It has to be ME - not CFS !!!
Greg Crowhurst 16th September 2012

The separation of ME from CFS, so  ending the decades of  injustice and suffering caused by that  label to people with ME and their families, is , in my opinion, the greatest issue facing people with ME right now : 
  1. ME and CFS are not equivalent terms. ME is a neurological disease, CFS is a made-up term that encompasses a wide range of conditions.
  2. CFS includes Chronic Fatigue, a mental illness, as well as ME, a neurological disease; it is therefore unsafe, unreliable and unrealistic .
  3. ME does not exist on a continuum with Chronic Fatigue or CFS any more than Cancer , or Multiple Sclerosis does.
  4. ME is not a fatigue illness ,  in the way it is contextualised in CFS; you don't even have to have fatigue to have ME.
  5. A service cannot treat WHO-ICD-10-G93.3 ME/PVFS patients while also using the CDC/Fukuda CFS definition, without doing a gross disservice to taxonomic logic .
  6. The International Consensus Criteria (ICC) is very clear that 'fatigue syndrome' or 'chronic fatigue syndrome' are not to be conflated with ME/PVFS WHO-ICD-10-G93.3.
  7. The WHO have repeatedly clarified that diseases cannot be encoded under more than one rubric: for example on 4th February 2009, Dr Robert Jakob, Medical Officer (ICD), Classifications, Terminologies and Standards, WHO Headquarters, confirmed:
    CFS is a broad umbrella. This needs to be clarified. It is not possible to make a deduction from CFS. Volume I is the relevant volume for ME. ME is classified at G93.3 and is a specific disorder. The term CFS covers many different conditions, which may or may not include ME. The use of the term CFS in the ICD Index is merely colloquial and does not necessarily refer to ME. It could be referring to any syndrome of chronic fatigue, not to ME at all. ”
  8. The  hallmark symptom of ME- the likely Post Exertional impact of any activity is ignored by CFS; the hypersensitivity, the neurological , the endocrine, the cardiac and autonomic dysfunctions are also  ignored.
  9. The techniques used in the therapeutic treatment of Chronic Fatigue are not just inappropriate but  potentially damaging, dangerous -even life-threatening to someone with ME.
  10. The criteria for ME are very specific,whereas the CDC/Fukuda criteria for CFS are vague, undefined, unreliable and far too broad to be of any practical value.
  11. People with ME are seriously deprived of proper medical tests, treatments and research because of the imposition of the CFS label upon their disease.
  12. The CFS label causes countless  daily cases of psychosocial abuse and needless suffering to ME patients.


Comments

  1. Agreed, though it only gets you so far. My understanding was that people in Britain already called it ME, and ME patients are still treated horribly there.

    To what extent has "CFS" invaded your neck of the ocean?

    ReplyDelete
  2. ME and CFS are not being separated.

    They have taken a fatigue criteria and put it with the name ME. ME and CFS are now the same.

    ReplyDelete
  3. No, 'ciderkeys', you are wrong - people in Britain do not "already call it ME". I have written to my MP and received a reply both from her and from the Minister of State for Care Services to confirm the following -:
    The official name used by the Department of Health (and therefore the NHS) is "CFS/ME". This name will be used until further notice or until there is a change of Government policy.
    It is very important to realise that the Dept of Health does NOT use the term "ME" on its own.
    The very reason that patients are "treated horribly" is because ME is not called ME, but called CFS/ME.
    There is no specialist ME service to be referred to, if you ask your GP.
    All there is a CFS/ME Service, run by psychiatrists, where the therapies used are psychological ones ("graded exercise" and cognitive behavioural therapy). Oh, and antidepressants.
    The flagship "CFS/ME/Fatigue Centre" as it is called - note the "fatigue" in the name" - is at Barts Hospital, London, and run by psychiatrist Peter Denton White. White also advises the Government, and is on the Medical Research Panel which awards research fund grants.
    Around the country there are "CFS/ME" centres doing exactly the same thing as Barts.
    Take a look at one-:
    http://www.hertschs.nhs.uk/services/adult/Chronic_Fatigue/CF_ourservices.aspx
    They themselses say [quote]-:
    "The CFS/ME Service does not:
    Confirm diagnosis
    Order investigations and tests
    Offer medical advice
    Recommend medications
    Provide dietary advice"
    This is beacuse it is a CFS/ME service and not, repeat not an ME service. We do not have any ME services or specialist ME treatment of any kind in the UK!
    So this is what "CFS/ME" means and this is what we've got until policy changes and we treat M.E. (Myalgic Encephalomyelitis) as M.E. - which we in the UK emphatically do not.
    We DO NOT "call it ME" in the UK - this is the root of the problem, and this is what needs to change.

    ReplyDelete
  4. What a fantastic reply !! You have brilliantly highlighted the issues here in the UK- thank you so much !

    Greg

    ReplyDelete
  5. Thanks Cinderkeys for your comment - which I hope has been more than answered by Anonymous .

    Yes it is awful here in the UK - "CFS" and the Oxford Criteria are taken as the "Gold Standard" across the board. There is little regard, in reality for ME patients .

    People say, oh it's just about a name - what difference does it make; they just don't get it !

    The real issue is this : proper diagnosis is not happening - how many with a CFS label have an undiagnosed illness, that could be treated, how many have ME and are being actively harmed by CBT and GET at the so called Clinics ? In everyone's interest we MUST strive to get the ICC Criteria adopted a proper ME treatment pathway developed.

    Every day the nonsense term CFS is allowed to be used - by the ME Communities' extraordinary compliance and silence on the issue, people's lives will continue to be placed at risk.

    ReplyDelete

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