August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
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More questions from the Countess of Mar

Discussion in 'General ME/CFS News' started by MeSci, Jul 15, 2017.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    http://www.parliament.uk/business/p...ents/written-question/Lords/2017-07-10/HL637/

    Written question HL637: The Countess of Mar 10-07-2017


    Department of Health

    HL637

    Her Majesty's Government who were the experts the National Institute for Health and Clinical Excellence consulted in their recent review of Clinical Guideline CG 53 for chronic fatigue syndrome and myalgic encephalomyelitis: diagnosis and management.

    http://www.parliament.uk/business/p...ents/written-question/Lords/2017-07-11/HL684/

    Written question HL684: The Countess of Mar 11-07-2017

    Department of Health

    HL684

    Her Majesty's Government what assessment they have made of the chronic fatigue syndrome myalgic encephalomyelitis (ME/CFS) clinical services which were set up between 2004 and 2006; what proportion of patients accessing services recover from ME/CFS or show signs of improvement; and what assessment they have made of the value for money of these services.

    http://www.parliament.uk/business/p...ents/written-question/Lords/2017-07-11/HL685/

    Written question HL685: The Countess of Mar 11-07-2017

    Department of Health

    HL685

    Her Majesty's Government whether they have any plans to set up an independent review of ME/CFS services which includes an epidemiological study to establish the true incidence of ME/CFS in the population and the impact of the shortage of doctors trained in this specialism; and, if not, why not.
     
  2. alex3619

    alex3619 Senior Member

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    We need the hard questions to be asked, repeatedly, until we reach a place where they are no longer required. Thankfully we have the Countess of Mar.
     
    anni66, Somer, Binkie4 and 13 others like this.
  3. charles shepherd

    charles shepherd Senior Member

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    These three House of Lords PQs follow on from the three recent Forward ME Group meetings

    Minutes for FMG meetings:

    http://www.forward-me.org.uk/Minutes.htm

    Minutes for the FMG meeting on Tuesday 11th July with Dr Diane O'Leary, from the Kennedy Institute of Ethics in Washington, USA are being prepared

    CS
     
  4. Revel

    Revel Senior Member

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    How would this even be possible without a diagnostic test for ME/CFS becoming available that the NHS would be prepared to implement?

    I can't imagine the use of GP records would be a reliable source of information, given the fact that anyone who presents with symptoms of being "tired all the time" and has nothing untoward show up in their routine bloodwork currently qualifies for a CFS label.
     
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  5. RogerBlack

    RogerBlack Senior Member

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    There are actual random sampling techniques used sometimes.
    You call people at random.
    You then follow up people that pass this random screen.
    https://www.ncbi.nlm.nih.gov/pubmed/23631737
    From the related paper: https://www.ncbi.nlm.nih.gov/pubmed/17559660 "We estimated that 2.54% of the Georgia population suffers from CFS, which is 6- to 10-fold higher than previous population-based estimates in other geographic areas. These differences may reflect broader screening criteria and differences in the application of the case definition. However, we cannot exclude the possibility that CFS prevalence may be higher in Georgia than other areas where it has been measured."
     
  6. Revel

    Revel Senior Member

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    Surely such a technique would only uncover mildly affected CFS patients? Those who are moderately or severely affected most likely would not be answering the phone in the first place.

    I am rarely well enough to take a call and usually do so only from people I know, who are aware that my verbal communication skills are limited and that I may cut the conversation short if I run out of words/energy.

    It also depends upon which GP I see (once every 'blue moon') as to whether or not they acknowledge that I have ME/CFS at all. :confused:
     
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  7. RogerBlack

    RogerBlack Senior Member

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    I don't disagree.
    It is an important additional way to capture people not found in other surveys though
     
  8. NelliePledge

    NelliePledge plodder

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    Im mildly affected and I dont answer my landline these days its always someone trying to con you, sell you a new central heating boiler or a recorded message I think phoning people up is a bit 20th century
     
  9. NelliePledge

    NelliePledge plodder

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    great question will be fascinating to see how they try to wriggle out of that one
     
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  10. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I expect they'll claim 'inefficient money' for as many questions as possible.

    I know that feeling all too well...
     
  11. NelliePledge

    NelliePledge plodder

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    they might get away with it in a PQ but if the Countess can persuade a Select Committee to look into it that would be a different matter
     
  12. Revel

    Revel Senior Member

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    Again, how many of these patients have been misdiagnosed as having ME/CFS because there is no diagnostic test available? How can they recover or improve from an illness that they do not have?

    These clinics do not distinguish between 'CFS' and 'chronic fatigue' - "It's all the same thing", as one physiotherapist told me.

    Also, only mildly affected ME/CFS patients are able to attend such services.
     
    Daisymay, trishrhymes and slysaint like this.
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    The reply to HL684 (sorry about delay - struggling):

    Lord O'Shaughnessy

    No central assessment has been made of chronic fatigue syndrome/myalgic
    encephalomyelitis (CFS/ME) clinical services established between 2004
    and 2006. The commissioning of services for people with CFS/ME is a
    local matter, and the management of patients within such services is the
    responsibility of the commissioners, providers and clinicians
    responsible for their care. Clinical commissioning groups have a duty to
    exercise their functions effectively, efficiently and economically

    Since its publication in 2007, the National Institute for Health and
    Care Excellence (NICE) clinical guideline on the management of CFS/ME in
    adults and children, which set outs best practice on the care, treatment
    and support of people with the condition, has supported the local
    National Health Service in delivering services for people with the
    condition. The guidance recognises the challenges in managing a
    condition for which there is no definitive diagnostic test, no clear
    understanding of the causes and process of disease and no cure. The
    guidance is also clear that there is no one form of treatment to suit
    every patient and that treatment and care should take into account the
    personal needs and preferences of the patient. NICE is currently
    reviewing the guidance to ensure it reflects the latest available
    evidence and a decision regarding this matter is expected shortly.

    --------
    (c) 2017 Parliamentary copyright
     
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    reply to HL685:


    Lord O'Shaughnessy

    There are no plans to set up an independent review of chronic fatigue
    syndrome/myalgic encephalomyelitis (CFS/ME) services. Services for
    patients with CFS/ME are supported by independent, evidence-based
    guidance produced by the National Institute for Health and Care
    Excellence on the diagnosis, treatment and support of patients with the
    condition. Commissioners should deliver services that meet the needs of
    local popuations. Assessments of service need for CFS/ME may be
    supported by the available population prevalence estimates as required.

    --------
    (c) 2017 Parliamentary copyright
     

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