The Pseudo ME Sufferer Movement

Mike left a great comment today on my blog post - The Hourglass Model :


"If you remove the disease from the "fatigue", which is what CFS has become (was arguably intended for), then yes, of course it's psychiatric. There's no such thing as a disease without any evidence/signs of disease process. Simple! No coincidence all the signs and evidence of ME have been struck from the CFS definition by the "international CFS study group" (mostly psychs who believed ME was hysteria) and their mates.

Before the CFS travesty came along, this was always known to doctors, and diagnosing "fatigue" as if was an would have been seen as madness. As a result we have a bogus illness which is just basically a misdiagnosis and get-out-of-jail card for psychiatrists, lazy doctors and insurers/state welfare gatekeepers. 

It very much helps to perpetuate the status quo, as no research findings in a dustbin diagnosis can ever be officially "significant" with respect to disease. As soon as something which is very striking is found, it gets automatically dismissed because CFS isn't defined to accomodate it; you would need to revolutionise CFS with a new definition and name to do so which would destroy the field of CFS quackery.

And lastly, the so-called "heterogenous" nature, which is an understatment, makes doing replication studies difficult as there's no reason why two cohorts would be the same. It encourages duplicity and bad research.

The idealists claim to be pragmatists in studying the suppposed whole of CFS to separate it out, but we all know what the result of being in that endless queue and waiting for "fatigue" to be understood is. The result is more decades of timewasting, of no parity and a trickle of sidelined good research among the bad while severely affected sufferers progress and die horribly in a society that permits the abuses of pwME to continue.

Mike "


Mike is right , it is very clear that ME needs to be separated from Chronic Fatigue and that those currently diagnosed with the meaningless, non-disease CFS are given an an accurate diagnosis to determine what is really wrong with them.

The extraordinarily detailed ICC Pimer lays bare the ME- CFS issue and sets out exactly what an ME service should look like . 

It is what we are fighting for - have been for this last 19 years.

But...

Again and again our efforts are muddied, watered down, diluted by a seemingly massively powerful  "pseudo" ME sufferer movement   (I am a web designer, pseudo classes are a big deal ) -they want a Fatigue Service by any other name...goal setting and management.

The most ill are the most hidden, the pseudo ME movement is a much more visible, vocal force, all too prepared to compromise, claiming , as Mike  points out  so well, to be "pragmatists".

In my experience they constitute the biggest  , most frustrating block to progress.

Those who refuse to challenge the CFS label, who persist in using it, those clinicians, - and  that is most of them, who use the term CFS, those ME Groups who claim that ME is on a continuum with CFS, they are the ones perpetuating my wife's heart rending suffering, by their deadly ignorance.

Do they not see what they do ?

She is in SUCH agony, my wife. I am so tired, it was a terrible night last night. No one though, could even have a clue how bad it is...it's much much worse than anyone could possibly imagine, apart from those going through it themselves.

These , the true ME sufferers and carers,  are the ones most hungry for change; their anger at what is going on is white hot.


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