MEpedia:Suggested tasks: Difference between revisions
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'''When a task is complete move it HERE''' | '''When a task is complete move it HERE''' | ||
*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 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 article to Learn More section of NIH study page http://www.medpagetoday.com/Neurology/GeneralNeurology/56772 |
Revision as of 02:49, May 25, 2016
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 to Rikva Solomon page https://www.statnews.com/2016/05/24/chronic-fatigue-syndrome-myalgic-encephalomyelitis/
- Add https://grants.nih.gov/grants/guide/notice-files/NOT-NS-16-024.html
- Add http://www.healthrising.org/blog/2016/04/06/immune-system-fatigue-brain-me-cfs-fibromyalia/
- Add https://www.ncbi.nlm.nih.gov/pubmed/10535608
- Add https://www.ncbi.nlm.nih.gov/pubmed/10545311
- Make sure MEpedia covers the GETSET study https://spoonseeker.com/2016/05/23/a-few-notes-on-getset/
- Add http://trialsjournal.biomedcentral.com/articles/10.1186/1745-6215-14-415
- Add https://twitter.com/Firestormmer/status/734650703847784449
- Make sure this study and a copy of the Guardian article are in MEpedia https://twitter.com/JaneCColby/status/734460704607080448
- Add https://afectadasporlosrecortessanitarios.wordpress.com/2016/05/11/risk-of-suicide-due-to-neglect-amongst-pwme/
- Add vitamin B study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1297139/
- Add podcast link https://twitter.com/MBVanElzakker/status/734277452009201664
- Add to IBS page https://jcoynester.wordpress.com/2016/05/21/no-irritable-bowel-syndrome-is-not-all-in-your-head/
- Add http://www.occupycfs.com/2016/05/21/cfs-advisory-committee-meeting-outcomes/
- Add https://www.youtube.com/watch?v=wJB95m4FLa0&feature=youtu.be
- Add https://www.youtube.com/watch?v=bCUvygbYdXs
- Add http://www.huffingtonpost.com/maureen-hanson/be-aware-and-beware-chron_b_10057510.html
- Add http://www.freezepage.com/1374761286EFCHIYENBE
- Add http://www.meadvocacy.org/eileen_holderman_cfsac_public_comment_about_nih_study
- Add http://www.healthrising.org/blog/2016/05/19/25-disease-chronic-fatigue-syndrome-mecfs-unique-many-people-homebound/
- Add to mitochondria, naviaux and OMF pages http://www.healthrising.org/blog/2016/05/19/mitochondria-man-gets-money-uk-goes-mega-chronic-fatigue-syndrome-research-moves-forward/
- Add http://www.meaction.net/2016/05/19/dr-hornigs-talk-in-sweden-now-available/
- Add http://www.meaction.net/2016/05/18/uk-plans-worlds-biggest-biomedical-mecfs-study/
- Add https://www.ncbi.nlm.nih.gov/pubmed/27187093
- Add to MTHFR page https://selfhacked.com/2016/05/18/need-know-mthfr-genespolymorphisms-c677t-rs1801133/
- 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 https://www.ncbi.nlm.nih.gov/pubmed/15157711
- 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 https://www.ncbi.nlm.nih.gov/pubmed/10209352
- Add https://www.ncbi.nlm.nih.gov/pubmed/10189612
- Add https://www.ncbi.nlm.nih.gov/pubmed/10189122
- Add http://www.meaction.net/2016/05/17/uk-mecfs-biobank-opens-for-business/
- Add http://www.openmedicinefoundation.org/2016/05/17/new-metabolomics-study-begins/
- Add http://solvecfs.org/spring-chronicle/spring-chronicle-2016.pdf
- 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 http://m.chi.sagepub.com/content/early/2016/04/22/1742395316644770.abstract
- Add new page for MEGA UK study https://www.actionforme.org.uk/news/mega-new-me-research-project/#.Vzn9sbBp4gk.twitter
- Add http://stanmed.stanford.edu/2016spring/the-puzzle-solver.html
- Add http://trialsjournal.biomedcentral.com/articles/10.1186/1745-6215-14-415
- Add http://www.meaction.net/2016/05/15/brain-connectivity-problems-causing-signalling-problems/
- Source this chart and add to MEpedia https://twitter.com/mjdesignart/status/732061326420250626
- 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 https://www.ncbi.nlm.nih.gov/pubmed/9861623
- Add to MAGENTA page http://apps.who.int/trialsearch/Trial2.aspx?TrialID=ISRCTN23962803
- Add ritux update http://www.healthrising.org/forums/threads/rituximab-study-update-researchers-focus-on-rare-gene-variant.4319/
- Add https://www.ncbi.nlm.nih.gov/pubmed/27177188
- Add http://www.theestablishment.co/2016/05/13/the-hidden-battle-for-the-rights-of-chronic-fatigue-syndrome-sufferers/
- Add to the quotations page the quote from Nancy Klimas where she said she'd choose HIV over ME/CFS
- Add http://www.sheknows.com/health-and-wellness/articles/1119407/chronic-fatigue-syndrome
- Add https://cfsremission.wordpress.com/2016/05/14/cortisol-cfs-and-microbiome/
- Add https://www.youtube.com/watch?v=87zAPTEtxas
- 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://grants.nih.gov/grants/guide/notice-files/NOT-AI-16-046.html
- 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 https://www.youtube.com/watch?v=wsUhaGEKXBg
- Make sure the Glenn Beck page links to this post https://www.facebook.com/GlennBeck/posts/10153736242213188
- 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 https://twitter.com/TomKindlon/status/729039610924371969?s=09
- Add http://healthy-magazines.com/chronic-fatigue-syndrome-mecfs-uncovering-mystery/
- Add quote on quotations, cause of death and Chu pages https://twitter.com/TomKindlon/status/728660598125408257?s=09
- Add https://www.researchgate.net/publication/283476227_Psychogenic_explanations_of_physical_illness_Time_to_examine_the_evidence
- http://iacfsme.org/PDFS/2016MayNesletter/Attachment-03-Dr-Lily-Chu-ME-CFS-and-suicide.aspx
- 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://iacfsme.org/PDFS/2016MayNesletter/Attachment-08-Dr-Keith-Geraghty-Doing-CFS-research.aspx
- Add https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2170049/
- Add https://www.ncbi.nlm.nih.gov/pubmed/9476743
- Update blood donation page with http://www.nhsbt.nhs.uk/news-and-media/news-archive/news_2010_10_07.asp and https://twitter.com/velogubbed/status/727601250473259009 and https://aprescriptionforme.wordpress.com/2015/06/18/can-people-with-m-e-give-blood-and-organs/
- Add http://www.meactionuk.org.uk/Response-to-Dr-Stuart-Spencer.htm
- Add https://selfhacked.com/2016/05/03/mmp9/
- Add to Wessely page https://dl.dropboxusercontent.com/u/23608059/simon%20on%20eysenck.pdf
- 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://www.ncbi.nlm.nih.gov/pubmed/24510231
- 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 https://www.ncbi.nlm.nih.gov/pubmed/9226729
- Add http://www.healthrising.org/forums/threads/can-simple-blood-tests-help-to-identify-chronic-fatigue-syndrome-me-cfs.4228/
- Add https://www.facebook.com/notes/jan-van-roijen/re-dr-avi-nath-me/10154382672523322
- 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/27118537
- 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/9170115
- 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 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://www.meaction.net/2016/04/24/transcript-solve-mecfs-interviews-dr-avi-nath/
- Add https://www.ncbi.nlm.nih.gov/pubmed/19228959
- Add Nath talk https://www.youtube.com/watch?v=g8z-v1F6Ax0
- Add Bateman talk slides http://www.fcclinic.com/SLEEP%20research%20CDC%20talk%20090914%20final.pdf
- 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/8809350
- Add https://www.ncbi.nlm.nih.gov/pubmed/27095328
- 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/27091026
- Add http://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleading-research-a_b_9726490.html
- Add https://www.ncbi.nlm.nih.gov/pubmed/9149090
- 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://www.ncbi.nlm.nih.gov/pubmed/27088059
- Add https://www.ncbi.nlm.nih.gov/pubmed/27088131
- 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://twitter.com/LouCorsius/status/719993266876391424/photo/1
- Add https://batemanhornecenter.org/uncovering-biomarkers-fcg-receptors/
- Add http://link.springer.com/article/10.1007%2Fs11306-015-0816-5
- Make sure this study is on the Exercise page http://www.meresearch.org.uk/our-research/completed-studies/acidosis/
- 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
- Make sure this study is linked to on the Carnitine page https://www.ncbi.nlm.nih.gov/pubmed/8148455
- Make sure this study is linked to from the natural killer cell page https://www.dovepress.com/articles.php?article_id=26236
- 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
- Add article to Vitamin D and Microbiome pages https://cfsremission.wordpress.com/2016/04/02/vitamin-d-and-the-microbiome/
- Add this dental ME/CFS guide https://twitter.com/TomKindlon/status/715923546778824705?s=09 (maybe to home page section containing patient guides?)
- 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 a picture of Rituximab to the Rituximab page
- Add a photo of Ampligen to the page
- 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 this Norwegian TV segment about Rituximab (and private availability) to Rituximab page https://www.youtube.com/watch?v=MfqJWRhgVx0&feature=youtu.be
- Add this 2011 Klimas talk to her page https://www.youtube.com/watch?v=UMimz3iDk0s
- 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 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
- 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 SPECT and MRI pages https://www.ncbi.nlm.nih.gov/pubmed/8141020
- Add new blog post about Karina Hansen to her page http://valerieeliotsmith.com/2016/04/04/karina-hansen-4-timeline-torture-tragedy/
- 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 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
- 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://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 https://jcoynester.wordpress.com/the-unfolding-story-of-removal-of-data-from-a-plos-one-article/
- Add http://www.jpsychores.com/article/S0022-3999%2816%2930232-X/abstract
- Add http://www.virology.ws/2016/05/23/an-open-letter-to-plos-one/
- Add to FINE page https://forbetterscience.wordpress.com/2016/05/20/plos-correction-removes-previously-available-anonymised-patient-clinical-trial-data/
- Add FINE consent form http://retractionwatch.com/wp-content/uploads/2016/05/11.4.16-Mitchell-Response-consent-form-version3-MREC-2460904.pdf
- Add http://retractionwatch.com/2016/05/20/plos-editors-discussing-authors-decision-to-remove-chronic-fatigue-syndrome-data/
- Add https://valerieeliotsmith.com/2016/05/16/qmul-v-ic-and-matthees-pace-trial-pt-2-documents-open-justice-and-open-data/
- Add http://www.meaction.net/2016/05/14/racianello-pace-obfuscation-will-continue-until-we-are-all-dead/
- Add http://www.occupycfs.com/2016/05/12/pace-gate/
- Add to Chalder Fatigue Scale page http://evaluatingpace.phoenixrising.me/aps3chalder.html
- Source this chart and consider adding to page https://twitter.com/MECFSquestions/status/730358976429314049
- Add https://jcoynester.wordpress.com/2016/05/09/half-year-passes-without-release-of-plos-one-pace-trial-data/
- Add https://spoonseeker.com/2016/05/08/door-to-freedom-revisited/
- Consider adding more content by Hooper, Margaret Williams, Jane Bryant, One Click, Angela Kennedy
- Add https://valerieeliotsmith.files.wordpress.com/2016/04/010-090216-r2-matthees_main_response.pdf
- Add http://f1000research.com/articles/5-781/v1
- Add https://spoonseeker.com/2016/05/01/closing-the-door-on-freedom/
- Make sure this chart is included under the right paper https://twitter.com/TomKindlon/status/726098825518145536?s=09
- Add https://thepsychologist.bps.org.uk/volume-29/may-2016/our-struggle-between-science-and-pseudoscience
- Add https://ico.org.uk/media/action-weve-taken/decision-notices/2016/1623988/fs50600710.pdf
- Add https://valerieeliotsmith.com/2016/04/28/qmul-v-the-information-commissioner-and-matthees-tribunal-hearing-and-open-justice/
- Add recovery song https://www.youtube.com/watch?v=QbKTBMyZfX0 (to section for the recovery paper)
- Add http://porbeagle.blogspot.co.uk/2015/10/statement-regarding-series-of-articles.html
- Make sure this is included http://pacedocuments.blogspot.co.uk/2016/02/summary-of-my-specific-concerns-about.html
- Add http://www.meactionuk.org.uk/Hooper-to-Horton-15-April-2016.htm
- Make sure this is included http://www.fom.ac.uk/wp-content/uploads/Hidden-Disabilities-Trudie-Chalder.pdf
- Add https://johnthejack.com/2016/04/18/why-the-dispute-about-pace-trial-data-matters-to-everyone/
- Add https://valerieeliotsmith.com/2016/04/14/qmuls-upcoming-appeal-against-the-information-commissioners-decision-on-release-of-pace-trial-data-20-april-2016/
- Add https://twitter.com/LouCorsius/status/719993266876391424/photo/1
- Add article by a QMUL student critical of the failure to release data http://theprintnews.co.uk/2016/01/scientists-demand-transparency-on-pace-trial/
- Add new Coyne piece to data release section https://jcoynester.wordpress.com/2016/04/07/in-the-standoff-over-release-of-the-pace-plos-one-trial-data-has-the-journal-just-blinked/
- Add new article http://psychcentral.com/news/2016/04/05/debate-over-chronic-fatigue-syndrome-therapy/101259.html
- Add Vink paper, and document any new criticisms he makes, extract any poignant quotes http://www.sciforschenonline.org/journals/neurology/JNNB-2-124.php
- Add latest Schneider piece (and to Lancet page) https://forbetterscience.wordpress.com/2016/04/05/does-the-lancet-care-about-patients/
- Make sure this RNase L study is included. https://www.ncbi.nlm.nih.gov/pubmed/8148461
- 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 Margaret Williams article about PACE criticism http://www.investinme.org/IIME-Newslet-1603-01.htm
- Not sure where but this oddity (absurd reasoning for stats errors) should be documented at least on Wessely and Chalder pages. https://twitter.com/EricaVerrillo/status/716387401451618304?s=09 [partially done - needs review - see Biopsychosocial model]
- 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
- 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
- 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
- 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 :
- (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
- Make sure this study is linked to from the HHV6 page https://twitter.com/EricaVerrillo/status/715599637021859840?s=09
- 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?
- Add this study on endothelial function by Julia Newton https://www.ncbi.nlm.nih.gov/pubmed/22078396
- 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
- Read Osler's Web and document key events/people/documents it refers to, linking to the book for readers to learn more.
- 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[edit | edit source]
http://me-pedia.org/wiki/List_of_acronyms
Historical articles[edit | edit source]
Add these articles:
- http://august-1914.com/articles/christophers.pdf
- 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[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 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
[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/
- Add statements about Aus PACE data demands