{"id":6133,"date":"2018-11-16T18:46:04","date_gmt":"2018-11-16T23:46:04","guid":{"rendered":"http:\/\/dsavannah.com\/blog\/?page_id=6133"},"modified":"2021-05-08T23:29:07","modified_gmt":"2021-05-09T03:29:07","slug":"mecfs-resources","status":"publish","type":"page","link":"https:\/\/dsavannah.com\/blog\/index.php\/mecfs-resources\/","title":{"rendered":"MEcfs Resources"},"content":{"rendered":"

Symptoms and Treatment<\/a> | Research Organizations<\/a> | Advocacy<\/a> | Additional Resources<\/a> | Tracking Documents<\/a><\/h3>\n

\"I'm<\/p>\n

This is a non-comprehensive list of resources on Myalgic Encephalomyelitis<\/b><\/span> (also known by the derogatory name chronic fatigue syndrome). I have included what I consider to be the most helpful resources, especially for new patients searching for answers, or long-time patients who need tools to explain their illness.<\/p>\n

Of course, there are lots of individual advocates (like myself), and lots of articles about patient stories, but for the sake of not making this any longer than it already is, I have not included all of them. (Eventually, I will add a list of blogs related to ME and chronic illness… I just haven’t had the energy so far!)<\/p>\n

Symptoms and treatment
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Summary<\/a> of the International Consensus Criteria (ICC) for myalgic encephalomyelitis. Based on research by Caruthers, et al<\/a>; document compiled and formatted by Carmen Cutler<\/a> with collaboration by dSavannah. For additional information, visit the ICC page on MEPedia<\/a>.<\/p>\n

A “roadmap” for dx and treatment of ME<\/a>: this is especially helpful for patients who are looking for a diagnosis and aren’t sure where to start. Since the full “roadmap” is very lengthy, there is also a “mini roadmap<\/a>” you can consult.<\/p>\n

Center for Disease Control and Prevention guidelines<\/a><\/p>\n

The clinician\u2019s guide from the National Academies Press for ME\/CFS: Beyond Myalgic Encephalomyelitis\/Chronic Fatigue Syndrome<\/a> (downloadable PDF is free; there is a cost for the paperback and ebook)<\/p>\n

Stonebird: The Experience of Severe ME | <\/a><\/p>\n

The UK ME\/CFS association symptoms list<\/a><\/p>\n

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ME Association Factsheet \u2013 What you need to know about M.E.<\/a><\/p>\n

U.S. ME\/CFS Clinician Coalition<\/a>: Testing Recommendations for Suspected ME\/CFS<\/a> and ME\/CFS Treatment Recommendations<\/a> (both on Google Drive)<\/p>\n

Policies\/guidelines from the Social Security Administration<\/a> | PDF Document that will download<\/a>: Providing Medical Evidence for Individuals with Myalgic Encephalomyelitis\/ Chronic Fatigue Syndrome (ME\/CFS)<\/p>\n

Dr. Myhill<\/a>, ME doctor & researcher; Her Treatment Plan<\/a><\/p>\n

PDF Document that will download<\/a>: Article from Winter 2018 Family Doctor magazine, “Myalgic Encephalomyelitis\/ Chronic Fatigue Syndrome: What Every Family Physician Needs to Know”<\/p>\n

MEpedia<\/a>: a crowd-sourced knowledge base on the history, science and medicine of MEcfs, created by #MEAction<\/a><\/p>\n

An Introduction to Myalgic Encephalomyelitis<\/a> by Dr. K.N. Hng (PDF); purchase her book M.E. and Me: A Doctor’s Struggle with Chronic Fatigue Syndrome<\/a> on Amazon [affiliate link<\/a>]<\/p>\n

Collection of ME research articles on Frontiers journal: Advances in ME\/CFS Research and Clinical Care<\/a><\/p>\n

A global directory of doctors on #MEAction<\/a> (information is crowdsourced)<\/p>\n

ME-pedia<\/a>, a crowd-sourced encyclopedia of ME and CFS science and history, founded by MEAction<\/a>, powered by the patient community, and built by volunteers<\/p>\n

Research Organizations<\/strong><\/h2>\n

Open Medicine Foundation (OMF)<\/a> | Make a tax-deductible donation<\/a><\/p>\n

Solve ME\/CFS Initiative (SMCI)<\/a> | Join the You + ME Biobank & Registry<\/a> to track symptoms and help with research initiatives (currently US only) | Make a tax-deductible donation<\/a><\/p>\n

U.S. ME\/CFS Clinician Coalition<\/a><\/p>\n

Decode ME<\/a>: the ME\/CFS Biomedical Partnership | If you are in the UK and would like to participate in this DNA study, click here<\/a><\/p>\n

Dr. David Tuller\u2019s research blog: Trial by Error<\/a> | links to all articles<\/a> by David Tuller related to ME\/CFS | Note: Dr. Tuller’s research is crowdfunded each Spring and Fall via Berkely’s crowdfunding platform. I will share links via social media.<\/p>\n

Advocacy<\/strong><\/h2>\n

#MEAction Network<\/a> | Make a tax-deductible donation<\/a><\/p>\n

American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society<\/a> | Make a tax-deductible donation<\/a><\/p>\n

Additional Resources<\/strong><\/h2>\n

A very helpful blog, How to Get On & How to Have a Great, Disabled Life<\/a>, a self-advocacy guide for anyone who is homebound or bedbound, or who is applying for disability<\/p>\n

Unrest<\/a><\/em>, a documentary released in 2017 about the disease. I\u2019m \u201clucky\u201d in that I don\u2019t yet have it as severely as the woman who is the star\/producer of the documentary, Jennifer Brea. She too was highly functioning, extremely smart\u2026 and was felled by this little-known disease.<\/p>\n