EBV-infected cells in the aggregates ignite an inflammation in the surrounding nervous tissue. This local inflammation elicits, in turn, a wave of glial cell activation that spreads from the EBV-infected area to parts of the nervous system that are not EBV-infected, disturbing the neuron-glial interaction in both the peripheral – and central nervous system. In step 3, immune cell exhaustion contributes to a consolidation of the pathological processes. There might be a cure: Infusions of autologous EBV-specific T-lymphocytes can perhaps remove the EBV-infected cells from the nervous system.<ref>[http://www.medical-hypotheses.com/article/S0306-9877(16)30867-2/abstract The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS - Medical Hypotheses]</ref>

==Learn more==
*[https://tracyduvall.com/2017/06/10/mecfs-a-new-explanation-and-cure/ ME/CFS: A new explanation – and cure?] by Tracy Duvall (2017)
*[https://tracyduvall.com/2017/06/10/eriksens-mecfs-hypothesis-interview/ Eriksen’s ME/CFS hypothesis: interview] by Tracy Duvall (2017)
*[https://tracyduvall.com/2017/06/09/__trashed/ Eriksen’s ME/CFS hypothesis: my comments] by Tracy Duvall (2017)

==See also==
*[[EBV]]

== References ==

[[Category:Medical hypotheses]]

The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS

2017-06-12T02:00:43Z

DxCFS:x

'''The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS''' is a hypothesis by [[Willy Eriksen]] of the Norwegian Institute of Public Health.<ref>[http://www.medical-hypotheses.com/article/S0306-9877(16)30867-2/abstract The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS - Medical Hypotheses]</ref>

==Learn more==
*[https://tracyduvall.com/2017/06/10/mecfs-a-new-explanation-and-cure/ ME/CFS: A new explanation – and cure?] by Tracy Duvall (2017)
*[https://tracyduvall.com/2017/06/10/eriksens-mecfs-hypothesis-interview/ Eriksen’s ME/CFS hypothesis: interview] by Tracy Duvall (2017)
*[https://tracyduvall.com/2017/06/09/__trashed/ Eriksen’s ME/CFS hypothesis: my comments] by Tracy Duvall (2017)

==See also==
*[[EBV]]

== References ==

[[Category:Medical hypotheses]]

The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS

2017-06-12T01:59:32Z

DxCFS:/* Learn more */ by Tracy Duvall

'''The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS''' is a hypothesis by [[Willy Eriksen]] of the Norwegian Institute of Public Health.<ref>[http://www.medical-hypotheses.com/article/S0306-9877(16)30867-2/abstract The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS - Medical Hypotheses]</ref>

==Learn more==
==Learn more==
*[https://tracyduvall.com/2017/06/10/mecfs-a-new-explanation-and-cure/ ME/CFS: A new explanation – and cure?] by Tracy Duvall (2017)
*[https://tracyduvall.com/2017/06/10/eriksens-mecfs-hypothesis-interview/ Eriksen’s ME/CFS hypothesis: interview] by Tracy Duvall (2017)
*[https://tracyduvall.com/2017/06/09/__trashed/ Eriksen’s ME/CFS hypothesis: my comments] by Tracy Duvall (2017)

==See also==
*[[EBV]]

== References ==

[[Category:Medical hypotheses]]

Willy Eriksen

2017-06-12T01:58:41Z

DxCFS:/* Learn more */ by Tracy Duvall

Dr. '''Willy Bjarne Eriksen''' works for the [https://www.fhi.no/en/about/about-niph/departments-and-centres/alle-ansatte/u-x/willy-bjarne-eriksen/ Norwegian Institute of Public Health in the Department of Mental Health and Suicide]. He authored the paper ''[[The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS]]''.

==Learn more==
*[https://tracyduvall.com/2017/06/10/mecfs-a-new-explanation-and-cure/ ME/CFS: A new explanation – and cure?] by Tracy Duvall (2017)
*[https://tracyduvall.com/2017/06/10/eriksens-mecfs-hypothesis-interview/ Eriksen’s ME/CFS hypothesis: interview] by Tracy Duvall (2017)
*[https://tracyduvall.com/2017/06/09/__trashed/ Eriksen’s ME/CFS hypothesis: my comments] by Tracy Duvall (2017)

==See also==
*[[EBV]]

== Online Presence ==
*[https://www.labome.org/expert/norway/university/eriksen/willy-eriksen-233772.html Labome.org]
*[http://www.medical-hypotheses.com/action/doSearch?searchType=authorLookUp&author=Eriksen,%20Willy&prod=HA Medical Hypotheses]
*[https://www.ncbi.nlm.nih.gov/pubmed/?term=Eriksen%20W%5BAuthor%5D&cauthor=true&cauthor_uid=10451596 PubMed]

[[Category:Researchers]] [[Category:Norway researchers]]

Willy Eriksen

2017-06-12T01:54:38Z

DxCFS:x

Dr. '''Willy Bjarne Eriksen''' works for the [https://www.fhi.no/en/about/about-niph/departments-and-centres/alle-ansatte/u-x/willy-bjarne-eriksen/ Norwegian Institute of Public Health in the Department of Mental Health and Suicide]. He authored the paper ''[[The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS]]''.

==Learn more==
*[https://tracyduvall.com/2017/06/10/mecfs-a-new-explanation-and-cure/ ME/CFS: A new explanation – and cure?]
*[https://tracyduvall.com/2017/06/10/eriksens-mecfs-hypothesis-interview/ Eriksen’s ME/CFS hypothesis: interview]

==See also==
*[[EBV]]

== Online Presence ==
*[https://www.labome.org/expert/norway/university/eriksen/willy-eriksen-233772.html Labome.org]
*[http://www.medical-hypotheses.com/action/doSearch?searchType=authorLookUp&author=Eriksen,%20Willy&prod=HA Medical Hypotheses]
*[https://www.ncbi.nlm.nih.gov/pubmed/?term=Eriksen%20W%5BAuthor%5D&cauthor=true&cauthor_uid=10451596 PubMed]

[[Category:Researchers]] [[Category:Norway researchers]]

Willy Eriksen

2017-06-12T01:51:53Z

DxCFS:See also

Dr. '''Willy Eriksen''' works for the [https://www.fhi.no/en/about/about-niph/departments-and-centres/alle-ansatte/u-x/willy-bjarne-eriksen/ Norwegian Institute of Public Health in the Department of Mental Health and Suicide]. He authored the paper ''[[The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS]]''.

==Learn more==
*[https://tracyduvall.com/2017/06/10/mecfs-a-new-explanation-and-cure/ ME/CFS: A new explanation – and cure?]
*[https://tracyduvall.com/2017/06/10/eriksens-mecfs-hypothesis-interview/ Eriksen’s ME/CFS hypothesis: interview]

==See also==
*[[EBV]]

== Online Presence ==
*[https://www.labome.org/expert/norway/university/eriksen/willy-eriksen-233772.html Labome.org]
*[http://www.medical-hypotheses.com/action/doSearch?searchType=authorLookUp&author=Eriksen,%20Willy&prod=HA Medical Hypotheses]
*[https://www.ncbi.nlm.nih.gov/pubmed/?term=Eriksen%20W%5BAuthor%5D&cauthor=true&cauthor_uid=10451596 PubMed]

[[Category:Researchers]] [[Category:Norway researchers]]

The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS

2017-06-12T01:50:51Z

DxCFS:See also

'''The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS''' is a hypothesis by [[Willy Eriksen]] of the Norwegian Institute of Public Health.<ref>[http://www.medical-hypotheses.com/article/S0306-9877(16)30867-2/abstract The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS - Medical Hypotheses]</ref>

==Learn more==
*[https://tracyduvall.com/2017/06/10/mecfs-a-new-explanation-and-cure/ ME/CFS: A new explanation – and cure?]
*[https://tracyduvall.com/2017/06/10/eriksens-mecfs-hypothesis-interview/ Eriksen’s ME/CFS hypothesis: interview]

==See also==
*[[EBV]]

== References ==

[[Category:Medical hypotheses]]

The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS

2017-06-12T01:43:15Z

DxCFS:Learn more

'''The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS''' is a hypothesis by [[Willy Eriksen]] of the Norwegian Institute of Public Health.<ref>[http://www.medical-hypotheses.com/article/S0306-9877(16)30867-2/abstract The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS - Medical Hypotheses]</ref>

==Learn more==
*[https://tracyduvall.com/2017/06/10/mecfs-a-new-explanation-and-cure/ ME/CFS: A new explanation – and cure?]
*[https://tracyduvall.com/2017/06/10/eriksens-mecfs-hypothesis-interview/ Eriksen’s ME/CFS hypothesis: interview]

== References ==

[[Category:Medical hypotheses]]

Willy Eriksen

2017-06-12T01:42:06Z

DxCFS:Learn more

'''Willy Eriksen''' works for the [https://www.fhi.no/en/about/about-niph/departments-and-centres/alle-ansatte/u-x/willy-bjarne-eriksen/ Norwegian Institute of Public Health in the Department of Mental Health and Suicide]. He authored the paper ''[[The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS]]''.

==Learn more==
*[https://tracyduvall.com/2017/06/10/mecfs-a-new-explanation-and-cure/ ME/CFS: A new explanation – and cure?]
*[https://tracyduvall.com/2017/06/10/eriksens-mecfs-hypothesis-interview/ Eriksen’s ME/CFS hypothesis: interview]

== Online Presence ==
*[https://www.labome.org/expert/norway/university/eriksen/willy-eriksen-233772.html Labome.org]
*[http://www.medical-hypotheses.com/action/doSearch?searchType=authorLookUp&author=Eriksen,%20Willy&prod=HA Medical Hypotheses]
*[https://www.ncbi.nlm.nih.gov/pubmed/?term=Eriksen%20W%5BAuthor%5D&cauthor=true&cauthor_uid=10451596 PubMed]

[[Category:Researchers]] [[Category:Norway researchers]]

What happens when you have a disease doctors can't diagnose - TED Talk (2016)

2017-06-09T20:26:09Z

DxCFS:/* Summary */ Hyperlink

[[File:J_Brea_TED.JPG|300px|thumb|right|Jennifer Brea - Source:TED.com]]

'''What happens when you have a disease doctors can't diagnose - TED Talk (2016)''' is about [[Jennifer Brea]]'s experience of her disease onset, a psychiatric misdiagnosis of conversion disorder, becoming bedbound and wheelchair bound due to a walk home from her neurologist's office, her correct diagnosis of [[Myalgic Encephalomyelitis]], and her pursuit for accurate knowledge about her disease.

==Summary==
"Five years ago, [https://en.wikipedia.org/wiki/TED_(conference)#TED_Fellows TED Fellow] Jennifer Brea became progressively ill with myalgic encephalomyelitis, commonly known as [[chronic fatigue syndrome]], a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her condition, whose root causes and physical effects we don't fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat."<ref>[https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose What happens when you have a disease doctors can't diagnose - TED Talk (2016) by Jennifer Brea]</ref>

==Viewing options==
*[https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose TED site]
*[https://www.youtube.com/watch?v=Fb3yp4uJhq0 Youtube]

==See also==
*[[Unrest]] (2017) Documentary by Jennifer Brea

==References==

What happens when you have a disease doctors can't diagnose - TED Talk (2016)

2017-06-08T20:04:12Z

DxCFS:x

[[File:J_Brea_TED.JPG|300px|thumb|right|Jennifer Brea - Source:TED.com]]

'''What happens when you have a disease doctors can't diagnose - TED Talk (2016)''' is about [[Jennifer Brea]]'s experience of her disease onset, a psychiatric misdiagnosis of conversion disorder, becoming bedbound and wheelchair bound due to a walk home from her neurologist's office, her correct diagnosis of [[Myalgic Encephalomyelitis]], and her pursuit for accurate knowledge about her disease.

==Summary==
"Five years ago, TED Fellow Jennifer Brea became progressively ill with myalgic encephalomyelitis, commonly known as [[chronic fatigue syndrome]], a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her condition, whose root causes and physical effects we don't fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat."<ref>[https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose What happens when you have a disease doctors can't diagnose - TED Talk (2016) by Jennifer Brea]</ref>

==Viewing options==
*[https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose TED site]
*[https://www.youtube.com/watch?v=Fb3yp4uJhq0 Youtube]

==See also==
*[[Unrest]] (2017) Documentary by Jennifer Brea

==References==

David Tuller

2017-06-08T15:35:57Z

DxCFS:Citation

[[File:David tuller.jpg|right]]
'''David Tuller''', DrPh, is academic coordinator of [https://en.wikipedia.org/wiki/University_of_California%2C_Berkeley University of California, Berkeley]'s joint masters program in public health and journalism. He was a reporter and editor for ten years at the ''San Francisco Chronicle'', served as health editor at ''Salon.com'' and frequently writes about health for ''The New York Times''.<ref>[https://journalism.berkeley.edu/faculty/david_tuller/ University of California, Berkeley - Berkeley Journalism - David Tuller Bio]</ref>

He's an experienced public health activist with a background as an ACT UP/NY activist which included an arrest at the Wall Street demonstration in 1987.<ref>http://mpetrelis.blogspot.com/2013/05/jay-blotchers-act-up-friends-reunion-in.html</ref>

David Tuller covered the [[PACE trial]] results for ''The New York Times'' as health editor in February 2011. <ref> http://www.nytimes.com/2011/02/18/health/research/18fatigue.html </ref> However he became concerned about the trial and wrote a further article regarding case definitions which resulted in an immediate response from the PACE trial authors which resulted him in investigating the trial and its authors further after contact with others in the patient community. <ref> http://www.nytimes.com/2011/03/08/health/research/08fatigue.html </ref> <ref> http://www.nytimes.com/2011/03/15/health/15letters-STUDYINGAFAT_LETTERS.html </ref>

Tuller is sympathetic toward the cause of the [[myalgic encephalomyelitis]]/[[chronic fatigue syndrome]] ([[ME/CFS]]) patient community. In an article in 2015 he wrote:

<blockquote>"In the course of my reporting, I’d realized that the disease was both devastating and widely misunderstood. People were really, really sick—some were homebound for months and years at a stretch. Yet their condition had been saddled with one of the most condescending names ever given a major illness."<ref>[http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped "Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough"]</ref></blockquote>

==Talks & interviews==
*May 31 2017, [[Virology blog]] Podcast: [http://www.microbe.tv/twiv/twivs-tuller3/ TWiV Special: Trial by Error, Continued] David Tuller returns to discuss the continuing saga of the UK’s PACE trial for chronic fatigue syndrome, including the accusation that he is engaging in libelous blogging.

*Feb 20 2017, [[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]]

*Oct 29 2016, Undark Podcast [http://undark.org/2016/10/31/undark-podcast-chronic-fatigue/ #8: Worse Than the Disease] Dr. Tuller [[Graded Exercise Therapy]] (GET) commonly prescribed for chronic fatigue syndrome — one for which supporting research is now unraveling.

* Aug 21 2016, Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-403/ TWiV 403: It’s not easy being vaccine] Discussion with David Tuller regarding PACE trial at 00.17.38- 00.23.57.

*Jul 10 2016, Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error], Dr. Tuller speaks at length and in detail about the [[PACE trial]] (calling the PACE Trial preposterous and a pack of nonsense, and a piece of crap) and [[FINE trial]], ''[[The Lancet]]'', ''[[British Medical Journal]]'' (BMJ) and ''[[PLOS ONE]]'', patients being ill yet deconstructing the PACE Trial, how [[ME/CFS]] is a disease being treated inappropriately with [[Exercise]], [[GET]] and [[CBT]], touches on the [[Institute of Medicine report]] and [[SEID]], [[Valerie Eliot Smith]] and [[Karina Hansen]], and more.<ref>[http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error]</ref>

*Feb 28 2016, [https://www.youtube.com/watch?v=1fS6Gzc52VI Speech on PACE Trial with Q&As] in Amsterdam.

*Feb 27 2016, [https://www.youtube.com/watch?v=UN1bYhkDHA4&feature=youtu.be Discussed the flaws of the Pace trial] with [[Frank Twisk]] while in Amsterdam at The [[Forgotten Plague]] Conference.

*Feb 6 2011, Virology blog podcast: [http://www.twiv.tv/2011/02/06/twiv-119-science-and-journalism-with-david-tuller/ TWiV 119: Science and journalism with David Tuller]. Dr. Tuller appeared as a guest on [[Vincent Racaniello]]'s podcast.

==Awards==
*2016, [[IACFS/ME]] Special Service Award - for outstanding personal effort and contribution to the CFS/ME community
*2016, [[Tymes Trust]] Award for Scientific Journalism<ref>https://www.facebook.com/tymestrust/photos/pb.1482582732026864.-2207520000.1477637753./1823344051284062/?type=3&theater</ref>

==Online presence==
*[http://www.twitter.com/davidtuller1 Twitter]
*[https://www.crowdrise.com/virology-blogs-trial-by-error-more-reporting-on-pace-mecfs-and-related-issues1/fundraiser/davidtuller?utm_source=dash-gtwo-cr&utm_platform=twt&utm_device=desktop Crowdrise] (2017) Virology Blog's Trial By Error: Reporting on PACE, ME/CFS and Related Issues

==Writings about ME/CFS==
*May 22 2017 [http://www.virology.ws/2017/05/22/trial-by-error-continued-me-research-uk-drops-out-of-cmrc/ Trial By Error, Continued: ME Research UK Drops Out of CMRC]
*May 15 2017 [http://www.virology.ws/2017/05/15/trial-by-error-continued-the-cmrc-affirms-full-support-for-libelous-esther/ Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Esther]
*May 10 2017 [http://www.virology.ws/2017/05/10/trial-by-error-continued-cmrc-to-virology-blog-fk-off/ Trial By Error, Continued: CMRC to Virology Blog: “F**k Off!”]
*May 8 2017 [http://www.virology.ws/2017/05/08/trial-by-error-continued-an-open-letter-to-the-board-of-the-cfsme-research-collaborative/ Trial By Error, Continued: An Open Letter to the Board of the CFS/ME Research Collaborative]
*May 3 2017 [http://www.virology.ws/2017/05/03/trial-by-error-continued-my-libelous-blogging-on-virology-blog/ Trial By Error, Continued: My Libelous Blogging on Virology Blog]
*Mar 23 2017 [http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/ An open letter to Psychological Medicine, again!]
*Mar 18 2017 The New York Times, [https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?smid=tw-share&_r=0 Getting It Wrong on Chronic Fatigue Syndrome] (with [[Julie Rehmeyer]]) and Letters of response' [https://mobile.nytimes.com/2017/03/27/opinion/understanding-and-treating-chronic-fatigue.html?em_pos=small&emc=edit_ty_20170327&nl=opinion-today&nl_art=14&nlid=77538787&ref=headline&te=1&referer= Letters - The New York Times]
*Mar 13 2017 [http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/ An open letter to Psychological Medicine about “recovery” and the PACE trial]
*Nov 28 2016 [http://www.virology.ws/2016/11/28/trial-by-error-continued-a-follow-up-post-on-fitnet-nhs/ Trial By Error, Continued: A Follow-Up Post on FITNET-NHS]
*Nov 21 2016 [http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/ Trial By Error, Continued: The New FITNET Trial for Kids]
*Oct 27 2016 [http://undark.org/article/chronic-fatigue-graded-exercise-pace/ ''Worse Than the Disease'']
*Sep 22 2016 [http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ Trial By Error, Continued: The Real Data]
*Sep 6 2016 [http://www.virology.ws/2016/09/06/open-letter-to-queen-mary-university-london-about-pace/ Open letter to Queen Mary University of London about PACE]
*Sep 1 2016 [http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ Trial By Error, Continued: My Questions for Lancet Editor Richard Horton]
*Aug 29 2016 [http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ Once Again, Lancet Stumbles on PACE]
*May 23 2016 [http://www.virology.ws/2016/05/23/an-open-letter-to-plos-one/. An open letter to PLoS One.]
*Feb 10 2016 [http://www.virology.ws/2016/02/10/open-letter-lancet-again/ An open letter to The Lancet, again]
*Feb 4 2016 [http://healthaffairs.org/blog/2016/02/04/reexamining-chronic-fatigue-syndrome-research-and-treatment-policy/ Reexamining Chronic Fatigue Syndrome Research And Treatment Policy]
*Feb 1 2016 [http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/ Trial By Error, Continued: A Few Words About “Harassment”]
*Jan 19 2016 [http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/ Trial By Error, Continued: More Nonsense from The Lancet Psychiatry]
*Jan 19 2016 [http://www.virology.ws/2016/01/19/at-least-were-not-vexatious/ At least we’re not vexatious]
*Jan 7 2016 [http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/ Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?] (with [[Julie Rehmeyer]])
*Jan 4 2016 [http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/ Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues]
*Dec 22 2015 [http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/ Revisiting the PLoS One economics analysis of PACE]
*Dec 17 2015 [http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/ A request for data from the PACE trial]
*Nov 18 2015 [http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped "Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough"]
*Nov 17 2015 [http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ "Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?"]
*Nov 13 2015 [http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/ "An open letter to Dr. Richard Horton and The Lancet"]
*Nov 9 2015 [http://www.virology.ws/2015/11/09/trial-by-error-continued-why-has-the-pace-studys-sister-trial-been-disappeared-and-forgotten/ "Trial By Error, Continued: Why has the PACE Study’s Sister Trial been Disappeared and Forgotten?"]
*Nov 4 2015 [http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/ "Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?"]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/ "David Tuller responds to the PACE Investigators"]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/ PACE trial investigators respond to David Tuller]
*Oct 23 2015 [http://www.virology.ws/2015/10/23/trial-by-error-iii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (final instalment)"]
*Oct 22 2015 [http://www.virology.ws/2015/10/22/trial-by-error-ii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second instalment)"]
*Oct 21 2015 [http://www.virology.ws/2015/10/21/trial-by-error-i/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study"]
*Feb 10 2015 [http://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/ "Chronic Fatigue Syndrome Gets a New Name"]
*Nov 24 2014 [[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)]]
*Jan 27 2014 [http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome#.tnegBjJ82 How "Chronic Fatigue Syndrome" Obscures A Serious Illness]
*Sep 18 2012 [http://well.blogs.nytimes.com/2012/09/18/chronic-fatigue-syndrome-back-to-square-1/ "Chronic Fatigue Syndrome Back to Square 1"]
*Feb 6 2012 [http://www.nytimes.com/2012/02/07/health/fallout-from-fatigue-syndrome-retraction-is-far-and-wide.html?pagewanted=1&_r=1 "Fallout From Fatigue Syndrome Retraction Is Wide"]
*Dec 26 2011 [http://www.nytimes.com/2011/12/27/health/research/scholars-retract-another-study-linking-xmrv-to-chronic-fatigue-syndrome.html "Scholars Retract Another Study Linking Virus to Fatigue Syndrome"]
*Dec 22 2011 [http://www.nytimes.com/2011/12/23/health/research/science-journal-retracts-chronic-fatigue-syndrome-paper.html?ref=research "Fatigue Syndrome Study Is Retracted by Journal"]
*Nov 23 2011 [http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/ "Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale"]
*Sep 22 2011 [http://www.nytimes.com/2011/09/23/health/research/23fatigue.html "Viral Theory Is Set Back in Chronic Fatigue Syndrome Study"]
*Jun 1 2011 [http://www.nytimes.com/2011/06/01/health/research/01fatigue.html?_r=1 "2 Studies Examine Syndrome of Fatigue"]
*Mar 4 2011 [http://www.nytimes.com/2011/03/08/health/research/08fatigue.html "Defining an Illness Is Fodder for Debate"]
*Feb 17 2011 [http://www.nytimes.com/2011/02/18/health/research/18fatigue.html "Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds"]
*Jan 3 2011 [http://www.nytimes.com/2011/01/04/health/04fatigue.html "Exhausted by Illness, and Doubts"]
*Aug 24 2010 [http://query.nytimes.com/gst/fullpage.html?res=9C00E4DB1439F937A1575BC0A9669D8B63 "Study Links Chronic Fatigue to Virus Class"]
*May 30 2008 [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-expert.html "Learning Firsthand About Chronic Fatigue Syndrome"]
*May 30 2008 [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-questions.html "What to Ask About Chronic Fatigue Syndrome"]
*Jul 17 2007 [http://www.nytimes.com/2007/07/17/science/17fatigue.html "Chronic Fatigue No Longer Seen as 'Yuppie Flu'"]

==Learn more==
*[http://www.berkeleywellness.com/author/davidtullerdrph Berkeley Wellness - David Tuller]

==References==
<References/>

[[Category:Psychological paradigm critics]][[Category:PACE trial critics]]

David Tuller

2017-06-08T15:17:16Z

DxCFS:x

[[File:David tuller.jpg|right]]
'''David Tuller''', DrPh, is academic coordinator of [https://en.wikipedia.org/wiki/University_of_California%2C_Berkeley University of California, Berkeley]'s joint masters program in public health and journalism. He was a reporter and editor for ten years at the ''San Francisco Chronicle'', served as health editor at ''Salon.com'' and frequently writes about health for ''The New York Times''.

He's an experienced public health activist with a background as an ACT UP/NY activist which included an arrest at the Wall Street demonstration in 1987.<ref>http://mpetrelis.blogspot.com/2013/05/jay-blotchers-act-up-friends-reunion-in.html</ref>

David Tuller covered the [[PACE trial]] results for ''The New York Times'' as health editor in February 2011. <ref> http://www.nytimes.com/2011/02/18/health/research/18fatigue.html </ref> However he became concerned about the trial and wrote a further article regarding case definitions which resulted in an immediate response from the PACE trial authors which resulted him in investigating the trial and its authors further after contact with others in the patient community. <ref> http://www.nytimes.com/2011/03/08/health/research/08fatigue.html </ref> <ref> http://www.nytimes.com/2011/03/15/health/15letters-STUDYINGAFAT_LETTERS.html </ref>

Tuller is sympathetic toward the cause of the [[myalgic encephalomyelitis]]/[[chronic fatigue syndrome]] ([[ME/CFS]]) patient community. In an article in 2015 he wrote:

<blockquote>"In the course of my reporting, I’d realized that the disease was both devastating and widely misunderstood. People were really, really sick—some were homebound for months and years at a stretch. Yet their condition had been saddled with one of the most condescending names ever given a major illness."<ref>[http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped "Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough"]</ref></blockquote>

==Talks & interviews==
*May 31 2017, [[Virology blog]] Podcast: [http://www.microbe.tv/twiv/twivs-tuller3/ TWiV Special: Trial by Error, Continued] David Tuller returns to discuss the continuing saga of the UK’s PACE trial for chronic fatigue syndrome, including the accusation that he is engaging in libelous blogging.

*Feb 20 2017, [[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]]

*Oct 29 2016, Undark Podcast [http://undark.org/2016/10/31/undark-podcast-chronic-fatigue/ #8: Worse Than the Disease] Dr. Tuller [[Graded Exercise Therapy]] (GET) commonly prescribed for chronic fatigue syndrome — one for which supporting research is now unraveling.

* Aug 21 2016, Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-403/ TWiV 403: It’s not easy being vaccine] Discussion with David Tuller regarding PACE trial at 00.17.38- 00.23.57.

*Jul 10 2016, Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error], Dr. Tuller speaks at length and in detail about the [[PACE trial]] (calling the PACE Trial preposterous and a pack of nonsense, and a piece of crap) and [[FINE trial]], ''[[The Lancet]]'', ''[[British Medical Journal]]'' (BMJ) and ''[[PLOS ONE]]'', patients being ill yet deconstructing the PACE Trial, how [[ME/CFS]] is a disease being treated inappropriately with [[Exercise]], [[GET]] and [[CBT]], touches on the [[Institute of Medicine report]] and [[SEID]], [[Valerie Eliot Smith]] and [[Karina Hansen]], and more.<ref>[http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error]</ref>

*Feb 28 2016, [https://www.youtube.com/watch?v=1fS6Gzc52VI Speech on PACE Trial with Q&As] in Amsterdam.

*Feb 27 2016, [https://www.youtube.com/watch?v=UN1bYhkDHA4&feature=youtu.be Discussed the flaws of the Pace trial] with [[Frank Twisk]] while in Amsterdam at The [[Forgotten Plague]] Conference.

*Feb 6 2011, Virology blog podcast: [http://www.twiv.tv/2011/02/06/twiv-119-science-and-journalism-with-david-tuller/ TWiV 119: Science and journalism with David Tuller]. Dr. Tuller appeared as a guest on [[Vincent Racaniello]]'s podcast.

==Awards==
*2016, [[IACFS/ME]] Special Service Award - for outstanding personal effort and contribution to the CFS/ME community
*2016, [[Tymes Trust]] Award for Scientific Journalism<ref>https://www.facebook.com/tymestrust/photos/pb.1482582732026864.-2207520000.1477637753./1823344051284062/?type=3&theater</ref>

==Online presence==
*[http://www.twitter.com/davidtuller1 Twitter]
*[https://www.crowdrise.com/virology-blogs-trial-by-error-more-reporting-on-pace-mecfs-and-related-issues1/fundraiser/davidtuller?utm_source=dash-gtwo-cr&utm_platform=twt&utm_device=desktop Crowdrise] (2017) Virology Blog's Trial By Error: Reporting on PACE, ME/CFS and Related Issues

==Writings about ME/CFS==
*May 22 2017 [http://www.virology.ws/2017/05/22/trial-by-error-continued-me-research-uk-drops-out-of-cmrc/ Trial By Error, Continued: ME Research UK Drops Out of CMRC]
*May 15 2017 [http://www.virology.ws/2017/05/15/trial-by-error-continued-the-cmrc-affirms-full-support-for-libelous-esther/ Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Esther]
*May 10 2017 [http://www.virology.ws/2017/05/10/trial-by-error-continued-cmrc-to-virology-blog-fk-off/ Trial By Error, Continued: CMRC to Virology Blog: “F**k Off!”]
*May 8 2017 [http://www.virology.ws/2017/05/08/trial-by-error-continued-an-open-letter-to-the-board-of-the-cfsme-research-collaborative/ Trial By Error, Continued: An Open Letter to the Board of the CFS/ME Research Collaborative]
*May 3 2017 [http://www.virology.ws/2017/05/03/trial-by-error-continued-my-libelous-blogging-on-virology-blog/ Trial By Error, Continued: My Libelous Blogging on Virology Blog]
*Mar 23 2017 [http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/ An open letter to Psychological Medicine, again!]
*Mar 18 2017 The New York Times, [https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?smid=tw-share&_r=0 Getting It Wrong on Chronic Fatigue Syndrome] (with [[Julie Rehmeyer]]) and Letters of response' [https://mobile.nytimes.com/2017/03/27/opinion/understanding-and-treating-chronic-fatigue.html?em_pos=small&emc=edit_ty_20170327&nl=opinion-today&nl_art=14&nlid=77538787&ref=headline&te=1&referer= Letters - The New York Times]
*Mar 13 2017 [http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/ An open letter to Psychological Medicine about “recovery” and the PACE trial]
*Nov 28 2016 [http://www.virology.ws/2016/11/28/trial-by-error-continued-a-follow-up-post-on-fitnet-nhs/ Trial By Error, Continued: A Follow-Up Post on FITNET-NHS]
*Nov 21 2016 [http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/ Trial By Error, Continued: The New FITNET Trial for Kids]
*Oct 27 2016 [http://undark.org/article/chronic-fatigue-graded-exercise-pace/ ''Worse Than the Disease'']
*Sep 22 2016 [http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ Trial By Error, Continued: The Real Data]
*Sep 6 2016 [http://www.virology.ws/2016/09/06/open-letter-to-queen-mary-university-london-about-pace/ Open letter to Queen Mary University of London about PACE]
*Sep 1 2016 [http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ Trial By Error, Continued: My Questions for Lancet Editor Richard Horton]
*Aug 29 2016 [http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ Once Again, Lancet Stumbles on PACE]
*May 23 2016 [http://www.virology.ws/2016/05/23/an-open-letter-to-plos-one/. An open letter to PLoS One.]
*Feb 10 2016 [http://www.virology.ws/2016/02/10/open-letter-lancet-again/ An open letter to The Lancet, again]
*Feb 4 2016 [http://healthaffairs.org/blog/2016/02/04/reexamining-chronic-fatigue-syndrome-research-and-treatment-policy/ Reexamining Chronic Fatigue Syndrome Research And Treatment Policy]
*Feb 1 2016 [http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/ Trial By Error, Continued: A Few Words About “Harassment”]
*Jan 19 2016 [http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/ Trial By Error, Continued: More Nonsense from The Lancet Psychiatry]
*Jan 19 2016 [http://www.virology.ws/2016/01/19/at-least-were-not-vexatious/ At least we’re not vexatious]
*Jan 7 2016 [http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/ Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?] (with [[Julie Rehmeyer]])
*Jan 4 2016 [http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/ Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues]
*Dec 22 2015 [http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/ Revisiting the PLoS One economics analysis of PACE]
*Dec 17 2015 [http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/ A request for data from the PACE trial]
*Nov 18 2015 [http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped "Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough"]
*Nov 17 2015 [http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ "Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?"]
*Nov 13 2015 [http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/ "An open letter to Dr. Richard Horton and The Lancet"]
*Nov 9 2015 [http://www.virology.ws/2015/11/09/trial-by-error-continued-why-has-the-pace-studys-sister-trial-been-disappeared-and-forgotten/ "Trial By Error, Continued: Why has the PACE Study’s Sister Trial been Disappeared and Forgotten?"]
*Nov 4 2015 [http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/ "Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?"]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/ "David Tuller responds to the PACE Investigators"]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/ PACE trial investigators respond to David Tuller]
*Oct 23 2015 [http://www.virology.ws/2015/10/23/trial-by-error-iii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (final instalment)"]
*Oct 22 2015 [http://www.virology.ws/2015/10/22/trial-by-error-ii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second instalment)"]
*Oct 21 2015 [http://www.virology.ws/2015/10/21/trial-by-error-i/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study"]
*Feb 10 2015 [http://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/ "Chronic Fatigue Syndrome Gets a New Name"]
*Nov 24 2014 [[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)]]
*Jan 27 2014 [http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome#.tnegBjJ82 How "Chronic Fatigue Syndrome" Obscures A Serious Illness]
*Sep 18 2012 [http://well.blogs.nytimes.com/2012/09/18/chronic-fatigue-syndrome-back-to-square-1/ "Chronic Fatigue Syndrome Back to Square 1"]
*Feb 6 2012 [http://www.nytimes.com/2012/02/07/health/fallout-from-fatigue-syndrome-retraction-is-far-and-wide.html?pagewanted=1&_r=1 "Fallout From Fatigue Syndrome Retraction Is Wide"]
*Dec 26 2011 [http://www.nytimes.com/2011/12/27/health/research/scholars-retract-another-study-linking-xmrv-to-chronic-fatigue-syndrome.html "Scholars Retract Another Study Linking Virus to Fatigue Syndrome"]
*Dec 22 2011 [http://www.nytimes.com/2011/12/23/health/research/science-journal-retracts-chronic-fatigue-syndrome-paper.html?ref=research "Fatigue Syndrome Study Is Retracted by Journal"]
*Nov 23 2011 [http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/ "Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale"]
*Sep 22 2011 [http://www.nytimes.com/2011/09/23/health/research/23fatigue.html "Viral Theory Is Set Back in Chronic Fatigue Syndrome Study"]
*Jun 1 2011 [http://www.nytimes.com/2011/06/01/health/research/01fatigue.html?_r=1 "2 Studies Examine Syndrome of Fatigue"]
*Mar 4 2011 [http://www.nytimes.com/2011/03/08/health/research/08fatigue.html "Defining an Illness Is Fodder for Debate"]
*Feb 17 2011 [http://www.nytimes.com/2011/02/18/health/research/18fatigue.html "Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds"]
*Jan 3 2011 [http://www.nytimes.com/2011/01/04/health/04fatigue.html "Exhausted by Illness, and Doubts"]
*Aug 24 2010 [http://query.nytimes.com/gst/fullpage.html?res=9C00E4DB1439F937A1575BC0A9669D8B63 "Study Links Chronic Fatigue to Virus Class"]
*May 30 2008 [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-expert.html "Learning Firsthand About Chronic Fatigue Syndrome"]
*May 30 2008 [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-questions.html "What to Ask About Chronic Fatigue Syndrome"]
*Jul 17 2007 [http://www.nytimes.com/2007/07/17/science/17fatigue.html "Chronic Fatigue No Longer Seen as 'Yuppie Flu'"]

==Learn more==
*[http://www.berkeleywellness.com/author/davidtullerdrph Berkeley Wellness - David Tuller]

==References==
<References/>

[[Category:Psychological paradigm critics]][[Category:PACE trial critics]]

David Tuller

2017-06-08T15:14:33Z

DxCFS:Hyperlink

[[File:David tuller.jpg|right]]
'''David Tuller''', DrPh, is academic coordinator of [https://en.wikipedia.org/wiki/University_of_California%2C_Berkeley University of California, Berkeley]'s joint masters program in public health and journalism. He was a reporter and editor for ten years at the ''San Francisco Chronicle'', served as health editor at ''Salon.com'' and frequently writes about health for ''The New York Times''.

He's an experienced public health activist with a background as an ACT UP/NY activist which included an arrest at the Wall Street demonstration in 1987.<ref>http://mpetrelis.blogspot.com/2013/05/jay-blotchers-act-up-friends-reunion-in.html</ref>

David Tuller covered the [[PACE trial]] results for the New York Times as health editor in February 2011. <ref> http://www.nytimes.com/2011/02/18/health/research/18fatigue.html </ref> However he became concerned about the trial and wrote a further article regarding case definitions which resulted in an immediate response from the PACE trial authors which resulted him in investigating the trial and its authors further after contact with others in the patient community. <ref> http://www.nytimes.com/2011/03/08/health/research/08fatigue.html </ref> <ref> http://www.nytimes.com/2011/03/15/health/15letters-STUDYINGAFAT_LETTERS.html </ref>

Tuller is sympathetic toward the cause of the [[myalgic encephalomyelitis]]/[[chronic fatigue syndrome]] ([[ME/CFS]]) patient community. In an article in 2015 he wrote:

<blockquote>"In the course of my reporting, I’d realized that the disease was both devastating and widely misunderstood. People were really, really sick—some were homebound for months and years at a stretch. Yet their condition had been saddled with one of the most condescending names ever given a major illness."<ref>[http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped "Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough"]</ref></blockquote>

==Talks & interviews==
*May 31 2017, [[Virology blog]] Podcast: [http://www.microbe.tv/twiv/twivs-tuller3/ TWiV Special: Trial by Error, Continued] David Tuller returns to discuss the continuing saga of the UK’s PACE trial for chronic fatigue syndrome, including the accusation that he is engaging in libelous blogging.

*Feb 20 2017, [[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]]

*Oct 29 2016, Undark Podcast [http://undark.org/2016/10/31/undark-podcast-chronic-fatigue/ #8: Worse Than the Disease] Dr. Tuller [[Graded Exercise Therapy]] (GET) commonly prescribed for chronic fatigue syndrome — one for which supporting research is now unraveling.

* Aug 21 2016, Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-403/ TWiV 403: It’s not easy being vaccine] Discussion with David Tuller regarding PACE trial at 00.17.38- 00.23.57.

*Jul 10 2016, Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error], Dr. Tuller speaks at length and in detail about the [[PACE trial]] (calling the PACE Trial preposterous and a pack of nonsense, and a piece of crap) and [[FINE trial]], ''[[The Lancet]]'', ''[[British Medical Journal]]'' (BMJ) and ''[[PLOS ONE]]'', patients being ill yet deconstructing the PACE Trial, how [[ME/CFS]] is a disease being treated inappropriately with [[Exercise]], [[GET]] and [[CBT]], touches on the [[Institute of Medicine report]] and [[SEID]], [[Valerie Eliot Smith]] and [[Karina Hansen]], and more.<ref>[http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error]</ref>

*Feb 28 2016, [https://www.youtube.com/watch?v=1fS6Gzc52VI Speech on PACE Trial with Q&As] in Amsterdam.

*Feb 27 2016, [https://www.youtube.com/watch?v=UN1bYhkDHA4&feature=youtu.be Discussed the flaws of the Pace trial] with [[Frank Twisk]] while in Amsterdam at The [[Forgotten Plague]] Conference.

*Feb 6 2011, Virology blog podcast: [http://www.twiv.tv/2011/02/06/twiv-119-science-and-journalism-with-david-tuller/ TWiV 119: Science and journalism with David Tuller]. Dr. Tuller appeared as a guest on [[Vincent Racaniello]]'s podcast.

==Awards==
*2016, [[IACFS/ME]] Special Service Award - for outstanding personal effort and contribution to the CFS/ME community
*2016, [[Tymes Trust]] Award for Scientific Journalism<ref>https://www.facebook.com/tymestrust/photos/pb.1482582732026864.-2207520000.1477637753./1823344051284062/?type=3&theater</ref>

==Online presence==
*[http://www.twitter.com/davidtuller1 Twitter]
*[https://www.crowdrise.com/virology-blogs-trial-by-error-more-reporting-on-pace-mecfs-and-related-issues1/fundraiser/davidtuller?utm_source=dash-gtwo-cr&utm_platform=twt&utm_device=desktop Crowdrise] (2017) Virology Blog's Trial By Error: Reporting on PACE, ME/CFS and Related Issues

==Writings about ME/CFS==
*May 22 2017 [http://www.virology.ws/2017/05/22/trial-by-error-continued-me-research-uk-drops-out-of-cmrc/ Trial By Error, Continued: ME Research UK Drops Out of CMRC]
*May 15 2017 [http://www.virology.ws/2017/05/15/trial-by-error-continued-the-cmrc-affirms-full-support-for-libelous-esther/ Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Esther]
*May 10 2017 [http://www.virology.ws/2017/05/10/trial-by-error-continued-cmrc-to-virology-blog-fk-off/ Trial By Error, Continued: CMRC to Virology Blog: “F**k Off!”]
*May 8 2017 [http://www.virology.ws/2017/05/08/trial-by-error-continued-an-open-letter-to-the-board-of-the-cfsme-research-collaborative/ Trial By Error, Continued: An Open Letter to the Board of the CFS/ME Research Collaborative]
*May 3 2017 [http://www.virology.ws/2017/05/03/trial-by-error-continued-my-libelous-blogging-on-virology-blog/ Trial By Error, Continued: My Libelous Blogging on Virology Blog]
*Mar 23 2017 [http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/ An open letter to Psychological Medicine, again!]
*Mar 18 2017 The New York Times, [https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?smid=tw-share&_r=0 Getting It Wrong on Chronic Fatigue Syndrome] (with [[Julie Rehmeyer]]) and Letters of response' [https://mobile.nytimes.com/2017/03/27/opinion/understanding-and-treating-chronic-fatigue.html?em_pos=small&emc=edit_ty_20170327&nl=opinion-today&nl_art=14&nlid=77538787&ref=headline&te=1&referer= Letters - The New York Times]
*Mar 13 2017 [http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/ An open letter to Psychological Medicine about “recovery” and the PACE trial]
*Nov 28 2016 [http://www.virology.ws/2016/11/28/trial-by-error-continued-a-follow-up-post-on-fitnet-nhs/ Trial By Error, Continued: A Follow-Up Post on FITNET-NHS]
*Nov 21 2016 [http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/ Trial By Error, Continued: The New FITNET Trial for Kids]
*Oct 27 2016 [http://undark.org/article/chronic-fatigue-graded-exercise-pace/ ''Worse Than the Disease'']
*Sep 22 2016 [http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ Trial By Error, Continued: The Real Data]
*Sep 6 2016 [http://www.virology.ws/2016/09/06/open-letter-to-queen-mary-university-london-about-pace/ Open letter to Queen Mary University of London about PACE]
*Sep 1 2016 [http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ Trial By Error, Continued: My Questions for Lancet Editor Richard Horton]
*Aug 29 2016 [http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ Once Again, Lancet Stumbles on PACE]
*May 23 2016 [http://www.virology.ws/2016/05/23/an-open-letter-to-plos-one/. An open letter to PLoS One.]
*Feb 10 2016 [http://www.virology.ws/2016/02/10/open-letter-lancet-again/ An open letter to The Lancet, again]
*Feb 4 2016 [http://healthaffairs.org/blog/2016/02/04/reexamining-chronic-fatigue-syndrome-research-and-treatment-policy/ Reexamining Chronic Fatigue Syndrome Research And Treatment Policy]
*Feb 1 2016 [http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/ Trial By Error, Continued: A Few Words About “Harassment”]
*Jan 19 2016 [http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/ Trial By Error, Continued: More Nonsense from The Lancet Psychiatry]
*Jan 19 2016 [http://www.virology.ws/2016/01/19/at-least-were-not-vexatious/ At least we’re not vexatious]
*Jan 7 2016 [http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/ Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?] (with [[Julie Rehmeyer]])
*Jan 4 2016 [http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/ Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues]
*Dec 22 2015 [http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/ Revisiting the PLoS One economics analysis of PACE]
*Dec 17 2015 [http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/ A request for data from the PACE trial]
*Nov 18 2015 [http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped "Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough"]
*Nov 17 2015 [http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ "Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?"]
*Nov 13 2015 [http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/ "An open letter to Dr. Richard Horton and The Lancet"]
*Nov 9 2015 [http://www.virology.ws/2015/11/09/trial-by-error-continued-why-has-the-pace-studys-sister-trial-been-disappeared-and-forgotten/ "Trial By Error, Continued: Why has the PACE Study’s Sister Trial been Disappeared and Forgotten?"]
*Nov 4 2015 [http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/ "Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?"]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/ "David Tuller responds to the PACE Investigators"]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/ PACE trial investigators respond to David Tuller]
*Oct 23 2015 [http://www.virology.ws/2015/10/23/trial-by-error-iii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (final instalment)"]
*Oct 22 2015 [http://www.virology.ws/2015/10/22/trial-by-error-ii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second instalment)"]
*Oct 21 2015 [http://www.virology.ws/2015/10/21/trial-by-error-i/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study"]
*Feb 10 2015 [http://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/ "Chronic Fatigue Syndrome Gets a New Name"]
*Nov 24 2014 [[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)]]
*Jan 27 2014 [http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome#.tnegBjJ82 How "Chronic Fatigue Syndrome" Obscures A Serious Illness]
*Sep 18 2012 [http://well.blogs.nytimes.com/2012/09/18/chronic-fatigue-syndrome-back-to-square-1/ "Chronic Fatigue Syndrome Back to Square 1"]
*Feb 6 2012 [http://www.nytimes.com/2012/02/07/health/fallout-from-fatigue-syndrome-retraction-is-far-and-wide.html?pagewanted=1&_r=1 "Fallout From Fatigue Syndrome Retraction Is Wide"]
*Dec 26 2011 [http://www.nytimes.com/2011/12/27/health/research/scholars-retract-another-study-linking-xmrv-to-chronic-fatigue-syndrome.html "Scholars Retract Another Study Linking Virus to Fatigue Syndrome"]
*Dec 22 2011 [http://www.nytimes.com/2011/12/23/health/research/science-journal-retracts-chronic-fatigue-syndrome-paper.html?ref=research "Fatigue Syndrome Study Is Retracted by Journal"]
*Nov 23 2011 [http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/ "Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale"]
*Sep 22 2011 [http://www.nytimes.com/2011/09/23/health/research/23fatigue.html "Viral Theory Is Set Back in Chronic Fatigue Syndrome Study"]
*Jun 1 2011 [http://www.nytimes.com/2011/06/01/health/research/01fatigue.html?_r=1 "2 Studies Examine Syndrome of Fatigue"]
*Mar 4 2011 [http://www.nytimes.com/2011/03/08/health/research/08fatigue.html "Defining an Illness Is Fodder for Debate"]
*Feb 17 2011 [http://www.nytimes.com/2011/02/18/health/research/18fatigue.html "Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds"]
*Jan 3 2011 [http://www.nytimes.com/2011/01/04/health/04fatigue.html "Exhausted by Illness, and Doubts"]
*Aug 24 2010 [http://query.nytimes.com/gst/fullpage.html?res=9C00E4DB1439F937A1575BC0A9669D8B63 "Study Links Chronic Fatigue to Virus Class"]
*May 30 2008 [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-expert.html "Learning Firsthand About Chronic Fatigue Syndrome"]
*May 30 2008 [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-questions.html "What to Ask About Chronic Fatigue Syndrome"]
*Jul 17 2007 [http://www.nytimes.com/2007/07/17/science/17fatigue.html "Chronic Fatigue No Longer Seen as 'Yuppie Flu'"]

==Learn more==
*[http://www.berkeleywellness.com/author/davidtullerdrph Berkeley Wellness - David Tuller]

==References==
<References/>

[[Category:Psychological paradigm critics]][[Category:PACE trial critics]]

David Tuller

2017-06-08T14:52:23Z

DxCFS:/* Online presence */ Crowdrise

[[File:David tuller.jpg|right]]
'''David Tuller''', DrPh, is academic coordinator of University of California Berkeley's joint masters program in public health and journalism. He was a reporter and editor for ten years at the ''San Francisco Chronicle'', served as health editor at ''Salon.com'' and frequently writes about health for ''The New York Times''.

He's an experienced public health activist with a background as an ACT UP/NY activist which included an arrest at the Wall Street demonstration in 1987.<ref>http://mpetrelis.blogspot.com/2013/05/jay-blotchers-act-up-friends-reunion-in.html</ref>

David Tuller covered the [[PACE trial]] results for the New York Times as health editor in February 2011. <ref> http://www.nytimes.com/2011/02/18/health/research/18fatigue.html </ref> However he became concerned about the trial and wrote a further article regarding case definitions which resulted in an immediate response from the PACE trial authors which resulted him in investigating the trial and its authors further after contact with others in the patient community. <ref> http://www.nytimes.com/2011/03/08/health/research/08fatigue.html </ref> <ref> http://www.nytimes.com/2011/03/15/health/15letters-STUDYINGAFAT_LETTERS.html </ref>

Tuller is sympathetic toward the cause of the [[myalgic encephalomyelitis]]/[[chronic fatigue syndrome]] ([[ME/CFS]]) patient community. In an article in 2015 he wrote:

<blockquote>"In the course of my reporting, I’d realized that the disease was both devastating and widely misunderstood. People were really, really sick—some were homebound for months and years at a stretch. Yet their condition had been saddled with one of the most condescending names ever given a major illness."<ref>[http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped "Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough"]</ref></blockquote>

==Talks & interviews==
*May 31 2017, [[Virology blog]] Podcast: [http://www.microbe.tv/twiv/twivs-tuller3/ TWiV Special: Trial by Error, Continued] David Tuller returns to discuss the continuing saga of the UK’s PACE trial for chronic fatigue syndrome, including the accusation that he is engaging in libelous blogging.

*Feb 20 2017, [[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]]

*Oct 29 2016, Undark Podcast [http://undark.org/2016/10/31/undark-podcast-chronic-fatigue/ #8: Worse Than the Disease] Dr. Tuller [[Graded Exercise Therapy]] (GET) commonly prescribed for chronic fatigue syndrome — one for which supporting research is now unraveling.

* Aug 21 2016, Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-403/ TWiV 403: It’s not easy being vaccine] Discussion with David Tuller regarding PACE trial at 00.17.38- 00.23.57.

*Jul 10 2016, Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error], Dr. Tuller speaks at length and in detail about the [[PACE trial]] (calling the PACE Trial preposterous and a pack of nonsense, and a piece of crap) and [[FINE trial]], ''[[The Lancet]]'', ''[[British Medical Journal]]'' (BMJ) and ''[[PLOS ONE]]'', patients being ill yet deconstructing the PACE Trial, how [[ME/CFS]] is a disease being treated inappropriately with [[Exercise]], [[GET]] and [[CBT]], touches on the [[Institute of Medicine report]] and [[SEID]], [[Valerie Eliot Smith]] and [[Karina Hansen]], and more.<ref>[http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error]</ref>

*Feb 28 2016, [https://www.youtube.com/watch?v=1fS6Gzc52VI Speech on PACE Trial with Q&As] in Amsterdam.

*Feb 27 2016, [https://www.youtube.com/watch?v=UN1bYhkDHA4&feature=youtu.be Discussed the flaws of the Pace trial] with [[Frank Twisk]] while in Amsterdam at The [[Forgotten Plague]] Conference.

*Feb 6 2011, Virology blog podcast: [http://www.twiv.tv/2011/02/06/twiv-119-science-and-journalism-with-david-tuller/ TWiV 119: Science and journalism with David Tuller]. Dr. Tuller appeared as a guest on [[Vincent Racaniello]]'s podcast.

==Awards==
*2016, [[IACFS/ME]] Special Service Award - for outstanding personal effort and contribution to the CFS/ME community
*2016, [[Tymes Trust]] Award for Scientific Journalism<ref>https://www.facebook.com/tymestrust/photos/pb.1482582732026864.-2207520000.1477637753./1823344051284062/?type=3&theater</ref>

==Online presence==
*[http://www.twitter.com/davidtuller1 Twitter]
*[https://www.crowdrise.com/virology-blogs-trial-by-error-more-reporting-on-pace-mecfs-and-related-issues1/fundraiser/davidtuller?utm_source=dash-gtwo-cr&utm_platform=twt&utm_device=desktop Crowdrise] (2017) Virology Blog's Trial By Error: Reporting on PACE, ME/CFS and Related Issues

==Writings about ME/CFS==
*May 22 2017 [http://www.virology.ws/2017/05/22/trial-by-error-continued-me-research-uk-drops-out-of-cmrc/ Trial By Error, Continued: ME Research UK Drops Out of CMRC]
*May 15 2017 [http://www.virology.ws/2017/05/15/trial-by-error-continued-the-cmrc-affirms-full-support-for-libelous-esther/ Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Esther]
*May 10 2017 [http://www.virology.ws/2017/05/10/trial-by-error-continued-cmrc-to-virology-blog-fk-off/ Trial By Error, Continued: CMRC to Virology Blog: “F**k Off!”]
*May 8 2017 [http://www.virology.ws/2017/05/08/trial-by-error-continued-an-open-letter-to-the-board-of-the-cfsme-research-collaborative/ Trial By Error, Continued: An Open Letter to the Board of the CFS/ME Research Collaborative]
*May 3 2017 [http://www.virology.ws/2017/05/03/trial-by-error-continued-my-libelous-blogging-on-virology-blog/ Trial By Error, Continued: My Libelous Blogging on Virology Blog]
*Mar 23 2017 [http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/ An open letter to Psychological Medicine, again!]
*Mar 18 2017 The New York Times, [https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?smid=tw-share&_r=0 Getting It Wrong on Chronic Fatigue Syndrome] (with [[Julie Rehmeyer]]) and Letters of response' [https://mobile.nytimes.com/2017/03/27/opinion/understanding-and-treating-chronic-fatigue.html?em_pos=small&emc=edit_ty_20170327&nl=opinion-today&nl_art=14&nlid=77538787&ref=headline&te=1&referer= Letters - The New York Times]
*Mar 13 2017 [http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/ An open letter to Psychological Medicine about “recovery” and the PACE trial]
*Nov 28 2016 [http://www.virology.ws/2016/11/28/trial-by-error-continued-a-follow-up-post-on-fitnet-nhs/ Trial By Error, Continued: A Follow-Up Post on FITNET-NHS]
*Nov 21 2016 [http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/ Trial By Error, Continued: The New FITNET Trial for Kids]
*Oct 27 2016 [http://undark.org/article/chronic-fatigue-graded-exercise-pace/ ''Worse Than the Disease'']
*Sep 22 2016 [http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ Trial By Error, Continued: The Real Data]
*Sep 6 2016 [http://www.virology.ws/2016/09/06/open-letter-to-queen-mary-university-london-about-pace/ Open letter to Queen Mary University of London about PACE]
*Sep 1 2016 [http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ Trial By Error, Continued: My Questions for Lancet Editor Richard Horton]
*Aug 29 2016 [http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ Once Again, Lancet Stumbles on PACE]
*May 23 2016 [http://www.virology.ws/2016/05/23/an-open-letter-to-plos-one/. An open letter to PLoS One.]
*Feb 10 2016 [http://www.virology.ws/2016/02/10/open-letter-lancet-again/ An open letter to The Lancet, again]
*Feb 4 2016 [http://healthaffairs.org/blog/2016/02/04/reexamining-chronic-fatigue-syndrome-research-and-treatment-policy/ Reexamining Chronic Fatigue Syndrome Research And Treatment Policy]
*Feb 1 2016 [http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/ Trial By Error, Continued: A Few Words About “Harassment”]
*Jan 19 2016 [http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/ Trial By Error, Continued: More Nonsense from The Lancet Psychiatry]
*Jan 19 2016 [http://www.virology.ws/2016/01/19/at-least-were-not-vexatious/ At least we’re not vexatious]
*Jan 7 2016 [http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/ Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?] (with [[Julie Rehmeyer]])
*Jan 4 2016 [http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/ Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues]
*Dec 22 2015 [http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/ Revisiting the PLoS One economics analysis of PACE]
*Dec 17 2015 [http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/ A request for data from the PACE trial]
*Nov 18 2015 [http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped "Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough"]
*Nov 17 2015 [http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ "Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?"]
*Nov 13 2015 [http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/ "An open letter to Dr. Richard Horton and The Lancet"]
*Nov 9 2015 [http://www.virology.ws/2015/11/09/trial-by-error-continued-why-has-the-pace-studys-sister-trial-been-disappeared-and-forgotten/ "Trial By Error, Continued: Why has the PACE Study’s Sister Trial been Disappeared and Forgotten?"]
*Nov 4 2015 [http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/ "Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?"]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/ "David Tuller responds to the PACE Investigators"]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/ PACE trial investigators respond to David Tuller]
*Oct 23 2015 [http://www.virology.ws/2015/10/23/trial-by-error-iii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (final instalment)"]
*Oct 22 2015 [http://www.virology.ws/2015/10/22/trial-by-error-ii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second instalment)"]
*Oct 21 2015 [http://www.virology.ws/2015/10/21/trial-by-error-i/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study"]
*Feb 10 2015 [http://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/ "Chronic Fatigue Syndrome Gets a New Name"]
*Nov 24 2014 [[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)]]
*Jan 27 2014 [http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome#.tnegBjJ82 How "Chronic Fatigue Syndrome" Obscures A Serious Illness]
*Sep 18 2012 [http://well.blogs.nytimes.com/2012/09/18/chronic-fatigue-syndrome-back-to-square-1/ "Chronic Fatigue Syndrome Back to Square 1"]
*Feb 6 2012 [http://www.nytimes.com/2012/02/07/health/fallout-from-fatigue-syndrome-retraction-is-far-and-wide.html?pagewanted=1&_r=1 "Fallout From Fatigue Syndrome Retraction Is Wide"]
*Dec 26 2011 [http://www.nytimes.com/2011/12/27/health/research/scholars-retract-another-study-linking-xmrv-to-chronic-fatigue-syndrome.html "Scholars Retract Another Study Linking Virus to Fatigue Syndrome"]
*Dec 22 2011 [http://www.nytimes.com/2011/12/23/health/research/science-journal-retracts-chronic-fatigue-syndrome-paper.html?ref=research "Fatigue Syndrome Study Is Retracted by Journal"]
*Nov 23 2011 [http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/ "Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale"]
*Sep 22 2011 [http://www.nytimes.com/2011/09/23/health/research/23fatigue.html "Viral Theory Is Set Back in Chronic Fatigue Syndrome Study"]
*Jun 1 2011 [http://www.nytimes.com/2011/06/01/health/research/01fatigue.html?_r=1 "2 Studies Examine Syndrome of Fatigue"]
*Mar 4 2011 [http://www.nytimes.com/2011/03/08/health/research/08fatigue.html "Defining an Illness Is Fodder for Debate"]
*Feb 17 2011 [http://www.nytimes.com/2011/02/18/health/research/18fatigue.html "Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds"]
*Jan 3 2011 [http://www.nytimes.com/2011/01/04/health/04fatigue.html "Exhausted by Illness, and Doubts"]
*Aug 24 2010 [http://query.nytimes.com/gst/fullpage.html?res=9C00E4DB1439F937A1575BC0A9669D8B63 "Study Links Chronic Fatigue to Virus Class"]
*May 30 2008 [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-expert.html "Learning Firsthand About Chronic Fatigue Syndrome"]
*May 30 2008 [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-questions.html "What to Ask About Chronic Fatigue Syndrome"]
*Jul 17 2007 [http://www.nytimes.com/2007/07/17/science/17fatigue.html "Chronic Fatigue No Longer Seen as 'Yuppie Flu'"]

==Learn more==
*[http://www.berkeleywellness.com/author/davidtullerdrph Berkeley Wellness - David Tuller]

==References==
<References/>

[[Category:Psychological paradigm critics]][[Category:PACE trial critics]]

David Tuller

2017-06-08T14:38:23Z

DxCFS:x

[[File:David tuller.jpg|right]]
'''David Tuller''', DrPh, is academic coordinator of University of California Berkeley's joint masters program in public health and journalism. He was a reporter and editor for ten years at the ''San Francisco Chronicle'', served as health editor at ''Salon.com'' and frequently writes about health for ''The New York Times''.

He's an experienced public health activist with a background as an ACT UP/NY activist which included an arrest at the Wall Street demonstration in 1987.<ref>http://mpetrelis.blogspot.com/2013/05/jay-blotchers-act-up-friends-reunion-in.html</ref>

David Tuller covered the [[PACE trial]] results for the New York Times as health editor in February 2011. <ref> http://www.nytimes.com/2011/02/18/health/research/18fatigue.html </ref> However he became concerned about the trial and wrote a further article regarding case definitions which resulted in an immediate response from the PACE trial authors which resulted him in investigating the trial and its authors further after contact with others in the patient community. <ref> http://www.nytimes.com/2011/03/08/health/research/08fatigue.html </ref> <ref> http://www.nytimes.com/2011/03/15/health/15letters-STUDYINGAFAT_LETTERS.html </ref>

Tuller is sympathetic toward the cause of the [[myalgic encephalomyelitis]]/[[chronic fatigue syndrome]] ([[ME/CFS]]) patient community. In an article in 2015 he wrote:

<blockquote>"In the course of my reporting, I’d realized that the disease was both devastating and widely misunderstood. People were really, really sick—some were homebound for months and years at a stretch. Yet their condition had been saddled with one of the most condescending names ever given a major illness."<ref>[http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped "Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough"]</ref></blockquote>

==Talks & interviews==
*May 31 2017, [[Virology blog]] Podcast: [http://www.microbe.tv/twiv/twivs-tuller3/ TWiV Special: Trial by Error, Continued] David Tuller returns to discuss the continuing saga of the UK’s PACE trial for chronic fatigue syndrome, including the accusation that he is engaging in libelous blogging.

*Feb 20 2017, [[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]]

*Oct 29 2016, Undark Podcast [http://undark.org/2016/10/31/undark-podcast-chronic-fatigue/ #8: Worse Than the Disease] Dr. Tuller [[Graded Exercise Therapy]] (GET) commonly prescribed for chronic fatigue syndrome — one for which supporting research is now unraveling.

* Aug 21 2016, Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-403/ TWiV 403: It’s not easy being vaccine] Discussion with David Tuller regarding PACE trial at 00.17.38- 00.23.57.

*Jul 10 2016, Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error], Dr. Tuller speaks at length and in detail about the [[PACE trial]] (calling the PACE Trial preposterous and a pack of nonsense, and a piece of crap) and [[FINE trial]], ''[[The Lancet]]'', ''[[British Medical Journal]]'' (BMJ) and ''[[PLOS ONE]]'', patients being ill yet deconstructing the PACE Trial, how [[ME/CFS]] is a disease being treated inappropriately with [[Exercise]], [[GET]] and [[CBT]], touches on the [[Institute of Medicine report]] and [[SEID]], [[Valerie Eliot Smith]] and [[Karina Hansen]], and more.<ref>[http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error]</ref>

*Feb 28 2016, [https://www.youtube.com/watch?v=1fS6Gzc52VI Speech on PACE Trial with Q&As] in Amsterdam.

*Feb 27 2016, [https://www.youtube.com/watch?v=UN1bYhkDHA4&feature=youtu.be Discussed the flaws of the Pace trial] with [[Frank Twisk]] while in Amsterdam at The [[Forgotten Plague]] Conference.

*Feb 6 2011, Virology blog podcast: [http://www.twiv.tv/2011/02/06/twiv-119-science-and-journalism-with-david-tuller/ TWiV 119: Science and journalism with David Tuller]. Dr. Tuller appeared as a guest on [[Vincent Racaniello]]'s podcast.

==Awards==
*2016, [[IACFS/ME]] Special Service Award - for outstanding personal effort and contribution to the CFS/ME community
*2016, [[Tymes Trust]] Award for Scientific Journalism<ref>https://www.facebook.com/tymestrust/photos/pb.1482582732026864.-2207520000.1477637753./1823344051284062/?type=3&theater</ref>

==Online presence==
*[http://www.twitter.com/davidtuller1 Twitter]

==Writings about ME/CFS==
*May 22 2017 [http://www.virology.ws/2017/05/22/trial-by-error-continued-me-research-uk-drops-out-of-cmrc/ Trial By Error, Continued: ME Research UK Drops Out of CMRC]
*May 15 2017 [http://www.virology.ws/2017/05/15/trial-by-error-continued-the-cmrc-affirms-full-support-for-libelous-esther/ Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Esther]
*May 10 2017 [http://www.virology.ws/2017/05/10/trial-by-error-continued-cmrc-to-virology-blog-fk-off/ Trial By Error, Continued: CMRC to Virology Blog: “F**k Off!”]
*May 8 2017 [http://www.virology.ws/2017/05/08/trial-by-error-continued-an-open-letter-to-the-board-of-the-cfsme-research-collaborative/ Trial By Error, Continued: An Open Letter to the Board of the CFS/ME Research Collaborative]
*May 3 2017 [http://www.virology.ws/2017/05/03/trial-by-error-continued-my-libelous-blogging-on-virology-blog/ Trial By Error, Continued: My Libelous Blogging on Virology Blog]
*Mar 23 2017 [http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/ An open letter to Psychological Medicine, again!]
*Mar 18 2017 The New York Times, [https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?smid=tw-share&_r=0 Getting It Wrong on Chronic Fatigue Syndrome] (with [[Julie Rehmeyer]]) and Letters of response' [https://mobile.nytimes.com/2017/03/27/opinion/understanding-and-treating-chronic-fatigue.html?em_pos=small&emc=edit_ty_20170327&nl=opinion-today&nl_art=14&nlid=77538787&ref=headline&te=1&referer= Letters - The New York Times]
*Mar 13 2017 [http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/ An open letter to Psychological Medicine about “recovery” and the PACE trial]
*Nov 28 2016 [http://www.virology.ws/2016/11/28/trial-by-error-continued-a-follow-up-post-on-fitnet-nhs/ Trial By Error, Continued: A Follow-Up Post on FITNET-NHS]
*Nov 21 2016 [http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/ Trial By Error, Continued: The New FITNET Trial for Kids]
*Oct 27 2016 [http://undark.org/article/chronic-fatigue-graded-exercise-pace/ ''Worse Than the Disease'']
*Sep 22 2016 [http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ Trial By Error, Continued: The Real Data]
*Sep 6 2016 [http://www.virology.ws/2016/09/06/open-letter-to-queen-mary-university-london-about-pace/ Open letter to Queen Mary University of London about PACE]
*Sep 1 2016 [http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ Trial By Error, Continued: My Questions for Lancet Editor Richard Horton]
*Aug 29 2016 [http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ Once Again, Lancet Stumbles on PACE]
*May 23 2016 [http://www.virology.ws/2016/05/23/an-open-letter-to-plos-one/. An open letter to PLoS One.]
*Feb 10 2016 [http://www.virology.ws/2016/02/10/open-letter-lancet-again/ An open letter to The Lancet, again]
*Feb 4 2016 [http://healthaffairs.org/blog/2016/02/04/reexamining-chronic-fatigue-syndrome-research-and-treatment-policy/ Reexamining Chronic Fatigue Syndrome Research And Treatment Policy]
*Feb 1 2016 [http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/ Trial By Error, Continued: A Few Words About “Harassment”]
*Jan 19 2016 [http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/ Trial By Error, Continued: More Nonsense from The Lancet Psychiatry]
*Jan 19 2016 [http://www.virology.ws/2016/01/19/at-least-were-not-vexatious/ At least we’re not vexatious]
*Jan 7 2016 [http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/ Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?] (with [[Julie Rehmeyer]])
*Jan 4 2016 [http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/ Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues]
*Dec 22 2015 [http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/ Revisiting the PLoS One economics analysis of PACE]
*Dec 17 2015 [http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/ A request for data from the PACE trial]
*Nov 18 2015 [http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped "Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough"]
*Nov 17 2015 [http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ "Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?"]
*Nov 13 2015 [http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/ "An open letter to Dr. Richard Horton and The Lancet"]
*Nov 9 2015 [http://www.virology.ws/2015/11/09/trial-by-error-continued-why-has-the-pace-studys-sister-trial-been-disappeared-and-forgotten/ "Trial By Error, Continued: Why has the PACE Study’s Sister Trial been Disappeared and Forgotten?"]
*Nov 4 2015 [http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/ "Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?"]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/ "David Tuller responds to the PACE Investigators"]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/ PACE trial investigators respond to David Tuller]
*Oct 23 2015 [http://www.virology.ws/2015/10/23/trial-by-error-iii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (final instalment)"]
*Oct 22 2015 [http://www.virology.ws/2015/10/22/trial-by-error-ii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second instalment)"]
*Oct 21 2015 [http://www.virology.ws/2015/10/21/trial-by-error-i/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study"]
*Feb 10 2015 [http://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/ "Chronic Fatigue Syndrome Gets a New Name"]
*Nov 24 2014 [[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)]]
*Jan 27 2014 [http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome#.tnegBjJ82 How "Chronic Fatigue Syndrome" Obscures A Serious Illness]
*Sep 18 2012 [http://well.blogs.nytimes.com/2012/09/18/chronic-fatigue-syndrome-back-to-square-1/ "Chronic Fatigue Syndrome Back to Square 1"]
*Feb 6 2012 [http://www.nytimes.com/2012/02/07/health/fallout-from-fatigue-syndrome-retraction-is-far-and-wide.html?pagewanted=1&_r=1 "Fallout From Fatigue Syndrome Retraction Is Wide"]
*Dec 26 2011 [http://www.nytimes.com/2011/12/27/health/research/scholars-retract-another-study-linking-xmrv-to-chronic-fatigue-syndrome.html "Scholars Retract Another Study Linking Virus to Fatigue Syndrome"]
*Dec 22 2011 [http://www.nytimes.com/2011/12/23/health/research/science-journal-retracts-chronic-fatigue-syndrome-paper.html?ref=research "Fatigue Syndrome Study Is Retracted by Journal"]
*Nov 23 2011 [http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/ "Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale"]
*Sep 22 2011 [http://www.nytimes.com/2011/09/23/health/research/23fatigue.html "Viral Theory Is Set Back in Chronic Fatigue Syndrome Study"]
*Jun 1 2011 [http://www.nytimes.com/2011/06/01/health/research/01fatigue.html?_r=1 "2 Studies Examine Syndrome of Fatigue"]
*Mar 4 2011 [http://www.nytimes.com/2011/03/08/health/research/08fatigue.html "Defining an Illness Is Fodder for Debate"]
*Feb 17 2011 [http://www.nytimes.com/2011/02/18/health/research/18fatigue.html "Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds"]
*Jan 3 2011 [http://www.nytimes.com/2011/01/04/health/04fatigue.html "Exhausted by Illness, and Doubts"]
*Aug 24 2010 [http://query.nytimes.com/gst/fullpage.html?res=9C00E4DB1439F937A1575BC0A9669D8B63 "Study Links Chronic Fatigue to Virus Class"]
*May 30 2008 [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-expert.html "Learning Firsthand About Chronic Fatigue Syndrome"]
*May 30 2008 [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-questions.html "What to Ask About Chronic Fatigue Syndrome"]
*Jul 17 2007 [http://www.nytimes.com/2007/07/17/science/17fatigue.html "Chronic Fatigue No Longer Seen as 'Yuppie Flu'"]

==Learn more==
*[http://www.berkeleywellness.com/author/davidtullerdrph Berkeley Wellness - David Tuller]

==References==
<References/>

[[Category:Psychological paradigm critics]][[Category:PACE trial critics]]

David Tuller

2017-06-08T14:37:29Z

DxCFS:/* Talks & interviews */ TWiV Special: Trial by Error, Continued

[[File:David tuller.jpg|right]]
'''David Tuller''', DrPh, is academic coordinator of University of California Berkeley's joint masters program in public health and journalism. He was a reporter and editor for ten years at the ''San Francisco Chronicle'', served as health editor at ''Salon.com'' and frequently writes about health for ''The New York Times''.

He's an experienced public health activist with a background as an ACT UP/NY activist which included an arrest at the Wall Street demonstration in 1987.<ref>http://mpetrelis.blogspot.com/2013/05/jay-blotchers-act-up-friends-reunion-in.html</ref>

David Tuller covered the PACE trial results for the New York Times as health editor in February 2011. <ref> http://www.nytimes.com/2011/02/18/health/research/18fatigue.html </ref> However he became concerned about the trial and wrote a further article regarding case definitions which resulted in an immediate response from the PACE trial authors which resulted him in investigating the trial and its authors further after contact with others in the patient community. <ref> http://www.nytimes.com/2011/03/08/health/research/08fatigue.html </ref> <ref> http://www.nytimes.com/2011/03/15/health/15letters-STUDYINGAFAT_LETTERS.html </ref>

Tuller is sympathetic toward the cause of the [[myalgic encephalomyelitis]]/[[chronic fatigue syndrome]] ([[ME/CFS]]) patient community. In an article in 2015 he wrote:

<blockquote>"In the course of my reporting, I’d realized that the disease was both devastating and widely misunderstood. People were really, really sick—some were homebound for months and years at a stretch. Yet their condition had been saddled with one of the most condescending names ever given a major illness."<ref>[http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped "Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough"]</ref></blockquote>

==Talks & interviews==
*May 31 2017, [[Virology blog]] Podcast: [http://www.microbe.tv/twiv/twivs-tuller3/ TWiV Special: Trial by Error, Continued] David Tuller returns to discuss the continuing saga of the UK’s PACE trial for chronic fatigue syndrome, including the accusation that he is engaging in libelous blogging.

*Feb 20 2017, [[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]]

*Oct 29 2016, Undark Podcast [http://undark.org/2016/10/31/undark-podcast-chronic-fatigue/ #8: Worse Than the Disease] Dr. Tuller [[Graded Exercise Therapy]] (GET) commonly prescribed for chronic fatigue syndrome — one for which supporting research is now unraveling.

* Aug 21 2016, Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-403/ TWiV 403: It’s not easy being vaccine] Discussion with David Tuller regarding PACE trial at 00.17.38- 00.23.57.

*Jul 10 2016, Virology blog Podcast: [http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error], Dr. Tuller speaks at length and in detail about the [[PACE trial]] (calling the PACE Trial preposterous and a pack of nonsense, and a piece of crap) and [[FINE trial]], ''[[The Lancet]]'', ''[[British Medical Journal]]'' (BMJ) and ''[[PLOS ONE]]'', patients being ill yet deconstructing the PACE Trial, how [[ME/CFS]] is a disease being treated inappropriately with [[Exercise]], [[GET]] and [[CBT]], touches on the [[Institute of Medicine report]] and [[SEID]], [[Valerie Eliot Smith]] and [[Karina Hansen]], and more.<ref>[http://www.microbe.tv/twiv/twiv-397/ TWiV 397: Trial by Error]</ref>

*Feb 28 2016, [https://www.youtube.com/watch?v=1fS6Gzc52VI Speech on PACE Trial with Q&As] in Amsterdam.

*Feb 27 2016, [https://www.youtube.com/watch?v=UN1bYhkDHA4&feature=youtu.be Discussed the flaws of the Pace trial] with [[Frank Twisk]] while in Amsterdam at The [[Forgotten Plague]] Conference.

*Feb 6 2011, Virology blog podcast: [http://www.twiv.tv/2011/02/06/twiv-119-science-and-journalism-with-david-tuller/ TWiV 119: Science and journalism with David Tuller]. Dr. Tuller appeared as a guest on [[Vincent Racaniello]]'s podcast.

==Awards==
*2016, [[IACFS/ME]] Special Service Award - for outstanding personal effort and contribution to the CFS/ME community
*2016, [[Tymes Trust]] Award for Scientific Journalism<ref>https://www.facebook.com/tymestrust/photos/pb.1482582732026864.-2207520000.1477637753./1823344051284062/?type=3&theater</ref>

==Online presence==
*[http://www.twitter.com/davidtuller1 Twitter]

==Writings about ME/CFS==
*May 22 2017 [http://www.virology.ws/2017/05/22/trial-by-error-continued-me-research-uk-drops-out-of-cmrc/ Trial By Error, Continued: ME Research UK Drops Out of CMRC]
*May 15 2017 [http://www.virology.ws/2017/05/15/trial-by-error-continued-the-cmrc-affirms-full-support-for-libelous-esther/ Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Esther]
*May 10 2017 [http://www.virology.ws/2017/05/10/trial-by-error-continued-cmrc-to-virology-blog-fk-off/ Trial By Error, Continued: CMRC to Virology Blog: “F**k Off!”]
*May 8 2017 [http://www.virology.ws/2017/05/08/trial-by-error-continued-an-open-letter-to-the-board-of-the-cfsme-research-collaborative/ Trial By Error, Continued: An Open Letter to the Board of the CFS/ME Research Collaborative]
*May 3 2017 [http://www.virology.ws/2017/05/03/trial-by-error-continued-my-libelous-blogging-on-virology-blog/ Trial By Error, Continued: My Libelous Blogging on Virology Blog]
*Mar 23 2017 [http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/ An open letter to Psychological Medicine, again!]
*Mar 18 2017 The New York Times, [https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?smid=tw-share&_r=0 Getting It Wrong on Chronic Fatigue Syndrome] (with [[Julie Rehmeyer]]) and Letters of response' [https://mobile.nytimes.com/2017/03/27/opinion/understanding-and-treating-chronic-fatigue.html?em_pos=small&emc=edit_ty_20170327&nl=opinion-today&nl_art=14&nlid=77538787&ref=headline&te=1&referer= Letters - The New York Times]
*Mar 13 2017 [http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/ An open letter to Psychological Medicine about “recovery” and the PACE trial]
*Nov 28 2016 [http://www.virology.ws/2016/11/28/trial-by-error-continued-a-follow-up-post-on-fitnet-nhs/ Trial By Error, Continued: A Follow-Up Post on FITNET-NHS]
*Nov 21 2016 [http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/ Trial By Error, Continued: The New FITNET Trial for Kids]
*Oct 27 2016 [http://undark.org/article/chronic-fatigue-graded-exercise-pace/ ''Worse Than the Disease'']
*Sep 22 2016 [http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ Trial By Error, Continued: The Real Data]
*Sep 6 2016 [http://www.virology.ws/2016/09/06/open-letter-to-queen-mary-university-london-about-pace/ Open letter to Queen Mary University of London about PACE]
*Sep 1 2016 [http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ Trial By Error, Continued: My Questions for Lancet Editor Richard Horton]
*Aug 29 2016 [http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ Once Again, Lancet Stumbles on PACE]
*May 23 2016 [http://www.virology.ws/2016/05/23/an-open-letter-to-plos-one/. An open letter to PLoS One.]
*Feb 10 2016 [http://www.virology.ws/2016/02/10/open-letter-lancet-again/ An open letter to The Lancet, again]
*Feb 4 2016 [http://healthaffairs.org/blog/2016/02/04/reexamining-chronic-fatigue-syndrome-research-and-treatment-policy/ Reexamining Chronic Fatigue Syndrome Research And Treatment Policy]
*Feb 1 2016 [http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/ Trial By Error, Continued: A Few Words About “Harassment”]
*Jan 19 2016 [http://www.virology.ws/2016/01/19/trial-by-error-continued-more-nonsense-from-the-lancet-psychiatry/ Trial By Error, Continued: More Nonsense from The Lancet Psychiatry]
*Jan 19 2016 [http://www.virology.ws/2016/01/19/at-least-were-not-vexatious/ At least we’re not vexatious]
*Jan 7 2016 [http://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/ Trial By Error, Continued: Did the PACE Trial Really Prove that Graded Exercise Is Safe?] (with [[Julie Rehmeyer]])
*Jan 4 2016 [http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/ Trial By Error, Continued: Questions for Dr. White and his PACE Colleagues]
*Dec 22 2015 [http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/ Revisiting the PLoS One economics analysis of PACE]
*Dec 17 2015 [http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/ A request for data from the PACE trial]
*Nov 18 2015 [http://alumni.berkeley.edu/california-magazine/just-in/2015-11-18/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped "Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough"]
*Nov 17 2015 [http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ "Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?"]
*Nov 13 2015 [http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/ "An open letter to Dr. Richard Horton and The Lancet"]
*Nov 9 2015 [http://www.virology.ws/2015/11/09/trial-by-error-continued-why-has-the-pace-studys-sister-trial-been-disappeared-and-forgotten/ "Trial By Error, Continued: Why has the PACE Study’s Sister Trial been Disappeared and Forgotten?"]
*Nov 4 2015 [http://www.virology.ws/2015/11/04/trial-by-error-continued-did-the-pace-study-really-adopt-a-strict-criterion-for-recovery/ "Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?"]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/ "David Tuller responds to the PACE Investigators"]
*Oct 30 2015 [http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/ PACE trial investigators respond to David Tuller]
*Oct 23 2015 [http://www.virology.ws/2015/10/23/trial-by-error-iii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (final instalment)"]
*Oct 22 2015 [http://www.virology.ws/2015/10/22/trial-by-error-ii/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second instalment)"]
*Oct 21 2015 [http://www.virology.ws/2015/10/21/trial-by-error-i/ "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study"]
*Feb 10 2015 [http://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/ "Chronic Fatigue Syndrome Gets a New Name"]
*Nov 24 2014 [[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)]]
*Jan 27 2014 [http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome#.tnegBjJ82 How "Chronic Fatigue Syndrome" Obscures A Serious Illness]
*Sep 18 2012 [http://well.blogs.nytimes.com/2012/09/18/chronic-fatigue-syndrome-back-to-square-1/ "Chronic Fatigue Syndrome Back to Square 1"]
*Feb 6 2012 [http://www.nytimes.com/2012/02/07/health/fallout-from-fatigue-syndrome-retraction-is-far-and-wide.html?pagewanted=1&_r=1 "Fallout From Fatigue Syndrome Retraction Is Wide"]
*Dec 26 2011 [http://www.nytimes.com/2011/12/27/health/research/scholars-retract-another-study-linking-xmrv-to-chronic-fatigue-syndrome.html "Scholars Retract Another Study Linking Virus to Fatigue Syndrome"]
*Dec 22 2011 [http://www.nytimes.com/2011/12/23/health/research/science-journal-retracts-chronic-fatigue-syndrome-paper.html?ref=research "Fatigue Syndrome Study Is Retracted by Journal"]
*Nov 23 2011 [http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/ "Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale"]
*Sep 22 2011 [http://www.nytimes.com/2011/09/23/health/research/23fatigue.html "Viral Theory Is Set Back in Chronic Fatigue Syndrome Study"]
*Jun 1 2011 [http://www.nytimes.com/2011/06/01/health/research/01fatigue.html?_r=1 "2 Studies Examine Syndrome of Fatigue"]
*Mar 4 2011 [http://www.nytimes.com/2011/03/08/health/research/08fatigue.html "Defining an Illness Is Fodder for Debate"]
*Feb 17 2011 [http://www.nytimes.com/2011/02/18/health/research/18fatigue.html "Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds"]
*Jan 3 2011 [http://www.nytimes.com/2011/01/04/health/04fatigue.html "Exhausted by Illness, and Doubts"]
*Aug 24 2010 [http://query.nytimes.com/gst/fullpage.html?res=9C00E4DB1439F937A1575BC0A9669D8B63 "Study Links Chronic Fatigue to Virus Class"]
*May 30 2008 [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-expert.html "Learning Firsthand About Chronic Fatigue Syndrome"]
*May 30 2008 [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-questions.html "What to Ask About Chronic Fatigue Syndrome"]
*Jul 17 2007 [http://www.nytimes.com/2007/07/17/science/17fatigue.html "Chronic Fatigue No Longer Seen as 'Yuppie Flu'"]

==Learn more==
*[http://www.berkeleywellness.com/author/davidtullerdrph Berkeley Wellness - David Tuller]

==References==
<References/>

[[Category:Psychological paradigm critics]][[Category:PACE trial critics]]

What happens when you have a disease doctors can't diagnose - TED Talk (2016)

2017-06-08T14:01:41Z

DxCFS:See also

[[File:J_Brea_TED.JPG|300px|thumb|right|Jennifer Brea - Source:TED.com]]

'''What happens when you have a disease doctors can't diagnose - TED Talk (2016)''' is about [[Jennifer Brea]]'s experience of her disease onset, a psychiatric misdiagnosis of conversion disorder, becoming bedbound and wheelchair bound due to a walk home from her neurologist's office, her correct diagnosis of [[Myalgic Encephalomyelitis]], and her pursuit of accurate knowledge about her disease.

==Summary==
"Five years ago, TED Fellow Jennifer Brea became progressively ill with myalgic encephalomyelitis, commonly known as [[chronic fatigue syndrome]], a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her condition, whose root causes and physical effects we don't fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat."<ref>[https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose What happens when you have a disease doctors can't diagnose - TED Talk (2016) by Jennifer Brea]</ref>

==Viewing options==
*[https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose TED site]
*[https://www.youtube.com/watch?v=Fb3yp4uJhq0 Youtube]

==See also==
*[[Unrest]] (2017) Documentary by Jennifer Brea

==References==

Unrest

2017-06-08T13:56:11Z

DxCFS:/* See also */ x

[[File:Unrest film.png|400px|thumb|right]]
'''Unrest''' is a documentary film about ME/CFS that premiered in January 2017 at the Sundance Film Festival. [[Jennifer Brea]], a patient, directed filming from her sickbed using video conferencing tools.<ref>[http://www.canaryinacoalminefilm.com/team/ Canary in a Coal Mine Team]</ref><ref>[http://blog.ted.com/illuminating-an-illness-without-end-fellows-friday-with-jennifer-brea/ Illuminating an illness without end: Fellows Friday with Jennifer Brea]</ref>. The film was primarily funded through a Kickstarter campaign which raised $212,962.<ref>[https://www.kickstarter.com/projects/959776320/canary-in-a-coal-mine Canary in a Coal Mine Kickstarter]</ref>

The film's previous working title was 'Canary in a Coal Mine'.

'Unrest' premiered in competition at the 2017 [https://en.wikipedia.org/wiki/Sundance_Film_Festival Sundance Film Festival], in the US Documentary category. Brea won the category ''U.S. Documentary Special Jury Award for Editing''.<ref>[http://www.sundance.org/blogs/news/competition-and-next-films-announced-for-2017-festival Competitions and next films announced for 2017 festival]</ref><ref>[http://www.sundance.org/festivals/sundance-film-festival/program/AWS-guide?ref=ksrtwitter&__prclt=WinCUx1q 2017 Sundance Film Festival Award Winners]</ref>

[https://en.wikipedia.org/wiki/PBS PBS] acquired the US broadcast rights for 'Unrest' and will be shown on [https://en.wikipedia.org/wiki/Independent_Lens Independent Lens] the first quarter of 2018.<ref>[http://www.indiewire.com/2017/01/pbs-unrest-sundance-film-acquisition-1201776575/ PBS Buys Sundance Medical Mystery Documentary ‘Unrest’ - Indie Wire By: Graham Winfrey]</ref>

==Awards and fellowships==

*2013 Paley Center DocPitch
*2014 Sundance DFP Grant
*2014 Chicken & Egg Grant
*2014 Harnisch Foundation Grant
*2015 Sundance DFP Fellowship
*2015 Good Pitch New York
*2015 IFP Spotlight on Documentaries
*2016 Fledgling Fund Audience Engagement Fellowship
*2016 IFP Documentary Lab
*2016 Tribeca Film Institute Network Market
*2016 Sheffield Doc/Fest MeetMarket and Alternate Realities
*2016 Firelight Media Lab
*2016 Sundance Edit & Story Lab
*2017 Sundance Film Festival US Documentary Competition

==Notable people==
*[[Jennifer Brea]] (Director/Producer, screenwriter)
*Deborah Hoffmann (Executive Producer & Creative Advisor)
*Lindsey Dryden (Producer)
*Patricia Gillespie (Producer)
*Alysa Nahmias (Co-Producer)
*Kim Roberts (Editor and screenwriter)
*Emiliano Battista (Editor)
*Sam Heesen, Christian Laursen (Director of photography)
*Bear McCreary (Composer)

A list of all those involved in the film has been published.<ref>[http://www.unrest.film/team/ Unrest Team]</ref>

==Reviews==
*23 Jan 2017, [http://variety.com/2017/film/reviews/unrest-sundance-film-festival-1201966610/ "Sundance Film Review: ‘Unrest’," by Dennis Harvey for ''Variety'']
*23 Jan 2017, [http://www.hollywoodreporter.com/review/unrest-review-967867 "'Unrest': Film Review | Sundance 2017," by John DeFore for ''The Hollywood Reporter'']
*23 Jan 2017, [https://www.bleedingcool.com/2017/01/23/sundance-2017-unrest-emotional-watch/ "Sundance 2017: ‘Unrest’ Is An Emotional Look At Human Strength," by Kaitlyn Booth for ''Bleeding Cool'']

==Online presence==
*[http://www.unrest.film/ Official website]
*[https://en.wikipedia.org/wiki/Unrest_(2017_film) Wikipedia - Unrest (2017 film)]
*[https://www.facebook.com/unrestfilm/ Facebook page]
*[https://twitter.com/unrestfilm Twitter]
*[http://www.imdb.com/title/tt3268850/ IMDb page]
*[https://www.youtube.com/channel/UC6qt7dyl4F_MXMpHPHPJtIw YouTube channel]

==Learn more==
*[https://en.wikipedia.org/wiki/Unrest_(2017_film) Wikipedia - Unrest (2017 film)]
*2016, [http://www.meaction.net/2016/11/30/jen-breas-unrest-to-debut-at-sundance-film-festival/?mc_cid=356f42e1a4&mc_eid=187c2b7814 Jen Brea's Unrest to debut at Sundance Film Festival]
*2016, [http://www.unrest.film/blog/2016/11/29/canary-in-a-coal-mine-is-now-unrest Canary in a Coal Mine is now Unrest]
*2016, [https://medium.com/@eejackson/women-vs-hysteria-no-more-678b2f8f1193#.zr8tmw7ty Women vs. Hysteria No More…]
*2014, [http://www.prohealth.com/library/showarticle.cfm?libid=19165 Interview: Jennifer Brea Talks About Obstacles, Adjustments, and Inspiration]
*2013, [http://abcnews.go.com/Health/video/canary-coal-mine-examines-chronic-fatigue-syndrome-20727717 'Canary In a Coal Mine' Examines Chronic Fatigue Syndrome]

==See also==
*[[What happens when you have a disease doctors can't diagnose - TED Talk (2016)]] by Jennifer Brea

==References==
<references>
</references>

[[Category:Film]]

United States

2017-06-08T13:47:40Z

DxCFS:/* Learn more */ x

[[File:United_States_flag.svg.png|320px|right|thumb|'''United States''']]

==Demographics==
At least 1 million Americans are estimated to have [[ME/CFS]].<ref>http://www.meaction.net/about/what-is-me/</ref> The [[Institute of Medicine report]] estimated 836,000 and 2.5 million Americans have ME/CFS at a cost of between 17 and 24 billion dollars annually in the US.<ref name="IOM2015MECFS"/> This represents a prevalence of around 0.3% of the population.

A report by the Health and Medicine Division of the National Academies estimates the number of people with [[ME/CFS]] in the US to be between 836,000 and 2.5 million.<ref>http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx</ref>

Regionally, there are estimates of up to:
*300,000 in California
*79,000 in Georgia
*52,000 in Massachusetts
*76,000 in Michigan
*69,000 in New Jersey
*98,000 in Pennsylvania
*55,000 in Seattle
*5,000 in Washington D.C.<ref>http://www.huffingtonpost.com/rivka-solomon/millionsmissing-a-hidden-_b_12183114.html</ref>

==Medical guidelines==
*[[Centers for Disease Control]] (CDC) The CDC Guidelines for [[CFS]] have been criticized by the [[ME/CFS]] community for its continued recommendations of exercise even though the [[Institute of Medicine report]] (IOMR) does not recommend [[Graded exercise therapy]] or [[Cognitive behavioral therapy]] which were implemented in the UK due to the [[PACE trial]]. Some healthcare practitioners in the USA will still implement [[Exercise]] therapies and refer patients to psychiatrists even though the (IOMR) did not recommend these as forms of treatment.
*[[National Institutes of Health]] (NIH) The NIH has announced the [[NIH Post-Infectious ME/CFS Study]].
*[https://en.wikipedia.org/wiki/Food_and_Drug_Administration Food and Drug Administration] (FDA) The FDA has not approved any drug treatment for ME/CFS.
*[[National Academy of Medicine]] (NAM); (formerly [[IOM]]) The IOM (NAM as of June 2015) released the [[Institute of Medicine report]] on February 10, 2015. This is the [http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf Clinicians Guide]. The name [[Systemic Exertion Intolerance Disease]] (SEID) and new diagnostic criteria has been proposed but not implemented as of April, 2016.
*[https://en.wikipedia.org/wiki/United_States_Department_of_Health_and_Human_Services Health and Human Services] (HHS) The HHS has a [[Chronic Fatigue Syndrome Advisory Committee]]. (CFSAC)

==National health department==
*[[Centers for Disease Control]] (CDC)
*[[National Institutes of Health]] (NIH)
*[[Food and Drug Administration]] (FDA)
*[[National Academy of Medicine]] (NAM); formerly [[Institute of Medicine]] (IOM)
*[[Health and Human Services]] (HHS)

==Government health insurance==
The [https://www.usa.gov/finding-health-insurance Affordable Health Care Act] (AHCA) - (Obamacare) can lower health care costs, provide more health care choices and improve the quality of healthcare.

If you are not currently on Social Security Insurance (SSI) or Social Security Disability Insurance (SSDI) but need healthcare coverage due to disability there are resources through local city, county or state government. [https://www.usa.gov/finding-health-insurance#item-36797 Medical and Health Resources for People with Disabilities]

If you recently left a job where you had health insurance you may want to consider [https://www.usa.gov/finding-health-insurance#item-36992 COBRA].

==Private health insurance==
There are many private health care providers in the USA. ''Medical News Today'' "Health Insurance" article provides a heading: [http://www.medicalnewstoday.com/info/health-insurance/find-private-health-insurance.php Matching your needs with what is available].

==Access to care==
Although clinicians (see "Clinicians" heading below) are those known to be on the cutting edge of [[CFS]] care, they are still limited by the fact there are no approved drugs, therapies or reliable treatments.

As of April of 2016, [[Ampligen]] is provided by only a few doctors and the FDA is limiting the number of patients receiving this treatment to 100.<ref>[http://beforeitsnews.com/press-releases/2013/02/hunger-striker-decries-fda-denial-of-only-medicine-for-chronic-fatigue-syndrome-day-8-2735262.html Hunger Striker Decries FDA Denial of Only Medicine for Chronic Fatigue Syndrome, Day 8 - Before It's News]</ref> A patient needs to live near or move to any doctor that provides the intravenous treatment. The cost is $75 per vial two times a week administered weekly. This does not include the intravenous cost. Costs ''may'' be covered under a recovery program previously known as "compassionate care". The price may go to $200 a vial.<ref>[http://www.meaction.net/2015/08/10/ampligen-price-increases-substantially-available-soon-in-europe/ Ampligen price more than doubles, available soon in Europe - MEAction By: Jen Brea]</ref>

Patients have stated that [[Rituximab]] is being offered to [[ME/CFS]] patients in the United States ([[Andreas Kogelnik]] at the [http://www.openmedicineinstitute.org/the-clinic.html Open Medicine Institute]) and in Norway (a private clinic in Sandnes)<ref name="SandnesNO"/> but [[Jonathan Edwards]] has advised against this, stating in 2015 "As the person who established that rituximab is useful in autoimmune disease I would actually advise against this. Rituximab is very unlike most drugs in that you have to understand how to use it in considerable detail in order to give it safely and effectively".<ref>[http://forums.phoenixrising.me/index.php?threads/is-there-any-way-i-can-be-treated-with-rituximab-privately.39972/ Is there any way I can be treated with rituximab privately?]</ref>

Ask your Primary, Rheumatologist or Neurologist to recommend a doctor who specializes in CFS or you can look online for the many lists by state for those doctors who will care for ME/CFS patients. Most will not treat with Ampligen or Rituximab but will treat sleep disorders, [[Orthostatic intolerance]], [[POTS]] and the many symptoms and co-morbids of ME/CFS.

==Social security and disability benefits==
Disability benefits for CFS are available under the [https://www.ssa.gov/ Social Security Administration].<ref>[http://www.cdc.gov/cfs/news/features/disability.html CFS - CDC]</ref>

[[HHS]] outlines [[SSA]]'s [https://www.hhs.gov/sites/default/files/advcomcfs/meetings/presentations/cfs-ssr-cfsac-presentation-june-2014.pdf ''Social Security Ruling 14-1p'' - PDF]. Jun 17, 2014

The [https://howtogeton.wordpress.com/2017/03/11/how-and-where-to-fill-out-initial-application-forms/ Social Security Disability application] may be completed online, on paper, in person, or through a lawyer or caseworker.

[http://www.disabilitysecrets.com/page5-13.html SSI and SSDI have different thresholds and requirements].

"For those who can continue to work part-time with reduced hours and/or responsibilities, state and federal laws require many employers to provide disabled patients with reasonable [http://www.dol.gov/general/topic/disability/jobaccommodations Job Accommodations]."<ref>[https://www.masscfids.org/disability Disability MASS CFIDS]</ref><ref>[http://www.womenshealth.gov/publications/our-publications/fact-sheet/chronic-fatigue-syndrome.html CFS Womenshealth.gov]</ref>

=== Blogs about navigating SSD process ===
*Resources for getting approved for disability include this [http://www.meaction.net/2017/04/17/the-sleepy-girl-guide-to-social-security-disability-u-s/ Guide to Social Security Disability for People with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome], available on the #MEAction website.

*[https://howtogeton.wordpress.com/2017/03/20/how-pattys-lawyer-never-told-her-the-most-important-thing-she-needed-to-know/ How Patty’s Lawyer Never Told Her What She Needed to Know]

*[https://howtogeton.wordpress.com/2017/05/01/sample-doctor-letters-for-disability/ Sample Doctor Letters for Disability]

==Patient charities==
<div style="column-count:2;-moz-column-count:2;-webkit-column-count:2">
*[[National Alliance for Myalgic Encephalomyelitis]]
*[[Massachusetts CFIDS/ME & FM Association]]
*[[May12.org]]
*[[#MEAction]]
*[[ME Advocacy]]
</div>

==Research==
*[[Institute of Medicine report]]
*[[NIH Post-Infectious ME/CFS Study]]
*[[:Category:USA researchers|USA researchers]]
*[[:Category:American research initiatives|American research initiatives]]

==Clinicians==
*California:{{PagesInCategory|California clinicians|mode=inline}}, [[Phillipe Bottello]], [[Kent Holtorf]], [[Open Medicine Institute]], [[Amy Yasko]], [[Holtorf Medical Group]]
*Colorado:{{PagesInCategory|Colorado clinicians|mode=inline}}
*Connecticut:{{PagesInCategory|Connecticut clinicians|mode=inline}}‎
*Florida:{{PagesInCategory|Florida clinicians|mode=inline}}, [[Daniel Dantini]]
*Georgia:
[[Holtorf Medical Group]]
*Hawaii:{{PagesInCategory|Hawaii clinicians|mode=inline}}
*Illinois:{{PagesInCategory|Illinois clinicians‎|mode=inline}}
*Iowa:{{PagesInCategory|Iowa clinicians‎|mode=inline}}
*Louisiana :{{PagesInCategory|Louisiana clinicians‎|mode=inline}}
*Maryland:{{PagesInCategory|Maryland clinicians‎|mode=inline}}, [[Alan Weiss]]
*Massachusetts:{{PagesInCategory|Massachusetts clinicians‎|mode=inline}}
*Michigan:{{PagesInCategory|Michigan clinicians|mode=inline}}‎
*Minnesota:{{PagesInCategory|Minnesota clinicians|mode=inline}}‎
*Mississippi:{{PagesInCategory|Mississippi clinicians|mode=inline}}‎
*Missouri:‎
[[Joseph Brewer]]
*Nevada:{{PagesInCategory|Nevada clinicians|mode=inline}}‎, [[Robert Fredericks]]
*New Jersey:{{PagesInCategory|New Jersey clinicians|mode=inline}}
*New York:{{PagesInCategory|New York clinicians|mode=inline}}
*North Carolina:{{PagesInCategory|North Carolina clinicians|mode=inline}}
*Pennsylvania: [[Joseph Garabedian]], [[Garabedian Clinic]], [[Holtorf Medical Group]]
*Texas:{{PagesInCategory|Texas clinicians|mode=inline}}
*Utah:{{PagesInCategory|Utah clinicians|mode=inline}}
*Virginia:{{PagesInCategory|Virginia clinicians|mode=inline}}
*Washington:{{PagesInCategory|Washington clinicians|mode=inline}}

==Notable patients==
[[Jennifer Brea]], [[Whitney Dafoe]], [[Ryan Prior]], [[Jennie Spotila]], [[Brian Vastag]], [[Hillary Johnson]], [[Julie Rehmeyer]], [[Leonard Jason]], [[Cort Johnson]], [[Deborah Waroff]], [[Beth Mazur]], [[Mary Schweitzer]], [[Steven Lubet]], [[Carol Head]], [[Erik Johnson]], [[Chardale Dotson Irvine]], [[Morgan Fairchild]], [[Jeannette Burmeister]], [[Toni Bernhard]], [[Robert Miller]], [[Laura Hillenbrand]]

==Proclamations==

There is a list of [[United States proclamations]].

==States==
*[[New Jersey Legislation]]
*[https://drive.google.com/file/d/0B37JHmPXER6JZkZRd0hIalA2bUE/view New York Department of Health May 2017 Letter To All NY State Physicians on ME/CFS]

==Learn more==
*[[Forgotten Plague]] (2015) Documentary
*[[Invisible Illness - Stories of Chronic Fatigue Syndrome]] Youtube Mini-Doc (2015)
*[[What happens when you have a disease doctors can't diagnose - TED Talk (2016)]] by Jennifer Brea
*[[Unrest]] (2017) Documentary

==See also==
*[[Blood donation]]
*[[Outbreaks]]
*[[Pathways to prevention report]] (P2P)
*[[Trans-NIH Working Group]]
*[[UNUM]]

==References==
<references>
<ref name="IOM2015MECFS">{{citation
| last1 = Institute of Medicine (USA)
| last2 = Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
| display-authors =
| title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
| date = 10 February 2015
| url = http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx
}}</ref>
<ref name="SandnesNO">{{citation
| author = NRK television, Norway
| title = A private clinic in Sandnes, Norway is treating ME with Rituximab
| type = video
| date = 27 Nov 2015
| url = https://www.youtube.com/watch?v=MfqJWRhgVx0
}}</ref>

</references>
[[Category:Countries]] [[Category:North America]] [[Category:United States]]

What happens when you have a disease doctors can't diagnose - TED Talk (2016)

2017-06-08T13:35:49Z

DxCFS:x

[[File:J_Brea_TED.JPG|300px|thumb|right|Jennifer Brea - Source:TED.com]]

'''What happens when you have a disease doctors can't diagnose - TED Talk (2016)''' is about [[Jennifer Brea]]'s experience of her disease onset, a psychiatric misdiagnosis of conversion disorder, becoming bedbound and wheelchair bound due to a walk home from her neurologist's office, her correct diagnosis of [[Myalgic Encephalomyelitis]], and her pursuit of accurate knowledge about her disease.

==Summary==
"Five years ago, TED Fellow Jennifer Brea became progressively ill with myalgic encephalomyelitis, commonly known as [[chronic fatigue syndrome]], a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her condition, whose root causes and physical effects we don't fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat."<ref>[https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose What happens when you have a disease doctors can't diagnose - TED Talk (2016) by Jennifer Brea]</ref>

==Viewing options==
*[https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose TED site]
*[https://www.youtube.com/watch?v=Fb3yp4uJhq0 Youtube]

==References==

What happens when you have a disease doctors can't diagnose - TED Talk (2016)

2017-06-08T13:34:50Z

DxCFS:Photo

[[File:J_Brea_TED.JPG|300px|thumb|right|Jennifer Brea - Source:TED.com]]

'''What happens when you have a disease doctors can't diagnose - TED Talk (2016)''' is about [[Jennifer Brea]]'s experience on her disease onset, a psychiatric misdiagnosis of conversion disorder, becoming bedbound and wheelchair bound due to a walk home from her neurologist's office, her correct diagnosis of [[Myalgic Encephalomyelitis]], and her pursuit of accurate knowledge about her disease.

==Summary==
"Five years ago, TED Fellow Jennifer Brea became progressively ill with myalgic encephalomyelitis, commonly known as [[chronic fatigue syndrome]], a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her condition, whose root causes and physical effects we don't fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat."<ref>[https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose What happens when you have a disease doctors can't diagnose - TED Talk (2016) by Jennifer Brea]</ref>

==Viewing options==
*[https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose TED site]
*[https://www.youtube.com/watch?v=Fb3yp4uJhq0 Youtube]

==References==

File:J Brea TED.JPG

2017-06-08T13:29:41Z

DxCFS:Jennifer Brea - Source: TED.com From Talk "What happens when you have a disease doctors can't diagnose"

Jennifer Brea - Source: TED.com
From Talk "What happens when you have a disease doctors can't diagnose"

What happens when you have a disease doctors can't diagnose - TED Talk (2016)

2017-06-08T13:21:58Z

DxCFS:Create and Popultae

'''What happens when you have a disease doctors can't diagnose - TED Talk (2016)''' is about [[Jennifer Brea]]'s experience on her disease onset, a psychiatric misdiagnosis of conversion disorder, becoming bedbound and wheelchair bound due to a walk home from her neurologist's office, her correct diagnosis of [[Myalgic Encephalomyelitis]], and her pursuit of accurate knowledge about her disease.

==Summary==
"Five years ago, TED Fellow Jennifer Brea became progressively ill with myalgic encephalomyelitis, commonly known as [[chronic fatigue syndrome]], a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her condition, whose root causes and physical effects we don't fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat."<ref>[https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose What happens when you have a disease doctors can't diagnose - TED Talk (2016) by Jennifer Brea]</ref>

==Viewing options==
*[https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose TED site]
*[https://www.youtube.com/watch?v=Fb3yp4uJhq0 Youtube]

==References==

United States

2017-06-08T13:04:33Z

DxCFS:/* States */ NY Dept of Health Letter

[[File:United_States_flag.svg.png|320px|right|thumb|'''United States''']]

==Demographics==
At least 1 million Americans are estimated to have [[ME/CFS]].<ref>http://www.meaction.net/about/what-is-me/</ref> The [[Institute of Medicine report]] estimated 836,000 and 2.5 million Americans have ME/CFS at a cost of between 17 and 24 billion dollars annually in the US.<ref name="IOM2015MECFS"/> This represents a prevalence of around 0.3% of the population.

A report by the Health and Medicine Division of the National Academies estimates the number of people with [[ME/CFS]] in the US to be between 836,000 and 2.5 million.<ref>http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx</ref>

Regionally, there are estimates of up to:
*300,000 in California
*79,000 in Georgia
*52,000 in Massachusetts
*76,000 in Michigan
*69,000 in New Jersey
*98,000 in Pennsylvania
*55,000 in Seattle
*5,000 in Washington D.C.<ref>http://www.huffingtonpost.com/rivka-solomon/millionsmissing-a-hidden-_b_12183114.html</ref>

==Medical guidelines==
*[[Centers for Disease Control]] (CDC) The CDC Guidelines for [[CFS]] have been criticized by the [[ME/CFS]] community for its continued recommendations of exercise even though the [[Institute of Medicine report]] (IOMR) does not recommend [[Graded exercise therapy]] or [[Cognitive behavioral therapy]] which were implemented in the UK due to the [[PACE trial]]. Some healthcare practitioners in the USA will still implement [[Exercise]] therapies and refer patients to psychiatrists even though the (IOMR) did not recommend these as forms of treatment.
*[[National Institutes of Health]] (NIH) The NIH has announced the [[NIH Post-Infectious ME/CFS Study]].
*[https://en.wikipedia.org/wiki/Food_and_Drug_Administration Food and Drug Administration] (FDA) The FDA has not approved any drug treatment for ME/CFS.
*[[National Academy of Medicine]] (NAM); (formerly [[IOM]]) The IOM (NAM as of June 2015) released the [[Institute of Medicine report]] on February 10, 2015. This is the [http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf Clinicians Guide]. The name [[Systemic Exertion Intolerance Disease]] (SEID) and new diagnostic criteria has been proposed but not implemented as of April, 2016.
*[https://en.wikipedia.org/wiki/United_States_Department_of_Health_and_Human_Services Health and Human Services] (HHS) The HHS has a [[Chronic Fatigue Syndrome Advisory Committee]]. (CFSAC)

==National health department==
*[[Centers for Disease Control]] (CDC)
*[[National Institutes of Health]] (NIH)
*[[Food and Drug Administration]] (FDA)
*[[National Academy of Medicine]] (NAM); formerly [[Institute of Medicine]] (IOM)
*[[Health and Human Services]] (HHS)

==Government health insurance==
The [https://www.usa.gov/finding-health-insurance Affordable Health Care Act] (AHCA) - (Obamacare) can lower health care costs, provide more health care choices and improve the quality of healthcare.

If you are not currently on Social Security Insurance (SSI) or Social Security Disability Insurance (SSDI) but need healthcare coverage due to disability there are resources through local city, county or state government. [https://www.usa.gov/finding-health-insurance#item-36797 Medical and Health Resources for People with Disabilities]

If you recently left a job where you had health insurance you may want to consider [https://www.usa.gov/finding-health-insurance#item-36992 COBRA].

==Private health insurance==
There are many private health care providers in the USA. ''Medical News Today'' "Health Insurance" article provides a heading: [http://www.medicalnewstoday.com/info/health-insurance/find-private-health-insurance.php Matching your needs with what is available].

==Access to care==
Although clinicians (see "Clinicians" heading below) are those known to be on the cutting edge of [[CFS]] care, they are still limited by the fact there are no approved drugs, therapies or reliable treatments.

As of April of 2016, [[Ampligen]] is provided by only a few doctors and the FDA is limiting the number of patients receiving this treatment to 100.<ref>[http://beforeitsnews.com/press-releases/2013/02/hunger-striker-decries-fda-denial-of-only-medicine-for-chronic-fatigue-syndrome-day-8-2735262.html Hunger Striker Decries FDA Denial of Only Medicine for Chronic Fatigue Syndrome, Day 8 - Before It's News]</ref> A patient needs to live near or move to any doctor that provides the intravenous treatment. The cost is $75 per vial two times a week administered weekly. This does not include the intravenous cost. Costs ''may'' be covered under a recovery program previously known as "compassionate care". The price may go to $200 a vial.<ref>[http://www.meaction.net/2015/08/10/ampligen-price-increases-substantially-available-soon-in-europe/ Ampligen price more than doubles, available soon in Europe - MEAction By: Jen Brea]</ref>

Patients have stated that [[Rituximab]] is being offered to [[ME/CFS]] patients in the United States ([[Andreas Kogelnik]] at the [http://www.openmedicineinstitute.org/the-clinic.html Open Medicine Institute]) and in Norway (a private clinic in Sandnes)<ref name="SandnesNO"/> but [[Jonathan Edwards]] has advised against this, stating in 2015 "As the person who established that rituximab is useful in autoimmune disease I would actually advise against this. Rituximab is very unlike most drugs in that you have to understand how to use it in considerable detail in order to give it safely and effectively".<ref>[http://forums.phoenixrising.me/index.php?threads/is-there-any-way-i-can-be-treated-with-rituximab-privately.39972/ Is there any way I can be treated with rituximab privately?]</ref>

Ask your Primary, Rheumatologist or Neurologist to recommend a doctor who specializes in CFS or you can look online for the many lists by state for those doctors who will care for ME/CFS patients. Most will not treat with Ampligen or Rituximab but will treat sleep disorders, [[Orthostatic intolerance]], [[POTS]] and the many symptoms and co-morbids of ME/CFS.

==Social security and disability benefits==
Disability benefits for CFS are available under the [https://www.ssa.gov/ Social Security Administration].<ref>[http://www.cdc.gov/cfs/news/features/disability.html CFS - CDC]</ref>

[[HHS]] outlines [[SSA]]'s [https://www.hhs.gov/sites/default/files/advcomcfs/meetings/presentations/cfs-ssr-cfsac-presentation-june-2014.pdf ''Social Security Ruling 14-1p'' - PDF]. Jun 17, 2014

The [https://howtogeton.wordpress.com/2017/03/11/how-and-where-to-fill-out-initial-application-forms/ Social Security Disability application] may be completed online, on paper, in person, or through a lawyer or caseworker.

[http://www.disabilitysecrets.com/page5-13.html SSI and SSDI have different thresholds and requirements].

"For those who can continue to work part-time with reduced hours and/or responsibilities, state and federal laws require many employers to provide disabled patients with reasonable [http://www.dol.gov/general/topic/disability/jobaccommodations Job Accommodations]."<ref>[https://www.masscfids.org/disability Disability MASS CFIDS]</ref><ref>[http://www.womenshealth.gov/publications/our-publications/fact-sheet/chronic-fatigue-syndrome.html CFS Womenshealth.gov]</ref>

=== Blogs about navigating SSD process ===
*Resources for getting approved for disability include this [http://www.meaction.net/2017/04/17/the-sleepy-girl-guide-to-social-security-disability-u-s/ Guide to Social Security Disability for People with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome], available on the #MEAction website.

*[https://howtogeton.wordpress.com/2017/03/20/how-pattys-lawyer-never-told-her-the-most-important-thing-she-needed-to-know/ How Patty’s Lawyer Never Told Her What She Needed to Know]

*[https://howtogeton.wordpress.com/2017/05/01/sample-doctor-letters-for-disability/ Sample Doctor Letters for Disability]

==Patient charities==
<div style="column-count:2;-moz-column-count:2;-webkit-column-count:2">
*[[National Alliance for Myalgic Encephalomyelitis]]
*[[Massachusetts CFIDS/ME & FM Association]]
*[[May12.org]]
*[[#MEAction]]
*[[ME Advocacy]]
</div>

==Research==
*[[Institute of Medicine report]]
*[[NIH Post-Infectious ME/CFS Study]]
*[[:Category:USA researchers|USA researchers]]
*[[:Category:American research initiatives|American research initiatives]]

==Clinicians==
*California:{{PagesInCategory|California clinicians|mode=inline}}, [[Phillipe Bottello]], [[Kent Holtorf]], [[Open Medicine Institute]], [[Amy Yasko]], [[Holtorf Medical Group]]
*Colorado:{{PagesInCategory|Colorado clinicians|mode=inline}}
*Connecticut:{{PagesInCategory|Connecticut clinicians|mode=inline}}‎
*Florida:{{PagesInCategory|Florida clinicians|mode=inline}}, [[Daniel Dantini]]
*Georgia:
[[Holtorf Medical Group]]
*Hawaii:{{PagesInCategory|Hawaii clinicians|mode=inline}}
*Illinois:{{PagesInCategory|Illinois clinicians‎|mode=inline}}
*Iowa:{{PagesInCategory|Iowa clinicians‎|mode=inline}}
*Louisiana :{{PagesInCategory|Louisiana clinicians‎|mode=inline}}
*Maryland:{{PagesInCategory|Maryland clinicians‎|mode=inline}}, [[Alan Weiss]]
*Massachusetts:{{PagesInCategory|Massachusetts clinicians‎|mode=inline}}
*Michigan:{{PagesInCategory|Michigan clinicians|mode=inline}}‎
*Minnesota:{{PagesInCategory|Minnesota clinicians|mode=inline}}‎
*Mississippi:{{PagesInCategory|Mississippi clinicians|mode=inline}}‎
*Missouri:‎
[[Joseph Brewer]]
*Nevada:{{PagesInCategory|Nevada clinicians|mode=inline}}‎, [[Robert Fredericks]]
*New Jersey:{{PagesInCategory|New Jersey clinicians|mode=inline}}
*New York:{{PagesInCategory|New York clinicians|mode=inline}}
*North Carolina:{{PagesInCategory|North Carolina clinicians|mode=inline}}
*Pennsylvania: [[Joseph Garabedian]], [[Garabedian Clinic]], [[Holtorf Medical Group]]
*Texas:{{PagesInCategory|Texas clinicians|mode=inline}}
*Utah:{{PagesInCategory|Utah clinicians|mode=inline}}
*Virginia:{{PagesInCategory|Virginia clinicians|mode=inline}}
*Washington:{{PagesInCategory|Washington clinicians|mode=inline}}

==Notable patients==
[[Jennifer Brea]], [[Whitney Dafoe]], [[Ryan Prior]], [[Jennie Spotila]], [[Brian Vastag]], [[Hillary Johnson]], [[Julie Rehmeyer]], [[Leonard Jason]], [[Cort Johnson]], [[Deborah Waroff]], [[Beth Mazur]], [[Mary Schweitzer]], [[Steven Lubet]], [[Carol Head]], [[Erik Johnson]], [[Chardale Dotson Irvine]], [[Morgan Fairchild]], [[Jeannette Burmeister]], [[Toni Bernhard]], [[Robert Miller]], [[Laura Hillenbrand]]

==Proclamations==

There is a list of [[United States proclamations]].

==States==
*[[New Jersey Legislation]]
*[https://drive.google.com/file/d/0B37JHmPXER6JZkZRd0hIalA2bUE/view New York Department of Health May 2017 Letter To All NY State Physicians on ME/CFS]

==Learn more==
*[[Forgotten Plague]] 2015 Documentary
*[[Invisible Illness - Stories of Chronic Fatigue Syndrome]] Youtube Mini-Doc

==See also==
*[[Blood donation]]
*[[Outbreaks]]
*[[Pathways to prevention report]] (P2P)
*[[Trans-NIH Working Group]]
*[[UNUM]]

==References==
<references>
<ref name="IOM2015MECFS">{{citation
| last1 = Institute of Medicine (USA)
| last2 = Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
| display-authors =
| title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
| date = 10 February 2015
| url = http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx
}}</ref>
<ref name="SandnesNO">{{citation
| author = NRK television, Norway
| title = A private clinic in Sandnes, Norway is treating ME with Rituximab
| type = video
| date = 27 Nov 2015
| url = https://www.youtube.com/watch?v=MfqJWRhgVx0
}}</ref>

</references>
[[Category:Countries]] [[Category:North America]] [[Category:United States]]

Enterovirus

2017-06-04T18:15:06Z

DxCFS:Fix IL

Seventy-one types of [https://en.wikipedia.org/wiki/Enterovirus enteroviruses] have been discovered. Among these are [[Coxsackie A]] viruses, [[Coxsackie B]] viruses, [[Echoviruses|echoviruses]] and [[Poliovirus|polioviruses]].

Enteroviruses, unlike [[Herpesvirus|herpesvirus]]es, usually leave the body after an effective immune response. However, they can cause chronic or life-threatening conditions in certain populations,<ref name="Rotbart2001"/> such as in patients with X-linked agammaglobulinemia (XLA).

== Role in Myalgic Encephalomyelitis ==
Enterovirus infection has been posited as a key etiological factor in [[Myalgic encephalomyelitis|Myalgic Encephalomyelitis]] (ME). The evidence for enteroviral persistence in [[ME]] patients has been mixed, due in part to different methods of testing and types of tissue samples (for example muscle biopsies, stool samples, stomach biopsies, cerebrospinal fluid).

Some studies have found evidence of Enteroviral infection in muscle biopsies in a subset of patients, while others have failed to replicate those results.<ref name="McArdle1996"/><ref name="Lindh1996"/><ref name="Archard1988"/>

Research by [[John Chia]] and his son, [[Andrew Chia]] has looked for enteroviruses in gut biopsies. 82% of samples were positive for [https://en.wikipedia.org/wiki/Polyomavirus_capsid_protein_%28VP1%29 viral capsid protein 1] (VP1), compared to 20% of controls. Enteroviral RNA was detected in 37% of biopsy samples, compared to 4.7% of controls. They posit that a subset of [[Chronic Fatigue Syndrome]] patients have a chronic enteroviral infection.<ref name="ChiaJKS2016"/>

== Treatment ==

There are no FDA-approved treatments for enteroviruses. The drug [[Pleconaril]] has been shown to have activity against a number of enteroviruses<ref name="Rotbart2001"/><ref name="Pevear1999"/><ref name="Bauer2002"/><ref name="Groarke1999"/><ref name="Abzug2016"/> but has not been approved by the [[FDA]].

Treatment usually involves supporting the immune response particularly in those with documented immune dysfunction. Dr. Chia treats his patients with enteroviral infection with [[Equilibrant]], [[gammaglobulin]] and [[interferon]].<ref name="evmed-treatment"/>

==Published Studies==
*2016, A study on brain tissue samples from a deceased ME patient found evidence of enterovirus specific genomic sequences and enteroviral protein in the patient's cerebral cortex.<ref name="Richardson2016"/>
*2016, A study on stomach tissue samples from CFS patients found that 82% of patients have evidence of chronic enterovirus infection of the stomach.<ref name="ChiaJKS2016"/>
*2010, A longitudinal study found that a percentage of patients presenting to emergency care with acute enterovirus infection would go on to develop symptoms of ME and CFS and had demonstrable evidence of viral persistence.<ref name="ChiaJKS2010"/>
*1996, A Swedish study using the [[Fukuda criteria]] was unable to find evidence of any persistent enteroviral infection in fecal samples, muscle biopsies, or cerebrospinal fluid.<ref name="Lindh1996"/>
*1995, In the CFS study group, 42% patients were positive for enteroviral sequences by PCR, compared to only 9% of the comparison group.<ref>http://onlinelibrary.wiley.com/doi/10.1002/jmv.1890460404/full</ref>
*1994, A second postmortem tissue study found positive enterovirus PCR sequences in the muscle, heart, brain stem, and hypothalamus of a deceased ME patient.<ref name="McGarry1994"/>
*1990, Persistence of enteroviral RNA in chronic fatigue syndrome is associated with the abnormal production of equal amounts of positive and negative strands of enteroviral RNA. "This suggests that entrovirus pesistence in muscle is due to a defect in control of viral RNA synthesis."<ref name="Cunningham, 1990"/>
*1990, A retrospective cohort study found that 31% of ME patients had elevated enteroviral IgM antibody levels. Sixteen of these patients were retested annually over three years and all showed persistently elevated [[Coxsackie B]] neutralizing antibody levels and intermittently positive enteroviral IgM, indicating the possibility of a persistent infection.<ref name="Dowsett1990"/>
*1988, A study of 76 postviral fatigue patients and 30 controls found significantly higher numbers of positive cultures and IgM responses to enteroviruses.<ref>http://www.sciencedirect.com/science/article/pii/S0140673688927225</ref>
*1988, In one study, enterovirus-specific RNA three standard deviations greater than controls was found in muscle biopsies of 20% of ME patients studied.<ref name="Archard1988"/>

==Talks & interviews==
*2016, [https://youtu.be/mZdG2otpC3w - 86. ‪ME and the role of enteroviruses / ME en de rol van enterovirussen - Dr. Byron Hyde‬, MD]

==Learn More==
*[http://www.anapsid.org/cnd/diffdx/polio1.html ME/CFS and Polio], chapter from book "ME: The New Plague", Jane Colby.<ref name="ColbyJ1996"/>

==See Also==
*[[Coxsackie B]]
*[[John Chia]]
*[[John Richardson]]
*[[James Mowbray]]

==References==
<references>

<ref name="Abzug2016">{{Citation
| last1 = Abzug | first1 = Mark J
| last2 = Michaels | first2 = Marian G
| last3 = Wald | first3 = Ellen
| last4 = Jacobs | first4 = Richard F
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[[Category:Infectious agents]]

Ben Goldacre

2017-06-04T13:47:50Z

DxCFS:/* Learn more */ Removed Article, Not Sure What This Reference Has To Do With Ben Goldacre, Perhaps Should Be Under Criticism (Not Certain Who Writes This Blog)

Doctor [https://en.wikipedia.org/wiki/Ben_Goldacre Ben Goldacre] is a British doctor, author and campaigner for open trials data. He is part of [http://compare-trials.org/ The COMPare Trials Project - ''Tracking switched outcomes in clinical trials''].<ref>[http://compare-trials.org/ The COMPare Trials Project. Ben Goldacre, Henry Drysdale, Anna Powell-Smith, Aaron Dale, Ioan Milosevic, Eirion Slade, Philip Hartley, Cicely Marston, Kamal Mahtani, Carl Heneghan. www.COMPare-trials.org, 2016.]</ref>

Dr Goldacre used to work for [[Simon Wessely]].<ref>[https://www.researchgate.net/publication/273789688_Finding_the_serious_in_the_absurd Finding the serious in the absurd]</ref>

== Views on... ==

=== [[ME/CFS]] ===
*In 2015 [[James Coyne]] asked Dr Goldacre to support release of the [[PACE trial]] study data. Dr Goldacre refused.<ref>[https://twitter.com/bengoldacre/status/664792550553821184 Twitter]</ref>

*In 2012 Dr Goldacre referred to a "small vindictive community of [[CFS]] patients" "preventing discussion". <ref>[https://twitter.com/bengoldacre/status/250137025615917057 Twitter]</ref>

=== [[Open access]] ===
*[https://www.theguardian.com/science/2007/feb/10/badscience.uknews Open access and the price of knowledge] ''The Guardian'' - Feb 10, 2007

*[https://www.theguardian.com/commentisfree/2011/sep/02/bad-science-academic-publishing Academic publishers run a guarded knowledge economy] ''The Guardian'' - Sep 2, 2011

=== [[Open data]] ===
*[http://www.example.com Ben Goldacre on Open Data] ''University of Oxford'' - Video - Jul 15, 2015

=== [[Outcome switching]] ===
*[http://compare-trials.org/blog/where-does-annals-of-internal-medicine-stand-on-outcome-switching-a-detailed-response/ Where does Annals of Internal Medicine stand on outcome switching? A detailed response.] ''Compare''<ref>[http://compare-trials.org/ Where does Annals of Internal Medicine stand on outcome switching? A detailed response. COMPare - Ben Goldacre, Henry Drysdale, Carl Heneghan, Kamal Mahtani, Eirion Slade, Ioan Milosevic, Aaron Dale, Philip Hartley, and Anna Powell-Smith (the COMPare team).]</ref>

=== [[Peer review]] ===
*[http://theconversation.com/peer-review-bad-pharma-by-ben-goldacre-9940 Peer review: Bad Pharma by Ben Goldacre] ''The Conversation'' - Nov 22, 2012

*[https://www.theguardian.com/commentisfree/2009/sep/12/bad-science-peer-review-goldacre Peer review is flawed but the best we've got] ''The Guardian'' - Sep 11, 2009

== Talks and interviews ==
*[https://www.youtube.com/watch?v=RBotIKbXqMY Ben Goldacre discusses Clinical Data Transparency] Published Feb 18, 2015 - ''Quanticate'' You Tube

*[https://www.youtube.com/watch?v=IY6WcZiOrGs Q&A with Ben Goldacre & Kevin Carroll on Data Transparency] Published May 22, 2014 - ''Quanticate'' You Tube

*[https://www.youtube.com/watch?v=RKmxL8VYy0M What doctors don't know about the drugs they prescribe | Ben Goldacre] Published Sep 27, 2012 - ''TED'' You Tube

*[http://www.example.com Ben Goldacre: Battling Bad Science] Published Sep 29, 2011 - ''TED'' You Tube

*[https://www.youtube.com/watch?v=6gaQb7GzZFQ Ben Goldacre Talks Bad Science] Published Jan 3, 2011 - ''poptech'' You Tube

== Learn more ==
*[https://en.wikipedia.org/wiki/Ben_Goldacre Ben Goldacre - Wikipedia]

==Online Presence==
*[https://twitter.com/bengoldacre Twitter]
*[http://www.badscience.net/ Website]
*[http://www.amazon.com/Ben-Goldacre/e/B002C1VRBQ Amazon US]
*[http://www.amazon.co.uk/Ben-Goldacre/e/B002C1VRBQ Amazon UK]

==References==
<references>

</references>

[[Category: Clinicians]] [[Category: British clinicians]][[Category:Psychological paradigm proponents]]

United States

2017-05-30T13:51:55Z

DxCFS:/* Blogs about navigating SSD process */ Sample Doctor Letters for Disability

[[File:United_States_flag.svg.png|320px|right|thumb|'''United States''']]

==Demographics==
At least 1 million Americans are estimated to have [[ME/CFS]].<ref>http://www.meaction.net/about/what-is-me/</ref> The [[Institute of Medicine report]] estimated 836,000 and 2.5 million Americans have ME/CFS at a cost of between 17 and 24 billion dollars annually in the US.<ref name="IOM2015MECFS"/> This represents a prevalence of around 0.3% of the population.

A report by the Health and Medicine Division of the National Academies estimates the number of people with [[ME/CFS]] in the US to be between 836,000 and 2.5 million.<ref>http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx</ref>

Regionally, there are estimates of up to:
*300,000 in California
*79,000 in Georgia
*52,000 in Massachusetts
*76,000 in Michigan
*69,000 in New Jersey
*98,000 in Pennsylvania
*55,000 in Seattle
*5,000 in Washington D.C.<ref>http://www.huffingtonpost.com/rivka-solomon/millionsmissing-a-hidden-_b_12183114.html</ref>

==Medical guidelines==
*[[Centers for Disease Control]] (CDC) The CDC Guidelines for [[CFS]] have been criticized by the [[ME/CFS]] community for its continued recommendations of exercise even though the [[Institute of Medicine report]] (IOMR) does not recommend [[Graded exercise therapy]] or [[Cognitive behavioral therapy]] which were implemented in the UK due to the [[PACE trial]]. Some healthcare practitioners in the USA will still implement [[Exercise]] therapies and refer patients to psychiatrists even though the (IOMR) did not recommend these as forms of treatment.
*[[National Institutes of Health]] (NIH) The NIH has announced the [[NIH Post-Infectious ME/CFS Study]].
*[https://en.wikipedia.org/wiki/Food_and_Drug_Administration Food and Drug Administration] (FDA) The FDA has not approved any drug treatment for ME/CFS.
*[[National Academy of Medicine]] (NAM); (formerly [[IOM]]) The IOM (NAM as of June 2015) released the [[Institute of Medicine report]] on February 10, 2015. This is the [http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf Clinicians Guide]. The name [[Systemic Exertion Intolerance Disease]] (SEID) and new diagnostic criteria has been proposed but not implemented as of April, 2016.
*[https://en.wikipedia.org/wiki/United_States_Department_of_Health_and_Human_Services Health and Human Services] (HHS) The HHS has a [[Chronic Fatigue Syndrome Advisory Committee]]. (CFSAC)

==National health department==
*[[Centers for Disease Control]] (CDC)
*[[National Institutes of Health]] (NIH)
*[[Food and Drug Administration]] (FDA)
*[[National Academy of Medicine]] (NAM); formerly [[Institute of Medicine]] (IOM)
*[[Health and Human Services]] (HHS)

==Government health insurance==
The [https://www.usa.gov/finding-health-insurance Affordable Health Care Act] (AHCA) - (Obamacare) can lower health care costs, provide more health care choices and improve the quality of healthcare.

If you are not currently on Social Security Insurance (SSI) or Social Security Disability Insurance (SSDI) but need healthcare coverage due to disability there are resources through local city, county or state government. [https://www.usa.gov/finding-health-insurance#item-36797 Medical and Health Resources for People with Disabilities]

If you recently left a job where you had health insurance you may want to consider [https://www.usa.gov/finding-health-insurance#item-36992 COBRA].

==Private health insurance==
There are many private health care providers in the USA. ''Medical News Today'' "Health Insurance" article provides a heading: [http://www.medicalnewstoday.com/info/health-insurance/find-private-health-insurance.php Matching your needs with what is available].

==Access to care==
Although clinicians (see "Clinicians" heading below) are those known to be on the cutting edge of [[CFS]] care, they are still limited by the fact there are no approved drugs, therapies or reliable treatments.

As of April of 2016, [[Ampligen]] is provided by only a few doctors and the FDA is limiting the number of patients receiving this treatment to 100.<ref>[http://beforeitsnews.com/press-releases/2013/02/hunger-striker-decries-fda-denial-of-only-medicine-for-chronic-fatigue-syndrome-day-8-2735262.html Hunger Striker Decries FDA Denial of Only Medicine for Chronic Fatigue Syndrome, Day 8 - Before It's News]</ref> A patient needs to live near or move to any doctor that provides the intravenous treatment. The cost is $75 per vial two times a week administered weekly. This does not include the intravenous cost. Costs ''may'' be covered under a recovery program previously known as "compassionate care". The price may go to $200 a vial.<ref>[http://www.meaction.net/2015/08/10/ampligen-price-increases-substantially-available-soon-in-europe/ Ampligen price more than doubles, available soon in Europe - MEAction By: Jen Brea]</ref>

Patients have stated that [[Rituximab]] is being offered to [[ME/CFS]] patients in the United States ([[Andreas Kogelnik]] at the [http://www.openmedicineinstitute.org/the-clinic.html Open Medicine Institute]) and in Norway (a private clinic in Sandnes)<ref name="SandnesNO"/> but [[Jonathan Edwards]] has advised against this, stating in 2015 "As the person who established that rituximab is useful in autoimmune disease I would actually advise against this. Rituximab is very unlike most drugs in that you have to understand how to use it in considerable detail in order to give it safely and effectively".<ref>[http://forums.phoenixrising.me/index.php?threads/is-there-any-way-i-can-be-treated-with-rituximab-privately.39972/ Is there any way I can be treated with rituximab privately?]</ref>

Ask your Primary, Rheumatologist or Neurologist to recommend a doctor who specializes in CFS or you can look online for the many lists by state for those doctors who will care for ME/CFS patients. Most will not treat with Ampligen or Rituximab but will treat sleep disorders, [[Orthostatic intolerance]], [[POTS]] and the many symptoms and co-morbids of ME/CFS.

==Social security and disability benefits==
Disability benefits for CFS are available under the [https://www.ssa.gov/ Social Security Administration].<ref>[http://www.cdc.gov/cfs/news/features/disability.html CFS - CDC]</ref>

[[HHS]] outlines [[SSA]]'s [https://www.hhs.gov/sites/default/files/advcomcfs/meetings/presentations/cfs-ssr-cfsac-presentation-june-2014.pdf ''Social Security Ruling 14-1p'' - PDF]. Jun 17, 2014

The [https://howtogeton.wordpress.com/2017/03/11/how-and-where-to-fill-out-initial-application-forms/ Social Security Disability application] may be completed online, on paper, in person, or through a lawyer or caseworker.

[http://www.disabilitysecrets.com/page5-13.html SSI and SSDI have different thresholds and requirements].

"For those who can continue to work part-time with reduced hours and/or responsibilities, state and federal laws require many employers to provide disabled patients with reasonable [http://www.dol.gov/general/topic/disability/jobaccommodations Job Accommodations]."<ref>[https://www.masscfids.org/disability Disability MASS CFIDS]</ref><ref>[http://www.womenshealth.gov/publications/our-publications/fact-sheet/chronic-fatigue-syndrome.html CFS Womenshealth.gov]</ref>

=== Blogs about navigating SSD process ===
*Resources for getting approved for disability include this [http://www.meaction.net/2017/04/17/the-sleepy-girl-guide-to-social-security-disability-u-s/ Guide to Social Security Disability for People with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome], available on the #MEAction website.

*[https://howtogeton.wordpress.com/2017/03/20/how-pattys-lawyer-never-told-her-the-most-important-thing-she-needed-to-know/ How Patty’s Lawyer Never Told Her What She Needed to Know]

*[https://howtogeton.wordpress.com/2017/05/01/sample-doctor-letters-for-disability/ Sample Doctor Letters for Disability]

==Patient charities==
<div style="column-count:2;-moz-column-count:2;-webkit-column-count:2">
*[[National Alliance for Myalgic Encephalomyelitis]]
*[[Massachusetts CFIDS/ME & FM Association]]
*[[May12.org]]
*[[#MEAction]]
*[[ME Advocacy]]
</div>

==Research==
*[[Institute of Medicine report]]
*[[NIH Post-Infectious ME/CFS Study]]
*[[:Category:USA researchers|USA researchers]]
*[[:Category:American research initiatives|American research initiatives]]

==Clinicians==
*California:{{PagesInCategory|California clinicians|mode=inline}}, [[Phillipe Bottello]], [[Kent Holtorf]], [[Open Medicine Institute]], [[Amy Yasko]], [[Holtorf Medical Group]]
*Colorado:{{PagesInCategory|Colorado clinicians|mode=inline}}
*Connecticut:{{PagesInCategory|Connecticut clinicians|mode=inline}}‎
*Florida:{{PagesInCategory|Florida clinicians|mode=inline}}, [[Daniel Dantini]]
*Georgia:
[[Holtorf Medical Group]]
*Hawaii:{{PagesInCategory|Hawaii clinicians|mode=inline}}
*Illinois:{{PagesInCategory|Illinois clinicians‎|mode=inline}}
*Iowa:{{PagesInCategory|Iowa clinicians‎|mode=inline}}
*Louisiana :{{PagesInCategory|Louisiana clinicians‎|mode=inline}}
*Maryland:{{PagesInCategory|Maryland clinicians‎|mode=inline}}, [[Alan Weiss]]
*Massachusetts:{{PagesInCategory|Massachusetts clinicians‎|mode=inline}}
*Michigan:{{PagesInCategory|Michigan clinicians|mode=inline}}‎
*Minnesota:{{PagesInCategory|Minnesota clinicians|mode=inline}}‎
*Mississippi:{{PagesInCategory|Mississippi clinicians|mode=inline}}‎
*Missouri:‎
[[Joseph Brewer]]
*Nevada:{{PagesInCategory|Nevada clinicians|mode=inline}}‎, [[Robert Fredericks]]
*New Jersey:{{PagesInCategory|New Jersey clinicians|mode=inline}}
*New York:{{PagesInCategory|New York clinicians|mode=inline}}
*North Carolina:{{PagesInCategory|North Carolina clinicians|mode=inline}}
*Pennsylvania: [[Joseph Garabedian]], [[Garabedian Clinic]], [[Holtorf Medical Group]]
*Texas:{{PagesInCategory|Texas clinicians|mode=inline}}
*Utah:{{PagesInCategory|Utah clinicians|mode=inline}}
*Virginia:{{PagesInCategory|Virginia clinicians|mode=inline}}
*Washington:{{PagesInCategory|Washington clinicians|mode=inline}}

==Notable patients==
[[Jennifer Brea]], [[Whitney Dafoe]], [[Ryan Prior]], [[Jennie Spotila]], [[Brian Vastag]], [[Hillary Johnson]], [[Julie Rehmeyer]], [[Leonard Jason]], [[Cort Johnson]], [[Deborah Waroff]], [[Beth Mazur]], [[Mary Schweitzer]], [[Steven Lubet]], [[Carol Head]], [[Erik Johnson]], [[Chardale Dotson Irvine]], [[Morgan Fairchild]], [[Jeannette Burmeister]], [[Toni Bernhard]], [[Robert Miller]], [[Laura Hillenbrand]]

==Proclamations==

There is a list of [[United States proclamations]].

==States==
*[[New Jersey Legislation]]

==Learn more==
*[[Forgotten Plague]] 2015 Documentary
*[[Invisible Illness - Stories of Chronic Fatigue Syndrome]] Youtube Mini-Doc

==See also==
*[[Blood donation]]
*[[Outbreaks]]
*[[Pathways to prevention report]] (P2P)
*[[Trans-NIH Working Group]]
*[[UNUM]]

==References==
<references>
<ref name="IOM2015MECFS">{{citation
| last1 = Institute of Medicine (USA)
| last2 = Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
| display-authors =
| title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
| date = 10 February 2015
| url = http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx
}}</ref>
<ref name="SandnesNO">{{citation
| author = NRK television, Norway
| title = A private clinic in Sandnes, Norway is treating ME with Rituximab
| type = video
| date = 27 Nov 2015
| url = https://www.youtube.com/watch?v=MfqJWRhgVx0
}}</ref>

</references>
[[Category:Countries]] [[Category:North America]] [[Category:United States]]