Symptoms and Treatment | Research Organizations | Advocacy | Additional Resources | Tracking Documents
This is a non-comprehensive list of resources on Myalgic Encephalomyelitis (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.
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!)
Symptoms and treatment
Summary of the International Consensus Criteria (ICC) for myalgic encephalomyelitis. Based on research by Caruthers, et al; document compiled and formatted by Carmen Cutler with collaboration by dSavannah. For additional information, visit the ICC page on MEPedia.
A “roadmap” for dx and treatment of ME: 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” you can consult.
Center for Disease Control and Prevention guidelines
The clinician’s guide from the National Academies Press for ME/CFS: Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (downloadable PDF is free; there is a cost for the paperback and ebook)
Stonebird: The Experience of Severe ME |
The UK ME/CFS association symptoms list
ME Association Factsheet – What you need to know about M.E.
U.S. ME/CFS Clinician Coalition: Testing Recommendations for Suspected ME/CFS and ME/CFS Treatment Recommendations (both on Google Drive)
Policies/guidelines from the Social Security Administration | PDF Document that will download: Providing Medical Evidence for Individuals with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)
Dr. Myhill, ME doctor & researcher; Her Treatment Plan
PDF Document that will download: Article from Winter 2018 Family Doctor magazine, “Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: What Every Family Physician Needs to Know”
MEpedia: a crowd-sourced knowledge base on the history, science and medicine of MEcfs, created by #MEAction
An Introduction to Myalgic Encephalomyelitis by Dr. K.N. Hng (PDF); purchase her book M.E. and Me: A Doctor’s Struggle with Chronic Fatigue Syndrome on Amazon [affiliate link]
Collection of ME research articles on Frontiers journal: Advances in ME/CFS Research and Clinical Care
A global directory of doctors on #MEAction (information is crowdsourced)
ME-pedia, a crowd-sourced encyclopedia of ME and CFS science and history, founded by MEAction, powered by the patient community, and built by volunteers
Research Organizations
Open Medicine Foundation (OMF) | Make a tax-deductible donation
Solve ME/CFS Initiative (SMCI) | Join the You + ME Biobank & Registry to track symptoms and help with research initiatives (currently US only) | Make a tax-deductible donation
U.S. ME/CFS Clinician Coalition
Decode ME: the ME/CFS Biomedical Partnership | If you are in the UK and would like to participate in this DNA study, click here
Dr. David Tuller’s research blog: Trial by Error | links to all articles 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.
Advocacy
#MEAction Network | Make a tax-deductible donation
American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society | Make a tax-deductible donation
Additional Resources
A very helpful blog, How to Get On & How to Have a Great, Disabled Life, a self-advocacy guide for anyone who is homebound or bedbound, or who is applying for disability
Unrest, a documentary released in 2017 about the disease. I’m “lucky” in that I don’t 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… and was felled by this little-known disease.
- watch the two-minute trailer
- The 17-minute TedTalk given by Jennifer Brea, the filmmaker: What happens when you have a disease doctors can’t diagnose
- Watch the full film on Netflix
- If you are interested in purchasing and watching the documentary, links are on this page. The fee goes toward the cost of making the film, promotion, and all the outreach they are doing – including screenings all over the world!!! And training sessions with doctors and other medical providers.
- If you are a US healthcare provider, watch the film and receive Continuing Medical Education (CME / CE) Credit
30-minute film, After Unrest
A short play on Vimeo called “The Least You Can Do”, written to raise awareness of ME/CFS; performed at the 187th installment of LA Cafe Plays at the Ruskin Group Theatre on Sunday, February 16, 2020; play written by Joe Galliani
A three-minute animated documentary about ME by Alexandra Hohner | transcript
Voices from the Shadows, a documentary released in 2011 by Natalie Boulton and Josh Biggs, the mother and brother of a chronic ME sufferer
- visit the website for the film
- watch the three-minute trailer on YouTube
- watch the full one-hour film on vimeo
Taking back your doctor’s appointment: five-minute TedX Talk by Carmen Cutler based on research with patients with MEcfs
A Demon on my Life: play about MEcfs written and directed by JB Bruno (2 hours, 45 minutes); article about it on Health Rising
Tracking Documents
Document to keep track of taking medications: The file ‘meds_schedule_template’ can be downloaded from dropbox and personalized for your own needs. (I created in word, but works in google docs as well. You don’t need a dropbox account to download it.)
Suggestions for use: I use one document per week, and when I print it out, I just write the date on top. It’s divided into columns for the time of day: anytime, morning, midday, night before bed, and right before bed. (Of course, you can change those categories to whatever works best for you and when you need to take your meds.) I cross off the letter for the day of the week as I take each pill. I’ve also started scribbling the time at the top of each column, since some medications have to be taken on a very rigid schedule.
I hope this helps someone; without mine, I wouldn’t know what to take or when!
Spreadsheet to keep track of medical expenses: I’ve been keeping track of my medical expenses since 2004 – long before I became a Full-Time Sick Person. Check with your tax advisor, but there are rules in place that allow you to write some of your medical expenses off on your taxes, and a spreadsheet makes it easy to do so.
In my case, it also helps me remember what doctors I saw, and when, and how much I paid, and when I paid. It amazes me how often I have to look this information up!
The file med expenses – template can be downloaded from dropbox and personalized for your own needs. (I created it in Excel, but works in google docs as well. You don’t need a dropbox account to download it.)
Suggestions for use: use one workbook for each calendar year. It has three sheets – ‘meds’, ‘physicians’, and ‘misc’ (which I use to keep track of expenses like parking at a doctors’ office, or meals around an appointment). It also has a sheet in the front that keeps track of totals.
I log the information in my spreadsheet, but I also have a three-ring binder for each year where I file all bills and associated paperwork (receipts, doctors reports, test results, etc.) by date. (I use AmazonBasics Binder – 2 Inch D-Ring, White, 4-Pack [affiliate link] – 2 binders per year; Sheet Protectors [affiliate link] to keep everything regarding a particular visit together; and Avery Jan-Dec Tab Dividers for 3 Ring Binders [affiliate link] to make it easy to find the month.)
Affiliate disclosure:
As an Amazon Associate I earn from qualifying purchases i.e. I’m an affiliate. This means if you click a link, and buy something, I supposedly get a wee percentage of the sale. Doesn’t cost you anything, and helps me support my art and taking medication habit. 🙂
Disclosure: I am also a (new!) affiliate of Bookshop.org, an online bookstore with a mission to financially support local, independent bookstores in the US, and I will earn a commission if you click through and make a purchase. (Sorry; they do not ship internationally as yet.)
Note: being an affiliate helps keep me this site ad-free!
In addition, I am an affiliate for my web hoster, Lyrical Host. If you switch your site (which was soooo easy, even for brain-fogged me!) to them, or decide to start one, just use the code “dsblog10” at checkout and get 10% off your first hosting plan payment! It’s a win for all of us!
Please note: No solicitation, please. I do not add links to my blog because I received a random email from someone I’ve never met. I am unable to accept unsolicited books or other items for review. I also do not update past posts, unless there is an error. If I post a link in this blog, it is because I am personally acquainted with the person/product/etc. in question.
Updated May 8, 2021
