By Jane Colby of the TYMES Trust
Not many people will have missed the hoohah about SEID - Systemic Exertion Intolerance Disease - as a proposed new name for ME/CFS. You'll be relieved to hear, this is not going to be a dissection of the IOM report. That's not what I'm writing about.
I'm going to write about ME, and about why, no matter how many names people come up with for the composite 'CFS', ME itself remains what it always was. Myalgic Encephalomyelitis. Well defined by Melvin Ramsay back in the 20 Century. A discrete disease, and not exactly what we would call “benign” (a prefix that was originally attached).
It's six months since I posted here on my Stripeysocks blog (as you see, I've broadened my remit to include Spotty Socks when available... ). Thanks for the messages asking me to post again. The reason I was away was simple. Myalgic Encephalomyelitis. As those of you with ME will know, even if you're much recovered, the chances are that you still have to pace yourself. So do I. 2014 was Tymes Trust's 25 Anniversary Year. That was demanding so much of my energy and time that something had to give. It's good to be back.
Sitting beside me is a copy of Melvin Ramsay's monograph: The Clinical Identity Of The Myalgic Encephalomyelitis Syndrome (second edition). If only the medical establishment had properly adopted his clear description of ME back then, we might never have suffered the indignity and nonsense that is Chronic Fatigue Syndrome, nor rushed willy nilly down that blind alley. “It is fortunate,” he writes, “that a second edition of my monograph affords me the opportunity to demonstrate that the clinical features of Myalgic Encephalomyelitis provide a sharp contrast to all other forms of postviral fatigue syndrome.”
So there you have it. A “sharp contrast” to ALL other forms of postviral fatigue syndrome.
Anything that does not display the clearly defined features of what I have myself referred to as “classic” ME (I'm glad to see how popular that adjective has become) is simply not ME. It is something else, and deserves to be properly diagnosed in its own right.
All this muddled thinking that CFS has engendered has led to patients with genuine ME getting mixed with patients who have something else. No illness can be accurately diagnosed while all are labelled CFS - or worse, chronic fatigue, a symptom of multiple diseases. Many of you will know that I've written about this issue since the 1990s. It can't be repeated too often. People have been short-changed, fobbed off, and some even put in serious danger by being given inappropriate therapies, or having what was cancer labelled as fatigue.
Here is what Melvin Ramsay wrote. It could hardly be clearer.
The clinical identity of the Myalgic Encephalomyelitis syndrome rests on three distinct features, namely:
A. A unique form of muscle fatiguability whereby, even after a minor degree of physical effort, 3,4,5 days or longer elapse before full muscle power is restored.
B. Variability and fluctuation of both symptoms and physical findings in the course of a day. And,
C. An alarming tendency to become chronic.
He goes on to contrast this with flu. “If we take the well known condition of post influenzal debility as an example of a postviral fatigue state we see that in all these particulars it constitutes a complete contrast. The fatigue of post influenzal debility is part of a general debility with no distinguishing characteristic of its own, it shows no variation in intensity in the course of a day and although it may last weeks or even many months, it has no tendency to become chronic.”
Once you mix different forms of postviral fatigue together you end up with doctors who can't understand why a child diagnosed with CFS can be severely ill for years. They make extraordinary statements like “You've been ill for too long,” and call in psychiatrists and social workers to probe the family and the child's mental state. They may be accustomed to seeing more common types of postviral debility, quite likely under the label of chronic fatigue, and simply don't know that in with those there will be cases of the 'real thing', the genuine article, ME in all its variability, potential severity and chronicity (duration of illness).
On chronicity, Melvin Ramsay writes of the “alarming tendency” of ME to become chronic. This is “the final distinguishing feature from all other forms of postviral fatigue syndrome”.
At the time of writing, he knew of people who had suffered with ME for over forty years. He states, unequivocally: “I am fully satisfied that at a conservative estimate 25% of victims of M.E. have had the disease for 10 years or more. Only Myalgic Encephalomyelitis has such a legacy.” Finally, he comments on the “recurring cycle of remission and relapse”, and on “tragic” cases that do not remit.
Given these sobering facts, it must surely be obvious to anyone, lay or medical, that we must allow children with ME, and adults too, to convalesce and recuperate in a genuinely conservative manner that supports the body's own healing mechanisms. The last thing we should be doing is pushing the body before it has healed enough to do what is being demanded.
I said I wouldn't write about SEID but I will say this: to be diagnosed with SEID, the patient must exhibit an intolerance to effort. That in itself narrows things down. If the definition requires that effort makes the patient worse, we're coming closer to ME itself. The IOM committee quite rightly panned the term 'fatigue' and also replaced 'syndrome' with 'disease'. SEID might fly as a replacement for the hated 'CFS', but it's still not classic ME. Both I and Tymes Trust will continue to refer to ME to distinguish it from other diseases.
I don't think I'm breaking a confidence to say that I'm expecting some new evidence of the type of neurological damage caused by inflammation in ME to become available during 2015. Given that the IOM committee will review in five years, by which time there may be more revelations, I find it very unlikely that there won't be - even in their opinion - sufficient evidence of inflammation for them to agree: Myalgic Encephalomyelitis ('itis' meaning inflammation) was an appropriate name all along.
Footnote: Those of you who've been reading the episodes of my book will know that it's the close relation between ME and polio that I focus on there.