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Early Day Motion (271) on the NICE guideline tabled by Stephen Timms MP:

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Sep 9, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    Early Day Motion (271) on the NICE guideline tabled by Stephen Timms MP:

    That this house welcomes NICE’s consultation with patients and their representatives on whether to review its clinical guidelines on Chronic Fatigue Syndrome/ME (CG53);

    notes that ME is a serious, debilitating, chronic health condition affecting about 250,000 people in the UK,

    and is concerned that about half of the patients asked in a number of surveys reported adverse effects on their health from Graded Exercise Therapy (GET) which is recommended by NICE;

    notes recent biomedical research indicating an abnormal physiological response to exercise in ME patients,

    and that the US Centre for Disease Control no longer recommends GET for ME;

    notes also the unanimous call from consultation stakeholders, and a petition of 15,180 patients, for NICE to update its guidelines on ME;

    and urges NICE to review CG53 and to consider patient experience and recent international scientific evidence in its assessment of the merits of GET for treating ME.


    Please envourage other MPs to sign this EDM

    More info on EDMs:

    Early Day Motions (EDMs) are formal motions submitted for debate in the House of Commons. However, very few are actually debated. EDMs allow MPs to draw attention to an event or cause. MPs register their support by signing individual motions.

    http://www.parliament.uk/edm

    Previous EDM on ME/CFS - tabled by Ian Swales MP in October 2010:

    http://www.meassociation.org.uk/2011/09/first-early-day-motion-of-the-new-parliament-on-me/

    Stephen Timms MP:

    http://www.stephentimms.org.uk
     
    Last edited: Sep 9, 2017
  2. charles shepherd

    charles shepherd Senior Member

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  3. charles shepherd

    charles shepherd Senior Member

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    You can follow the parliamentary progress of this EDM here:

    http://www.parliament.uk/edm/2017-19/271

    This link also shows which MPs are signing up

    The only other MP to sign so far is Jim Shannon (DUP - Northern Ireland).

    I have met John Shannon MP over in NI in the past at a fundraising event and he is a solid supporter when it comes to ME/CFS issues

    CS
     
  4. charles shepherd

    charles shepherd Senior Member

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  5. charles shepherd

    charles shepherd Senior Member

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    More key background information which people may find helpful if you are writing to your MP to ask him/her to support this EDM - taken from MEA submission to the NICE consultation process:

    3. Do you have any comments on areas excluded from the scope of the guideline? Yes.


    a) The NICE expert group appears to have ignored or dismissed the fact that outside the UK, especially in America, there has been a very significant shift in official guidance on management of ME/CFS away from the use of CBT and GET.


    In America, guidance on management issued by the highly respected Centres for Disease Control (CDC) has now dropped all reference to their previous recommendations relating to CBT and GET. As a result, the CDC is now producing a far more balanced, comprehensive and pragmatic overview of management of ME/CFS. This approach is welcomed by the US patient community, whereas the ‘one size fits all’ approach involving CBT and GET in guidance produced by NICE, is opposed by the UK patient community.



    Link to new CDC guidance: https://www.cdc.gov/me-cfs/treatment/index.html


    In a letter dated May 2017, sent to 85,000 doctors by Dr Howard Zucker, Commissioner at the New York Health Department, revised guidance relating to the use CBT and GET in ME/CFS is summarised as follows:


    In the past, cognitive behavior therapy (CBT) and a graded exercise therapy (GET) were recommended as treatments. However, these recommendations were based on studies that included patients with other fatiguing conditions. Because of the hallmark intolerance to exertion of ME/CFS, exercise may actually worsen the health of those living with this disease. Currently, there are no FDA approved treatments for ME/CFS.


    Link https://drive.google.com/file/d/0B37JHmPXER6JZkZRd0hIalA2bUE/view


    With regard to the ethical position of the situation facing NICE, we cannot stress too highly that the significant change in direction taking place in America regarding the use of CBT and GET does necessitate a revision of the NICE guideline. This should reflect the fact that there is now a serious debate surrounding the use of these two treatments taking place amongst both patients and health professionals. This is the case regardless of whether the UK medical establishment agrees or disagrees with the US position.


    As organisations responsible for the nation’s health care, NICE and the Department of Health have a duty to protect every patients right to receive safe and appropriate care. They should therefore be producing recommendations on treatments that are acceptable, effective and safe – as well as providing up to date information that can be presented and discussed with patients as part of the long established principle of informed consent.


    The new position taken in the US establishes that there is growing and convincing evidence to support the view that people with ME/CFS have a serious and debilitating biomedical condition involving neurological, immunological and energy producing impairments. This is a condition that does therefore require a biomedical approach management. The change in position in America has profound ramifications in relation to a revision of the NICE guideline and cannot be ignored.


    b) Patient evidence on the acceptability, efficacy and safety of CBT, GET and Pacing appears to have either been dismissed or ignored by the expert group. This is in sharp contrast to the Chief Medical Officer’s Working Group Report on ME/CFS. The CMO report recognized the importance of taking patient evidence into equal account where there are strong and differing opinions on the value of CBT, GET and Pacing.


    Extensive patient led research carried by The MEA, and other ME/CFS charities, has consistently found that the majority of people find CBT to be of no value. Over 50% report that GET has made their condition worse.


    The MEA carried out the largest ever survey of patient reports on the use of CBT, GET and Pacing. This was followed up with a detailed report containing qualitative and quantitative patient evidence. A paper carrying these results, which has been subjected to peer review, has been accepted for publication in the Journal of Health Psychology. A summary of the MEA report, along with a link to the full report, can be found here:


    http://www.meassociation.org.uk/2015/05/23959/


    c) The expert group has not given proper attention to the widespread and serious criticisms of the methodology and presentation of results from the PACE trial from academics, clinicians and patients.


    This criticism includes a letter to the editor of Psychological Medicine from over 100 clinicians, medical researchers, epidemiologists and statisticians, calling for the retraction of the PACE trial recovery paper and the re-analysis of the recovery data by Wilshire et al who concluded:


    The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments.


    References:


    Letter to the editor of Psychological Medicine:


    http://www.meassociation.org.uk/201...tter-to-psychological-medicine-13-march-2017/



    Re-analysis of PACE trial recovery data:

    Wilshire C, Kindlon T, Matthees A (2017) Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial. Fatigue: Biomedicine, Health & Behavior 5: 43–56.


    http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724?journalCode=rftg20
     
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  6. NelliePledge

    NelliePledge plodder

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    As part of my job before I had ME about 15 years ago I attended a couple of meetings with Stephen Timms. He seemed to me like someone with integrity and not arrogant like some politicians can be. I think he is a really good person to have on our side well done @charles shepherd and colleagues.
     
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  7. Skycloud

    Skycloud Senior Member

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    Time for another letter to my MP
     
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  8. Jo Best

    Jo Best Senior Member

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    As pointed out in a comment on the above by
    tonybrittonOctober 14, 2010 at 9:34 am -
    The EDM 778 was signed by 123 MPs earning a short debate in Westminster Hall on 2nd Febbruary 2011 and prompting an announcement by the MRC of £1.5m (later increased to £1.65m) ringfenced ostensibly to investigate the causes of 'CFS/ME'. Here is a regional ITV news report about it:

     
  9. charles shepherd

    charles shepherd Senior Member

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    EDMs are normally used by MPs to draw attention to a particular issue of concern - as is the case here with the NICE guideline review

    They can lead to a short debate - as occurred in the case of the EDM from Ian Swales, who was an excellent MP but has now left parliament,

    However, securing a debate in the House of Commons is the exception rather than the rule

    Obviously, the more MPs who sign an EDM the more influence it may have

    CS
     
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  10. charles shepherd

    charles shepherd Senior Member

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    2011 ring fenced funding from the MRC:

    Understanding the mechanisms of CFS / ME – a call for proposals
    As part of our continuing commitment to the area, in 2011, a call for proposals made available up to £1.5million for new research into the mechanisms of CFS/ME.

    Research proposals focused on one or more of six priority areas identified by experts in the fields (see below). A key aim of this call was to encourage new and innovative partnerships between researchers already working on CFS/ME and those in associated areas.

    The call focused on the following research areas:

    1. Autonomic dysfunction
    2. Cognitive symptoms
    3. Fatigue
    4. Immune dysregulation (eg through viral infection)
    5. Pain
    6. Sleep disorders
    More info here:

    https://www.mrc.ac.uk/funding/science-areas/population-systems-medicine/cfsme/

    CS
     
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  11. NelliePledge

    NelliePledge plodder

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    emailed my MP - not sure if it will make any difference - I will report back if I get anything useful back from her

    as well as the ME Action stuff I included a link to the Telegraph article at the end of July about the Montoya/Mark Davis work - the title has been sorted now and the article is pretty good - thought this was a good one to use as my mp is a Conservative so Telegraph will have more credibility with her
     
  12. Barry53

    Barry53 Senior Member

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    Can you remind me of the link please.
     
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  13. SamanthaJ

    SamanthaJ Senior Member

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    The sample email from #meaction says EDM 217 instead of 271. The parliament website says 271, so I'm assuming that's correct.
     
  14. Barry53

    Barry53 Senior Member

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    Sorry, I meant the Telegraph article.
     
  15. SamanthaJ

    SamanthaJ Senior Member

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    Sorry, I wasn't answering you, it was something I'd just noticed.
     
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  16. SamanthaJ

    SamanthaJ Senior Member

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  17. Jo Best

    Jo Best Senior Member

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    Another resource when emailing MPs could be the petition that closed early because of the general election.
    It garnered almost 11,000 signatures in about 6 weeks and that's just UK residents or British citizens.

    The government's stock response (posted on the petition site) was that NICE would be issuing a decision whether to update CG53, and NICE published its provisional decsion and surveillance review shortly after. https://petition.parliament.uk/petitions/190618
     
  18. charles shepherd

    charles shepherd Senior Member

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    Just in case there is any confusion - the EDM is numbered 271

    Progress can be followed on the link below, including the names of any MPs who sign it:

    http://www.parliament.uk/edm/2017-19/271

    CS
     
  19. NelliePledge

    NelliePledge plodder

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    ladycatlover likes this.
  20. Jenny TipsforME

    Jenny TipsforME Senior Member

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    ladycatlover and Barry53 like this.

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