UKers please read re: Parliamentary Inquiry into ME/CFS

Discussion in 'Fibromyalgia Main Forum' started by tansy, Nov 27, 2005.

  1. tansy

    tansy New Member

    Whether we want our cases to be included in the forthcoming Inquiry or not, this is the perfect opportunity for all PWME/CFS in the UK to ensure the Parliament knows that the NHS is failing most of us. If you have been refused Tx, have had other health issues ignored, have found health professionals prejudicial in how they treat you, or been made worse through Tx based on Functional Somatic Disorders, please write to Dr Ian Gibson asap

    Dr Ian Gibson M.P.,
    House of Commons,
    London,
    SW1A OAA

    According to Dr Ian Gibson M.P. - Chair of the Parliamentary
    Inquiry into ME/CFS, all written submissions must be received by 20th December 2005. Due to the seasonal postal delays in London, and the time it takes for his assistant to collate the information, it is suggested that anyone wanting their case to be included in the Inquiry should send their submissions to arrive before December 15th.

    Only those who have sent in written submissions will be invited to present their case; for those too ill to attend the Inquiry video presentations have been proposed.

    Not all submissions are being acknowledged so please send a copy to your MP.

    As for me - I am going to have a field day and an opportunity to further educate my already supportive MP.

    Tansy
  2. RENA0909

    RENA0909 New Member

    I hope you get somewhere with this because I know how much of a fighter you are for the cause of ME/CFS and you are so knowledgable (sp) about this illness since you are a sufferer yourself.

    Rena
  3. Rosiebud

    Rosiebud New Member

    maybe this can make a difference.

    Is there a particular form the submissions should take??

    love
    Rosie
  4. tansy

    tansy New Member

    Hi Rosie

    I have yet to find any good recommendations for this so I am writing an introduction and enclosing more detail. If I do come across anything that might help us all I will post it here.

    I hope my contribution will highlight the NHS's failures over treating ME/borreliosis generally and other unrelated but treatable problems that would have been investigated properly had I not been Dx with ME and the medical misadventures in my own case. This is an all too common problem for PWME.

    My submission will also give me the opportunity to ask why I am having to self fund all my Tx and tests, apart from the zopiclone, since the abnormalities I am addressing have been confirmed by good quality biomedical research and/or test results. Tests done over the years back up my case, but the findings were ignored by the psychologisers, so I will include the price I have been paying physically for that.

    Accessing my medical records and getting photocopies done last year proved worthwhile, the worst is well documented there, obviously the doctors concerned wrongly believed I would never see their reports. They have ben less than honest (an understatement). There are important things missing from my records, and likewise abnormalities found I had not been told about. Many other PWME report similar findings when they access their primary care records.

    Thanks for contributing to this. It's vital this Inquiry goes well, there is a risk it will be hijacked. The Wessely School will not be willing to lose this opportunity to promote their untenable hypotheses along with promoting GET and CBT as curative.

    love, Tansy[This Message was Edited on 11/28/2005]
  5. Rosiebud

    Rosiebud New Member

    I'll do my best to support this.

    love
    Rosie
  6. tansy

    tansy New Member


    Date: 01-12-05

    Re: Inquiry into progress in the scientific research of M.E.

    The Group on Scientific Research into M.E.

    Dr. Ian Gibson MP today publicly launches the Group on Scientific
    Research into M.E.

    Dr. Ian Gibson MP said:

    "The Chief Medical Officer's report into CFS/ME represented an
    important step in Government's recognition of the seriousness of
    M.E. Three years on from this report, the time is right to evaluate
    how much further we have come in understanding the causes of M.E.,
    establishing a programme of research on all aspects of the condition
    and securing adequate investment for this research."



    Terms of Reference:

    The Group on Scientific Research into M.E. has been established to
    assess the progress of scientific research on M.E., since the
    publication of the Chief Medical Officer's Working Group Report into
    CFS/ME in 2002. In particular the group has been established to:

    o increase public understanding of scientific research into
    ME/CFS
    o evaluate progress in the development of a full programme of
    research into ME/CFS
    o identify research and funding requirements in establishing
    the cause of ME/CFS

    Starting in early 2006, hearings will take place as part of the
    Group's inquiries. These hearings will take oral evidence from M.E.
    sufferers, leading medical experts and government officials on the
    progress of scientific research on the condition. The group has
    also written to both leading medical experts and charity
    organisations requesting written evidence on this subject, with a
    deadline for written submissions of Tuesday the 20th of December.
    It is the group's aim to release a report based on this evidence
    following the conclusion of oral hearings. We are not inflexible in
    our agenda, but we wish to conclude it by Easter.

    Enquiries about the group should be made in writing to Dr Ian Gibson
    MP, House of Commons, London, SW1A 0AA.

  7. tansy

    tansy New Member

    Hi Rosie

    Since the emphasis will be on research we can submit our evidence and highlight the difficulties we have had to, and still, face due to ignorance of the illness. I think this enables us to include any bad experiences, since they will confirm the need for good quality biomedical research.

    We can also point out how our problems have been made considerably worse because research findings, and what they confirm, have been largely ignored in the UK. Exercise (GET) is one example, there's now plenty of documented evidence illustrating how risky it is for PWME.

    love, Tansy