Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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(UK) CFS/ME – Guidelines for the Disability Analyst

Discussion in 'General ME/CFS News' started by Dolphin, Feb 19, 2016.

  1. Dolphin

    Dolphin Senior Member

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  2. Denise

    Denise Senior Member

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    Because you knew it HAD to be in there....

    upload_2016-2-19_14-53-32.png
     
  3. Esther12

    Esther12 Senior Member

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    A few references to that Crawley Outcomes paper, including in their further reading section:

    Lots of slightly interesting bits. This on PACE, including the paragraph at the end that sounds like pure PD White BS. I wonder who wrote it?:

     
  4. Esther12

    Esther12 Senior Member

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    A lot of the bits likely to be damaging to claimants are from NICE. I wonder what evidence there is for this?

    [Just found this post had been saved and not posted]
     
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  5. Sean

    Sean Senior Member

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    All of which can also be explained (in principle) as the direct or indirect consequences of a chronic primary physical pathology.

    But not in the Church of BPS, where all causal roads lead to somatising, and there is never any need to consider alternative explanations.
     
  6. anciendaze

    anciendaze Senior Member

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    While ME/CFS still lacks a convenient biomarker, there are a number of genetic diseases which have them and can be mistaken for CFS if there are no clear clinical signs. One such is Ehlers-Danlos syndrome. It turns out that many people with the genes, even for autosomal dominant forms, do not exhibit the joint hypermobility most clinicians expect, if they even consider this. There is also the problem that new genetic variants continue to be found.

    I've checked that such patients do show up in psychiatric practice, not just rarely in the literature, but also in common practice, when psychiatrists are aware of the possibility. Since the classic clinical sign of joint hypermobility is not always present in adults, and can be overlooked, it seems likely that a diagnosis of CFS by Oxford criteria must concentrate such patients from the general population. A ratio of 1:100 in incidence could result, with the implication that such patients are far more likely to be found in a "CFS" cohort than most doctors expect. This raises the probability of seeing one to the point that it cannot be ignored.

    These patients exhibit fatigue and pain with: "a strong belief in the physical cause of the illness, a focus on bodily sensations and a poor sense of control over the complaints".

    Anyone know about genetic testing for EDS in ME/CFS cohorts?

    Anyone doubt that standard Oxford advice for treating CFS could harm EDS patients?
     
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