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.


Comments

  1. I do think that some doctors believe that ME and CFS are the same thing - my G.P.does,so it may not always be a mis-diagnosis!

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  2. sofia mirza had m.e. we know that from the help given by the wonderful 25% group in assisting to get the autopsy done. The death cert says cfs though. the reason given was that dr's establishment have learnt to believe that it is a modern name for ME.

    it is tragic for those who have illness that could be treated as well as for those such as linda who have to suffer so.

    be kind to those who do not understand, use tools such as voices from the shadows and lost voices. natalie and josh are heros's in our fight

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  3. The concept of post-viral sequelae has been around for quite some time. This is, in essence, what ME is: the neurological "fall-out" from a viral infection. (The late Dr. John Richardson discusses ME cases resulting from Coxsackie virus infections at length in his book, Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Other Organ Pathologies.) CFS, on the other hand, is a diagnosis which encompasses both viral and every other trigger. That makes it difficult to diagnose. And the unfortunate reality that CFS is defined by a single symptom - regardless of what the various case definitions require - makes the diagnosis useless. But that fact that ME can manifest itself years after the initial infection also makes it impossible, in most cases, to distinguish from CFS. Separating the two conditions from one another poses a diagnostic problem that cannot be solved. An easy solution to both diagnostic and political dilemmas is to rename the illness Ramsay's Disease. It still won't be easy to diagnose, but at least practitioners won't be tempted to simply dismiss patients who present with the symptoms of ME and/or CFS.

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  5. Thank you so much Erica- when one thinks, for example about how Parkinson's , Downs, Addinsons, Alzheimers, Creutzfeldt-Jakob's -spring so easily to mind, there are many, as you say, political and diagnostic reasons for ME to be eponymously named too. "Ramsay's" is such a wonderful suggestion !!

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  6. Here in the States, CFS is the only legal term acceptable to the government disability process. I can't express how much I detest the term. I can't express how I feel inside when I must name my official label and how quick I am to say that I sustained a documented and massive viral hit (22 years ago next month) - as though to legitimize myself!

    I believe that as long as we have ridiculous labels to bear or acronyms that can be the object of derision, we will continue to endure not only this awful disease but the incomprehensible-to-others burden of not being taken seriously.

    I long for help and I long for a day when I do not have to feel so fearful and upset at naming my diagnosis. As it is, to the casual enquirer, I simply say "I have a neuroimmune disease." Since my CNS and immune systems are profoundly affected, I feel I both speak the truth yet I have prevaricated to avoid naming the hideous label.

    Will it change? I think I've given up on seeing it in my lifetime. I hope I'm wrong.

    Peace.

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    Replies
    1. Yes - it will change, I know it's hard to believe - 20 years of suffering for us, 22 for you - bless you - but it WILL change, it may sound clich├ęd but every part of me senses a gathering massive wave , that is going to leave a lot of people floundering . For those of us desperate for change we may feel isolated and out on our own - but this is exactly THE time to speak out, to say "No more, not another minute of this, these lies, deceit and cover-up !!" ..the wave's coming.

      Thank you....

      Peace - and hope ,

      Greg

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