Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
Discuss the article on the Forums.

Department of Health response on XMRV

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Dx Revision Watch, Nov 12, 2009.

  1. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    A user of the Whittemore Peterson Institute Facebook site has kindly
    given permission for the following response to be given wider circulation.

    Heath reported on WPI Facebook on 12 November that he wrote to the
    Department of Health. Their response was:

    "Thank you for your email of 28 October to the Department of Health about
    xenotropic murine leukemia virus-related virus and chronic fatigue
    syndrome/myalgic encephalopathy (CFS/ME).

    The Department of Health agrees with the World Health Organization's
    classification of CFS/ME as a neurological condition of unknown cause. The
    Department also agrees that CFS/ME is a genuine and disabling illness and
    can have a profound effect on those living with the condition. That is why
    research breakthroughs such as the one outlined in your email, are so
    important to developing the knowledge base.

    The National Institute for Health and Clinical Excellence (NICE) clinical
    guidelines are updated as needed so that recommendations take into account
    important new evidence. However, as I hope you will appreciate, as NICE is
    an independent body, the time-frame for revising guidance and the evidence
    it uses are matters entirely for NICE. You may therefore wish to raise this
    issue directly with NICE's Chief Executive, Andrew Dillon, at the following

    MidCity Place
    71 High Holborn
    London WC1V 6NA

    I think it also helpful to emphasise that NICE clinical guidelines are
    just that - guidelines for healthcare professionals use in conjunction with
    their clinical judgement and based on an individual assessment of each
    patient's needs. The guideline recognises that there is no one form of
    treatment to suit every patient and it does not force patients into
    treatments they do not want.

    The guideline emphasises a collaborative relationship between clinician
    and patient, that treatment and care should take into account personal
    needs and preferences, and that healthcare professionals should recognise
    that the person with CFS/ME is in charge of the aims of the treatment

    Cognitive Behavioural Therapy is a rehabilitative approach designed to
    modify the way patients think and behave about their illness and so improve
    physical symptoms. In common with other illnesses and conditions where it
    has been successfully used such as chronic pain, cancer, heart disease and
    diabetes, its use does not imply that the cause of the illness is

    The Department feels that it is not helpful to differentiate between
    biomedical and psychosocial treatments as, based on clinical evidence that
    is currently available, patients are best served by a holistic approach.

    You also comment on the paucity of bio-medical research. I know that many
    of the Department's stakeholders see biomedical research as the key to
    developing new treatments and the Department appreciates the
    concern about a lack of biomedical research in this area.

    As you may know, the main agency through which the Government supports
    medical and clinical research is the Medical Research Council (MRC). The
    MRC is wholly independent in its choice of which research to support and it
    does not generally earmark funds for particular topics. It maintains a
    rigorous decision making process and only funds research that is likely to
    make a significant contribution to knowledge and is a good use of
    taxpayers' money. Decisions to support proposals are taken on the grounds
    of scientific quality and whether the research proposed would be likely to
    inform the knowledge base. There is certainly no bias, and the Department
    knows that the MRC remains committed to funding scientific research in all
    aspects of CFS/ME.

    The Department understands that the MRC continues to attract a small
    number of proposals for biomedical research. The problem is that there
    appears to be a shortage of good and innovative ideas within the scientific
    community itself. This is something the Department knows that the CFS/ME
    community and the MRC are aware of, and the MRC have endeavoured to address
    this by engaging with patient groups to encourage high quality research
    proposals. The MRC continues to acknowledge the importance of research into
    CFS/ME, and it is difficult to see what more the MRC could do without
    lowering the quality threshold.

    I hope this reply is helpful.

    Yours sincerely,

    Priya Bassan
    Department of Health"


    Related information:

    Source: ME Research UK

    The Medical Research Council: a case to answer?


    CFS/ME projects currently funded by the MRC

    (Sources: MRC website; Hansard, written answers)

    .Two large clinical trials of new approaches to treating CFS/ME:

    PACE (Pacing, Activity and Cognitive Behaviour Therapy: a
    Randomised Evaluation, 2,076,363) [Prof. PD White, Psychological Medicine,
    Queen Mary and Westfield College]

    FINE (Fatigue Intervention by Nurses Evaluation, 824,129) [Dr
    AJ Wearden, Psychological Science, Uni. of Manchester]

    .A preliminary epidemiological project to test the feasibility of
    identifying the risk factors for persistent symptoms of fatigue and
    abdominal and widespread pain (118,263) [Prof. F Creed, Psychological
    Medicine, University of Manchester]

    .An epidemiological study to assess ethnic variations of the prevalence
    of a CFS-like illness, associations with potential risk factors, and coping
    behaviours (162,145) [Prof. K Bhui, Cultural Psychiatry and Epidemiolgy,
    Queen Mary and Westfield College]

    .Indirect support through a trial exploring the management of patients
    with persistent unexplained symptoms [Specifics unknown]

    .One project was mentioned in Hansard (12th June 2008) but is not on the
    MRC website: General and specific risk markers and preventive factors for
    chronic fatigue and irritable bowel syndromes (367,000) [Dr C Clark,
    Centre for Psychiatry, Barts and The London School of Medicine]

    Table. Unfunded applications to the MRC between 2002 and 2008

    Time-frame (number of applications) CFS/ME subject area

    2002 to 2005 (11 total) Neurophysiology of fatigue;
    Population-based/epidemiological studies (4 applications);
    Neurotransmitters and stress; Neuroimaging; Clinical and laboratory
    characterisation physiology/diagnosis); Dietary intervention - RCT;
    Facilitated self-help - RCT; Psychosocial and genetic factors in young

    2005 to 2006 (12 total)
    Pathophysiology, including studies regarding
    genetics/biomarkers, immunology and neuroimaging (7 applications);
    Population-based/epidemiological studies (3); Primary care study;
    Experimental medicine study

    2006 to April 2007 (7 total) Cognitive outcomes in children -
    pathophysiology; Epidemiological studies - epidemiology; Biomarkers;
    Pathophysiology (2 applications); Molecular pathogenesis - pathophysiology;
    Molecular and genetic characterisation - pathophysiology; Neuroimaging -

    May 2007 to June 2008 (3 total)
    Biomarkers - pathophysiology; Management
    and treatment - intervention; Management and treatment - observational
  2. The patient asks for info on XMRV and they get a letter about Behavioural Therapy.

    What an insult.

    Did the person who wrote the letter back to the patient, know a member of ME-Action UK had to
    write to the Department of Health (DOH) who run the NHS - telling them, they had
    linked the XMRV news under MENTAL HEALTH for CFS?

    I thought they stated ME/CFS was a neurological disease?
    Must have been a 'glitch'......

    I screen-grabbed this for prosperity and can provide the evidence here for you guys if you wish.

    Welcome to 'Great Britain'.
  3. V99


    I'd like to see it. Pretty please.

    I'm from the UK too. I guess they haven't passed on the neurological idea to many.:rolleyes:
  4. Aftermath

    Aftermath Guest

    Hang On!

    You guys in the UK need to hang on until if and when the study is successfully replicated. Then make your push as soon as the evidence is insurmountable.

    I know that it feels like forever to those who have been sick a long time.
  5. fresh_eyes

    fresh_eyes happy to be here

    mountains of north carolina
    I think DOH should in this case be pronounced Homer Simpson style: "D'oh!" :D
  6. Katie

    Katie Guest

    I agree with Aftermath, believe me, when the confirmations start flowing and it becomes something that requires formal diagnosis, treatment, trials etc. then we need to be ready to pounce and be active. The CMO, NICE, MRC, our MPs, Health Secretary, the media, the internet and everyone necessary to get things moving and use the evidence to fight our way through any resistance. Right now, we've got to let the US lead the way and then we can do our bit here.

    I worry about what the reaction will be and whether it will be a simple process to reverse years of psychiatric control and Wessely's might, there's a lot of political capital invested in CBT/GET and an equal number of reputations.
  7. Mark

    Mark Former CEO

    Sofa, UK
    Well said Katie, this is going to be a tough battle no question. Aftermath's right, it's too early for the definitive push, and letters on this subject now would be premature, but the crucial thing now is to start organising, get groups of people ready, start bringing friends and family up to speed, build up a dossier of resources, discuss the details of the line we want to take, etc, etc. We have a window of opportunity to plan this and the time to start is now. What's the first step? Set up a group on here for it? Can we then keep the strategic discussions off the internet? No point warning him too much about our plans...
  8. Min

    Min Guest


    The study will most probably be 'replicated' here in the UK using the Oxford guidelines on M.E./CFS for selecting patients. These were developed by psychiatrists of the Wessely school to deliberately exclude patients with neurological M.E./CFS but to include patients with depression.

    In other words, the WPI study will be deliberately discredited.

See more popular forum discussions.

Share This Page