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Info for CPN (request for links pls)

Discussion in 'Resources' started by JemPD, Dec 18, 2017.

  1. JemPD

    JemPD Senior Member (Voting Rights)

    Hi all, I wonder if someone can help me out pls....

    8yrs after ME onset I got PTSD. I am working with a new community psych nurse to give me support for it. She has minimal knowledge about ME & has expressed an interest in finding out a bit about it - she was asking me what treatment was available/i was getting for it.
    So i'm trying to cobble together some basic bits for her - she has very minimal time to spend.

    I told her i'd give her the MEA's purple book, but although it's great it is quite dense if all you want is the basics & i think there's a strong risk she'll be overfaced & just not read it.
    So i'm planning on giving her a copy for the office in case she wants to follow up, but just photocopying some key paragraphs about prognosis, quality of life etc so there is just a few pages to look at on the top & she can delve further if she wants to.
    I'm going to also include the summary from the recent BMJ best practice guide on top.

    But i also want to include a few key paragraphs from the IOM report (especially that great statement about it not being psychological), & David Tuller's open letter with all those signatories discrediting PACE, ( just in case she starts discussing it with anyone else & gets told a load of PACE twaddle).

    But I wondered if i could ask for help from anyone here pls in finding the links to that key paragraph from the IOM report - I've seen it loads of times but when i google i get so much info & results its difficult for my foggy brain to sift through it all, & i need it quite soon, so i wondered if anyone here had a link at their fingertips?
    for that and David's Open letter? - there's such a lot on the virology blog & i know the letter went through several updates, & im so foggy i cant seem to find what i'm looking for.

    I had it all bookmarked before but my laptop crashed last mnth & i lost the lot :-/
    Can anyone please help me out if they have the links handy?
    Also if anyone has any suggestions of anything else i should include pls let me know.

    thanks hopefully
    Barry likes this.
  2. Graham

    Graham Senior Member (Voting Rights)

    Virology blog is putting together a list of contents which may be useful to folk in the future (http://www.virology.ws/table-of-contents/), but David Tuller's second letter to The Lancet is here (http://www.virology.ws/2016/02/10/open-letter-lancet-again/).

    You might like the "key facts" summary on the IoM report (http://www.nationalacademies.org/hmd/~/media/Files/Report Files/2015/MECFS/MECFS_KeyFacts.pdf).

    Is this the quote you wanted from the report?
    Conclusion: It is clear from the evidence compiled by the committee that ME/CFS is a serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients.

    It is at the bottom of page 209.
  3. JemPD

    JemPD Senior Member (Voting Rights)

    Thanks so much Graham.
    That doesn't have all 102 signatories listed that eventually ended up on that letters, or maybe it was a different letter, it's all a blur to me now, but & i especially wanted her to see all those signatories because there is at least 1 psychiatrist working in a UK NHS hospital, listed. It was definitely about PACE & it was definitely an Open Letter. There were a lot of people who added their names after it went out & i cant find it, i know it exists because i printed it out to give to someone at some point :confused:

    Thanks. The IOM paragraph I'm thinking of is longer than that, it specifically references something about it not being psychological or something, i'm sure i saw the word psychological/psychogenic (or some word beginning with psych at any rate, ha).
    Graham likes this.
  4. JemPD

    JemPD Senior Member (Voting Rights)

    Oh! I found it, the open letter, it's the one to Psychological Medicine about the recovery paper from PACE :)

    for anyone else who's interested it's here

    "That the editors of Psychological Medicine do not grasp that it is impossible to be “disabled” and “recovered” simultaneously on an outcome measure is astonishing and deeply troubling."

    Graham likes this.

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