Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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Best Info and Resources on ME/CFS and Workplace Issues (esp. US info)?

Discussion in 'Finances, Work, and Disability' started by Mark, Jun 8, 2017.

  1. Mark

    Mark Former CEO

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    Sofa, UK
    I've been invited (by someone I met yesterday) to pass on any good information and resources I have about ME, with particular interest in:
    • Workplace issues
    • US information
    • The Social Model of disability (note: this does not mean BPS, but rather means turning things round and identifying problems with society's response to disability rather than the disability itself)
    A few things spring to mind that I'd like to point him at:
    • The IOM and P2P reports
    • The best summaries of PACE-gate (best summaries, not a huge mass of info on that!)
    • A really good report from a year or so ago by a UK (disability rights?) organisation (based in Sheffield?) that touched quite a bit on PACE and covered some DWP history...and I can't remember the name of the org right now. :(:rolleyes:
    I'm too busy right now to dig out all the links, but in any case I'd miss out lots of good information I'm sure, so I thought instead I'd crowdsource the question and ask our members to post links to the best info on this thread...and hopefully this thread will then itself become a useful resource for anyone looking for similar information...

    Please keep it short and to the point:
    • Name of the resource (which could be a report, an organisation, a web page, PR forum thread, etc)
    • Brief description
    • Link
    A general (not hard and fast) rule of one resource per post might be good as well, then people can use Likes to indicate which resources they think are best. And no off-topic chat please - just good resources!

    Thanks in advance for your help everyone. :)
     
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  2. Esther12

    Esther12 Senior Member

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    These are links to the pieces you mentioned. I went for four short pieces on PACE, the NYT piece and three of the Journal of Health Psychology papers. No idea if they're the best choices, and I selected partly on the assumption that this is for someone who might be new to the area but prefer peer-reviewed papers to blogs, etc?

    IOM report: https://www.ncbi.nlm.nih.gov/pubmed/25695122

    P2P page: https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs

    NYT (David and Julie) summary of PACE-gate (with links to further reading): https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html

    Jonathan Edwards' 'PACE team response shows a disregard for the principles of science': http://journals.sagepub.com/doi/full/10.1177/1359105317700886

    Carolyn Wilshire's 'The problem of bias in behavioural intervention studies: Lessons from the PACE trial': http://journals.sagepub.com/doi/full/10.1177/1359105317700885

    Tom Kindlon's 'Do graded activity therapies cause harm in chronic fatigue syndrome': http://journals.sagepub.com/doi/full/10.1177/1359105317697323

    Centre for Welfare Reform report on PACE, DWP, etc: http://www.centreforwelfarereform.org/library/by-date/in-the-expectation-of-recovery.html
     
  3. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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