How to separate ME from CFS

The Hourglass Model
Greg Crowhurst 21st September 2012

You have to be feeling some kind of hope right now, what with that rocket blast, the Lipkin  Report, Mansel  Aylward on the doorstep  apologising, the other day ,  to a group of disability campaigners   - for the biopsychosocial model and now this from the 25% Group and The Young ME Sufferers Trust , in Scotland  :

Patient representatives at the Cross Party Group on ME today delivered an overwhelming vote that ME, as a discrete neurological disease, must be treated separately from other fatiguing conditions.

In the face of a massive diagnostic muddle (the label 'CFS' being a wide term with various different diagnostic criteria) any specialist clinics set up in
Scotland should identify and treat people with ME, and not a spectrum of fatigue states.

The votes cast were as follows:

For ME: 27 votes

For ME-CFS to encompass a range of fatiguing conditions: 5 votes. (.....my emphasis)


At last !

The question must  be asked though  - why was it not a 100% vote ? Who on earth with   ME  ,  would not want to make the separation between their neurological disease  and CFS ?


CFS, ("Complete Freaking Scandal") is  a hopeless botch-up ,    a foul muddy term that incorporates a commodious  range of illnesses and conditions right across the Chronic Fatigue/ Mental Health/Physical disease spectrum; it needs getting rid of.

CFS IS NOT  a disease category in its  own right.


The literature is sick  with references to  "Severe and Complex CFS" -but it is important to know  that these terms are used anecdotally ,that is all - possibly to describe Severe ME by some patients or doctors, but we will never know for sure until a proper diagnosis is performed, using the ICC Criteria - they could just as well be referring to a mental health need or some other as yet undiagnosed and untreated illness.

 CFS, that horrible malodorous label,  does everyone a disservice.


The sooner we are rid of its nasty  stink ,  the better . Hurrah for Scotland the brave !!

If only patients and clinicians  everywhere could  grasp this point, after correct diagnosis using the ICC Crietria : there is  no need whatsoever to use "CFS 

 To still carry on using the term "CFS" within an ME  Service, once you have diagnosed what is actually wrong with patients   makes a nonsense of using the ICC criteria !

Use of the term "CFS "or "Severe "or "Chronic " CFS by anyone simply indicates ignorant, poor diagnostic criteria .

That said,  the situation , as they say in Scotland is a "diagnostic muddle"  at the moment .

 To sort it you need someone who has the knowledge and the wherewithal to separate out who has Chronic Fatigue - a mental health condition, who has ME, a neurological disease and who has some other  undiagnosed illness or condition.

Out of  our local experience , fighting day and night for a medical ME Service , here's  a model for doing just that :

 The  "Hourglass Model" :





































Comments

  1. Are you saying that chronic fatigue is a mental health condition?? If so, yes it *can* be a mental health condition, but it isn't always. It's wrong to describe it as such IMHO.

    ReplyDelete
  2. Hi Greg
    Yes I was wondering the same?
    Thanks Greg
    Clare

    ReplyDelete
  3. Thanks Alison and Clare - you are right it needs better explaining.

    The issue , I think, is the meaning of the word "fatigue" in this context.

    The current situation is a mishmash, a mess created by the Health profession; it is not people's fault they have a CFS diagnosis. I must stress there is no blame or shame in having a CFS diagnosis -that is the result of using vague, confusing criteria which tragically help no one.

    CFS is at best an anecdotal name for ME, but because of poor diagnostic criteria the term is impossible to use with any clarity as to whom has which disease or condition.

    Chronic Fatigue, strictly, is a mental health term. People will also have fatigue associated with an undiagnosed or poorly diagnosed illness, we believe.

    The important thing is to protect people who have ME and make sure that they do not receive wrong treatment or endangering treatment or no treatment at all for their illness.

    Folk with a fatigue diagnosis also need protecting to ensure they are not wrongly categorized as having a mental health need.

    Anyone with a conscience surely can see the harm the biopsychosocial School has done , no wonder Mansel Aylward has apologised.

    People who have fatigue as their main symptom need the best diagnosis possible to ensure that their health is not put at risk.

    There is an emerging trend to call ME a fatigue illness and to treat fatigue without taking into that account that ME is not fatigue.

    Any one involved in working with people with ME must understand the post exertional deteriorative impact of ME and ensure that it is not treated as if it is in a fatigue continuum with mental health at one end, perhaps allergy in the middle and ME at the other - this is SO dangerous !

    People with a CFS diagnosis need to know whether they have ME or not. People with Fatigue of any sort need to know what is causing it and have proper investigations and illness identification. People with Chronic Fatigue ( F48.0) need accurate diagnosis and an appropriate response.

    Everyone needs accurate information on what is going so wrong in their body .

    I think I understand why people go along with the meaningless CFS label- probably because the academic world is so up to its eyes in it. Change, I believe , as in so many other fields of medicine, will have to come from patients /carers demanding accurate diagnosis and an and to CFS.

    Good for Scotland, they lead the way.



    ReplyDelete
  4. Yes fatigue can be psych. Let the CFSers deal with CFS. ME is not a fatigue syndrome. I am tired (pardon the pun) of wasting time money etc on fatigue. We need an accurate dx, that is NOT connected to or combined with CFS. ME/CFS is our Stockholm Syndrome name. The US "ME/CFS" patient groups (CFIDS Assoc, Pandora, Phoenix Rising etc) have banned and censored and take over most lists and forums, and are trying to combine Me and CFS via ICD codes (submitted another proposal to NCHS without even notifying the patient community). ME patients need to fight back. It is NOT a consensus, as of course there are more patients with CFS than ME. CFS is a harmful dx for ME patients.

    ReplyDelete
  5. Yes - that is such a good point Jill about consensus . The problem of course is that is so much harder or impossible for people with genuine neurological ME to attend meetings, make their voice heard, campaign. I have long said that one of our biggest problems is not the psyches, it's those in the "community" who sit on the fence, who defend the fatigue clinics, who are so ready to compromise, who just don't get it.

    Maybe you only really get it when you are so ill, in so much pain and agony that you don't know how to get through the next moment..

    But what chance is there of anyone hearing you ? Mind you, those lights shine brightest of all.






    ReplyDelete
  6. Thanks for this.

    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

    ReplyDelete

Post a Comment

Popular posts from this blog

The psychiatric abuse of Children with ME

25% Group and Stonebird Response to BACME article on care provision for severe ME.

Hoping for a post-PACE world