I have a dx of ME, but I don’t really know if I have ME. The doctor who dx me did so by accident when I went to see him about the worsening symptoms of my already dx Fibromyalgia. I was getting sicker and sicker and wanted to know how to stop it. He was a truly nasty piece of work. and I came away, not only with no answers, but no hope. Thankfully I’m a tough ol’cow and I bounced back. But I am still left with the question; do I have ME? And this is coupled with the question, “What is ME anyway?” Ramsay’s Disease – Myalgic Encephelomyelitis and the Unfortunate Creation of CFS by Simpson and Blake is a good insight into the research Dr Melvin Ramsay and Dr Simpson had carried out in England up to and beyond the Royal Free ME cluster outbreak of 1950. His work of blood rheology showed very clear signs of a good biomarker test for ME even back then. His work, however, was sidelined as the psychiatric lobby, linked to the American Insurance Industry and British Government’s welfare cuts took over. A brief but accurate timeline of events shows some of the bizarre and unprofessional behaviours from members of the CDC in the 1980s but also notes a strange attack on people with ME by a couple of pyschs in 1970 (McEvedy and Beard) who tried to insist the Royal Free Hospital cluster and other cluster outbreaks of ME was “mass hysteria.”
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Nancy: Appropriate treatmet for ME should include a prescription for rest immediately upon becoming ill…” (Kindle loc. 3454 60%)
The understanding that patients with ME did(do) better with enforced rest at the beginning of the illness has been repeated over the years, most notably by Dr Nancy Kilimas (an HIV/AIDS specialist who has done lots of work on ME, especially when she noted that her patients with ME were as sick from the start as her end stage Aids patients). Even anecdotally I can see people with ME who have gone into remission after having gone to bed when they became ill. Research into patients who have gone into remission is sadly lacking; but then research into people with ME is sadly lacking altogether.
Studies suggest that those who get ME younger have a better chance of getting good remissions. Sadly this simply isn’t the case for many children and teens with ME and some of the deaths from ME are in those young ones.
The central theme of this book seems to be the blood rheology results showing that people with Ramsey’s criteria for ME have misformed erythrocytes (red cells) which in turn leads to poor profusion, especially in the brain. The problems with blood flow offered a good explanation for a lot of the memory, language and other neurological symptoms of Ramsey’s ME. Strangely (or not) Simpson a researcher in this area had problems getting his blood rheology papers published despite the slides showing the cup shaped cells. He found that editors of medical publications couldn’t accept red cells could change shape (leaving me wondering what they made of Sickle Cell and Thalassaemia).There have been some papers published on this subject not related to ME Considering the appalling quality of much of the so-called research into CFS and/or ME that is published, it’s a bit odd that Simpson’s papers weren’t published.
More recent findings back up Ramsay and Simpson’s blood findings and this coupled with studies showing small capillary problems points right back to their work again.
Having reached the part in the book where patients climbing three flights of stairs to reach the doctors office and then having very cold hands and blurred vision, I am reminded that all ME patients are not the same. There’s no way I could make it up three flights of stairs! He goes on to say
Although much was written about “autonomic manifestations”, in the terms of Ramsay’s criteria dysautonomia would have excluded a diagnosis of ME – but if there were a systemic problem of blood flow it could anticipated that capillary blood flow in the nerves of the autonomic nervous system would be impaired.”
I am not sure whether the author is saying that those of us who have a dysautonomic dx can’t have ME or whether the blood flow problems found in Ramsay criteria dx ME patients lead to ANS problems anyway so ME and dysautonomia go hand in hand. There’s a lot of us with dual diagnosis – and getting diagnosed with any dysatonomia is difficult because most doctors haven’t a clue it exists or what it is.
Recent findings in research into women with fibromyalgia seem to back up the blood flow findings of Simpson et al (this report in Medical Daily on the research is clear – you can mute the annoying advert in the sidebar. You might also want to skip the ridiculous cliche “patients aren’t lying after all-shock” introduction.)
I’ll write more later. It’s time for a cuppa.
Erythrocyte Rheology article in BMJ (opens Pdf)
The Fish-Dish (my daughter’s observations of my aphasic moments) (Nb. Please go to the toilet before reading this).