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A Disabled Community Abandoned: The ME/CFS Public Health Crisis In Britain

Discussion in 'General ME/CFS news' started by Sly Saint, Jan 13, 2018.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    This blog/ article has a few red flags..........maybe the writer should have done a bit more research or is it deliberate?

    Starts off OK ish.....

    "British people suffering from Myalgic Encephalitis otherwise known as ME or Chronic Fatigue syndrome (CFS) have suffered from over 30 years of medial neglect and health inequalities which need to be addressed as a matter of urgency."

    Except the name is wrong 'Myalgic Encephalitis' (this was what EC called it in one of her interviews:cautious:)

    "The NHS relies upon psychological treatments for ME/CFS such as graded exercise therapy and CBT whose effectiveness has been seriously undermined. Dr. David Tuller from Berkely University has shown how the Medical Research Council funded PACE trial in 2011, that claimed that CBT and grade exercise therapy were effective treatments for ME/CFS, only helped 1 in 10 of the trial participants not the 60% originally claimed by the trial authors.

    The NHS uses a bio psycho-social approach to ME/CFS which treats the illness as a somatic/psychological illness. This is scientifically inaccurate."

    Here it starts to go a bit "MEGA/Crawley":

    Minimal resources have been put into research/treatments for this neuro-immune illness. In 2016 the medical charity Action for ME produced a study that noted that ME/CFS has consistently faced significant under-investment over the last 30 years compared to other neurological illnesses. In 2015 ME/CFS research represented 0.02% of all active research awards granted by the Medical Research Council/Wellcome Trust. Professor Stephen Holgate of Southampton University has noted:

    “The resulting report presents hard evidence of the chronic lack of research funding for ME/CFS from major funding agencies. I hope that it will prove to be a foundation for larger mainstream funders to reassess their attitudes towards ME/CFS and review their funding policies towards the illness.”

    "In a 2011 study Dr. Esther Crawley of Bristol University noted that only 52% of GP's felt confident of making a diagnosis of ME/CFS."

    Then we get the Crawley 'Dare to disrupt', "voice of the voiceless" line:

    "The findings of Dr. Crawley's study are important as they show the long term cost to society of leaving such a large community of people without any hope of recovery from their illness. Dr. Crawley notes the heavy impact upon families and young people:

    “CFS/ME incurs huge productivity costs amongst the small fraction of adults with CFS/ME who access specialist services. ... families of patients must bear the costs of informal care, often reducing their own working hours. In young adults, disruption of education reduces productivity in later life. Above and beyond these financial costs, ME/CFS has a huge impact on quality of life.”

    Whole article here:

    eta: it is possible to comment if you sign up to the site
    eta 2: have looked at the writer who says her partner has CFS/ME(?)
    eta 3: looks like people get paid for getting 'likes' on this site.
    Last edited: Jan 13, 2018
  2. Allele

    Allele Senior Member (Voting Rights)

    Aah yes, the SMC sees the house of cards crumbling and begins the "pivot".
    Invisible Woman, Inara and Sean like this.
  3. Inara

    Inara Senior Member (Voting Rights)

    That's maybe a slight change in strategy...they begin with seemingly good sounding content, and you feel like "Oh good, someone understands, at last", while newcomers feel impressed by the scientific sound of it - only to transport the "good message" afterwards which will sink into you so that you now believe "it's so good to have courageous Esther Crawley!" :sick:
  4. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    Straight out of AFME
  5. Webdog

    Webdog Senior Member (Voting Rights)

    Holodeck #2
    Dr. David Tuller from Berkely University? Should be "University of California, Berkeley".

    As Wikipedia says about UC Berkeley, "Not to be confused with Berkeley College, Berkeley College (Yale University), or Berklee College of Music." Guess we can now also add the mythical "Berkely University".
    MEMarge, Joh, Sly Saint and 4 others like this.

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