Hi team — happy me/cfs awareness day! I have been working on a post (facts about the illness) and thought I would add it here in case anyone wants to post something but doesn’t have the energy to write anything — feel free to steal bits or all of it if you’d like!
While it has the benign name of ‘chronic fatigue syndrome’, tiredness is just one of the many fun symptoms. Others include (but are by no means limited to): brain fog, disrupted sleep, headaches, muscle pains, flu-like symptoms, weakness, and dizziness.
It’s not new — it was described over 3750 years ago by the Babylonian king. In recent decades it has struck famous people including Laura Hillenbrand (writer of Seabiscuit), and probably (based on description) Charles Darwin and Florence Nightingale.
Factors the pre-eminent NZ specialist Dr Ros Vallings states aggregate recovery include (among others): overdoing it, pushing exercise, stress, and lack of understanding by others.
The illness was mislabeled as a psychological illness for many years, and not everyone has caught up with the latest research. This came about in part because a greater number of women are affected by it, so it was dismissed as hysteria, and then later because of a bizarre string of events: The scientist who first noticed the EBV connection (forgive me, the book is back at the library and I forgot to note his name) became the global authority on ME/CFS. Then, one day, he disproved his own theory (probably because, as we now know, multiple factors can trigger the illness) and so he declared it was a psychological illness. To the world. And everyone took it as read. It’s conjectured that this set the medical establishment back about twenty years. So that was awesome. This led to UK guidelines including treatments such as Cognitive Behavioural Therapy and Graded Exercise Therapy. Which have since been debunked, likened to torture for the poor sufferers put through them, and revised in the 2019 NICE guidelines to definitely NOT prescribe those as treatments. And in the last few years the research has thankfully started looking at (and finding much and many) physical anomalies and answers to how this illness works (spoiler — it seems to affect nearly every system in the body, which is partly why it is so hard to isolate). Kiwi molecular biologist Warren Tate has made significant contributions to this body of work.
In terms of funding, in 2011 in the US, MS (which had a similar-sized patient population) got $100m per year, while ME/CFS received only $6m in funding (and even much of that was getting sneakily siphoned off to other projects). Scientists literally couldn’t afford to study the illness.
There is a nearly sevenfold increase in suicide in sufferers compared to the general population.
Nancy Klimas, a well-respected AIDS researcher who turned her attention to ME/CFS, said famously in 2009: ‘I split my clinical time between the illnesses, and I can tell you if I had to choose between the two illnesses, I would rather have HIV.’
It’s very hard to know how many people have the illness worldwide as sufferers are often dismissed and ignored, or don’t have access to appropriate healthcare. But current estimates put the number at around 17-24 million.
In some good news, Ron Davis (PhD) who worked on the human genome project switched to studying ME/CFS after his son got sick with it. He has had a massive impact on the research and funding in the US and has discovered all sorts of interesting things already. If you’re interested in his journey, some heartbreaking stories of dismissal, and hope for the future for sufferers, I highly recommend reading The Puzzle Solver by Tracie White and Ron Davis.
Also, with the emergence of Long Covid, while, yes, it’s frustrating it has taken this ‘new’ illness to shine a spotlight, it has brought a lot more awareness and funding to post-viral illnesses. “But equally important, the immense resources put into Long COVID research currently in the rich nations, while yet to produce major breakthroughs, can also benefit the many millions of ‘hidden’ ME/CFS patients whose numbers have increased steadily over time in the absence of their recovery from the illness.” — Emeritus Professor Warren Tate
That’s it, go gently my fellow warriors, and keep the hope — it’s been a rough ride but there are good people working on it.
Ps all references available on request
Written by Hellie – a member of CCI Support