Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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I HAVE A HOPE FOR 2017..... The demise of PACE

Discussion in 'General ME/CFS News' started by MEMum, Jan 13, 2017.

  1. MEMum

    MEMum Senior Member

    I HAVE A HOPE FOR 2017

    I HAVE A HOPE that ME will be widely recognised for what it is: “a serious, chronic, complex, systemic disease that can profoundly affect the lives of patients”. (US IOM)

    I HAVE A HOPE that mounting biomedical evidence of abnormalities: from neural and immune function to the circulatory system, from energy metabolism to cognitive processing, will be widely disseminated. That it will be spread into the media and public understanding, unskewed, to replace the false information of previous decades.

    I HAVE A HOPE that doctors, journalists and the public will realise, understand and acknowledge that people with ME do NOT have “false illness beliefs”, nor are they merely “deconditioned”. Active, hard-working people, enjoying life do not choose to suddenly stop study/work/sport/socialising. They long to get better.

    I HAVE A HOPE that the voice of scientific reason will be clearly heard, such as the conclusion of the AHRQ (US equivalent of NICE), that there is NO evidence to support the view that GET or CBT improve the health of people with ME.

    I HAVE A HOPE that the stigma, disbelief and neglect of the #MILLIONSMISSING, who have lost a normal, active life due to this debilitating illness, will be transformed to understanding, compassion and care, supported by funds for biomedical research to develop effective treatments.

    I HAVE A HOPE that the re-analysis of raw data from the infamous PACE trial, as undertaken by top statisticians and in a published, peer-reviewed journal will be widely shared by the media and that truth will prevail. Data collected in PACE shows that: “There is no statistical difference in health outcomes, between GET, CBT, standard medical treatment, or pacing.”

    It is not the making of mistakes that is unusual, but to continually resist scientific challenges by scientists, informed patients and their advocates, is shameful and tragic for those who have borne the consequences.


    I HAVE A HOPE that a cure will soon be found: for Whitney, Richard, Amber, Judith, Sasha…..and that all those #MILLIONSMISSING can be restored to full health, an active life and a future.


    I HAVE A HOPE FOR 2017

    I HAVE A HOPE that as PACE continues to crumble, medical teaching, training and guidelines will exclude GET and acknowledge that people with ME have a different physiological response to exercise. There are “harms associated with pushing them to do more each day”, without recognition of their altered energy metabolism.

    I HAVE A HOPE that CBT aimed at altering “false illness beliefs” will be stopped: and that any planned or ongoing studies using CBT or GET, such as MAGENTA or FITNET, will be suspended for safety reasons.

    There are still #MILLIONSMISSING who have not been “cured” by CBT or GET, but remain ill for years or decades, some house or bedbound.

    I HAVE A HOPE that the purpose and rationale of MEGA will be challenged and reviewed by those with the knowledge to interpret the raw PACE data. Why spend money on a new data bank, when one has recently been established in the UK?

    I HAVE A HOPE that the pervasive influence of some psychiatrists in organisations such as: Department of Work and Pensions, Insurance companies, Science Media Centre, Medical Research Council, Parliament… will be questioned in light of the re-analysed PACE results. The voices of International Experts must be heard: Professor Komaroff (Harvard), who has worked with people with ME for decades: “This illness is NOT a psychological problem”.

    I HAVE A HOPE that moves to reclassify ME as “MU”, (Medically Unexplained) will be abandoned. Once upon a time, diseases such as Polio/TB/MS were also considered “MU”; until scientific understanding of viruses, bacteria and autoimmunity progressed. This is the way medicine develops.

    ME is NOT YET FULLY UNDERSTOOD, in common with other diseases, where aetiology is unclear, or knowledge of pathology patchy. This is why biomedical research, commensurate with disease burden is imperative.


    Too many have died

    There may already be irreversible damage for others

    We will remember them and fight on, determined to stop this TRAGEDY OF NEGLECT

    Woolie, L'engle, Vonjones and 24 others like this.
  2. trishrhymes

    trishrhymes Senior Member

    Three cheers, and so say all of us!
    Vonjones, Daisymay, Comet and 3 others like this.
  3. Keela Too

    Keela Too Sally Burch

    Comet, Hutan, MeSci and 4 others like this.

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