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Complex Chronic Disease Program (CCDP) Patient Engagement Findings

Discussion in 'General ME/CFS News' started by Tom Kindlon, Nov 19, 2017.

  1. Tom Kindlon

    Tom Kindlon Established Member (Voting Rights)

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  2. Tom Kindlon

    Tom Kindlon Established Member (Voting Rights)

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  3. Tom Kindlon

    Tom Kindlon Established Member (Voting Rights)

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  4. Woolie

    Woolie Senior Member (Voting Rights)

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    "Complex Chronic Diseases" is a brand new euphemism to me.

    Obviously, they don't mean "Complex Chronic Diseases", or MS, RA, lupus would be included too. They mean "those diseases that we think are psychological".

    Still, they had the guts to report the real problems patients see in their programme. That's something.

    The report itself is a really good resource that summarises patents' concerns worldwide: stop psychologising us and do something that's actually helpful - give us practical assistance offer us treatment, educate our doctors!

    The patients who made statements were incredibly articulate. Makes it difficult to dismiss them as crazies.
     
  5. Esther12

    Esther12 Senior Member (Voting Rights)

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    I vaguely remember that patients were really hopeful about this clinic, and that it was set up by someone patients trusted, but that then this person got side-lined.

    I was always suspicious - the 'complex chronic disease' title smelt like a trap.
     
  6. Valentijn

    Valentijn Moderator Staff Member

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    From what I recall, they weren't given the budget needed for the necessary appointments with the specialist, or testing. I think there was quite a waiting list as well.

    Basically the entire thing was set up to only be capable of functioning like a British- or Dutch-style BPS fatigue clinic, and not as a specialist biomedical disease clinic. The actual specialist couldn't support that approach, so resigned.
     
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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