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weekly public links (weekly)

Sun, 23 Aug 2009
  • clinical trial registration in the USA of the Stanford study of 30 patients. Not specific about outcome measures – what’s the point of a clinical trials register without specific declarations of outcome measures? Looking forward to some dodgy subgroup analysis.

    tags: me, cfs, cfsme, research

    • We propose to measure viral, immunologic, and genomic endpoints to assess whether there are objective and measurable changes in these parameters and whether they correlate with clinical improvement. Clinical improvement will be assessed by objective measurements of daily physical and psychological activities.
      • Not specific about outcome measures – what’s the point of a clinical trials register without specific declarations of outcome measures? Looking forward to some dodgy subgroup analysis. – post by waster
  • tags: no_tag

  • solid, level-headed plea for more ME research funding, and plain English summaries of current hypotheses

    tags: me, cfs, cfsme, research

  • “Sir, The quarter of a million sufferers of myalgic encephalomyelitis (ME) in this country, who can access no effective NHS treatment for their physical illness, might agree with Mr Hannan in that they would not wish their NHS “care” on anybody.

    ME has been classified as a physical, neurological illness (alongside MS and Parkinson’s) by the World Health Organisation since 1969. Instead of receiving biomedical treatment, ME sufferers are mixed up with sufferers of other fatigue-causing conditions, including mental ones, under the meaningless umbrella term “chronic fatigue syndrome”. In the UK no other neurological illness is treated solely by psychological interventions.

    All UK taxpayers’ research and treatment millions have gone to the psychiatric profession that insist, against all scientific evidence, that it is an “abnormal illness belief”. No funding has ever been allotted to developing a diagnostic test. The parliamentary Gibson report recommended that these psychiatrists be investigated for a possible conflict of interest in also working for large insurance companies. This has never been done. Is healthcare here also, in President Obama’s words, “working better for the insurance companies” than for ME sufferers?”

    tags: nhs, uk, cfsme, cfs, me, psychiatry

    • Sir, The quarter of a million sufferers of myalgic encephalomyelitis (ME) in
      this country, who can access no effective NHS treatment for their physical
      illness, might agree with Mr Hannan in that they would not wish their NHS
      “care” on anybody.

      ME has been classified as a physical, neurological illness (alongside MS and
      Parkinson’s) by the World Health Organisation since 1969. Instead of
      receiving biomedical treatment, ME sufferers are mixed up with sufferers of
      other fatigue-causing conditions, including mental ones, under the
      meaningless umbrella term “chronic fatigue syndrome”. In the UK no other
      neurological illness is treated solely by psychological interventions.

      All UK taxpayers’ research and treatment millions have gone to the psychiatric
      profession that insist, against all scientific evidence, that it is an
      “abnormal illness belief”. No funding has ever been allotted to developing a
      diagnostic test. The parliamentary Gibson report recommended that these
      psychiatrists be investigated for a possible conflict of interest in also
      working for large insurance companies. This has never been done. Is
      healthcare here also, in President Obama’s words, “working better for the
      insurance companies” than for ME sufferers?

      H. Patten

      Frome, Somerset

  • tags: no_tag

Posted from Diigo. The rest of my favorite links are here.

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