MEpedia - User contributions [en]

MEpedia:Suggested tasks

2018-08-04T18:46:26Z

Ulli:Moved iom quote to completed section

This page lists suggestions for improvements or additions to MEpedia.

PLEASE if at all possible, create/edit a relevant article yourself (see [[How to contribute]]), as the editors of MEpedia are all sick and working hard to improve the content in particular areas - we need your help! But if you REALLY can't make the improvement yourself, click '''Edit''' below (next to the heading "Suggestions"), add your suggestion to the end, and then click '''Save page'''.

Please keep your suggestion as brief as possible (usually one line) and be sure to include web links to sources/citations (e.g., the published study, a source for a quote, etc.).

If you merely wish to keep track of your own goals on site (but for discoverability by others), you can instead add a subpage to your user page (add a "/" and subpage, e.g., [[User:Brettz9/To-dos]]) and then add the code <nowiki>[[Category:User to-dos]]</nowiki> to your subpage article. It will then show up at [[:Category:User to-dos]].

==Priority pages for expansion==
'''Science:''' [[Citric acid cycle]], [[Mitochondria]], [[Exercise]], [[Natural killer cell]], [[Central nervous system]], [[Nitric oxide hypothesis]], [[Brain]], [[Brain imaging]], [[Microbiome hypothesis]], [[Primer_for_journalists#Prognosis|Primer for journalists (''Prognosis'' section)]], [[PACE trial]]

=Suggestions - High Priority=
'''When a task is complete move it to the COMPLETED section at the bottom of the page'''

*[[Female predominant diseases]]: complete this table of gender ratio + prevalence for chronic illness: [[Female predominant diseases#List of diseases]] (will likely be used in advocacy and outreach efforts)
*Add photos of ALL the May (and Belfast in June) Millions Missing protests to the MM page http://me-pedia.org/wiki/Millions_Missing_protests
*Create a page for Lyrica/Pregabalin and add this talk by Alan Light https://www.youtube.com/watch?v=S3CmUJyVBbQ&feature=youtu.be&t=3m1s
*Make sure this study on relative quality of life is documented and cited, especially the chart http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421
*Add the Stats.org editorial & 7,000 word criticism to the PACE page :
**Make sure that all the specific significant criticisms they make are covered in the Criticism section if not already
**(''IN PROGRESS'') Include (and explain) this chart from article https://twitter.com/Katiissick/status/713080268756619264
*Categorize all uncategorized pages (list of uncategorized pages here: http://me-pedia.org/wiki/Special:UncategorizedPages)
* Add a [[Wikipedia:Portal:Contents/Portals|portal]] on Wikipedia for CFS or umbrella (e.g., auto-immune-related conditions), bringing more awareness and contributions on Wikipedia (also through subpages, such as "B cells and CFS"), and which we could reference here

=Suggestions - Five Minute Tasks=
'''When a task is complete move it to the COMPLETED section at the bottom of the page'''

*Add https://grants.nih.gov/grants/guide/notice-files/NOT-AI-16-046.html
*Add http://www.healthrising.org/blog/2016/04/06/immune-system-fatigue-brain-me-cfs-fibromyalia/
*Make sure MEpedia covers the GETSET study https://spoonseeker.com/2016/05/23/a-few-notes-on-getset/
*Add https://twitter.com/Firestormmer/status/734650703847784449
*Add http://www.freezepage.com/1374761286EFCHIYENBE
*Add http://www.healthrising.org/blog/2016/05/19/25-disease-chronic-fatigue-syndrome-mecfs-unique-many-people-homebound/
*Add http://www.meaction.net/2016/05/18/uk-plans-worlds-biggest-biomedical-mecfs-study/
*Find source and add https://twitter.com/Firestormmer/status/733001836186238976
*Add to ketogenic diet page under exogenous ketones https://ketosource.co.uk/exogenous-ketone-supplements-review/
*Add http://www.meassociation.org.uk/2016/05/remember-shine-the-spotlight-on-mecfs-research-and-management-dr-shepherd-recalls-highlights-of-burgess-hill-meeting-14-may-2016/
*Add http://medicalxpress.com/news/2016-05-chronic-fatigue-patients-suppress-emotions.html
*Add to ritux/b-cell pages http://forums.phoenixrising.me/index.php?threads/extended-b-cell-phenotype-in-patients-with-me-cfs-a-cross-sectional-study.41743/#post-674305
*Add http://www.meassociation.org.uk/2016/05/me-associations-contributions-towards-mitochondrial-muscle-research-in-mecfs-17-may-2016/
*Add new page for MEGA UK study https://www.actionforme.org.uk/news/mega-new-me-research-project/#.Vzn9sbBp4gk.twitter
*Add http://www.meaction.net/2016/05/15/brain-connectivity-problems-causing-signalling-problems/
*Add details of new Crawley study to her page, and mention AfME funding it, also mention that on AfME page http://forums.phoenixrising.me/index.php?threads/esther-crawley-paediatric-prevalence-study-funded-by-action-for-me.44622/#post-724857
*Add to MAGENTA page http://apps.who.int/trialsearch/Trial2.aspx?TrialID=ISRCTN23962803
*Add http://www.theestablishment.co/2016/05/13/the-hidden-battle-for-the-rights-of-chronic-fatigue-syndrome-sufferers/
*Add https://cfsremission.wordpress.com/2016/05/14/cortisol-cfs-and-microbiome/
*Add http://www.meassociation.org.uk/2016/05/ive-suffered-with-me-since-i-was-eight-and-the-way-im-treated-hasnt-changed-in-30-years-the-independent-12-may-2016/
*Add https://www.ncbi.nlm.nih.gov/pubmed/27165859
*Add http://phoenixrising.me/archives/28077
*Add http://www.meaction.net/2016/05/11/fluge-and-mellas-search-for-genetic-markers/
*Add http://www.meaction.net/2016/05/09/study-housebound-versus-nonhousebound-patients-with-mecfs/
*Add to Ritux page https://twitter.com/Firestormmer/status/730399214686056448
*Add https://selfhacked.com/2016/05/11/21-proven-science-based-reasons-magnesium-amazing-including-drawbacks/
*Add http://scienmag.com/further-clues-in-the-fight-against-chronic-fatigue-syndrome/
*Add http://www.eurekalert.org/pub_releases/2016-05/bawh-etg050616.php
*Add https://www.ncbi.nlm.nih.gov/pubmed/9771781
*Add http://www.meaction.net/2016/05/09/study-housebound-versus-nonhousebound-patients-with-mecfs/
*Add http://www.healthrising.org/blog/2016/05/09/activated-mast-cell-activation-syndrome-mecfsfm/
*Add https://www.ncbi.nlm.nih.gov/pubmed/9745235
*Add http://healthy-magazines.com/chronic-fatigue-syndrome-mecfs-uncovering-mystery/
*Add https://www.researchgate.net/publication/283476227_Psychogenic_explanations_of_physical_illness_Time_to_examine_the_evidence
*Add http://chi.sagepub.com/content/early/2016/04/22/1742395316644770.abstract
*Add http://translational-medicine.biomedcentral.com/articles/10.1186/s12967-016-0873-1
*Add http://www.meaction.net/2016/05/05/progressive-brain-changes-in-patients-with-chronic-fatigue-syndrome-are-our-brains-starved-of-oxygen/
*Add http://www.meactionuk.org.uk/Response-to-Dr-Stuart-Spencer.htm
*Add https://selfhacked.com/2016/05/03/mmp9/
*Add http://forums.phoenixrising.me/index.php?threads/norwegian-professor-in-biology-supportive-of-pace.44177/page-5#post-721234
*Add to NIH page http://www.occupycfs.com/2016/05/03/staying-the-course-to-where/
*Add http://www.huffingtonpost.com/-stephanie-land/patients-with-chronic-ill_b_9818754.html
*Add https://www.ncbi.nlm.nih.gov/pubmed/9292244
*Add https://tipsforme.wordpress.com/2015/10/19/resource-walking-problems/?utm_content=bufferb75ff&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer
*Add https://www.researchgate.net/publication/11813965_What_is_Chronic_Fatigue_Syndrome_Heterogeneity_Within_an_International_Multicentre_Study
*Add http://www.meaction.net/2016/05/01/patients-and-professor-publish-biomedical-mecfs-paper/
*Add https://www.ncbi.nlm.nih.gov/pubmed/15784798
*Add http://www.healthrising.org/blog/2016/04/24/nath-nih-chronic-fatigue-syndrome-study-push-back/
*Add https://corsius.wordpress.com/2016/04/23/biased-research-on-cfs/
*Add http://www.itv.com/news/tyne-tees/update/2013-05-08/teenager-with-m-e-says-shes-accused-of-exaggerating-her-illness/
*Add http://www.healthrising.org/forums/threads/can-simple-blood-tests-help-to-identify-chronic-fatigue-syndrome-me-cfs.4228/
*Add http://chi.sagepub.com/content/early/2016/04/22/1742395316644770.long
*Add http://onlinelibrary.wiley.com/doi/10.1002/jmri.25283/full
*Add https://www.ncbi.nlm.nih.gov/pubmed/9018051
*Add http://www.tandfonline.com/doi/full/10.1080/21641846.2016.1160598
*Add http://www.meaction.net/2016/04/27/nih-study-will-bring-new-technology-and-expertise-to-mecfs/
*Add https://www.ncbi.nlm.nih.gov/pubmed/27114901
*
*Add https://www.ncbi.nlm.nih.gov/pubmed/27116645
*Add https://meagenda.wordpress.com/2009/10/27/dr-nigel-speight-resigns-from-children-and-young-persons-organisation-ayme/
*Add to MS/Ritux pages http://www.gene.com/media/press-releases/14609/2015-10-08/genentechs-ocrelizumab-first-investigati
*Add http://translational-medicine.biomedcentral.com/articles/10.1186/s12967-016-0859-z
*Add http://www.mdpi.com/2075-4418/6/2/16
*Add https://www.ncbi.nlm.nih.gov/pubmed/27095328
*Add http://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleading-research-a_b_9726490.html
*Add https://www.ncbi.nlm.nih.gov/pmc/articles/PMC486360/?page=8
*Add https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2350897/pdf/bmj00539-0053d.pdf
*Add http://bmcinfectdis.biomedcentral.com/articles/10.1186/s12879-016-1497-z
*Add https://twitter.com/LouCorsius/status/719993266876391424/photo/1
*Make sure this article is linked to on the ME page, maybe elsewhere too https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1604957/pdf/brmedj00128-0006b.pdf
*Add this study on cytokines to the cytokines page (and pages for the specific ones affected) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC368231/pdf/cdli00002-0112.pdf
*Add this 1994 article to the Chronic Fatigue Syndrome page https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1615008/pdf/amjph00453-0124.pdf
*Add this article to the e-coli page https://cfsremission.wordpress.com/2016/03/29/the-care-and-feeding-of-e-coli-probiotics/
*Add this article to the autoimmunity page http://cellfatigue.blogspot.co.uk/2016/03/autoimmunity-and-self-tolerance-in-mecfs.html
*Make sure this study is mentioned on the ketogenic diet page https://www.ncbi.nlm.nih.gov/pubmed/24847102
*Create a basic outline page about this UK ME support group http://www.mesupport.co.uk/index.php?page=anniversary-statement You can copy-paste an outline from the outlines page http://me-pedia.org/wiki/MEpedia_article_outlines#Patient_Group.2FCharity
*Add new simple protocol article to Ken Lassesen's hypothesis page (probiotics) https://cfsremission.wordpress.com/2016/03/31/best-two-probiotics-to-start-probiotic-approach/ and also add this https://cfsremission.wordpress.com/2016/03/27/pictures-of-cfs/
*Add this interesting anecdote to the MS page http://www.cortjohnson.org/forums/threads/a-chronic-fatigue-syndrome-pots-patient-responds-to-a-multiple-sclerosis-drug-what-does-it-mean.4028/
*Make sure this video about Klimas' gene study is included on her page, and wherever the study is covered (perhaps its own page needed?) https://sharkmedia.nova.edu/media/ME+CFS+Genes+Study/1_06vh90p0
*Add 2006 announcement of fatigue service at Barts UK led by Peter White to White's page, and Shirley Conran page and Maurice Murphy pages. https://web.archive.org/web/20070522194545/http://www.bartsandthelondon.nhs.uk/formedia/press/release.asp?id=1216
*Add ME Advocacy article to NIH study page under Learn more http://www.meadvocacy.org/nih_sidesteps_critical_problems_with_the_me_cfs_study
*Add Cort article to PACE page, Learn more section http://www.cortjohnson.org/forums/threads/pace-trial-gets-most-devastating-critique-yet.4003/#post-15641
*Add to MRI pages https://www.ncbi.nlm.nih.gov/pubmed/8141020
*Add Guardian article to list of articles about ME http://www.theguardian.com/lifeandstyle/2016/apr/04/chronic-fatigue-syndrome-cfs-taken-seriously#comment-71789644 Maybe also to PACE page, and pages for Montoya, Hornig & Dimmock.
*Add study https://www.ncbi.nlm.nih.gov/pubmed/1282370
*Add study https://www.ncbi.nlm.nih.gov/pubmed/1446478
*Add study https://www.ncbi.nlm.nih.gov/pubmed/1337562
*Add NK study https://www.ncbi.nlm.nih.gov/pubmed/1287238
*Add this article to Cort Johnson page http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=28684
*Add http://carersfight.blogspot.co.uk/2015/12/the-pace-trial-concerns-raised-by.html
*Add https://m.facebook.com/photo.php?fbid=955820941179099&id=100002536068526&set=a.274636879297512.61710.100002536068526&source=57
*Add https://twitter.com/senseaboutsci/status/683616829923831808?s=09
*Add https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome_treatment
*Add http://simmaronresearch.com/2015/12/ian-lipkin-three-to-five-years-to-solve-chronic-fatigue-syndrome-mecfs/
*Add http://www.meassociation.org.uk/2015/12/plenty-of-new-blood-and-enthusiasm-at-the-uk-mecfs-biobank-23-december-2015/
*Add https://pubpeer.com/publications/22870204
*Add http://my.meaction.net/local_chapters/mepedia/forum_threads/4224?token=9408280d9eecf4e9b52677e3e5d6acd6e397162f#message_16831
*Add http://my.meaction.net/local_chapters/mepedia/forum_threads/4116?token=9408280d9eecf4e9b52677e3e5d6acd6e397162f#message_16842
*Add http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf
*Add http://www.mrijournal.com/article/S0730-725X(15)00303-3/abstract
*Add https://dl.dropboxusercontent.com/u/23608059/PDW-re-theft.pdf
*Add https://twitter.com/LetsDoIt4ME/status/678983105865195520/photo/1
*Add https://twitter.com/bengoldacre/status/679228319234195456
*Add http://forums.phoenixrising.me/index.php?threads/peter-white-barts-comments-on-draft-nice-guidelines-insight-into-their-views.1239/
*Add http://www.investinme.org/InfoCentre-vaccines-popup-1.htm
*Add http://articles.latimes.com/1986-06-07/news/mn-9956_1_lake-tahoe
*Add https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf
*Add http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD011040/full
*Add http://www.cortjohnson.org/forums/threads/severely-ill-chronic-fatigue-syndrome-me-cfs-study-expanded.3432/
*Add https://twitter.com/postersandme/status/677469604348870657/photo/1
*Add http://www.qmul.ac.uk/media/news/items/smd/81841.html
*Add https://en.wikipedia.org/wiki/Controversies_related_to_chronic_fatigue_syndrome
*Add https://twitter.com/TomKindlon/status/677173627532402688
*Add http://www.investinme.org/Article-419%20Professor%20Hooper%20Response%20to%20The%20Observer%20Newspaper%20Aug2011.htmhttp://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx
*Add to Walitt and NIH study pages http://thoughtsaboutme.com/2016/03/21/keep-an-eye-on-your-walitt-nih-study-poses-dramatic-risk-to-long-term-disability-benefits/
*Article to add to Fibromyalgia, Younger and LDN pages http://nationalpainreport.com/fibromyalgia-can-we-crack-the-code-and-put-the-patient-first-8829846.html
*Add this article to Brian Walitt page http://www.cortjohnson.org/forums/threads/brian-walitt-and-the-psychosomaticism-of-fibromyalgia-another-look.3915/
*Make sure this Lightning Process study is on the LP page https://www.ncbi.nlm.nih.gov/pubmed/26983138?dopt=Abstract
*Add a link to this discussion between Elizabeth Dowsett & P. D. Welsby to her page https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2399326/pdf/postmedj00061-0066.pdf
*Add this article (and the study referred to) to Leonard Jason's page (maybe others?) http://www.meaction.net/2016/03/18/study-says-scientists-must-agree-on-classifying-patients/
*Make sure the Ramsay-style criteria created my Shepherd, Goudsmit & Howes is linked to on its own page, and those of the authors http://www.axfordsabode.org.uk/me/mecrit2014.htm
*Pick a page about a person (patient, doctor, researcher, journalist etc) and add a photo to their page.

*Add to NIH page http://www.healthrising.org/blog/2016/05/26/proposal-vastly-increase-funding-mecfs-nih-passes-first-test/
*Make sure this crucial chart of ME quality of life and related study are included and study referenced http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421

*Add to NAC page https://selfhacked.com/2016/05/27/top-25-science-based-health-benefits-n-acetyl-cysteine-nac/
*Add to mitochondria and Eric Gordon pages http://www.gordonmedical.com/unravelling-complex-chronic-illness/gordon-medical-research-center-now-funding-replication-study-on-cfidsme-findings/
*Add to fatigue page http://www.healthrising.org/blog/2016/05/31/fatigue-japanese-way/
*Make sure we have a page on the GETSET trial http://forums.phoenixrising.me/index.php?threads/getset-graded-exercise-therapy-guided-self-help-treatment-getset.44749/
*Make sure the ME Association page link to purple book gets to the latest one http://www.meassociation.org.uk/2016/06/the-eight-edition-of-our-clinical-and-research-masterwork-is-published-today-1-june-2016/
*Add to NK cell and b cell pages and key author pages http://forums.phoenixrising.me/index.php?threads/novel-identification-and-characterisation-of-transient-receptor-potential-melastatin-3-ion-channels.44932/
*Add to Davis page and severely ill study page http://www.meaction.net/2016/06/04/davis-at-invest-in-me-new-severe-patients-data/
*Add to page on Fisetin https://selfhacked.com/2016/06/04/15-science-based-health-benefits-fisetin-1-favorite/
*Add to Davis and mitochondria and severely ill study pages http://www.meaction.net/2016/06/04/ron-davis-errors-metabolism/
*Add to Weardon page, maybe others http://bmcfampract.biomedcentral.com/articles/10.1186/s12875-016-0453-8
*Add to Davis page and list of news articles https://www.thejournal.ie/readme/me-invisible-illness-2792636-Jun2016/
*Add to microbiome page and Simon Carding page https://www.ncbi.nlm.nih.gov/pubmed/27275835
*Add to cognitive dynsfunction page http://www.healthrising.org/blog/2016/06/12/cognition-chronic-fatigue-syndrome-key-findings/
*Add White study http://www.jpsychores.com/article/S0022-3999(16)30327-0/abstract
*Add to vision page http://www.meresearch.org.uk/news/vision-thesis/
*Add to NIH page http://www.occupycfs.com/2016/06/14/responding-to-the-nih-rfi/
*Add to chronic fatigue page, maybe also primer(s)? http://www.self.com/wellness/2016/06/the-difference-between-chronic-fatigue-syndrome-and-extreme-tiredness/
*Add to OMF and/or severely ill study page http://www.openmedicinefoundation.org/expanded-mecfs-metabolomics-study/
*Add to mtDNA page http://www.nytimes.com/2016/06/24/science/mitochondrial-dna-mothers.html
*This appears to be Kew UK Gov archive, add to relevant page for easy access https://valerieeliotsmith.files.wordpress.com/2015/01/natarchbn141dss.pdf

=Suggestions=
'''When a task is complete move it to the COMPLETED section at the bottom of the page'''

*Add Margaret Williams article about PACE criticism http://www.investinme.org/IIME-Newslet-1603-01.htm
*Add this UK TV segment about a patient https://www.youtube.com/watch?v=I8lsRlUhRps&feature=youtu.be Where? Possibly a new page listing TV segments, or a page for each segment, linking to all those featured?
*Pick a member of the OMF advisory board, and make sure we have a page for them giving a summary of who they are. http://me-pedia.org/wiki/Open_Medicine_Foundation
*Read Osler's Web and document key events/people/documents it refers to, linking to the book for readers to learn more.(please note the page# where she discusses the change in fingerprints, add here http://me-pedia.org/wiki/Fingerprint_change)
*Read Mary Dimmock's "Thirty Years of Disdain" and ensure MEpedia covers the key events/people/resources referred to, with citations.
*Read this summary of ME/CFS research, add details to all relevant pages http://paradigmchange.me/me-abnormalities/

==Implement acronyms as a category==
http://me-pedia.org/wiki/List_of_acronyms

:I don't think this is necessary? The current abbreviations page serves its function perfectly, as it is alphabetized, linked and has explanatory notes. A category seems like an unnecessary duplication. --[[User:Samsara|Samsara]] ([[User talk:Samsara|talk]]) 02:18, 3 November 2016 (PDT)

==Historical articles==
Add these articles:

*http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1584694/pdf/canmedaj00332-0046.pdf
*http://jama.jamanetwork.com/article.aspx?articleid=311962
*http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1277260/
*https://books.google.com/books?id=Yoi11TCZSE8C&pg=PA21&lpg=PA21&dq=Lewis+effort+syndrome+mottle&source=bl&ots=FX5vL0oafQ&sig=oGydqO_vAY5zS6A9JEGPxR6vpBI&hl=en&sa=X&ei=rG46VbzsKcWHsQSTlYCgDg&ved=0CC4Q6AEwAg#v=onepage&q=Lewis%20effort%20syndrome%20mottle&f=false
*https://books.google.com/books?id=jtcCAAAAYAAJ&pg=PA76&lpg=PA76&dq=cardiac+phase+of+the+war+neuroses&source=bl&ots=-EvPo4rQJg&sig=wbuUYp39tiPaA4sLRiTHNsAJwWM&hl=en&sa=X&ei=yLY6VbHAMuKIsQSQ84CgAg&ved=0CCoQ6AEwBA#v=onepage&q=cardiac%20phase%20of%20the%20war%20neuroses&f=false
*https://books.google.com/books?id=1AVHAQAAMAAJ&pg=PA1919&lpg=PA1919&dq=irritable+heart+of+soldiers+dacosta+1871&source=bl&ots=yeXur4uyW0&sig=8boB-L18PKPSpqVJAyk2LO9pC9w&hl=en&sa=X&ei=0oE6VZCQL-SwsAT584HQDQ&ved=0CEoQ6AEwCA#v=onepage&q=irritable%20heart%20of%20soldiers%20dacosta%201871&f=false

There are also a very large number of resources here that need to be added: http://forums.phoenixrising.me/index.php?threads/historical-me-research-literature-and-related-information.10282/

==Stem cell treatments==

Info such as at http://www.bbc.com/news/health-35065905 and http://www.prohealth.com/library/showarticle.cfm?libid=14735 would be interesting to have. [[User:Brettz9|Brettz9]] ([[User talk:Brettz9|talk]]) 11:37, 19 January 2016 (PST)

==Treatments==

A great rundown of infections related to ME/CFS and potential treatments. Link can be added to "Further reading" on the [[List of treatments]] page. Information here can also be included on the appropriate pages for specific infectious agents and specific antivirals. https://sites.google.com/site/cfstestingandtreatmentroadmap/ --[[User:JenB|JenB]] ([[User talk:JenB|talk]]) 09:24, 11 December 2015 (PST)

==Basic biochemistry==

* Cross reference with CFS research to all [[Vitamin]] and [[Mineral]] pages Also [[choline]] and [[essential fatty acid]] --[[User:JenB|JenB]] ([[User talk:JenB|talk]]) 11:47, 10 December 2015 (PST)

==Infectious disease==

New study shows that EBV can infect neurons. Apparently we didn't know this before! http://www.meaction.net/2015/12/10/study-shows-epstein-barr-virus-can-infect-human-neurons/ Consider updating the [[Herpesvirus]] page with any relevant information. I think it would be really great to expand the EBV (and really all the herpesvirus pages) with information on the association of these viruses with both [[CFS]] and other diseases, especially those involving [[B cell]]s and the possible infection of nervous tissue. --[[User:JenB|JenB]] ([[User talk:JenB|talk]]) 08:38, 16 March 2016 (PDT)

=Completed=
'''When a task is complete move it HERE'''

*Merge the two history pages together: http://me-pedia.org/wiki/History_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome and http://me-pedia.org/wiki/Important_events_timeline
*Add quote to IOM report page and patient mental health pages <nowiki>https://twitter.com/ollie72/status/724948447024009217?cn=cmV0d2VldA%3D%3D&refsrc=email</nowiki>
*Add https://www.ncbi.nlm.nih.gov/pubmed/27088131
*Add https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2170049/
*Source this chart and add to MEpedia https://twitter.com/mjdesignart/status/732061326420250626
*Add https://www.ncbi.nlm.nih.gov/pubmed/15157711
*Add http://www.meaction.net/2016/05/17/uk-mecfs-biobank-opens-for-business/
*Make sure this study and a copy of the Guardian article are in MEpedia https://twitter.com/JaneCColby/status/734460704607080448 [Note: no digital record of 1997 Guardian article; original journal article cited in Guardian and pdf included under authors and journal pages]
* Create a page for "Cell danger response", link to Wikipedia, link to our mitochondria page (both ways) and add this https://www.ncbi.nlm.nih.gov/pubmed/23981537 [Note: there is no Wikipedia page for cell danger response]
*Add http://trialsjournal.biomedcentral.com/articles/10.1186/1745-6215-14-415
*Add https://grants.nih.gov/grants/guide/notice-files/NOT-NS-16-024.html
*Add https://www.ncbi.nlm.nih.gov/pubmed/8809350
*Add recent White paper on attitudes to treatment http://www.ncbi.nlm.nih.gov/pubmed/27521650
*Fix VanElzakker quote references: http://twitter.com/MBVanElzakker/status/770364493415219200 and http://twitter.com/MBVanElzakker/status/772885740669767680 and http://twitter.com/MBVanElzakker/status/765686260195332096 [Note: These quotes were opted not to be included because better quotes were found.] -- [[User:Kmdenmark|Kmdenmark]]
*Add https://www.ncbi.nlm.nih.gov/pubmed/27118537
*Add https://www.ncbi.nlm.nih.gov/pubmed/10189612
*Add to ME/CFS page, and also consider adding to one or more primers http://www.openmedicinefoundation.org/what-is-mecfs/
*Add to author pages, and a topic page for drugs https://www.ncbi.nlm.nih.gov/pubmed/27229907
*Add http://www.openmedicinefoundation.org/2016/05/17/new-metabolomics-study-begins/ (broken link)
*Add http://www.meaction.net/2016/05/19/dr-hornigs-talk-in-sweden-now-available/
*Add http://www.sheknows.com/health-and-wellness/articles/1119407/chronic-fatigue-syndrome
*Add https://www.ncbi.nlm.nih.gov/pubmed/27177188
*Add https://www.ncbi.nlm.nih.gov/pubmed/10189122
*Add https://www.ncbi.nlm.nih.gov/pubmed/24510231
*Add http://www.jacobspublishers.com/images/Physiology/J_J_Physiology_1_2_007.pdf
*Add https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4482824/
*Add Bateman talk slides http://www.fcclinic.com/SLEEP%20research%20CDC%20talk%20090914%20final.pdf
*Add to LDN page http://scienmag.com/revamped-ldn-site-launched-biggest-patient-initiated-drug-discovery-program-in-history/
*Add https://www.ncbi.nlm.nih.gov/pubmed/10545311
*Add to page on cell danger response https://www.ncbi.nlm.nih.gov/pubmed/23981537
*Add http://m.chi.sagepub.com/content/early/2016/04/22/1742395316644770.abstract (link broken)
*Ensure all the studies from this excellent document are in the relevant pages (topics, authors) in MEpedia https://drive.google.com/file/d/0B_Dn3IXWlI9fTGdpSjkzcmtWRUU/view
*Add Tuller/Racaniello pieces to Tuller & PACE pages http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ http://www.virology.ws/2016/09/06/open-letter-to-queen-mary-university-london-about-pace/ http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/
*Add the infamous house of lords discussion from 2013 to PACE and countess of mar pages https://youtu.be/Fo5hdL7zXxQ?t=1 and the transcript http://www.meassociation.org.uk/2013/02/house-of-lords-debates-the-pace-trial-verbatim-report-and-youtube-6-february-2013/
*Add http://www.virology.ws/2016/05/23/an-open-letter-to-plos-one/
*Add article by QMUL student http://theprintnews.co.uk/2016/01/scientists-demand-transparency-on-pace-trial/
*Add blog post data release http://www.thefacultylounge.org/2016/09/the-pace-study-results-exposed-as-meaningless-and-harmful.html
*Add Rehmeyer Statnews piece https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/
*Add news coverage of data release http://www.appliedclinicaltrialsonline.com/tribunal-orders-release-withheld-data-london-trial and http://www.sbs.com.au/news/thefeed/article/2016/08/29/do-you-suffer-chronic-fatigue-syndrome-theres-some-good-news-you and http://www.wsj.com/articles/patients-scientists-fight-over-research-data-access-1457394712 http://www.meaction.net/2016/09/09/qmul-releases-pace-data/ https://www.wddty.com/news/2016/09/chronic-fatigue-sufferers-getting-the-wrong-treatment-thanks-to-a-falsified-study.html http://nymag.com/scienceofus/2016/09/a-big-chronic-fatigue-syndrome-study-has-been-discredited.html?mid=twitter-share-scienceofus http://occupyme.net/2016/09/21/pace-grossly-exaggerated/ http://uk.businessinsider.com/flawed-lancet-study-me-cfs-chronic-fatigue-2016-9
*Add http://www.simonwessely.com/Downloads/Publications/CFS/85.pdf
*Add http://dspace.nwu.ac.za/handle/10394/17668
*Add to Maryann Spurgin page http://www.meadvocacy.org/circulatory_impairment
*Add this new Marshall-Gradisnik study to all relevant pages https://www.ncbi.nlm.nih.gov/pubmed/27001659
*Add http://link.springer.com/article/10.1007%2Fs11306-015-0816-5
*Add to CMRC page http://www.meresearch.org.uk/news/cmrc-agm-2016-conference-news/
*Add https://valerieeliotsmith.files.wordpress.com/2016/04/010-090216-r2-matthees_main_response.pdf
*Add Nath talk https://www.youtube.com/watch?v=g8z-v1F6Ax0
*Add this 2011 Klimas talk to her page https://www.youtube.com/watch?v=UMimz3iDk0s
*Add to the quotations page the quote from Nancy Klimas where she said she'd choose HIV over ME/CFS
*Add to Unumatz page http://www.eurekalert.org/pub_releases/2016-06/jl-nft060716.php
*Add https://www.youtube.com/watch?v=wsUhaGEKXBg
*Add http://www.occupycfs.com/2016/05/21/cfs-advisory-committee-meeting-outcomes/
*Add to [[Enterovirus]] http://www.ncbi.nlm.nih.gov/pubmed/2161907
*Add to Neil McGregor page https://meaustralia.net/2016/08/08/meet-the-scientists-dr-neil-mcgregor/
*Add https://twitter.com/TomKindlon/status/680141293863829505?s=09
*Add the Morris/Maes papers to both their pages and relevant topic pages, a list is here http://forums.phoenixrising.me/index.php?threads/can-you-help-working-on-mitochondria-page.45729/page-2#post-744173
*Add to Q Fever page https://cfsremission.wordpress.com/2016/05/28/post-infection-fatigue/
*Add to NIH page http://forums.phoenixrising.me/index.php?threads/transcript-of-dr-vicky-whittemores-me-cfs-proposal-to-the-nih-council-26-may-2016.44845/
*Add http://www.huffingtonpost.com/maureen-hanson/be-aware-and-beware-chron_b_10057510.html
*Add to IiME conference page http://www.healthrising.org/blog/2016/06/09/bacteria-brainstem-rituximab-progress-invest-me-chronic-fatigue-syndrome/
*Add to IiME conference page http://phoenixrising.me/archives/28153
*Add this article on three "biomarkers" for the disease to relevant pages http://www.mecfsnsw.org.au/research/three-new-biomarkers-for-mecfs/
*Add these THREE segments of interview with Alan Light https://www.youtube.com/watch?v=ZZyXUL7CPks&feature=youtu.be
*Add book http://www.meaction.net/2016/06/16/new-mecfs-book-lighting-up-a-hidden-world/
*Add Lucibee article on PACE and Chalder fatigue scale (she was a sub-editor at Lancet). Also find her previous article on PACE and add that. Also add to Chalder page, and possibly also a new page on the Chalder Fatigue Scale itself to explain it. https://lucibee.wordpress.com/2016/04/02/fatigued-by-scales-as-outcome-measures/ Here's a link to the Chalder Fatigue Scale http://www.goodmedicine.org.uk/files/assessment,%20chalder%20fatigue%20scale.pdf Also study https://www.ncbi.nlm.nih.gov/pubmed/8463991
*Add to Chalder Fatigue Scale page http://evaluatingpace.phoenixrising.me/aps3chalder.html
*Add disease symptom scale, and somehow group all symptom scales (lerner, bell, chalder, de paul, etc) https://twitter.com/TomKindlon/status/721423210919669760?s=09
*Add https://afectadasporlosrecortessanitarios.wordpress.com/2016/05/11/risk-of-suicide-due-to-neglect-amongst-pwme/ added to [[Spain]], [[Epidemiology]], [[Suicide]]
*Add this study to the GET page https://www.ncbi.nlm.nih.gov/pubmed/26995250
*Add new blog post about Karina Hansen to her page http://valerieeliotsmith.com/2016/04/04/karina-hansen-4-timeline-torture-tragedy/
*Add article to Lyme page http://www.perthnow.com.au/news/western-australia/lyme-disease-a-ticking-timebomb-that-health-authorities-say-does-not-exist/story-fnhocxo3-1226886911487
*Add to melatonin page https://www.ncbi.nlm.nih.gov/pubmed/27226183
*Pick a country page and make sure there is a flag image on it (use one that's about 200 pixels wide to avoid the need for a thumbnail image, which is currently broken).
*Add https://www.ncbi.nlm.nih.gov/pubmed/9861623
*Add this interview with Susan Levine to her page https://www.youtube.com/watch?v=Akc5upzbFxs&feature=youtu.be
*Add a photo of Ampligen to the page
*copy Tuller articles from PACE Trial to Tuller page (already done by someone)
*Make sure the Glenn Beck page links back to this post https://www.facebook.com/GlennBeck/posts/10153736242213188
*Add FINE consent form http://retractionwatch.com/wp-content/uploads/2016/05/11.4.16-Mitchell-Response-consent-form-version3-MREC-2460904.pdf
*Add to FINE page https://forbetterscience.wordpress.com/2016/05/20/plos-correction-removes-previously-available-anonymised-patient-clinical-trial-data/
*Add to IBS page https://jcoynester.wordpress.com/2016/05/21/no-irritable-bowel-syndrome-is-not-all-in-your-head/
*Add to MTHFR page https://selfhacked.com/2016/05/18/need-know-mthfr-genespolymorphisms-c677t-rs1801133/
*Add to Rikva Solomon page https://www.statnews.com/2016/05/24/chronic-fatigue-syndrome-myalgic-encephalomyelitis/
*Add to Tom Kindlon page https://www.pinterest.com/tomkindlon/
*Add this article about preliminary findings from Davis work to pages for Davis, Mitochondria, End ME/CFS Project, and Naviaux pages http://www.cortjohnson.org/forums/threads/end-me-cfs-severe-patient-study-turns-to-the-mitochondria.3949/page-2
*Add this article to Learn More section of NIH study page http://www.medpagetoday.com/Neurology/GeneralNeurology/56772
*Add this interview with Jennifer Brea to her page in "Talks & interviews" section https://secure-ec.libsyn.com/p/1/c/3/1c390d4707a99658/WMCLive_Episode159.mp3?d13a76d516d9dec20c3d276ce028ed5089ab1ce3dae902ea1d06cd8f33d6cd5b120e&c_id=11198959
*Make sure the Fukuda/CDC criteria page includes a link to the actual criteria definition: http://www.cfids-me.org/cdcdefine.html
*Make sure Alan Light's gene expression chart that so strikingly shows the effects of exercise on patients is included in MEpedia.(Pace Trial)
*Add educational video on central nervous system https://www.youtube.com/watch?v=q8NtmDrb_qo (Nervous System)
*Add educational video on autonomic nervous system https://www.youtube.com/watch?v=71pCilo8k4M (and POTS & OI pages?)
*Add educational video on parasympathetic nervous system https://www.youtube.com/watch?v=qqU-VjqjczE (Nervous System)
*Add educational video on sympathetic nervous system https://www.youtube.com/watch?v=0IDgBlCHVsA (Nervous System)
*Look over the original study and add new information to [[Epstein-Barr virus]] page http://www.meaction.net/2015/12/10/study-shows-epstein-barr-virus-can-infect-human-neurons/
*Add https://batemanhornecenter.org/link-between-gut-microbiome-and-pem/
*Add this article on PEM to the PEM page http://me-cfs.se/blogg/suggestion-to-replace-pem-by-par/
*Add this study to PEM page, Zinn pages, Jason page, maybe others https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4761639/#!po=2.51799
*Add this study to page on cognitive symptoms https://www.ncbi.nlm.nih.gov/pubmed/27032787
*Replace this page with a category and ensure all sub-pages are categorised into a useful structure http://me-pedia.org/wiki/Research_initiatives_Europe
*Replace this page with a category http://me-pedia.org/wiki/Clinical_doctors_worldwide categorise all pages within it
*Replace this page with a category http://me-pedia.org/wiki/Patient_Groups_Worldwide
*Add article to Shirley Conran page http://www.dailymail.co.uk/femail/article-3511666/The-one-lesson-ve-learned-life-Author-Shirley-Conran-surviving-ME.html
*Make sure this recent update by IiME on their Rituximab research is included on the Rituximab page under Learn more http://www.ukrituximabtrial.org/Rituximab%20news-Mar16%2001.htm
*Add photos (pre-illness and post) to Whitney Dafoe's page http://me-pedia.org/wiki/Whitney_Dafoe
*Add Ampligen http://www.fda.gov/downloads/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/ArthritisAdvisoryCommittee/UCM334430.pdf
*Add vitamin B study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1297139/
*Add this Lassesen article to the LDS page under Learn More https://cfsremission.wordpress.com/2016/03/19/review-of-low-dose-naltrexone/
*Add latest video (with Q&A) to PACE page and Tuller page. On the video Tuller states he was involved in Act Up, please add that fact to his page. https://www.youtube.com/watch?v=1fS6Gzc52VI
*Added the appropriate Linus Pauling Institute page to all vitamins and minerals pages
*Add this Mary Schweitzer post to the NIH study page http://slightlyalive.blogspot.co.uk/2016/03/open-letter-to-dr-sanjay-gupta-on-in.html
*Add https://www.youtube.com/watch?v=bCUvygbYdXs
*Add https://www.ncbi.nlm.nih.gov/pubmed/10209352
*Make sure this study is linked to from the natural killer cell page https://www.dovepress.com/articles.php?article_id=26236
*Add this Norwegian TV segment about Rituximab (and private availability) to Rituximab page https://www.youtube.com/watch?v=MfqJWRhgVx0&feature=youtu.be

https://dl.dropboxusercontent.com/u/23608059/simon%20on%20eysenck.pdf

*Add this study on endothelial function by Julia Newton https://www.ncbi.nlm.nih.gov/pubmed/22078396
*Add https://www.ncbi.nlm.nih.gov/pubmed/10535608
*Add http://solvecfs.org/spring-chronicle/spring-chronicle-2016.pdf
*Add http://www.meaction.net/2016/04/24/transcript-solve-mecfs-interviews-dr-avi-nath/
*Add SPECT study https://www.ncbi.nlm.nih.gov/pubmed/1491843
*Add https://twitter.com/EUROMEALL
*Add https://www.ncbi.nlm.nih.gov/pubmed/9476743
*Add https://www.youtube.com/watch?v=87zAPTEtxas
*Add https://www.youtube.com/watch?v=wJB95m4FLa0&feature=youtu.be
*Add Ron Davis MM interview to his page https://www.youtube.com/watch?v=fiSPS85sTkw&feature=youtu.be
*Make sure the IACFS name change definition is included http://iacfsme.org/ME-CFS-Primer-Education/Pages/ME-CFS-Name-Change.aspx
*Add http://iacfsme.org/PDFS/2016MayNesletter/Attachment-08-Dr-Keith-Geraghty-Doing-CFS-research.aspx
*Add https://www.ncbi.nlm.nih.gov/pubmed/27088059
*Make sure this study is linked to on the Carnitine page https://www.ncbi.nlm.nih.gov/pubmed/8148455
*Add http://www.meadvocacy.org/eileen_holderman_cfsac_public_comment_about_nih_study
*Add http://stanmed.stanford.edu/2016spring/the-puzzle-solver.html
*Add https://www.ncbi.nlm.nih.gov/pubmed/27091026
*Add https://www.ncbi.nlm.nih.gov/pubmed/9226729
*Add https://www.ncbi.nlm.nih.gov/pubmed/9170115
*Add quote on quotations, cause of death and Chu pages https://twitter.com/TomKindlon/status/728660598125408257?s=09
*Add https://www.ncbi.nlm.nih.gov/pubmed/19228959
*Add http://www.healthrising.org/forums/threads/an-eye-on-the-mitochondria-man-robert-naviaux-and-chronic-fatigue-syndrome-me-cfs.4163/
*Add https://www.ncbi.nlm.nih.gov/pubmed/9149090
*Add a picture of Rituximab to the Rituximab page
*Make sure the IOM report page includes a link to their brief summary: http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf
*Add to POTS page http://hic.sagepub.com/content/2/1/2324709614527812.full
*Add ritux update http://www.healthrising.org/forums/threads/rituximab-study-update-researchers-focus-on-rare-gene-variant.4319/
*Add https://batemanhornecenter.org/uncovering-biomarkers-fcg-receptors/
*Add https://www.facebook.com/notes/jan-van-roijen/re-dr-avi-nath-me/10154382672523322
*Add https://www.youtube.com/watch?v=li7zQgN-PxQ&feature=youtu.be
*Add https://www.youtube.com/watch?v=xMcZ-UTlRmU&feature=youtu.be
*Make sure this study is on author pages and maybe elsewhere too https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4761639/#!po=2.51799
*Make sure this study is on NK cell page https://www.ncbi.nlm.nih.gov/pubmed/2824604
*Add to POTS page http://forums.phoenixrising.me/index.php?threads/is-postural-orthostatic-tachycardia-a-useful-diagnostic-marker-in-chronic-fatigue-syndrome-patients.44915/
*Make sure this study is linked to from the HHV6 page https://twitter.com/EricaVerrillo/status/715599637021859840?s=09
*Add https://www.ncbi.nlm.nih.gov/pubmed/27187093
*Add to microbiome page https://cfsremission.wordpress.com/2016/06/25/83-accuracy-in-mecfs-diagnosis-with-microbiome-analysis/
*Add https://www.ncbi.nlm.nih.gov/pubmed/27223465
*On the home page click on "Immune exhaustion hypothesis" to create the page, and add this article to it (and for extra points, the studies referenced, you may be able to copy & paste from eg the Hornig page) http://simmaronresearch.com/2016/03/are-chronic-fatigue-syndrome-mecfs-and-fibromyalgia-immune-exhaustion-disorders/
*Pick a member of the IOM report committee and ensure we have a page on who they are [[Institute_of_Medicine_report]] page
*Add this Q-fever article on persistence post-infection http://qjmed.oxfordjournals.org/content/95/12/832.long
*Make sure we have a page (however small/simple) on the Canadian Criteria, that links to the criteria document: http://www.investinme.org/Documents/PDFdocuments/Canadian_ME_Overview_A4.pdf
*Immunosuppression from Rituximab may cause reactivation of a persistent enteroviral infection with potentially dangerous neurological complications http://www.sciencedirect.com/science/article/pii/S0042682210007683
*Make sure this article is on the list of articles about MECFS http://www.huffingtonpost.com/-stephanie-land/chronic-fatigue-syndrome-_1_b_9513498.html
*Add Peter White letter to the Wall St Journal. http://www.wsj.com/articles/public-release-of-cfs-data-is-limited-by-privacy-rules-1458846440 (full text here http://forums.phoenixrising.me/index.php?threads/peter-white-writes-to-wall-street-journal.43750/)

[[Category:User to-dos]]
[[Category:MEpedia guidelines]]

Patient mental health

2018-08-04T18:38:35Z

Ulli:Added quote from iom, link to me pedia page about report

<more content to go here on studies documenting the mental health of patients>

The 2015 [[Institute of Medicine]] [https://me-pedia.org/wiki/Institute_of_Medicine_report report] stated that ME "is a medical-not a psychiatric or psychological — illness"

==Notable studies==

*2010, [http://shr.sagepub.com/content/1/4/28.full Psychiatric misdiagnoses in patients with chronic fatigue syndrome] (Tara Lawn, Praveen Kumar, Bernice Knight, [[Michael Sharpe]], [[Peter White]])
*2009, [https://www.ncbi.nlm.nih.gov/pubmed/19414619 Psychiatric comorbidity in persons with chronic fatigue syndrome identified from the Georgia population]
*1994, [https://www.ncbi.nlm.nih.gov/pubmed/8007411 Chronic fatigue syndrome and psychiatric diseases]

===CDC Study===
At the CDC Grand Rounds event in February 2016 Doctor [[Elizabeth Unger]] showed the following slide summarizing preliminary, unpublished data from the [[CDC Multi-site Clinical Assessment of CFS]] on the function of the study's patient group. The red markers show normal values for healthy people. The blue boxes represent the range for study participants, with the diamonds showing the study participants' average score. The chart demonstrates near-normal mental health and emotional role functioning, but very poor physical function.<ref>[https://www.youtube.com/watch?v=0SnJy5AOSd8 Chronic Fatigue Syndrome: Advancing Research and Clinical Education]</ref>

[[File:2016 CDC multi-center study slide.jpg|center]]

==Learn more==
*2016, [http://www.shoutoutaboutme.com/symptoms/cdc-study-finds-cfs-is-physical-not-mental/ CDC study finds CFS is physical, not mental]

==See also==
[[Cognitive dysfunction]]

==References==
<references />

[[Category:Core topics]]

Institute of Medicine report

2018-08-04T18:25:05Z

Ulli:/* Key findings */ added quote

[[File:Iom report front.gif|right|frame|Front cover of the report]]
The '''Institute of Medicine report''' on ME/CFS, ''Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness'', was published on February 10 2015.<ref name="IOM2015MECFS" /> The [[National Academy of Medicine]] (known as the [[Institute of Medicine]] or [[IOM]] until June 2015) is an American non-profit, non-governmental organization.

On 23 September 2013 the [[U.S. Department of Health and Human Services]] (HHS), the [[National Institutes of Health]], the [[Agency for Healthcare Research and Quality]], the [[Centers for Disease Control & Prevention]], the [[Food and Drug Administration]], and the [[Social Security Administration]] announced their intention to ask the Institute of Medicine (IOM) to convene an expert committee to examine the evidence base for [[ME/CFS]].<ref>[https://dl.dropboxusercontent.com/u/89158245/CFSAC%20Sept%2023%202013%20IOM%20announcement.pdf HHS Announcement on the IOM Study on Diagnostic Criteria for ME/CFS September 23, 2013]</ref>

==Key findings==

*"Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome."
*ME "is a medical-not a psychiatric or psychological — illness"
*"This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort."
*"Many people with ME/CFS report difficulty completing everyday tasks, and at least one quarter have been home- or bed-bound at some point as a result of their illness."
*"The total economic costs of ME/CFS are estimated at $17 to $24 billion annually."
*"ME/CFS can severely impair patients’ ability to conduct their normal lives."

==Recommendations==
Recommendation 1: "Physicians should diagnose myalgic encephalomyelitis/chronic fatigue syndrome if diagnostic criteria are met following an appropriate history, physical examination, and medical work-up. A new code should be assigned to this disorder in the International Classification of Diseases, Tenth Revision (ICD-10), that is not linked to “chronic fatigue” or “neurasthenia.”"<ref>http://www.nap.edu/read/19012/chapter/9#222</ref>

Recommendation 2: "The Department of Health and Human Services should develop a toolkit appropriate for screening and diagnosing patients with myalgic encephalomyelitis/chronic fatigue syndrome in a wide array of clinical settings that commonly encounter these patients, including primary care practices, emergency departments, mental/behavioral health clinics, physical/occupational therapy units, and medical subspecialty services (e.g., rheumatology, infectious diseases, neurology)."<ref>http://www.nap.edu/read/19012/chapter/9#223</ref>

Recommendation 3: "A multidisciplinary group should reexamine the diagnostic criteria set forth in this report when firm evidence supports modification to improve the identification or care of affected individuals. Such a group should consider, in no more than 5 years, whether modification of the criteria is necessary. Funding for this update effort should be provided by nonconflicted sources, such as the [[Agency for Healthcare Research and Quality]] through its Evidence-based Practice Centers process, and foundations."<ref>http://www.nap.edu/read/19012/chapter/9#227</ref>

Recommendation 4: "The committee recommends that this disorder be renamed “[[Systemic Exertion Intolerance Disease|systemic exertion intolerance disease]]” (SEID). SEID should replace myalgic encephalomyelitis/chronic fatigue syndrome for patients who meet the criteria set forth in this report."<ref>http://www.nap.edu/read/19012/chapter/9#228</ref>

==Cost==
The [[U.S. Department of Health and Human Services]] contracted to paid one million (US) dollars for this IOM contract. The monies were allocated from the Fiscal Year 2013 budget.<ref>https://www.hhs.gov/ash/advisory-committees/cfsac/notices/faqs-on-an-hhs-contract-with-the-iom-to-recommend-clinical-diagnostic-criteria-for-me-cfs/index.html</ref>

==Read the report==

*[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf Key facts] (two pages)
*[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf Report brief] (four pages)
*[http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx Download full report] (282 pages)
*[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_DiagnosticAlgorithm Diagnostic Algorithm Chart]
*[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_ProposedDiagnosticCriteria Proposed Diagnostic Criteria Chart]
*[http://www.nap.edu/read/19012/chapter/1 Read the full 282 page report online]
**[http://www.nap.edu/read/19012/chapter/1 Front matter]
**[http://www.nap.edu/read/19012/chapter/2 Summary]
**[http://www.nap.edu/read/19012/chapter/3 1. Introduction]
**[http://www.nap.edu/read/19012/chapter/4 2. Background]
**[http://www.nap.edu/read/19012/chapter/5 3. Current Case Definitions and Diagnostic Criteria, Terminology, and Symptom Constructs and Clusters]
**[http://www.nap.edu/read/19012/chapter/6 4. Review of the Evidence on Major ME/CFS Symptoms and Manifestations]
**[http://www.nap.edu/read/19012/chapter/7 5. Review of the Evidence on Other ME/CFS Symptoms and Manifestations]
**[http://www.nap.edu/read/19012/chapter/8 6. Pediatric ME/CFS]
**[http://www.nap.edu/read/19012/chapter/9 7. Recommendations]
**[http://www.nap.edu/read/19012/chapter/10 8. Dissemination Strategy]
**[http://www.nap.edu/read/19012/chapter/11 Public Session Agendas]
**[http://www.nap.edu/read/19012/chapter/12 GRADE Grid Template]
**[http://www.nap.edu/read/19012/chapter/13 Disability in ME/CFS]
**[http://www.nap.edu/read/19012/chapter/14 Questionnaires and Tools That May Be Useful for Assessing ME/CFS Symptoms]
**[http://www.nap.edu/read/19012/chapter/15 Biographical Sketches of Committee Members, Consultants, and Staff]

==Criticisms==

[[Peter White]], a British psychiatrist and co-author of the [[PACE trial]], criticised the report.<ref>[http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=10052432&fileId=S0033291715002366 Institute of Medicine report - Review] (8 December 2015)
</ref>

[[Per Fink]], a Danish psychiatrist, who believes [[ME/CFS]] is a functional somatic syndrome<ref name="Schröder, 2017" />, wrote a letter of complaint.<ref>[http://www.healthrising.org/forums/threads/per-fink-complains-about-iom-me-cfs-report.2745/ Per Fink complains about IOM ME/CFS report]</ref>

==Press conference==
Watch [https://www.youtube.com/watch?v=F7mQWUcxDbo a recording] of the report launch event.

==Responses==

===Researchers and clinicians===

*[http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=10052432&fileId=S0033291715002366 Institute of Medicine report - Review] ([[Peter White]], 8 December 2015)
*[https://pbs.twimg.com/media/B-N28wgCQAAECw6.png:large What's in a name? Systemic exertion intolerance disease] ([[The Lancet]], 21 February 2015)
*[https://m.facebook.com/story.php?story_fbid=1080750148618239&id=523866227639970 Derek Enlander comment on Institute of Medicine report] (19 February 2015, see also [[Derek Enlander]])

===Patient community===

===Centers for Disease Control and Prevention (CDC)===
On July 12, 2018, the [[CDC]] featured the IOM Report in full on it's ME/CFS home page. The prevelance data "estimated 836,000 to 2.5 million Americans suffer from ME/CFS, but most of them have not been diagnosed"<ref>[https://www.cdc.gov/me-cfs/index.html Myalgic encephalomyelitis/chronic fatigue syndrome]</ref> are stated in the IOM report.<ref>[http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness - Feb 10, 2015]</ref> The report's diagnostic criteria is outlined in the healthcare providers section.<ref>[https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html IOM 2015 Diagnostic Criteria - CDC]</ref>

==Panel members==

*[[Ellen Wright Clayton]] (Chair)
*[[Margarita Alegría]]
*[[Lucinda Bateman]]
*[[Lily Chu]]
*[[Charles Cleeland]]
*[[Ronald Davis]]
*[[Betty Diamond]]
*[[Theodore Ganiats]]
*[[Betsy Keller]]
*[[Nancy Klimas]]
*[[A Martin Lerner]]
*[[Cynthia Mulrow]]
*[[Benjamin Natelson]]
*[[Peter Rowe]]
*[[Michael Shelanski]]

==Learn more==

*17 February 2015, [http://www.newyorker.com/tech/elements/chronic-fatigue-syndrome-iom-report "A New Name, and Wider Recognition, for Chronic Fatigue Syndrome" by Meghan O’Rourke in ''The New Yorker'']
*2015, [https://www.washingtonpost.com/news/to-your-health/wp/2015/02/10/chronic-fatigue-syndrome-is-a-real-condition-not-a-psychological-illness-expert-panel-says/ Chronic fatigue syndrome is a physical disorder, not a psychological illness, panel says]
*2013, [http://phoenixrising.me/archives/20319 Death Contract? ME/CFS Experts and Advocates Unite to Oppose US ‘Case Definition’ Contract]

==See also==

*[[Systemic Exertion Intolerance Disease]]
*[[Pathways to prevention report]]

==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="Schröder, 2017">{{Citation
| last1 = Schröder | first1 = Andreas | authorlink1 =
| last2 = Ørnbøl | first2 = Eva | authorlink2 =
| last3 = Jensen | first3 = Jens S. | authorlink3 =
| last4 = Sharpe | first4 = Michael | authorlink4 = Michael Sharpe
| last5 = Fink | first5 = Per | authorlink5 = Per Fink
| title = Long-term economic evaluation of cognitive-behavioural group treatment versus enhanced usual care for functional somatic syndromes
| journal = Journal of Psychosomatic Research | volume = 94 | issue = | page = 73–81
| date = 2017
| pmid =
| doi = 10.1016/j.jpsychores.2017.01.005
}}
</ref>
</references>


[[Category:Reports]]

Guide for patients having surgery

2018-07-27T18:49:36Z

Ulli:/* Anesthesia */ added content about fluids before surgery and drugs

==Anesthesia==
It is important to ask to meet with your anesthesiologist in advance to discuss the resources below. Whether or not you have a formal diagnosis, many patients with ME have [[mast cell activation disorder]] or are otherwise sensitive to certain classes of drugs currently used in anesthesia. Your anesthesiologist may need to create a special anesthesiology protocol, for example, avoiding [[histamine]]-releasing and [[muscle]]-relaxing drugs.

It's helpful if you're familiar with your body's reactions to pain relieving drugs they may use post operatively.

Since ME patients have hydration/blood volume concerns, ask if the anesthesiologist could allow you to drink clear fluids beforehand, depending on the surgery.

In addition, patients with ME may have undiagnosed or subclinical structural cervical issues such as [[craniocervical instability]] or [[cervical spinal stenosis]]. Making sure if at all possible, your head and neck are kept in a neutral position during surgery to help limit the risk of exacerbation or damage. This is especially important for patients with [[hypermobility]], [[Ehlers-Danlos syndrome]] or [[Postural orthostatic tachycardia syndrome]].

=== Handouts ===

* [http://drlapp.com/resources/advice-for-pwcs-anticipating-anesthesia-or-surgery/ Advice for PWCs Anticipating Anesthesia or Surgery] (Hunter Hopkins Center)

==Recovery at the hospital==
If you are staying overnight at the hospital, it's important to talk to your surgeon in advance regarding your needs for sleep and minimal disruption.

* Discuss in advance any sound, light, or chemical/fragrance sensitivities (if possible, a sign at your door or next to you can help remind nurses changing shifts)
* Ask for a sound-proof door (v. an open curtain) and placement on quiet ward
* Ask whether it's possible to minimize nighttime disruptions (e.g., middle of the night blood pressure monitoring) if this isn't a concern for your specific medical condition
* Discuss any food sensitivities in advance
* Discuss temperature sensitivities, and possible accommodations including adjustment of operating and recovery room thermostat, provision of extra blankets or ice chips
* If you have experience taking IV saline, discuss the possibility that you will need extra hydration before, during, or after surgery. You may need to have your surgeon's office consult with your ME specialist as doctors may not be familiar with the finding that many POTS and ME patients have [[low blood volume]] and be reluctant to provide more hydration than they would a healthy person.

It may take you longer to recover and so if your procedure generally doesn't require an overnight stay, you might ask that they reserve a bed for you just in case. Or if your procedure requires an overnight, ask for a second night.

== Discharge ==
If you don't normally use a wheelchair, you may need one to get to your car. If you normally use a wheelchair, you may need a reclining wheelchair or gurney. These scenarios are also best discussed in advance as nurses may not feel empowered to order these, especially if they are not a part of the general hospital protocol, and you may not have access to a doctor at time of discharge. The more you can make sure is entered into your chart in advance of your admission to hospital to address your unique, potential needs, the better.

== Considerations for specific diagnoses ==

=== Postural orthostatic tachycardia ===

=== Mast cell activation disorder ===

Pain and stress can trigger mast cell degranulation reactions; adapted pain management and sedation protocols may be indicated, especially if the patient has experienced medical trauma in the past. If the patient experiences anaphylactic reactions, epinephrine must be on hand during the procedure<ref>{{Cite web|url=https://www.mastocytosis.ca/en/treatment/surgery-and-anesthesia|title=Surgery and Anesthesia|last=Gould|first=Nancy|date=04 May 2015|website=Mastocytosis Society Canada|archive-url=https://web.archive.org/web/20180727182631/https://www.mastocytosis.ca/en/treatment/surgery-and-anesthesia|archive-date=July 27, 2018|dead-url=|access-date=July 27, 2018}}</ref><ref>{{Cite web|url=https://tmsforacure.org/perioperative-management/|title=Perioperative Management|last=No Author|first=|date=2018|website=The Mastocytosis Society|archive-url=https://web.archive.org/web/20180727182816/https://tmsforacure.org/perioperative-management/|archive-date=July 27, 2018|dead-url=|access-date=July 27, 2018}}</ref>. A pre-procedure round of corticosteroids may also be indicated.

Excessive bleeding is common in mast cell disorders, even when blood counts are normal. This is related in part to the release of heparin from mast cell granules<ref>{{Cite journal|last=Afrin|first=Lawrence B.|date=February 6, 2014|title=A concise, practical guide to diagnostic assessment for mast cell activation disease|url=https://www.wjgnet.com/2218-6204/full/v3/i1/1.htm|journal=World Journal of Haematology|volume=3|pages=1-17|via=Baishideng Publishing Group}}</ref>. Pressure dressings are indicated even for minor procedures. For major procedures, history of mast cell disorder should be included in bleeding risk assessment, and may require special protocols.

=== Ehlers-Danlos Syndrome ===

== See also ==

* [[Best practices for hospitals]]

== Learn more ==

* [https://www.prohealth.com/library/evergreen_pages/anesthesia-recommendations-for-chronic-fatigue-syndrome-myalgic-encephalomyelitis Anesthesia Recommendations For Chronic Fatigue Syndrome & Myalgic Encephalomyelitis]

== References ==
[[Category:Guides]]
<references />

Guide for patients having surgery

2018-07-27T17:58:38Z

Ulli:Added sign suggestion, minor typo/word correction

Fingerprint change

2018-05-23T00:10:19Z

Ulli:Add page # for book reference

Sign or symptom

according to Dr Paul Cheney, around 50% of mecfs patients have fingerprint changes that may show as faded prints and/or lines across the fingerprints, horizontal and vertical. This may also happen with Lyme, celiac, and autoimmune disorders, but it's extremely rare in the general population. May also be called fingerprint atrophy.

==Learn more==

*https://nopostergirl.com/2011/02/27/the-fact-of-fingerprints

Has a helpful slide from Dr. Cheney showing difference in appearance

*http://www.tldp.com/issue/157-8/157pub.htm

Townsend letter

==See also==
osler's web by Hillary Johnson, page 142

Stricken - Voices From the Hidden Epidemic of Chronic Fatigue Syndrome by Peggy Munson

chapter 14 The Paradox of Lost Fingerprints: Metaphor and the Shaming of Chronic Fatigue Syndrome

==References==
<references />

[[Category:Signs and symptoms]]

MEpedia:Suggested tasks

2018-05-21T18:03:01Z

Ulli:added page # request for oslers web/* Suggestions */

This page lists suggestions for improvements or additions to MEpedia.

PLEASE if at all possible, create/edit a relevant article yourself (see [[How to contribute]]), as the editors of MEpedia are all sick and working hard to improve the content in particular areas - we need your help! But if you REALLY can't make the improvement yourself, click '''Edit''' below (next to the heading "Suggestions"), add your suggestion to the end, and then click '''Save page'''.

Please keep your suggestion as brief as possible (usually one line) and be sure to include web links to sources/citations (e.g., the published study, a source for a quote, etc.).

If you merely wish to keep track of your own goals on site (but for discoverability by others), you can instead add a subpage to your user page (add a "/" and subpage, e.g., [[User:Brettz9/To-dos]]) and then add the code <nowiki>[[Category:User to-dos]]</nowiki> to your subpage article. It will then show up at [[:Category:User to-dos]].

==Priority pages for expansion==
'''Science:''' [[Citric acid cycle]], [[Mitochondria]], [[Exercise]], [[Natural killer cell]], [[Central nervous system]], [[Nitric oxide hypothesis]], [[Brain]], [[Brain imaging]], [[Microbiome hypothesis]], [[Primer_for_journalists#Prognosis|Primer for journalists (''Prognosis'' section)]], [[PACE trial]]

=Suggestions - High Priority=
'''When a task is complete move it to the COMPLETED section at the bottom of the page'''

*Add photos of ALL the May (and Belfast in June) Millions Missing protests to the MM page http://me-pedia.org/wiki/Millions_Missing_protests
*Create a page for Lyrica/Pregabalin and add this talk by Alan Light https://www.youtube.com/watch?v=S3CmUJyVBbQ&feature=youtu.be&t=3m1s
*Make sure this study on relative quality of life is documented and cited, especially the chart http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421
*Merge the two history pages together: http://me-pedia.org/wiki/History_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome and http://me-pedia.org/wiki/Important_events_timeline
*Add the Stats.org editorial & 7,000 word criticism to the PACE page :
**Make sure that all the specific significant criticisms they make are covered in the Criticism section if not already
**(''IN PROGRESS'') Include (and explain) this chart from article https://twitter.com/Katiissick/status/713080268756619264
*Add Peter White letter to the Wall St Journal. http://www.wsj.com/articles/public-release-of-cfs-data-is-limited-by-privacy-rules-1458846440 (full text here http://forums.phoenixrising.me/index.php?threads/peter-white-writes-to-wall-street-journal.43750/)
*Categorize all uncategorized pages (list of uncategorized pages here: http://me-pedia.org/wiki/Special:UncategorizedPages)
* Add a [[Wikipedia:Portal:Contents/Portals|portal]] on Wikipedia for CFS or umbrella (e.g., auto-immune-related conditions), bringing more awareness and contributions on Wikipedia (also through subpages, such as "B cells and CFS"), and which we could reference here

=Suggestions - Five Minute Tasks=
'''When a task is complete move it to the COMPLETED section at the bottom of the page'''

*Add https://grants.nih.gov/grants/guide/notice-files/NOT-AI-16-046.html
*Add http://www.healthrising.org/blog/2016/04/06/immune-system-fatigue-brain-me-cfs-fibromyalia/
*Make sure MEpedia covers the GETSET study https://spoonseeker.com/2016/05/23/a-few-notes-on-getset/
*Add https://twitter.com/Firestormmer/status/734650703847784449
*Add http://www.freezepage.com/1374761286EFCHIYENBE
*Add http://www.healthrising.org/blog/2016/05/19/25-disease-chronic-fatigue-syndrome-mecfs-unique-many-people-homebound/
*Add http://www.meaction.net/2016/05/18/uk-plans-worlds-biggest-biomedical-mecfs-study/
*Find source and add https://twitter.com/Firestormmer/status/733001836186238976
*Add to ketogenic diet page under exogenous ketones https://ketosource.co.uk/exogenous-ketone-supplements-review/
*Add http://www.meassociation.org.uk/2016/05/remember-shine-the-spotlight-on-mecfs-research-and-management-dr-shepherd-recalls-highlights-of-burgess-hill-meeting-14-may-2016/
*Add http://medicalxpress.com/news/2016-05-chronic-fatigue-patients-suppress-emotions.html
*Add to ritux/b-cell pages http://forums.phoenixrising.me/index.php?threads/extended-b-cell-phenotype-in-patients-with-me-cfs-a-cross-sectional-study.41743/#post-674305
*Add http://www.meassociation.org.uk/2016/05/me-associations-contributions-towards-mitochondrial-muscle-research-in-mecfs-17-may-2016/
*Add new page for MEGA UK study https://www.actionforme.org.uk/news/mega-new-me-research-project/#.Vzn9sbBp4gk.twitter
*Add http://www.meaction.net/2016/05/15/brain-connectivity-problems-causing-signalling-problems/
*Add details of new Crawley study to her page, and mention AfME funding it, also mention that on AfME page http://forums.phoenixrising.me/index.php?threads/esther-crawley-paediatric-prevalence-study-funded-by-action-for-me.44622/#post-724857
*Add to MAGENTA page http://apps.who.int/trialsearch/Trial2.aspx?TrialID=ISRCTN23962803
*Add http://www.theestablishment.co/2016/05/13/the-hidden-battle-for-the-rights-of-chronic-fatigue-syndrome-sufferers/
*Add https://cfsremission.wordpress.com/2016/05/14/cortisol-cfs-and-microbiome/
*Add http://www.meassociation.org.uk/2016/05/ive-suffered-with-me-since-i-was-eight-and-the-way-im-treated-hasnt-changed-in-30-years-the-independent-12-may-2016/
*Add https://www.ncbi.nlm.nih.gov/pubmed/27165859
*Add http://phoenixrising.me/archives/28077
*Add http://www.meaction.net/2016/05/11/fluge-and-mellas-search-for-genetic-markers/
*Add http://www.meaction.net/2016/05/09/study-housebound-versus-nonhousebound-patients-with-mecfs/
*Add to Ritux page https://twitter.com/Firestormmer/status/730399214686056448
*Add https://selfhacked.com/2016/05/11/21-proven-science-based-reasons-magnesium-amazing-including-drawbacks/
*Add http://scienmag.com/further-clues-in-the-fight-against-chronic-fatigue-syndrome/
*Add http://www.eurekalert.org/pub_releases/2016-05/bawh-etg050616.php
*Add https://www.ncbi.nlm.nih.gov/pubmed/9771781
*Add http://www.meaction.net/2016/05/09/study-housebound-versus-nonhousebound-patients-with-mecfs/
*Add http://www.healthrising.org/blog/2016/05/09/activated-mast-cell-activation-syndrome-mecfsfm/
*Add https://www.ncbi.nlm.nih.gov/pubmed/9745235
*Add http://healthy-magazines.com/chronic-fatigue-syndrome-mecfs-uncovering-mystery/
*Add https://www.researchgate.net/publication/283476227_Psychogenic_explanations_of_physical_illness_Time_to_examine_the_evidence
*Add http://chi.sagepub.com/content/early/2016/04/22/1742395316644770.abstract
*Add http://translational-medicine.biomedcentral.com/articles/10.1186/s12967-016-0873-1
*Add http://www.meaction.net/2016/05/05/progressive-brain-changes-in-patients-with-chronic-fatigue-syndrome-are-our-brains-starved-of-oxygen/
*Add http://www.meactionuk.org.uk/Response-to-Dr-Stuart-Spencer.htm
*Add https://selfhacked.com/2016/05/03/mmp9/
*Add http://forums.phoenixrising.me/index.php?threads/norwegian-professor-in-biology-supportive-of-pace.44177/page-5#post-721234
*Add to NIH page http://www.occupycfs.com/2016/05/03/staying-the-course-to-where/
*Add http://www.huffingtonpost.com/-stephanie-land/patients-with-chronic-ill_b_9818754.html
*Add https://www.ncbi.nlm.nih.gov/pubmed/9292244
*Add https://tipsforme.wordpress.com/2015/10/19/resource-walking-problems/?utm_content=bufferb75ff&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer
*Add https://www.researchgate.net/publication/11813965_What_is_Chronic_Fatigue_Syndrome_Heterogeneity_Within_an_International_Multicentre_Study
*Add http://www.meaction.net/2016/05/01/patients-and-professor-publish-biomedical-mecfs-paper/
*Add https://www.ncbi.nlm.nih.gov/pubmed/15784798
*Add http://www.healthrising.org/blog/2016/04/24/nath-nih-chronic-fatigue-syndrome-study-push-back/
*Add https://corsius.wordpress.com/2016/04/23/biased-research-on-cfs/
*Add http://www.itv.com/news/tyne-tees/update/2013-05-08/teenager-with-m-e-says-shes-accused-of-exaggerating-her-illness/
*Add http://www.healthrising.org/forums/threads/can-simple-blood-tests-help-to-identify-chronic-fatigue-syndrome-me-cfs.4228/
*Add http://chi.sagepub.com/content/early/2016/04/22/1742395316644770.long
*Add http://onlinelibrary.wiley.com/doi/10.1002/jmri.25283/full
*Add https://www.ncbi.nlm.nih.gov/pubmed/9018051
*Add http://www.tandfonline.com/doi/full/10.1080/21641846.2016.1160598
*Add http://www.meaction.net/2016/04/27/nih-study-will-bring-new-technology-and-expertise-to-mecfs/
*Add https://www.ncbi.nlm.nih.gov/pubmed/27114901
*Add quote to IOM report page and patient mental health pages https://twitter.com/ollie72/status/724948447024009217?cn=cmV0d2VldA%3D%3D&refsrc=email
*Add https://www.ncbi.nlm.nih.gov/pubmed/27116645
*Add https://meagenda.wordpress.com/2009/10/27/dr-nigel-speight-resigns-from-children-and-young-persons-organisation-ayme/
*Add to MS/Ritux pages http://www.gene.com/media/press-releases/14609/2015-10-08/genentechs-ocrelizumab-first-investigati
*Add http://translational-medicine.biomedcentral.com/articles/10.1186/s12967-016-0859-z
*Add http://www.mdpi.com/2075-4418/6/2/16
*Add https://www.ncbi.nlm.nih.gov/pubmed/27095328
*Add http://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleading-research-a_b_9726490.html
*Add https://www.ncbi.nlm.nih.gov/pmc/articles/PMC486360/?page=8
*Add https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2350897/pdf/bmj00539-0053d.pdf
*Add http://bmcinfectdis.biomedcentral.com/articles/10.1186/s12879-016-1497-z
*Add https://twitter.com/LouCorsius/status/719993266876391424/photo/1
*Make sure this article is linked to on the ME page, maybe elsewhere too https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1604957/pdf/brmedj00128-0006b.pdf
*Add this study on cytokines to the cytokines page (and pages for the specific ones affected) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC368231/pdf/cdli00002-0112.pdf
*Add this 1994 article to the Chronic Fatigue Syndrome page https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1615008/pdf/amjph00453-0124.pdf
*Add this article to the e-coli page https://cfsremission.wordpress.com/2016/03/29/the-care-and-feeding-of-e-coli-probiotics/
*Add this article to the autoimmunity page http://cellfatigue.blogspot.co.uk/2016/03/autoimmunity-and-self-tolerance-in-mecfs.html
*Make sure this study is mentioned on the ketogenic diet page https://www.ncbi.nlm.nih.gov/pubmed/24847102
*Create a basic outline page about this UK ME support group http://www.mesupport.co.uk/index.php?page=anniversary-statement You can copy-paste an outline from the outlines page http://me-pedia.org/wiki/MEpedia_article_outlines#Patient_Group.2FCharity
*Add new simple protocol article to Ken Lassesen's hypothesis page (probiotics) https://cfsremission.wordpress.com/2016/03/31/best-two-probiotics-to-start-probiotic-approach/ and also add this https://cfsremission.wordpress.com/2016/03/27/pictures-of-cfs/
*Add this interesting anecdote to the MS page http://www.cortjohnson.org/forums/threads/a-chronic-fatigue-syndrome-pots-patient-responds-to-a-multiple-sclerosis-drug-what-does-it-mean.4028/
*Make sure this video about Klimas' gene study is included on her page, and wherever the study is covered (perhaps its own page needed?) https://sharkmedia.nova.edu/media/ME+CFS+Genes+Study/1_06vh90p0
*Add 2006 announcement of fatigue service at Barts UK led by Peter White to White's page, and Shirley Conran page and Maurice Murphy pages. https://web.archive.org/web/20070522194545/http://www.bartsandthelondon.nhs.uk/formedia/press/release.asp?id=1216
*Add ME Advocacy article to NIH study page under Learn more http://www.meadvocacy.org/nih_sidesteps_critical_problems_with_the_me_cfs_study
*Add Cort article to PACE page, Learn more section http://www.cortjohnson.org/forums/threads/pace-trial-gets-most-devastating-critique-yet.4003/#post-15641
*Add to MRI pages https://www.ncbi.nlm.nih.gov/pubmed/8141020
*Add Guardian article to list of articles about ME http://www.theguardian.com/lifeandstyle/2016/apr/04/chronic-fatigue-syndrome-cfs-taken-seriously#comment-71789644 Maybe also to PACE page, and pages for Montoya, Hornig & Dimmock.
*Add study https://www.ncbi.nlm.nih.gov/pubmed/1282370
*Add study https://www.ncbi.nlm.nih.gov/pubmed/1446478
*Add study https://www.ncbi.nlm.nih.gov/pubmed/1337562
*Add NK study https://www.ncbi.nlm.nih.gov/pubmed/1287238
*Add this article to Cort Johnson page http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=28684
*Add http://carersfight.blogspot.co.uk/2015/12/the-pace-trial-concerns-raised-by.html
*Add https://m.facebook.com/photo.php?fbid=955820941179099&id=100002536068526&set=a.274636879297512.61710.100002536068526&source=57
*Add https://twitter.com/senseaboutsci/status/683616829923831808?s=09
*Add https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome_treatment
*Add http://simmaronresearch.com/2015/12/ian-lipkin-three-to-five-years-to-solve-chronic-fatigue-syndrome-mecfs/
*Add http://www.meassociation.org.uk/2015/12/plenty-of-new-blood-and-enthusiasm-at-the-uk-mecfs-biobank-23-december-2015/
*Add https://pubpeer.com/publications/22870204
*Add http://my.meaction.net/local_chapters/mepedia/forum_threads/4224?token=9408280d9eecf4e9b52677e3e5d6acd6e397162f#message_16831
*Add http://my.meaction.net/local_chapters/mepedia/forum_threads/4116?token=9408280d9eecf4e9b52677e3e5d6acd6e397162f#message_16842
*Add http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf
*Add http://www.mrijournal.com/article/S0730-725X(15)00303-3/abstract
*Add https://dl.dropboxusercontent.com/u/23608059/PDW-re-theft.pdf
*Add https://twitter.com/LetsDoIt4ME/status/678983105865195520/photo/1
*Add https://twitter.com/bengoldacre/status/679228319234195456
*Add http://forums.phoenixrising.me/index.php?threads/peter-white-barts-comments-on-draft-nice-guidelines-insight-into-their-views.1239/
*Add http://www.investinme.org/InfoCentre-vaccines-popup-1.htm
*Add http://articles.latimes.com/1986-06-07/news/mn-9956_1_lake-tahoe
*Add https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf
*Add http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD011040/full
*Add http://www.cortjohnson.org/forums/threads/severely-ill-chronic-fatigue-syndrome-me-cfs-study-expanded.3432/
*Add https://twitter.com/postersandme/status/677469604348870657/photo/1
*Add http://www.qmul.ac.uk/media/news/items/smd/81841.html
*Add https://en.wikipedia.org/wiki/Controversies_related_to_chronic_fatigue_syndrome
*Add https://twitter.com/TomKindlon/status/677173627532402688
*Add http://www.investinme.org/Article-419%20Professor%20Hooper%20Response%20to%20The%20Observer%20Newspaper%20Aug2011.htmhttp://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx
*Add to Walitt and NIH study pages http://thoughtsaboutme.com/2016/03/21/keep-an-eye-on-your-walitt-nih-study-poses-dramatic-risk-to-long-term-disability-benefits/
*Article to add to Fibromyalgia, Younger and LDN pages http://nationalpainreport.com/fibromyalgia-can-we-crack-the-code-and-put-the-patient-first-8829846.html
*Add this article to Brian Walitt page http://www.cortjohnson.org/forums/threads/brian-walitt-and-the-psychosomaticism-of-fibromyalgia-another-look.3915/
*Make sure this Lightning Process study is on the LP page https://www.ncbi.nlm.nih.gov/pubmed/26983138?dopt=Abstract
*Add a link to this discussion between Elizabeth Dowsett & P. D. Welsby to her page https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2399326/pdf/postmedj00061-0066.pdf
*Add this article (and the study referred to) to Leonard Jason's page (maybe others?) http://www.meaction.net/2016/03/18/study-says-scientists-must-agree-on-classifying-patients/
*Make sure the Ramsay-style criteria created my Shepherd, Goudsmit & Howes is linked to on its own page, and those of the authors http://www.axfordsabode.org.uk/me/mecrit2014.htm
*Pick a page about a person (patient, doctor, researcher, journalist etc) and add a photo to their page.

*Add to NIH page http://www.healthrising.org/blog/2016/05/26/proposal-vastly-increase-funding-mecfs-nih-passes-first-test/
*Make sure this crucial chart of ME quality of life and related study are included and study referenced http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421

*Add to NAC page https://selfhacked.com/2016/05/27/top-25-science-based-health-benefits-n-acetyl-cysteine-nac/
*Add to mitochondria and Eric Gordon pages http://www.gordonmedical.com/unravelling-complex-chronic-illness/gordon-medical-research-center-now-funding-replication-study-on-cfidsme-findings/
*Add to fatigue page http://www.healthrising.org/blog/2016/05/31/fatigue-japanese-way/
*Make sure we have a page on the GETSET trial http://forums.phoenixrising.me/index.php?threads/getset-graded-exercise-therapy-guided-self-help-treatment-getset.44749/
*Make sure the ME Association page link to purple book gets to the latest one http://www.meassociation.org.uk/2016/06/the-eight-edition-of-our-clinical-and-research-masterwork-is-published-today-1-june-2016/
*Add to NK cell and b cell pages and key author pages http://forums.phoenixrising.me/index.php?threads/novel-identification-and-characterisation-of-transient-receptor-potential-melastatin-3-ion-channels.44932/
*Add to Davis page and severely ill study page http://www.meaction.net/2016/06/04/davis-at-invest-in-me-new-severe-patients-data/
*Add to page on Fisetin https://selfhacked.com/2016/06/04/15-science-based-health-benefits-fisetin-1-favorite/
*Add to Davis and mitochondria and severely ill study pages http://www.meaction.net/2016/06/04/ron-davis-errors-metabolism/
*Add to Weardon page, maybe others http://bmcfampract.biomedcentral.com/articles/10.1186/s12875-016-0453-8
*Add to Davis page and list of news articles https://www.thejournal.ie/readme/me-invisible-illness-2792636-Jun2016/
*Add to microbiome page and Simon Carding page https://www.ncbi.nlm.nih.gov/pubmed/27275835
*Add to cognitive dynsfunction page http://www.healthrising.org/blog/2016/06/12/cognition-chronic-fatigue-syndrome-key-findings/
*Add White study http://www.jpsychores.com/article/S0022-3999(16)30327-0/abstract
*Add to vision page http://www.meresearch.org.uk/news/vision-thesis/
*Add to NIH page http://www.occupycfs.com/2016/06/14/responding-to-the-nih-rfi/
*Add to chronic fatigue page, maybe also primer(s)? http://www.self.com/wellness/2016/06/the-difference-between-chronic-fatigue-syndrome-and-extreme-tiredness/
*Add to OMF and/or severely ill study page http://www.openmedicinefoundation.org/expanded-mecfs-metabolomics-study/
*Add to mtDNA page http://www.nytimes.com/2016/06/24/science/mitochondrial-dna-mothers.html
*This appears to be Kew UK Gov archive, add to relevant page for easy access https://valerieeliotsmith.files.wordpress.com/2015/01/natarchbn141dss.pdf

=Suggestions=
'''When a task is complete move it to the COMPLETED section at the bottom of the page'''

*Add Margaret Williams article about PACE criticism http://www.investinme.org/IIME-Newslet-1603-01.htm
*Add this UK TV segment about a patient https://www.youtube.com/watch?v=I8lsRlUhRps&feature=youtu.be Where? Possibly a new page listing TV segments, or a page for each segment, linking to all those featured?
*Pick a member of the OMF advisory board, and make sure we have a page for them giving a summary of who they are. http://me-pedia.org/wiki/Open_Medicine_Foundation
*Read Osler's Web and document key events/people/documents it refers to, linking to the book for readers to learn more.(please note the page# where she discusses the change in fingerprints, add here http://me-pedia.org/wiki/Fingerprint_change)
*Read Mary Dimmock's "Thirty Years of Disdain" and ensure MEpedia covers the key events/people/resources referred to, with citations.
*Read this summary of ME/CFS research, add details to all relevant pages http://paradigmchange.me/me-abnormalities/

==Implement acronyms as a category==
http://me-pedia.org/wiki/List_of_acronyms
:I don't think this is necessary? The current abbreviations page serves its function perfectly, as it is alphabetized, linked and has explanatory notes. A category seems like an unnecessary duplication. --[[User:Samsara|Samsara]] ([[User talk:Samsara|talk]]) 02:18, 3 November 2016 (PDT)

==Historical articles==
Add these articles:

*http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1584694/pdf/canmedaj00332-0046.pdf
*http://jama.jamanetwork.com/article.aspx?articleid=311962
*http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1277260/
*https://books.google.com/books?id=Yoi11TCZSE8C&pg=PA21&lpg=PA21&dq=Lewis+effort+syndrome+mottle&source=bl&ots=FX5vL0oafQ&sig=oGydqO_vAY5zS6A9JEGPxR6vpBI&hl=en&sa=X&ei=rG46VbzsKcWHsQSTlYCgDg&ved=0CC4Q6AEwAg#v=onepage&q=Lewis%20effort%20syndrome%20mottle&f=false
*https://books.google.com/books?id=jtcCAAAAYAAJ&pg=PA76&lpg=PA76&dq=cardiac+phase+of+the+war+neuroses&source=bl&ots=-EvPo4rQJg&sig=wbuUYp39tiPaA4sLRiTHNsAJwWM&hl=en&sa=X&ei=yLY6VbHAMuKIsQSQ84CgAg&ved=0CCoQ6AEwBA#v=onepage&q=cardiac%20phase%20of%20the%20war%20neuroses&f=false
*https://books.google.com/books?id=1AVHAQAAMAAJ&pg=PA1919&lpg=PA1919&dq=irritable+heart+of+soldiers+dacosta+1871&source=bl&ots=yeXur4uyW0&sig=8boB-L18PKPSpqVJAyk2LO9pC9w&hl=en&sa=X&ei=0oE6VZCQL-SwsAT584HQDQ&ved=0CEoQ6AEwCA#v=onepage&q=irritable%20heart%20of%20soldiers%20dacosta%201871&f=false

There are also a very large number of resources here that need to be added: http://forums.phoenixrising.me/index.php?threads/historical-me-research-literature-and-related-information.10282/

==Stem cell treatments==

Info such as at http://www.bbc.com/news/health-35065905 and http://www.prohealth.com/library/showarticle.cfm?libid=14735 would be interesting to have. [[User:Brettz9|Brettz9]] ([[User talk:Brettz9|talk]]) 11:37, 19 January 2016 (PST)

==Treatments==

A great rundown of infections related to ME/CFS and potential treatments. Link can be added to "Further reading" on the [[List of treatments]] page. Information here can also be included on the appropriate pages for specific infectious agents and specific antivirals. https://sites.google.com/site/cfstestingandtreatmentroadmap/ --[[User:JenB|JenB]] ([[User talk:JenB|talk]]) 09:24, 11 December 2015 (PST)

==Basic biochemistry==

* Cross reference with CFS research to all [[Vitamin]] and [[Mineral]] pages Also [[choline]] and [[essential fatty acid]] --[[User:JenB|JenB]] ([[User talk:JenB|talk]]) 11:47, 10 December 2015 (PST)

==Infectious disease==

New study shows that EBV can infect neurons. Apparently we didn't know this before! http://www.meaction.net/2015/12/10/study-shows-epstein-barr-virus-can-infect-human-neurons/ Consider updating the [[Herpesvirus]] page with any relevant information. I think it would be really great to expand the EBV (and really all the herpesvirus pages) with information on the association of these viruses with both [[CFS]] and other diseases, especially those involving [[B cell]]s and the possible infection of nervous tissue. --[[User:JenB|JenB]] ([[User talk:JenB|talk]]) 08:38, 16 March 2016 (PDT)

=Completed=
'''When a task is complete move it HERE'''

*Add https://www.ncbi.nlm.nih.gov/pubmed/27088131
*Add https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2170049/
*Source this chart and add to MEpedia https://twitter.com/mjdesignart/status/732061326420250626
*Add https://www.ncbi.nlm.nih.gov/pubmed/15157711
*Add http://www.meaction.net/2016/05/17/uk-mecfs-biobank-opens-for-business/
*Make sure this study and a copy of the Guardian article are in MEpedia https://twitter.com/JaneCColby/status/734460704607080448 [Note: no digital record of 1997 Guardian article; original journal article cited in Guardian and pdf included under authors and journal pages]
* Create a page for "Cell danger response", link to Wikipedia, link to our mitochondria page (both ways) and add this https://www.ncbi.nlm.nih.gov/pubmed/23981537 [Note: there is no Wikipedia page for cell danger response]
*Add http://trialsjournal.biomedcentral.com/articles/10.1186/1745-6215-14-415
*Add https://grants.nih.gov/grants/guide/notice-files/NOT-NS-16-024.html
*Add https://www.ncbi.nlm.nih.gov/pubmed/8809350
*Add recent White paper on attitudes to treatment http://www.ncbi.nlm.nih.gov/pubmed/27521650
*Fix VanElzakker quote references: http://twitter.com/MBVanElzakker/status/770364493415219200 and http://twitter.com/MBVanElzakker/status/772885740669767680 and http://twitter.com/MBVanElzakker/status/765686260195332096 [Note: These quotes were opted not to be included because better quotes were found.] -- [[User:Kmdenmark|Kmdenmark]]
*Add https://www.ncbi.nlm.nih.gov/pubmed/27118537
*Add https://www.ncbi.nlm.nih.gov/pubmed/10189612
*Add to ME/CFS page, and also consider adding to one or more primers http://www.openmedicinefoundation.org/what-is-mecfs/
*Add to author pages, and a topic page for drugs https://www.ncbi.nlm.nih.gov/pubmed/27229907
*Add http://www.openmedicinefoundation.org/2016/05/17/new-metabolomics-study-begins/ (broken link)
*Add http://www.meaction.net/2016/05/19/dr-hornigs-talk-in-sweden-now-available/
*Add http://www.sheknows.com/health-and-wellness/articles/1119407/chronic-fatigue-syndrome
*Add https://www.ncbi.nlm.nih.gov/pubmed/27177188
*Add https://www.ncbi.nlm.nih.gov/pubmed/10189122
*Add https://www.ncbi.nlm.nih.gov/pubmed/24510231
*Add http://www.jacobspublishers.com/images/Physiology/J_J_Physiology_1_2_007.pdf
*Add https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4482824/
*Add Bateman talk slides http://www.fcclinic.com/SLEEP%20research%20CDC%20talk%20090914%20final.pdf
*Add to LDN page http://scienmag.com/revamped-ldn-site-launched-biggest-patient-initiated-drug-discovery-program-in-history/
*Add https://www.ncbi.nlm.nih.gov/pubmed/10545311
*Add to page on cell danger response https://www.ncbi.nlm.nih.gov/pubmed/23981537
*Add http://m.chi.sagepub.com/content/early/2016/04/22/1742395316644770.abstract (link broken)
*Ensure all the studies from this excellent document are in the relevant pages (topics, authors) in MEpedia https://drive.google.com/file/d/0B_Dn3IXWlI9fTGdpSjkzcmtWRUU/view
*Add Tuller/Racaniello pieces to Tuller & PACE pages http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ http://www.virology.ws/2016/09/06/open-letter-to-queen-mary-university-london-about-pace/ http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/
*Add the infamous house of lords discussion from 2013 to PACE and countess of mar pages https://youtu.be/Fo5hdL7zXxQ?t=1 and the transcript http://www.meassociation.org.uk/2013/02/house-of-lords-debates-the-pace-trial-verbatim-report-and-youtube-6-february-2013/
*Add http://www.virology.ws/2016/05/23/an-open-letter-to-plos-one/
*Add article by QMUL student http://theprintnews.co.uk/2016/01/scientists-demand-transparency-on-pace-trial/
*Add blog post data release http://www.thefacultylounge.org/2016/09/the-pace-study-results-exposed-as-meaningless-and-harmful.html
*Add Rehmeyer Statnews piece https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/
*Add news coverage of data release http://www.appliedclinicaltrialsonline.com/tribunal-orders-release-withheld-data-london-trial and http://www.sbs.com.au/news/thefeed/article/2016/08/29/do-you-suffer-chronic-fatigue-syndrome-theres-some-good-news-you and http://www.wsj.com/articles/patients-scientists-fight-over-research-data-access-1457394712 http://www.meaction.net/2016/09/09/qmul-releases-pace-data/ https://www.wddty.com/news/2016/09/chronic-fatigue-sufferers-getting-the-wrong-treatment-thanks-to-a-falsified-study.html http://nymag.com/scienceofus/2016/09/a-big-chronic-fatigue-syndrome-study-has-been-discredited.html?mid=twitter-share-scienceofus http://occupyme.net/2016/09/21/pace-grossly-exaggerated/ http://uk.businessinsider.com/flawed-lancet-study-me-cfs-chronic-fatigue-2016-9
*Add http://www.simonwessely.com/Downloads/Publications/CFS/85.pdf
*Add http://dspace.nwu.ac.za/handle/10394/17668
*Add to Maryann Spurgin page http://www.meadvocacy.org/circulatory_impairment
*Add this new Marshall-Gradisnik study to all relevant pages https://www.ncbi.nlm.nih.gov/pubmed/27001659
*Add http://link.springer.com/article/10.1007%2Fs11306-015-0816-5
*Add to CMRC page http://www.meresearch.org.uk/news/cmrc-agm-2016-conference-news/
*Add https://valerieeliotsmith.files.wordpress.com/2016/04/010-090216-r2-matthees_main_response.pdf
*Add Nath talk https://www.youtube.com/watch?v=g8z-v1F6Ax0
*Add this 2011 Klimas talk to her page https://www.youtube.com/watch?v=UMimz3iDk0s
*Add to the quotations page the quote from Nancy Klimas where she said she'd choose HIV over ME/CFS
*Add to Unumatz page http://www.eurekalert.org/pub_releases/2016-06/jl-nft060716.php
*Add https://www.youtube.com/watch?v=wsUhaGEKXBg
*Add http://www.occupycfs.com/2016/05/21/cfs-advisory-committee-meeting-outcomes/
*Add to [[Enterovirus]] http://www.ncbi.nlm.nih.gov/pubmed/2161907
*Add to Neil McGregor page https://meaustralia.net/2016/08/08/meet-the-scientists-dr-neil-mcgregor/
*Add https://twitter.com/TomKindlon/status/680141293863829505?s=09
*Add the Morris/Maes papers to both their pages and relevant topic pages, a list is here http://forums.phoenixrising.me/index.php?threads/can-you-help-working-on-mitochondria-page.45729/page-2#post-744173
*Add to Q Fever page https://cfsremission.wordpress.com/2016/05/28/post-infection-fatigue/
*Add to NIH page http://forums.phoenixrising.me/index.php?threads/transcript-of-dr-vicky-whittemores-me-cfs-proposal-to-the-nih-council-26-may-2016.44845/
*Add http://www.huffingtonpost.com/maureen-hanson/be-aware-and-beware-chron_b_10057510.html
*Add to IiME conference page http://www.healthrising.org/blog/2016/06/09/bacteria-brainstem-rituximab-progress-invest-me-chronic-fatigue-syndrome/
*Add to IiME conference page http://phoenixrising.me/archives/28153
*Add this article on three "biomarkers" for the disease to relevant pages http://www.mecfsnsw.org.au/research/three-new-biomarkers-for-mecfs/
*Add these THREE segments of interview with Alan Light https://www.youtube.com/watch?v=ZZyXUL7CPks&feature=youtu.be
*Add book http://www.meaction.net/2016/06/16/new-mecfs-book-lighting-up-a-hidden-world/
*Add Lucibee article on PACE and Chalder fatigue scale (she was a sub-editor at Lancet). Also find her previous article on PACE and add that. Also add to Chalder page, and possibly also a new page on the Chalder Fatigue Scale itself to explain it. https://lucibee.wordpress.com/2016/04/02/fatigued-by-scales-as-outcome-measures/ Here's a link to the Chalder Fatigue Scale http://www.goodmedicine.org.uk/files/assessment,%20chalder%20fatigue%20scale.pdf Also study https://www.ncbi.nlm.nih.gov/pubmed/8463991
*Add to Chalder Fatigue Scale page http://evaluatingpace.phoenixrising.me/aps3chalder.html
*Add disease symptom scale, and somehow group all symptom scales (lerner, bell, chalder, de paul, etc) https://twitter.com/TomKindlon/status/721423210919669760?s=09
*Add https://afectadasporlosrecortessanitarios.wordpress.com/2016/05/11/risk-of-suicide-due-to-neglect-amongst-pwme/ added to [[Spain]], [[Epidemiology]], [[Suicide]]
*Add this study to the GET page https://www.ncbi.nlm.nih.gov/pubmed/26995250
*Add new blog post about Karina Hansen to her page http://valerieeliotsmith.com/2016/04/04/karina-hansen-4-timeline-torture-tragedy/
*Add article to Lyme page http://www.perthnow.com.au/news/western-australia/lyme-disease-a-ticking-timebomb-that-health-authorities-say-does-not-exist/story-fnhocxo3-1226886911487
*Add to melatonin page https://www.ncbi.nlm.nih.gov/pubmed/27226183
*Pick a country page and make sure there is a flag image on it (use one that's about 200 pixels wide to avoid the need for a thumbnail image, which is currently broken).
*Add https://www.ncbi.nlm.nih.gov/pubmed/9861623
*Add this interview with Susan Levine to her page https://www.youtube.com/watch?v=Akc5upzbFxs&feature=youtu.be
*Add a photo of Ampligen to the page
*copy Tuller articles from PACE Trial to Tuller page (already done by someone)
*Make sure the Glenn Beck page links back to this post https://www.facebook.com/GlennBeck/posts/10153736242213188
*Add FINE consent form http://retractionwatch.com/wp-content/uploads/2016/05/11.4.16-Mitchell-Response-consent-form-version3-MREC-2460904.pdf
*Add to FINE page https://forbetterscience.wordpress.com/2016/05/20/plos-correction-removes-previously-available-anonymised-patient-clinical-trial-data/
*Add to IBS page https://jcoynester.wordpress.com/2016/05/21/no-irritable-bowel-syndrome-is-not-all-in-your-head/
*Add to MTHFR page https://selfhacked.com/2016/05/18/need-know-mthfr-genespolymorphisms-c677t-rs1801133/
*Add to Rikva Solomon page https://www.statnews.com/2016/05/24/chronic-fatigue-syndrome-myalgic-encephalomyelitis/
*Add to Tom Kindlon page https://www.pinterest.com/tomkindlon/
*Add this article about preliminary findings from Davis work to pages for Davis, Mitochondria, End ME/CFS Project, and Naviaux pages http://www.cortjohnson.org/forums/threads/end-me-cfs-severe-patient-study-turns-to-the-mitochondria.3949/page-2
*Add this article to Learn More section of NIH study page http://www.medpagetoday.com/Neurology/GeneralNeurology/56772
*Add this interview with Jennifer Brea to her page in "Talks & interviews" section https://secure-ec.libsyn.com/p/1/c/3/1c390d4707a99658/WMCLive_Episode159.mp3?d13a76d516d9dec20c3d276ce028ed5089ab1ce3dae902ea1d06cd8f33d6cd5b120e&c_id=11198959
*Make sure the Fukuda/CDC criteria page includes a link to the actual criteria definition: http://www.cfids-me.org/cdcdefine.html
*Make sure Alan Light's gene expression chart that so strikingly shows the effects of exercise on patients is included in MEpedia.(Pace Trial)
*Add educational video on central nervous system https://www.youtube.com/watch?v=q8NtmDrb_qo (Nervous System)
*Add educational video on autonomic nervous system https://www.youtube.com/watch?v=71pCilo8k4M (and POTS & OI pages?)
*Add educational video on parasympathetic nervous system https://www.youtube.com/watch?v=qqU-VjqjczE (Nervous System)
*Add educational video on sympathetic nervous system https://www.youtube.com/watch?v=0IDgBlCHVsA (Nervous System)
*Look over the original study and add new information to [[Epstein-Barr virus]] page http://www.meaction.net/2015/12/10/study-shows-epstein-barr-virus-can-infect-human-neurons/
*Add https://batemanhornecenter.org/link-between-gut-microbiome-and-pem/
*Add this article on PEM to the PEM page http://me-cfs.se/blogg/suggestion-to-replace-pem-by-par/
*Add this study to PEM page, Zinn pages, Jason page, maybe others https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4761639/#!po=2.51799
*Add this study to page on cognitive symptoms https://www.ncbi.nlm.nih.gov/pubmed/27032787
*Replace this page with a category and ensure all sub-pages are categorised into a useful structure http://me-pedia.org/wiki/Research_initiatives_Europe
*Replace this page with a category http://me-pedia.org/wiki/Clinical_doctors_worldwide categorise all pages within it
*Replace this page with a category http://me-pedia.org/wiki/Patient_Groups_Worldwide
*Add article to Shirley Conran page http://www.dailymail.co.uk/femail/article-3511666/The-one-lesson-ve-learned-life-Author-Shirley-Conran-surviving-ME.html
*Make sure this recent update by IiME on their Rituximab research is included on the Rituximab page under Learn more http://www.ukrituximabtrial.org/Rituximab%20news-Mar16%2001.htm
*Add photos (pre-illness and post) to Whitney Dafoe's page http://me-pedia.org/wiki/Whitney_Dafoe
*Add Ampligen http://www.fda.gov/downloads/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/ArthritisAdvisoryCommittee/UCM334430.pdf
*Add vitamin B study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1297139/
*Add this Lassesen article to the LDS page under Learn More https://cfsremission.wordpress.com/2016/03/19/review-of-low-dose-naltrexone/
*Add latest video (with Q&A) to PACE page and Tuller page. On the video Tuller states he was involved in Act Up, please add that fact to his page. https://www.youtube.com/watch?v=1fS6Gzc52VI
*Added the appropriate Linus Pauling Institute page to all vitamins and minerals pages
*Add this Mary Schweitzer post to the NIH study page http://slightlyalive.blogspot.co.uk/2016/03/open-letter-to-dr-sanjay-gupta-on-in.html
*Add https://www.youtube.com/watch?v=bCUvygbYdXs
*Add https://www.ncbi.nlm.nih.gov/pubmed/10209352
*Make sure this study is linked to from the natural killer cell page https://www.dovepress.com/articles.php?article_id=26236
*Add this Norwegian TV segment about Rituximab (and private availability) to Rituximab page https://www.youtube.com/watch?v=MfqJWRhgVx0&feature=youtu.be
https://dl.dropboxusercontent.com/u/23608059/simon%20on%20eysenck.pdf
*Add this study on endothelial function by Julia Newton https://www.ncbi.nlm.nih.gov/pubmed/22078396
*Add https://www.ncbi.nlm.nih.gov/pubmed/10535608
*Add http://solvecfs.org/spring-chronicle/spring-chronicle-2016.pdf
*Add http://www.meaction.net/2016/04/24/transcript-solve-mecfs-interviews-dr-avi-nath/
*Add SPECT study https://www.ncbi.nlm.nih.gov/pubmed/1491843
*Add https://twitter.com/EUROMEALL
*Add https://www.ncbi.nlm.nih.gov/pubmed/9476743
*Add https://www.youtube.com/watch?v=87zAPTEtxas
*Add https://www.youtube.com/watch?v=wJB95m4FLa0&feature=youtu.be
*Add Ron Davis MM interview to his page https://www.youtube.com/watch?v=fiSPS85sTkw&feature=youtu.be
*Make sure the IACFS name change definition is included http://iacfsme.org/ME-CFS-Primer-Education/Pages/ME-CFS-Name-Change.aspx
*Add http://iacfsme.org/PDFS/2016MayNesletter/Attachment-08-Dr-Keith-Geraghty-Doing-CFS-research.aspx
*Add https://www.ncbi.nlm.nih.gov/pubmed/27088059
*Make sure this study is linked to on the Carnitine page https://www.ncbi.nlm.nih.gov/pubmed/8148455
*Add http://www.meadvocacy.org/eileen_holderman_cfsac_public_comment_about_nih_study
*Add http://stanmed.stanford.edu/2016spring/the-puzzle-solver.html
*Add https://www.ncbi.nlm.nih.gov/pubmed/27091026
*Add https://www.ncbi.nlm.nih.gov/pubmed/9226729
*Add https://www.ncbi.nlm.nih.gov/pubmed/9170115
*Add quote on quotations, cause of death and Chu pages https://twitter.com/TomKindlon/status/728660598125408257?s=09
*Add https://www.ncbi.nlm.nih.gov/pubmed/19228959
*Add http://www.healthrising.org/forums/threads/an-eye-on-the-mitochondria-man-robert-naviaux-and-chronic-fatigue-syndrome-me-cfs.4163/
*Add https://www.ncbi.nlm.nih.gov/pubmed/9149090
*Add a picture of Rituximab to the Rituximab page
*Make sure the IOM report page includes a link to their brief summary: http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf
*Add to POTS page http://hic.sagepub.com/content/2/1/2324709614527812.full
*Add ritux update http://www.healthrising.org/forums/threads/rituximab-study-update-researchers-focus-on-rare-gene-variant.4319/
*Add https://batemanhornecenter.org/uncovering-biomarkers-fcg-receptors/
*Add https://www.facebook.com/notes/jan-van-roijen/re-dr-avi-nath-me/10154382672523322
*Add https://www.youtube.com/watch?v=li7zQgN-PxQ&feature=youtu.be
*Add https://www.youtube.com/watch?v=xMcZ-UTlRmU&feature=youtu.be
*Make sure this study is on author pages and maybe elsewhere too https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4761639/#!po=2.51799
*Make sure this study is on NK cell page https://www.ncbi.nlm.nih.gov/pubmed/2824604
*Add to POTS page http://forums.phoenixrising.me/index.php?threads/is-postural-orthostatic-tachycardia-a-useful-diagnostic-marker-in-chronic-fatigue-syndrome-patients.44915/
*Make sure this study is linked to from the HHV6 page https://twitter.com/EricaVerrillo/status/715599637021859840?s=09
*Add https://www.ncbi.nlm.nih.gov/pubmed/27187093
*Add to microbiome page https://cfsremission.wordpress.com/2016/06/25/83-accuracy-in-mecfs-diagnosis-with-microbiome-analysis/
*Add https://www.ncbi.nlm.nih.gov/pubmed/27223465
*On the home page click on "Immune exhaustion hypothesis" to create the page, and add this article to it (and for extra points, the studies referenced, you may be able to copy & paste from eg the Hornig page) http://simmaronresearch.com/2016/03/are-chronic-fatigue-syndrome-mecfs-and-fibromyalgia-immune-exhaustion-disorders/
*Pick a member of the IOM report committee and ensure we have a page on who they are [[Institute_of_Medicine_report]] page
*Add this Q-fever article on persistence post-infection http://qjmed.oxfordjournals.org/content/95/12/832.long
*Make sure we have a page (however small/simple) on the Canadian Criteria, that links to the criteria document: http://www.investinme.org/Documents/PDFdocuments/Canadian_ME_Overview_A4.pdf
*Immunosuppression from Rituximab may cause reactivation of a persistent enteroviral infection with potentially dangerous neurological complications http://www.sciencedirect.com/science/article/pii/S0042682210007683
*Make sure this article is on the list of articles about MECFS http://www.huffingtonpost.com/-stephanie-land/chronic-fatigue-syndrome-_1_b_9513498.html

[[Category:User to-dos]]
[[Category:MEpedia guidelines]]

File:Mecfshand0.jpg

2018-05-21T17:22:26Z

Ulli:Macro photo of fingers to show lines on fingerprints (Personal photo of patient)

Macro photo of fingers to show lines on fingerprints
(Personal photo of patient)

Fingerprint change

2018-05-21T07:33:43Z

Ulli:added to overview,add reference, mentioned pic

Sign or symptom

according to Dr Paul Cheney, around 50% of mecfs patients have fingerprint changes that may show as faded prints and/or lines across the fingerprints, horizontal and vertical. This may also happen with Lyme, celiac, and autoimmune disorders, but it's extremely rare in the general population. May also be called fingerprint atrophy.

==Learn more==
*https://nopostergirl.com/2011/02/27/the-fact-of-fingerprints
Has a helpful slide from Dr. Cheney showing difference in appearance

*http://www.tldp.com/issue/157-8/157pub.htm
Townsend letter

==See also==
osler's web by Hillary Johnson (page #?)

Stricken - Voices From the Hidden Epidemic of Chronic Fatigue Syndrome by Peggy Munson

chapter 14 The Paradox of Lost Fingerprints: Metaphor and the Shaming of Chronic Fatigue Syndrome

==References==
<references>
osler's web by Hillary Johnson (page #?)

Townsend letter http://www.tldp.com/issue/157-8/157pub.htm

https://nopostergirl.com/2011/02/27/the-fact-of-fingerprints/

https://www.naturopathic.org/article_content.asp?edition=105&section=161&article=988
(Has 3 sources about celiac fingerprint atrophy)

</references>

[[Category:Signs and symptoms]]

Fingerprint change

2018-05-21T06:57:16Z

Ulli:/* See also */ added reference to book

Sign or symptom

40 to 50% of mecfs patients have fingerprint changes that may show as faded prints or lines across the fingerprints, horizontal and vertical.

==Learn more==
*https://nopostergirl.com/2011/02/27/the-fact-of-fingerprints

Townsend letter
*http://www.tldp.com/issue/157-8/157pub.htm

==See also==
osler's web by Hillary Johnson (page #?)

Stricken - Voices From the Hidden Epidemic of Chronic Fatigue Syndrome by Peggy Munson
chapter 14 The Paradox of Lost Fingerprints: Metaphor and the Shaming of Chronic Fatigue Syndrome

==References==
<references>
osler's web by Hillary Johnson (page #?)

Townsend letter http://www.tldp.com/issue/157-8/157pub.htm

https://nopostergirl.com/2011/02/27/the-fact-of-fingerprints/

</references>

[[Category:Signs and symptoms]]

Fingerprint change

2018-05-21T06:06:45Z

Ulli:/* See also */ added reference to book

Sign or symptom

40 to 50% of mecfs patients have fingerprint changes that may show as faded prints or lines across the fingerprints, horizontal and vertical.

==Learn more==
*https://nopostergirl.com/2011/02/27/the-fact-of-fingerprints

Townsend letter
*http://www.tldp.com/issue/157-8/157pub.htm

==See also==
osler's web by Hillary Johnson (page #?)

==References==
<references>
osler's web by Hillary Johnson (page #?)

Townsend letter http://www.tldp.com/issue/157-8/157pub.htm

https://nopostergirl.com/2011/02/27/the-fact-of-fingerprints/

</references>

[[Category:Signs and symptoms]]

Fingerprint change

2018-05-21T06:04:07Z

Ulli:/* Learn more */ add link

Sign or symptom

40 to 50% of mecfs patients have fingerprint changes that may show as faded prints or lines across the fingerprints, horizontal and vertical.

==Learn more==
*https://nopostergirl.com/2011/02/27/the-fact-of-fingerprints

Townsend letter
*http://www.tldp.com/issue/157-8/157pub.htm

==See also==

==References==
<references>
osler's web by Hillary Johnson (page #?)

Townsend letter http://www.tldp.com/issue/157-8/157pub.htm

https://nopostergirl.com/2011/02/27/the-fact-of-fingerprints/

</references>

[[Category:Signs and symptoms]]

Fingerprint change

2018-05-21T06:01:32Z

Ulli:/* Learn more */ add link

Sign or symptom

40 to 50% of mecfs patients have fingerprint changes that may show as faded prints or lines across the fingerprints, horizontal and vertical.

==Learn more==
*https://nopostergirl.com/2011/02/27/the-fact-of-fingerprints

==See also==

==References==
<references>
osler's web by Hillary Johnson (page #?)

Townsend letter http://www.tldp.com/issue/157-8/157pub.htm

https://nopostergirl.com/2011/02/27/the-fact-of-fingerprints/

</references>

[[Category:Signs and symptoms]]

Fingerprint change

2018-05-21T05:59:13Z

Ulli:added outline, summary sentence

Sign or symptom

40 to 50% of mecfs patients have fingerprint changes that may show as faded prints or lines across the fingerprints, horizontal and vertical.

==Learn more==
*Wikipedia

==See also==

==References==
<references>
osler's web by Hillary Johnson (page #?)

Townsend letter http://www.tldp.com/issue/157-8/157pub.htm

https://nopostergirl.com/2011/02/27/the-fact-of-fingerprints/

</references>

[[Category:Signs and symptoms]]

Fingerprint change

2018-05-20T23:01:43Z

Ulli:start. added sources,not formatted

Sources

osler s web (page #?)

Townsend letter http://www.tldp.com/issue/157-8/157pub.htm

https://nopostergirl.com/2011/02/27/the-fact-of-fingerprints/