A Timely Multidisciplinary Update on ME/CFS, 2019, Theoharides

Appears to be some kind of foreword to the April and May issues of Clinical Therapeutics which will feature a number of articles on ME/CFS.

Open access at https://www.clinicaltherapeutics.com/article/S0149-2918(19)30116-X/fulltext

 

Looks reasonable, no mention of anything BPS which is how we differ so much from the states where this is from I assume?

 

Well, it seems to include something from Morris in Wales. I guess Theoharides may have been asked to put together a collection of papers or do an editorial on a collection, possibly from a conference. This introductory piece does not fill me with any great enthusiasm. Theoharides is a mast cell man who seems to me a bit Procrustean when I have looked at his output.

 

Reading articles like this, which principally equate the disease with "fatigue," makes me wonder if we might not be better off if the disease was called something like "Persistent Physiologic Malaise Syndrome," or even "Persistent Somatic Malaise Syndrome."

Not that "malaise" doesn't have its own issues, but it would de-emphasize "fatigue" as the defining feature of the illness. The illness is a constellation of symptoms, of which "fatigue" is but one. "Malaise" is a more encompassing term which, while it can include fatigue, tends to highlights the general feeling of not being well that usually accompanies the flu.

In my experience, what we call "Post Exertional Malaise" is just an intensification of the cluster of symptoms we experience at a lesser level all the time.

Unfortunately, there is also "emotional malaise," which sort of suggests something like "ennui." That's why I tried to distinguish the malaise of ME by labeling it "physiologic" or "somatic" (i.e. "of the body").

 

Somatic has its own baggage. Especially because of the 'functional somatic syndromes'.

 

"Chronic fatigue syndrome (CFS), later named myalgic encephalomyelitis (ME)"

Well after that piece of ignorance you can't trust anything else they say. I hope it is online only or trees have died in vain

 

Well, he’s got the first sentence wrong -

Chronic fatigue syndrome (CFS), later named myalgic encephalomyelitis (ME)

- The name ME was in place years before CFS was invented.

 

A basic error like this does not inspire confidence that further errors will not be found throughout.

 

I am not sure he can be criticised for this. He never stated what it was named before it became CFS, or who called it ME, having previously called it CFS.

I Know. I should get out more.

 

I got the same impression from the Q&A of the last year's IIME conference. I believe he asked some weird/basic question, which seemed odd to me.

As for the conclusion, it all goes back to his theory that it all relates to mast cells, and that the problem lies in the brain, which I think is wrong (I could say the same about Younger). He also like to emphasize stress angle, since it's one of the major triggers in mast cell disease, which also may not be very helpful to us.

He's definitely well meaning, but..

 

Well, he's out of Boston, and I'd be willing to guess that very few doctors in the US ever heard of ME before they heard of CFS. I became ill in the early 1980's and no doctor (not even my neurologist) ever mentioned "ME," just a vague notion of a post-infectious syndrome. "CFS," of course, was coined in 1988. It was actually around that time that I first ran across the term "myalgic encephalomyelitis" in a patient's letter printed in the back of an Australian medical journal. I only found that because I had access to the newly "computerized" catalog of UCLA's medical library (the journal pre-dated "CFS" by a decade, so exactly how I stumbled upon it is a mystery).

I still had no idea if my illness actually was "ME" until I read "Osler's Web" several years later (where the term doesn't show up until page 196). Then I knew.

I guess I'm saying that, in the U.S., in the 1990's, one is pretty likely to have heard of "CFS" first, and therefore might assume that it came first.

 

You may be right, but it still ignores decades of research and, worse, clinical knowledge of patients (from a time when diseases were not defined but described)

However, the fact that patients have chosen the "scientific sounding" myalgic encephalomyelitis instead of the straightforward CFS is used against us, making it appear we are trying to make what we have sound more serious. Anyone of goodwill should take a moment with google to find out WHY we want our illness to be called ME.

And the answer is twofold and important for research. (I am ignoring the awful, ignorant accusation that we are all narcissists and want a disease called ME) Firstly, many of us were ill before CFS was invented and never fit the definition of CFS (fatigue was not essential for a diagnosis of ME) and secondly our cardinal symptom is PEM not fatigue just like in ME and we have a spread of symptoms that match ME much better.