MEpedia:Suggested tasks
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 [[Category:User to-dos]] to your subpage article. It will then show up at Category:User to-dos.
Suggestions - Five Minute Tasks[edit | edit source]
When a task is complete move it to the COMPLETED section at the bottom of the page
- Add study https://www.ncbi.nlm.nih.gov/pubmed/1282370
- Add study https://www.ncbi.nlm.nih.gov/pubmed/1446478
- 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 study https://www.ncbi.nlm.nih.gov/pubmed/1337562
- Add NK study https://www.ncbi.nlm.nih.gov/pubmed/1287238
- Add SPECT study https://www.ncbi.nlm.nih.gov/pubmed/1491843
- Add this article to Cort Johnson page http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=28684
- Add photos (pre-illness and post) to Whitney Dafoe's page http://me-pedia.org/wiki/Whitney_Dafoe
- Add this new Marshall-Gradisnik study to all relevant pages https://www.ncbi.nlm.nih.gov/pubmed/27001659
- 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
- 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://twitter.com/TomKindlon/status/680141293863829505?s=09
- 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 http://www.meaction.net/2015/12/21/nih-considering-ampligen-and-rituximab-trials/
- 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 https://cfsremission.wordpress.com/2015/12/19/exercise-alteration-of-the-cfs-microbiome/
- 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 https://twitter.com/EUROMEALL
- Add http://www.simonwessely.com/Downloads/Publications/CFS/85.pdf
- Add https://www.youtube.com/watch?v=li7zQgN-PxQ&feature=youtu.be
- Add Ampligen http://www.fda.gov/downloads/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/ArthritisAdvisoryCommittee/UCM334430.pdf
- Add https://www.youtube.com/watch?v=xMcZ-UTlRmU&feature=youtu.be
- 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 LDN page http://scienmag.com/revamped-ldn-site-launched-biggest-patient-initiated-drug-discovery-program-in-history/
- 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/
- Add to POTS page http://hic.sagepub.com/content/2/1/2324709614527812.full
- 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
- 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/
- Add this article on three "biomarkers" for the disease to relevant pages http://www.mecfsnsw.org.au/research/three-new-biomarkers-for-mecfs/
- 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/
- Add this study to the GET page https://www.ncbi.nlm.nih.gov/pubmed/26995250
- Add this interview with Susan Levine to her page https://www.youtube.com/watch?v=Akc5upzbFxs&feature=youtu.be
- 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
- 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
- Make sure the IACFS name change definition is included http://iacfsme.org/ME-CFS-Primer-Education/Pages/ME-CFS-Name-Change.aspx
- 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
- 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
- Add this Lassesen article to the LDS page under Learn More https://cfsremission.wordpress.com/2016/03/19/review-of-low-dose-naltrexone/
- 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).
- Pick a page about a person (patient, doctor, researcher, journalist etc) and add a photo to their page.
[edit | edit source]
- add quotes from recent Coyne and Tuller articles (see 'completed' list)
- copy Coyne articles from PACE Trial and Cochrane page, to Coyne page
- copy Tuller articles from PACE Trial to Tuller page
- Add http://andrewgelman.com/2016/01/05/pace-study-and-the-lancet-journal-reputation-is-a-two-way-street/
- Add http://andrewgelman.com/2015/12/25/more-on-the-pace-chronic-disease-syndrome-study-scandal/
- Add http://andrewgelman.com/2015/12/25/more-on-the-pace-chronic-disease-syndrome-study-scandal/ (AND OTHERS!). Pick out quotes.
- Add https://www.facebook.com/notes/peter-kemp/the-pace-trial-spinning-the-results-to-the-media/1206334246049385
- Add http://steamtraen.blogspot.co.uk/2015/12/my-current-position-on-pace-trial.html?showComment=1450133140176#c141970579755405430
- Add http://evaluatingpace.phoenixrising.me/PACE_Protocol.pdf
- Add http://blogs.bmj.com/bmj/2015/12/16/richard-smith-qmul-and-kings-college-should-release-data-from-the-pace-trial/
- Add http://retractionwatch.com/2015/12/16/plos-one-issues-editors-note-over-disputed-chronic-fatigue-research/
- Add https://valerieeliotsmith.files.wordpress.com/2015/12/foia-request-to-qmul-re-no-of-pace-requests.pdf
- Add http://www.statnews.com/2015/12/23/sharing-data-science/
- Add http://forums.phoenixrising.me/index.php?threads/peter-white-complaining-about-pace-trial-foi-request-and-calling-for-changes-to-foi-laws.42027/
- Add http://niceguidelines.blogspot.co.uk/2015/12/principal-investigators-of-pace-and.html
Suggestions - High Priority[edit | edit source]
When a task is complete move it to the COMPLETED section at the bottom of the page
- Add the Stats.org editorial & 7,000 word criticism to the PACE page :
- (COMPLETED) Make sure both articles are cited
- {COMPLETED) Add select quotes from either/both to the Quotations section, eg "The PACE design changed so significantly as to leave many wondering whether there is value in the study itself."
- (COMPLETED) They include a list of media articles from 2011 following PACE publication, ALL of these need adding to the media coverage section, as example of the poor quality of the journalism
- 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/)
- Add categories for all main page entries (in preparation for move to use category listing extension)
- Add a 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[edit | edit source]
When a task is complete move it to the COMPLETED section at the bottom of the page
- 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
- Pick a member of the IOM report committee and ensure we have a page on who they are
Implement acronyms as a category[edit | edit source]
http://me-pedia.org/wiki/List_of_acronyms
Stem cell treatments[edit | edit source]
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. Brettz9 (talk) 11:37, 19 January 2016 (PST)
Treatments[edit | edit source]
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/ --JenB (talk) 09:24, 11 December 2015 (PST)
Basic biochemistry[edit | edit source]
- Add under "Further reading" to all Vitamin and Mineral pages the appropriate Linus Pauling Institute page http://lpi.oregonstate.edu/mic/vitamins http://lpi.oregonstate.edu/mic/minerals Also choline http://lpi.oregonstate.edu/mic/other-nutrients/choline and essential fatty acids http://lpi.oregonstate.edu/mic/other-nutrients/essential-fatty-acids Cross reference with CFS research --JenB (talk) 11:47, 10 December 2015 (PST)
Infectious disease[edit | edit source]
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 cells and the possible infection of nervous tissue. --JenB (talk) 08:38, 16 March 2016 (PDT)
Completed[edit | edit source]
When a task is complete move it HERE
- 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
[edit | edit source]
- Add PACE protocol http://www.meactionuk.org.uk/FULL-Protocol-SEARCHABLE-version.pdf
- Add http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter1.pdf
- Add http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter2.pdf
- Add http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter3.pdf
- Add http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter4.pdf
- Add http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00114-5/fulltext
- Check this Lancet editorial from 2011 is referred to on the PACE trial page http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60696-X/fulltext
- Add James Coyne's Belfast talk video to his page and the PACE page https://www.youtube.com/watch?v=8jHRNxMOAjA&feature=youtu.be
- Add https://jcoynester.wordpress.com/2016/03/26/we-dont-share-data-why-peter-whites-wall-street-journal-letter-can-be-ignored/ to PACE page on data release
- Add https://jcoynester.wordpress.com/2016/03/20/why-the-cochrane-collaboration-needs-to-clean-up-conflicts-of-interest/
article criticising Cochrane to his page, PACE page & Cochrane page
- Add https://jcoynester.wordpress.com/2016/01/05/undisclosed-conflicts-of-interest-in-a-systematic-review-protocol-of-interventions-for-medically-unexplained-symptoms/
- Add https://jcoynester.wordpress.com/2016/01/02/glimpses-into-the-assault-on-data-sharing/
- Add https://jcoynester.wordpress.com/2015/12/22/recognizing-when-protecting-patient-privacy-is-mere-excuse-for-not-sharing-data/
- Add https://jcoynester.wordpress.com/2015/12/18/kings-college-london-stalls-some-more-reiterating-refusal-to-release-the-pace-trial-data/
- Add http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/
- Add http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/
- Add http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/