We should probably have this straight before we go any further. What is ME/CFS? It’s a neuroimmune illness that affects pretty much all bodily systems.
The acronym ME/CFS stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Let’s take that bit by bit:
- Myalgic = muscle pain
- Encephalo = relating to the brain
- Myel = relating to the spinal cord
- Itis = inflammation
So, taking it all together: Brain and spinal cord inflammation with muscle pain. Now, this is an old name, dating back to 1969. Such inflammation is has been found in autopsies of sufferers, but it’s not the cause, which is not yet known.
Now, Chronic Fatigue Syndrome. CFS, simply, is a name made up by a committee at the CDC in the late 80s after a U.S. outbreak. I assure you, I am not making this up.
If you know nothing about ME/CFS, this video by Giles Meehan and friends is a good start:
The site of the National Alliance for Myalgic Encephalomyelitis has a lot of good general information about it. (Use the buttons across the top, then the items in the right column to navigate.) Here’s their symptom list and list of test abnormalities.
If you have an hour and $2.99 to spare, you can learn a lot about the severity of the illness by watching Voices from the Shadows. Movie here.
Is there any treatment? No FDA-approved ones, so most patients struggle to relieve only some of their symptoms at best. It would be wonderful if all doctors and newly diagnosed patients had a copy of this very short guide, “A Radical Treatment Pathway for ME/CFS,” which basically advocates enforced rest and support to help the patient do so. Without any real treatment, acting like you have mono and staying in bed is your best chance to get well…as long as you do it right away.
The tiny amount of funding this disease receives is absolutely shocking – only a few dollars per patient per year in the U.S. Here’s a comparison of funding as compared to disease prevalence for ME/CFS and some better known diseases, and here’s information about year-on-year funding.
One other thing: Do not bother with the Wikipedia entry for CFS. It is an edit war with loggorhhea, mostly being won by those who deny the abundance of scientific evidence accumulated over decades showing abnormalities in the illness and who instead believe CFS is, roughly, malingering.
The sordid history of CFS and the CDC is reviewed by NYT reporter David Tuller in this article.
The upcoming ME/CFS documentary Canary in a Coal Mine promises to be very illuminating. Al Jazeera did a phenomenal story on it.
The webseries ME/CFS Alert’s in-depth interviews capture many people in the forefront of work on the illness.
The best book for patients is the second edition of Erica Verillo’s CFS: A Treatment Guide