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ALL Countries Please sign the MEA's new petition to NICE:do not classify ME as 'functional'

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Sep 27, 2017.

  1. Countrygirl

    Countrygirl Senior Member

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    https://www.change.org/p/sir-andrew...m_medium=copylink&utm_campaign=share_petition

    http://www.meassociation.org.uk/201...-not-a-functional-disorder-27-september-2017/

    ME Association Petition: M.E. is not a functional disorder | 27 September 2017


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    The ME Association has today launched a new petition against NICE and its proposed new guideline on suspected neurological conditions: M.E. is not a functional disorder.

    New NICE guideline: suspected neurological conditions

    The new guideline is intended to inform all GPs and medical professionals how and who they should refer to neurology for specialist care. It is vital that we try and ensure the information it contains is accurate and does not exclude people with M.E. from having access to this medical discipline.

    Overall, the new guideline is attempting to reduce the number of referrals to neurology by transferring them elsewhere, and it could leave people with M.E. abandoned by a discipline that should be welcoming them.

    Our petition follows the submission recently made by Forward ME and is in complete support of their demands.

    The suspected neurological conditions guideline specifically refers to M.E./CFS as a ‘functional’ disorder, which it defines as being ‘driven by emotion’ that, ‘may mimic physical disease’.



    Despite NICE claiming its guidelines are based on sound research evidence, no such evidence exists or has been presented by the guideline development group to support the notion that M.E./CFS is a functional disorder.

    Forward ME – of which the ME Association is a member – has called for all such references to be removed.

    M.E. and CFS have long been recognised as neurological disorders by the World Health Organisation and this distinction has been confirmed many times by the Department of Health and UK Government, most recently back in July by Lord O’Shaughnessey in a debate with the Countess of Mar and Lord Hunt:

    “Regarding the classification of chronic fatigue syndrome and myalgic encephalomyelitis, or CFS/ME, the Government accept the World Health Organization’s classification of the illness as a neurological condition of unknown origin.”



    NICE guideline on M.E./CFS

    The NICE guideline for M.E./CFS makes no mention of this disease being considered a functional disorder, or that it is considered to be caused by emotions, and we will do our very best to ensure that this remains the case while the guideline is reviewed and updated.

    It was interesting to note, when documents relating to the ongoing guideline review process were released, that:

    ‘The Association of British Neurologists also takes an interest in [M.E./CFS] as one that is common, disabling and distressing and involves abnormal nervous system functioning.’



    This comment seems rather at odds with what has been written about M.E./CFS in the proposed guideline on suspected neurological disorders.



    The Petition

    We want to give everyone the opportunity to demand that NICE remove all reference to M.E./CFS from the new guideline on suspected neurological disorders, and to claims that M.E./CFS is a ‘functional’ disorder.

    We believe that neurology should not be trying to reduce access to its’ medical experts, but should be welcoming and supporting people with this disease. We need help, not disdain.

    We need neurology to:

    • help with diagnosis and management throughout the period of ill-health,
    • provide reassurance and understanding,
    • advise on the best course of treatment,
    • be more involved with research into the biomedical nature of M.E./CFS
    Please sign the petition and help us demonstrate to NICE that once again, we are not prepared to stand by while others make decisions about our healthcare without proper consideration and respect.

    We will aim to close the petition on Wednesday, 11 October at 5pm.

    Thank you.

    CLICK HERE TO TAKE YOU TO THE PETITION!
     
  2. Sasha

    Sasha Fine, thank you

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    Joh, snowathlete, Esperanza and 2 others like this.
  3. Wonko

    Wonko Senior Member

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    @charles shepherd

    Signed but confused, where has this information on the "planned" new NICE guidelines come from?
     
    Esperanza likes this.
  4. Countrygirl

    Countrygirl Senior Member

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    In case CS isn't around yet, I understand it is referring to neurology guidelines where ME is listed as a FND. I know a number of ME patients are now being given that label.

    CS will be able to correct me when he 'arrives'.
     
  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    This is a very interesting document, in that it apparently says:

    a ‘functional’ disorder, defined as being ‘driven by emotion’ that, ‘may mimic physical disease’.

    Now that is a very very very big admission. When I was in medicine there were two definitions of 'functional' in this sense.

    1. A condition for which no structural cause could be found, only a change in function, assumed to be due to some unidentified shift in physiology.

    2. A definition that was never written down but only conveyed by a nod and a wink, approximating to the one in this document.

    The advantage of this dichotomy seemed to be that physicians who were that way inclined could use the term pretending it had definition 1 when in fact they wanted to imply definition 2.

    What surprised me was when I consulted a physician relative about abdominal pain at night and he ended up trying to 'reassure' me that it was only 'functional'. In fact it turned out to be due to parasites I had acquired in India. I would have been quite happy if he was using definition 1 because I can quite believe that people have abdominal pain for unknown physiological reasons (even if not in my case as it turned out). But I had to conclude that he was using the term simply because everyone else did and it was convenient. And I had a suspicion that like them he really meant definition 2. He was so used to the patter that he did not seem to remember that he was talking to a relative who was a clinical physiologist who would perfectly well understand and accept 'due to some unidentified shift in physiology'.

    If functional really is defined as 'driven by emotion' that 'may mimic physical disease' then whoever is using it is stepping way over the mark in terms of medical knowledge. They are bullshitting, plain and simple.
     
  6. AndyPR

    AndyPR Senior Member

    They've used change.org again so, based on their previous petition, anybody can sign.
     
  7. trishrhymes

    trishrhymes Senior Member

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    I have, I hope, signed the petition. I think it's really important. We are in danger of being dumped in the MUS / functional disorders dustbin and denied proper investigation, instead being offered only generic psychological therapy for functional disorders under the IAPT (improving access to psychological therapies) banner.

    I have attempted to post a comment on the petition, but my screen has frozen on it, so I'm copying it here and will try to re-post it later on the petition. I got a bit carried away in the hope that the addressee will actually read the comments.

    Edit: I had posted a copy of my comment on the petition here, but it has now appeared on the petition, so I've deleted it from here. This thread is not about me!
     
    Last edited: Sep 27, 2017
    Barry53, Hilary, Esperanza and 14 others like this.
  8. AndyPR

    AndyPR Senior Member

  9. Wonko

    Wonko Senior Member

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    The other side.
    MeSci and AndyPR like this.
  10. Firestormmer

    Firestormmer

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    Morning,

    Charles is away from the office this week.

    The information comes from a new NICE guideline on suspected neurological conditions which has yet to be published. Forward ME recently submitted a response as stakeholders in the consultation process, and I believe Action for M.E. did likewise.

    The petition is an opportunity for individuals to tell NICE that they also disagree with the labelling of M.E./CFS as a functional disorder, "driven by emotion", "which may mimic physical disease".

    The quotes come from the new guideline and there has been no evidence provided to support these claims. Forward ME has called for all references to ME/CFS to be removed.

    If you visit the ME Association website blog (or the petition itself), it provides all relevant links to the NICE documentation and to previous blogs on this subject:

    http://www.meassociation.org.uk/201...-not-a-functional-disorder-27-september-2017/
     
  11. Firestormmer

    Firestormmer

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    Hi Sasha,

    Yes. As with the previous ME Association petition, anybody can sign. NICE is quite influential and if this is permitted to happen it could have consequences for other countries - so it would be great if this reached at least as many people as last time.
     
  12. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I have just had an interesting conversation with my wife.

    I was under the impression that Andrew Dillon was a doctor. That meant that if he was going to be resistant to seeing the PWME side of things there might be pretty little chance of changing his mind. Doctors are like that.

    However, when I mentioned his name my wife said she remembered him from the Royal Free where he was general (i.e. non-medical) manager. She says she remembers him as being a sensible straightforward guy that everybody thought well of.

    He seems to have stonewalled a bit on recent requests for names of advisors but I think that was probably sticking to reasonable protocol. I am much more optimistic that once things are out in the open in the media he will be open to taking a sensible view. Maybe he already has.

    I think this petition is well judged (I have signed). It is calling out simple bullshitting on the part of the neurologists.
     
  13. Sasha

    Sasha Fine, thank you

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    I just want to check with @charles shepherd that that's the intention because on some previous ME petitions (or possibly polls on their site?) the intention was to limit things to UK respondents even though the website allowed international signatures.

    @Countrygirl, if Charles confirms that this is international, I wonder if it would be a good idea to start your title with, 'International: Please sign...' etc.
     
  14. Jo Best

    Jo Best Senior Member

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    This is why I don't trust the NICE decision to update CG53, as the attempt to reframe ME as a functional neurological disorder has been advancing over the past few years and is implicit in the 'topic expert' comment quoted by Invest in ME Research in their stakeholder submission: http://www.investinme.org/IIMER-Newslet-17-07-04.shtml

     
  15. Countrygirl

    Countrygirl Senior Member

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    I have had a quick scan of the document to check on its references to ME.

    I note that FND and ME/CFS are lumped together, but ME is not actually listed as a subset of FND..............yet. It appears that they are slowly, slowly making moves to capture ME under the FND label. I know ME patients who have recently seen neurologists have had their previous ME diagnostic label replaced with one of FND. I think it is best that we keep away from them until they have been better educated.

    Here is the info I found that relates to us in the document:

     
  16. Rick Sanchez

    Rick Sanchez

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    I am from Denmark where ME/CFS is classified as a functional somatic disorder. I have to stress that it is of the greatest importance that ME/CFS does not get classified as a functional somatic disorder in the UK.

    Denmark actually used to be one of the leading countries in ME/CFS research, but after ME/CFS has been classified as a functional somatic disorder, research has been non-existent. Even more disastrous patients in Denmark do not even get diagnosed with ME/CFS. The logic is simple, since ME/CFS is a functional somatic disorder, it doesn't make sense to diagnose people with the disease. What is worse, in Denmark, the researchers behind the functional somatic disorders have taken the functional somatic disorders to their natural and only logical conclusion. That there is only one functional somatic disorder, and that the diseases that make up the disorder are not separate entities, but instead the same disease. In Denmark the disease is known as Bodily Distress Syndrome.

    The paper that started it all is by Wessely and Sharpe:
    https://www.researchgate.net/publication/12810185_Functional_somatic_syndromes_One_or_many

    I advise everyone in the UK to take this issue extremely seriously. DO NOT, underestimate this issue. I agree with other users, there has clearly been an attempt by multiple psychiatrists in the UK to push for the functional somatic disorders in the UK lately, and this development has to be stopped at all costs. Most importantly, because the concept of functional somatic disorders is so dangerously appealing to know-nothing politicians who wish to make health care more ''efficient'', ie. save money. Once politicians see an easy way to ''save money'', no amount of logic will sway them.
     
    Last edited: Sep 27, 2017
  17. Jo Best

    Jo Best Senior Member

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    Also, some neurologists in UK, so once again, we're up against people whose careers are invested in this, for example, "Dr Jon Stone is a Consultant Neurologist and Honorary Reader in Neurology, who specialises in functional disorders." http://www.ed.ac.uk/clinical-brain-sciences/people/principal-investigators/dr-jon-stone

    Jon Stone writes about 'Functional symptoms in neurology': http://www.functionalmovementdisord...Stone-Bare-Essentials-Functional-Symptoms.pdf

    Regarding psychiatrists, this by PACE trial PI Peter White, was another red flag:
    'Time to end the distinction between mental and neurological illnesses': http://www.bmj.com/content/344/bmj.e3454
    BMJ2012; 344doi: https://doi.org/10.1136/bmj.e3454(Published 24 May 2012)

    If specific references to ME and CFS (and fibromyalgia) are left out of the final NICE guideline for FND (I don't see NICE resisting that under the circumstances as the FND guideline is more symptom oriented) we need to remain alert to FND and its variations being incorporated into the updated NICE guideline/s for ME and/or CFS.

    So I support this petition: https://petition.parliament.uk/petitions/200066
     
    ladycatlover, Barry53, Jan and 13 others like this.
  18. Cinders66

    Cinders66 Senior Member

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    I'm not sure how realistic it is to ask neurologists to welcome us in and do our care as a specialism except for distressing neurological symptoms as part of ME. From what I've read they're stretched covering their standrard patients, most don't see us as neurological illness and even some of our Drs don't and so on. Maybe I'm just put off by my one time experience. What specialists do people with metabolism problems go under? With regards to neurology, aside from some structural brain change isn't the thought we have things affecting neurological function rather than being neurological damage? However the classification of functional neurology is too reductive and too easily psychologised to be appropriate for complex systemic disease.
     
  19. Sean

    Sean Senior Member

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    Add just one word, and the whole meaning changes:

    One is an absolute statement (there is no physical pathology), and the other is a conditional statement about the current state of knowledge (there is no known physical pathology).

    The difference is a universe wide.
     
    Last edited: Sep 28, 2017
  20. Large Donner

    Large Donner Senior Member

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    It wont stop them using it though, infact they will use this nonsense even more once given a licence to do so. Reduced waiting lists, less testing, reduced bottom line, easier job. They wont even have to train junior medics they can just let them know in no uncertain terms that using the diagnosis of functional is how one keeps their job in neurology.

    They will be rubbing their hands in glee at the prospect of this happening.
     
    Last edited: Sep 27, 2017
    ladycatlover, Jan, Jo Best and 6 others like this.

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