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== Researchers, scientists, doctors and professors == === Good === *"Eighteen months ago, after seeing thirteen different doctors and undergoing multiple tests and investigations, not only was I given a diagnosis of a condition that I didn’t know about or understand, it was an illness I didn’t believe in."<ref name="Muirhead2019">{{Citation | last = Muirhead | first = Nina | authorlink = Nina Muirhead | url =https://www.rcplondon.ac.uk/news/do-you-really-believe-me | title = Do you really believe in ME?|website=Royal College of Physicians | date = 2019}}</ref> ~ Dr [[Nina Muirhead]] *"The symptoms were more consistent with a brain tumour or multiple sclerosis. The reality is ME/CFS is a serious, heritable, neurological condition and I was shocked to discover subsequently that my grandmother had died from it aged 42."<ref name="Muirhead2019" /> ~ Dr [[Nina Muirhead]] *“I’m shocked that [[The Lancet]] published it…The [[PACE trial|PACE]] study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review.” He added, “Maybe The Lancet picked reviewers who agreed with the authors and raved about the paper, and the journal went along without digging into the details.”<ref>[http://www.meaction.net/2015/10/24/investigate-journalist-exposes-pace-trial/ #MEAction - Investigative Journalist Exposes PACE Trial - Ronald Davis]</ref> ~ Dr. [[Ronald Davis]] *"I have a wish and a dream that medical & research societies in US apologise to [[ME/CFS]] patients"<ref>[https://voat.co/v/CFS/comments/584997 Dr. Montoya of the ME/CFS Initiative, Stanford: "I have a wish and a dream that medical & research societies in US apologise to MECFS patients" - CMRC 2015 Dr. Montoya - 2015]</ref> ~ Dr. [[Jose Montoya]] *“PACE really attracts my attention because it’s so goddamned bad. It’s bad in its conduct, it’s bad in its reporting, and it’s fascinating that it’s going unchallenged. And it’s uncritically being passed on by journalists and the media with clear harm to patients.”<ref>[http://phoenixrising.me/archives/27787 James Coyne “lays waste” to PACE trial in Edinburgh - Phoenix Rising]</ref> ~ Professor [[James Coyne]] *"Less than half the doctors in this country know the name of this illness. I don't know another illness like that.'<ref>[https://www.youtube.com/watch?v=4J5CRGPvgl4 Canary in a Coal Mine You Tube 00:05]</ref> ~ Dr. [[Nancy Klimas]] *"Input from the patients is absolutely critical for any disease that you want to study."<ref>[http://www.meaction.net/2016/02/16/transcripts-and-slides-from-dr-naths-talk-on-nih-study/ Transcripts and Slides from Dr Nath’s talk on NIH study - #MEAction - CDC Grand Rounds Dr. Avindra Nath - 2/16/16]</ref> ~ Dr. [[Avindra Nath]] *"This illness is wicked."<ref>[https://www.youtube.com/watch?v=Qxb356oX6cI This illness is wicked - ME - Youtube 1:19 - Nancy Klimas]</ref> ~ Dr. [[Nancy Klimas]] *"The germ is nothing; the terrain is everything."<ref>[https://twitter.com/MBVanElzakker/status/453540676635201536 "The germ is nothing; the terrain is everything."]</ref> ~ [[Michael VanElzakker]] quoting Louis Pasteur in reference to the [[Vagus nerve infection hypothesis]] *"Fatigue is not a disease, and it's not even a symptom. Fatigue is an alarm system." @6:02<ref>[https://www.youtube.com/watch?v=wJB95m4FLa0 "Fatigue is not a disease, and its not even a symptom. Fatigue is an alarm system." @6:02]</ref> ~ Dr. [[Jarred Younger]] *"There is nothing that you hold dear that this illness cannot take from you. Nothing."<ref>[http://www.njmecfsa.org/2010/02/13/skeptical-of-skeptics/ "There is nothing that you hold dear that this illness cannot take from you. Nothing."]</ref> ~ Thomas L. English, MD *"Given what we have learned in the past eight years about this illness, it is intellectually embarrassing to suggest that ME is a psychological illness."<ref>[http://niceguidelines.blogspot.co.uk/2015/01/exercise-physiologist-prof-kellerit-is.html "Given what we have learned in the past eight years about this illness, it is intellectually embarrassing to suggest that ME is a psychological illness."]</ref> ~ [[Betsy Keller]], PhD (2015) *"Because the complaints of patients were so many and often seemingly bizarre, I often attempted to disclaim them as being real. But I learned that you patients were always right and I was always wrong. In studying this disease, one must always have an open mind. This disease teaches the physician to be humble."<ref>{{Cite web | date = Fall 2005 |archive-url = http://web.archive.org/web/20151022083413/http://www.oocities.org/sezar99q/MECFSInfectiousVenulitis.html|archive-date=2015-10-22|url-status=dead|quote=Because the complaints of patients were so many and often seemingly bizarre, I often attempted to disclaim them as being real. But I learned that you patients were always right and I was always wrong. In studying this disease, one must always have an open mind. This disease teaches the physician to be humble. | first = Erich | last = Ryll | authorlink = Erich Ryll | title = Infectious Venulitis | url = http://www.oocities.org/sezar99q/MECFSInfectiousVenulitis.html}}</ref> ~ Dr. [[Erich Ryll]] *"Ultimately the best way to prevent suicide in ME/CFS will be to find effective disease-modifying treatments or cures for it." <ref>[http://wames.org.uk/cms-english/2016/05/chu-says-suicide-in-mecfs-not-always-linked-to-depression-and-anxiety/ "Ultimately the best way to prevent suicide in ME/CFS will be to find effective disease-modifying treatments or cures for it."]</ref> ~ Dr. [[Lily Chu]] *“(CFS patients) feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” ~ Prof. [[Mark Loveless]], Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University<ref>[http://www.whitneydafoe.com/news/ “(CFS patients) feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.”]</ref> *"My H.I.V. patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or care for their families. I split my clinical time between the two illnesses [AIDS and CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million (to 4 million) people in the United States alone, has had a small fraction of the research dollars directed towards it.” ~ Dr. [[Nancy Klimas]], AIDS and CFS researcher and clinician, University of Miami<ref>[http://www.whitneydafoe.com/news/ “My H.I.V. patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or care for their families. I split my clinical time between the two illnesses (AIDS and CFS), and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million (to 4 million) people in the United States alone, has had a small fraction of the research dollars directed towards it.”]</ref> *"Subjective measures of sick people before & after they are repeatedly told, "You're not sick" is a social psych study, not a clinical trial."<ref>[https://twitter.com/postersandme/status/766265142795526144/photo/1 "Subjective measures of sick people before & after they are repeatedly told, "You're not sick" is a social psych study, not a clinical trial."]</ref> ~ [[Michael VanElzakker]] on the [[PACE trial]] *"What #PACEtrial called "[[Cognitive behavioral therapy|CBT]]" is not normal CBT. Cancer patients see CBT therapists all the time and are not told, 'you're not really sick.'"<ref>[https://twitter.com/MBVanElzakker/status/765678606425198592 "What #PACEtrial called "CBT" is not normal CBT. Cancer patients see CBT therapists all the time and are not told, 'you're not really sick.'"]</ref> ~ [[Michael VanElzakker]] *"This is not an argument with psychiatry. Mental and physical illness are equally real and horrible. As with any long-term illness, some people with ME/CFS will develop comorbid depression and other mental health problems where [[CBT]] can be of help alongside good quality general management. The argument here is with a flawed model of causation assuming efficacy for [[CBT]] and [[GET]] while taking no significant account of varying clinical presentations and disease pathways." ~ Dr [[Charles Shepherd]]<ref name="Shepherd2017">{{cite journal | last = Shepherd | first = Charles B | author-link = Charles Shepherd | date = 2017 | title=PACE trial claims for recovery in myalgic encephalomyelitis/chronic fatigue syndrome – true or false? It’s time for an independent review of the methodology and results.|journal=Journal of Health Psychology|doi=10.1177/1359105317703786}}</ref> *"[T]he time has come for doctors and scientists to apologise for the very neglectful way in which ME has been researched and treated over the past 60 years.<br />Doctors need to start listening to their patients and there must now be increased investment in biomedical research to gain a better understanding of the disease process and to develop treatments that these patients desperately need."<ref name="Tele2015" /> - Dr [[Charles Shepherd]] *"I have a wish and a dream that medical and scientific societies will apologise to their ME patients"<ref name="Tele2015">{{Cite web|url =https://meassociation.org.uk/2015/12/its-time-for-doctors-to-apologise-to-their-me-patients-dr-charles-shepherd-in-the-daily-telegraph-7-december-2015/ | date = Dec 7, 2015 | last = Shepherd | first = Charles | authorlink = Charles Shepherd | title = It's time for doctors to apologise to their ME patients|publisher=The Telegraph|access-date=Oct 31, 2020 | website = |archive-url=|archive-date=|url-status=}}</ref><ref>{{Cite web|url =https://www.telegraph.co.uk/news/health/12033810/Its-time-for-doctors-to-apologise-to-their-ME-patients.html | date = Dec 7, 2015 | last = Shepherd | first = Charles | authorlink = Charles Shepherd | title = It's time for doctors to apologise to their ME patients|publisher=The Telegraph}}</ref> ~ Dr [[Jose Montoya]], 2015 *“ME is in the blood, not between the ears.”<ref>{{Cite web|url=https://www.meaction.net/2016/10/10/attend-the-iacfsme-conference/|title=Attend the IACFS/ME conference this month|last=S|first=Jaime|date=2016-10-10|website=#MEAction Network|language=en-US|access-date=2023-05-06}}</ref> Dr. Olav Mella (Norway) Day 2 of the IACFS/ME 12th BIENNIAL CONFERENCE === Bad === *"I have previously made it clear that I think that [[PACE trial|PACE]] was a good trial; I once described it as a thing of beauty."<ref>[http://andrewgelman.com/2016/01/13/pro-pace/ Pro-PACE, anti-PACE - Statistical Modeling, Causal Inference, and Social Science]</ref> ~ Professor [[Simon Wessely]] *"The [[PACE trial]] paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying [[CFS/ME]]"<ref>{{Cite web | url = http://www.forward-me.org.uk/Reports/White%20to%20Lancet%20re%20Hooper%20complaint%20(2).pdf | title=Response to the complaint to The Lancet of March 2011 | last = White | first = PeterD. | authorlink = Peter White | last2 = KA | first2 = Goldsmith | authorlink2 = Kimberley Goldsmith | date = 2011 | website = [[Forward-ME]]|archive-url=|archive-date=|url-status=|access-date=|quote=The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME | last3 = Johnson | first3 = AL|others= | authorlink3 = Anthony Johnson | last4 = Walwyn | first4 = R | authorlink4 = Rebecca Walwyn | last5 = Baber | first5 = HL | authorlink5 = Hannah Baber | last6 = Chalder | first6 = T | authorlink6 = Trudie Chalder | last7 = Sharpe | first7 = M | authorlink7 = Michael Sharpe | last8 = on behalf of all the co-authors}}</ref>- PeterD. White et al, on behalf of the PACE trial authors. *"And so when you find people with thing like [[fibromyalgia]], you’re either going to be sick, bad, or weak – and the idea is really to find a fourth way – to realize that these atypical things are just a range of normal, that you’re not sick, bad, or weak, that you’re just dealing with the difficulties of just being a human."<ref>[http://www.meaction.net/2016/02/20/nih-lead-clinical-investigator-thinks-cfs-is-psychosomatic/ #MEAction Transcript - Video Interview with Dr. Brian Walitt]</ref> ~ Dr. [[Brian Walitt]] *"If [ME/CFS] is all in your head, it's only because your head is part of your body."<ref>[http://www.medpagetoday.com/Neurology/GeneralNeurology/56772 NIH Gears Up for First-Ever Chronic Fatigue Study Patients' advocates share concerns about trial protocol, bias MedPage Today - The Gupta Guide - Shannon Firth]</ref> ~ Dr. [[Brian Walitt]] === Ugly === * "...many of the activists trying to have scientific papers they don’t like retracted are not patients. Patients would surely be too ill to produce so many complaints and FOI requests to journals, funders and universities." ~ Prof. [[Michael Sharpe]]<ref>{{Cite web | url = http://www.virology.ws/2018/11/08/trial-by-error-an-australian-exchange-with-professor-sharpe/ | title = Trial By Error: An Australian Exchange with Professor Sharpe|website=[[Virology blog]]|language=en-US|access-date=2018-11-28}}</ref> *"With these people, it isn't that they don't want to get better but if the price is recognising the psychiatric basis of the condition, they'd rather not get better". ~ Sir [[Simon Wessely]]<ref name="dangersofresearch">{{Cite journal | last = Hawkes | first = Nigel | authorlink = | date = Jun 22, 2011 | title = The dangers of research into CFS/ME | url = https://www.bmj.com/bmj/section-pdf/187262?path=/bmj/342/7812/Feature.full.pdf | journal=[[BMJ]]|volume=342|issue=d3780|pages=1392-1384|quote=|via=|doi=10.1136/bmj.d3780}}</ref> *"... there is sort of feeling that the patient should be grateful and follow your advice, and in actual fact, what happens is the patient is quite resistant and there is this thing like you know, “The bastards don’t want to get better..."<ref>{{Cite journal | last = Peters | first = Sarah | authorlink = Sarah Peters | last2 = Wearden | first2 = Alison | authorlink2 = Alison Wearden | last3 = Morriss | first3 = Richard | authorlink3 = Richard Morriss | last4 = Dowrick | first4 = Christopher F | authorlink4 = Christopher Dowrick | last5 = Lovell | first5 = Karina | authorlink5 = Karina Lovell | last6 = Brooks | first6 = Joanna | authorlink6 = Joanna Brooks | last7 = Cahill | first7 = Greg | authorlink7 = Greg Cahill | last8 = Chew-Graham | first8 = Carolyn | authorlink8 = Carolyn Chew-Graham | date = Dec 2011 | title = Challenges of nurse delivery of psychological interventions for long-term conditions in primary care: a qualitative exploration of the case of chronic fatigue syndrome/myalgic encephalitis | url = http://implementationscience.biomedcentral.com/articles/10.1186/1748-5908-6-132|journal=Implementation Science|language=en|volume=6|issue=1|pages=|doi=10.1186/1748-5908-6-132|issn=1748-5908|pmc=3259041|pmid=22192566|quote=|via=}}</ref> ~ Nurse supervisor, [[FINE trial]]
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