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NICE remove M.E. from neurological listings (UK)

Discussion in 'Action Alerts and Advocacy' started by Min, Nov 7, 2014.

  1. Min

    Min Guest

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  2. Wildcat

    Wildcat

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    Thanks Min.

    The post is from the Tymes Trust Facebook Page (for anyone who wants too follow the developments of this) https://www.facebook.com/tymestrust?fref=ts

    "NICE has removed it from their neurological listings as well"


    Who on earth is responsible for these cock ups (or shennanigans)? NICE is a faceless organisation which wields a horrendous amount of power.

    .
     
  3. Min

    Min Guest

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    M.E. no longer exists according to NICE.
     
    CantThink and justy like this.
  4. charles shepherd

    charles shepherd Senior Member

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    NICE have made this decision on the basis of a survey (published in 2011) which found that 84% of neurologists in the UK did not believe that ME/CFS was a neurological condition. They are now intending to place ME/CFS in a category of its own. Members of the Forward ME Group (MEA included) are all involved in how we should now respond to NICE on this.
     
  5. charles shepherd

    charles shepherd Senior Member

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    This is the 2011 report:

    http://www.meassociation.org.uk/201...eurological-illness-survey-results-discussed/
     
    Wildcat and Esther12 like this.
  6. maryb

    maryb iherb code TAK122

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    It just gets worse and worse, damn the neurologists, but hey whenever did any of them help us. Not me.
    Infectious Diseases - lets have it right this time.
     
    Min, justy, zzz and 1 other person like this.
  7. Sidereal

    Sidereal Senior Member

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    Neurologists have an exceptionally poor track record of judging what is and what is not a neurological condition. Not too long ago they believed MS was a psychiatric disorder. I don't see why their current opinion of ME should be taken as gospel. I've never met creatures as arrogant and intransigent as consultants in neurology. Would a bit of self-awareness and historical reflection really hurt the egos that much?
     
  8. Snow Leopard

    Snow Leopard Hibernating

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    Wow, a category of its own? Does that mean there will be new specialists trained in this new field?

    Oh sorry, I got ought and is confused again...
     
  9. ukxmrv

    ukxmrv Senior Member

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    "DWP recognises CFS/ME as a real and potentially significantly disabling condition. The assessment of individuals with CFS/ME, or indeed any other condition, is not dependent on the condition itself, the underlying cause of its classification but rather on the disabling effects. The Department of Health has indicated that they have “always relied on the definition set out by the World Health Organisation in its International Classification of Diseases (ICD) under ICD code 93.3, subheading other disorders of the brain”. The DWP is in agreement with this views."

    http://www.meassociation.org.uk/201...eform-tells-countess-of-mar-21-november-2011/
     
  10. Sasha

    Sasha Fine, thank you

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    @Jonathan Edwards - the fear here of course is that we're circling the plughole on the way to going down the drain of 'psychosomatic disorders' or similar.

    Just wondering what your take is on this? I think this is really where we suffer from not having a medical speciality to champion us or claim us as their own.
     
  11. Cheshire

    Cheshire Senior Member

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    I hope this category of its own is not something like "not completely organic, not completely psychiatric, a little bit of both" as some of the BPS proponents are advocating, having realise they can't ignore biological foundings, but judging them "stress related"...
     
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  12. charles shepherd

    charles shepherd Senior Member

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    Sasha As ME/CFS is a multisystem disease that crosses so many medical boundaries - infection, immunology, neurology, neuroendocrinology, muscle, cardiology etc - it has never fitted neatly into one specific -ology and it probably never will until we can clearly subgroup people under the ME/CFS umbrella in relation to both clinical and pathological phenotypes.
     
  13. user9876

    user9876 Senior Member

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    I quite like the idea of having a 'we don't understand the mechanism or have treatments' category. It seems strange to me that the medical profession cannot accept their ignorance and admit they don't have sufficient understanding to correctly classify something. Of course such categories should be viewed as temporary and their continued existence should be viewed as an issue for medical research.

    If there is a separate category it is important that this doesn't fall by default under psychiatry.
     
  14. maryb

    maryb iherb code TAK122

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    In the light of recent findings that so very many patients have several infections, whether they are viral, EBV, CMV, HSV1 & 2 etc and/or bacterial, Lyme, CPn etc. I would want my diagnosis and treatment started by an ID specialist. Then referred onto to any other relevant area of practice as the doctor saw fit for me as an individual. I can but dream....
     
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  15. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I do not have a strong feeling about what heading ME should come under. Lupus comes under rheumatology in practice, despite not being particularly rheumatological. Sarcoidosis is about as 'orphan' as ME. I don't think doctors take any notice of what section NICE puts anything under in fact. Whether it has implications in other respects I am not sure. To change the care provision we need some solid evidence for effective treatment I think.
     
  16. Esther12

    Esther12 Senior Member

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    I remember reading that and thinking 'what a worthless piece of research'... seems to have had political power though.

    I expect that the new NICE category is going to be unhelpful. My view is that it would probably be best to try to have patient groups oppose it, unless it's really great, rather than try to negotiate towards something which is not too terrible and playing along with the process.
     
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  17. charles shepherd

    charles shepherd Senior Member

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    Esther - I understand that NICE intend to place ME/CFS under a 'neutral heading' as ME/CFS (or CFS or CFS/ME). This will take some time to organise. At the moment I suggest that people leave further contact with NICE on this matter with the Countess of Mar and the Forward ME Group. I don't think letters to NICE from people with ME/CFS will help at this stage, and if some people write angry letters to NICE it could even be counter-productive.
     
  18. charles shepherd

    charles shepherd Senior Member

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    I would add that NICE has told us that they do not classify diseases - that is the job of WHO.

    The NICE website listing is purely for access purposes
     
  19. Sasha

    Sasha Fine, thank you

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    I take your point but surely we aren't the only such disease? What happens with other diseases that are multisystem disorders?

    And while we're waiting to be subgrouped, we need to keep out of the 'somatoform' category. What should we be doing? Do you think that this special category that's being planned for us is going to make it clear that this is an organic disorder?
     
  20. Sidereal

    Sidereal Senior Member

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    A new NICE category for ME/CFS and other lepers and untouchables. At least it reflects the real-world treatment we receive from GPs and hospitals.
     

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