1. Less than a week to support David Tuller's work. To donate click here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 12th October 2020 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

(Not a recommendation) (UK) "Chronic Fatigue Syndrome Conference: Costs, challenges and practice"

Discussion in 'General ME/CFS News' started by Tom Kindlon, Jun 27, 2018.

  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    1,336
    Likes Received:
    12,756
    I know from an email that this is on July 17.

    http://www.salford.ac.uk/onecpd/conferences/chronic-fatigue-syndrome-conference

     
    Inara, Barry, Sly Saint and 8 others like this.
  2. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    1,336
    Likes Received:
    12,756
     
  3. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    1,336
    Likes Received:
    12,756
     
  4. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    1,336
    Likes Received:
    12,756
     
    Inara, Luther Blissett, Andy and 3 others like this.
  5. Sean

    Sean Senior Member (Voting Rights)

    Messages:
    2,611
    Likes Received:
    21,468
    Oh boy, here we go again.

    Anybody who isn't a patient nor their representative.

    :grumpy:
     
    NelliePledge, MEMarge, Inara and 16 others like this.
  6. alktipping

    alktipping Senior Member (Voting Rights)

    Messages:
    609
    Likes Received:
    3,166
    the attendees list just shouts I a p t the pyschs new go to for control of the medical treatment /non treatment of difficult to diagnose illnesses this is very bad news .
     
    NelliePledge, Inara, chrisb and 2 others like this.
  7. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,763
    Likes Received:
    30,722
    I wonder who set this up? Looks quacky.

    Paul Davey was a part of Action for ME's SEE ME project:

    http://www.pauldavey.org.uk/about

    His website says:

    Not sure there's any good evidence for that with regards to ME/CFS.

    The Action for ME page talks about their 'remarkable results' for SEE ME, although they included no control group in their 'project' and it's far from clear that anyone gained anything from it. They say: "By developing and demonstrating good practices in integrated health and employment support for people with M.E., the project raised aspirations and helped individuals to achieve their goals in relation to employment." What evidence is there that is helped anyone achieve their employment goals?
     
    Last edited: Jun 27, 2018
    NelliePledge, MEMarge, Inara and 17 others like this.
  8. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,763
    Likes Received:
    30,722
    Christine Parker is from Jessica Bavinton's Vitality 360 (along with Sue Luscombe): http://vitality360.co.uk/fatigue-pain/about-us-2/about-us/our-team/

    Bavinton is not an impressive human being. She was part of the old NICE committee, led development of GET for the PACE trial, was promoting the 30% 'back to normal' claim from PACE (seemingly without realising it was spin). She does a lot of work with insurance companies, and you occasionally find people talking about how they were forced to work with her 'treatment' programme by their insurance and left off even worse. She's also linked to the Vocational Rehabilitation Association which, surprise surprise, Action for ME were very happy to receive a prize from for their SEE ME project. I keep reading things that remind me how rubbish Action for ME are.

    The blurb for this new meeting says: "Science is operating as it should, self-critical and open to revision, and there are several angles being explored in the studies of immune, metabolic, endocrine and nervous systems."

    No. This is not science operating as it should. PACE is certainly not an example of people being self-critical and open to revision. This mess looks more like quacks trying to make money from desperate patients despite not having any good evidence that they have anything of value to offer them.
     
  9. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,763
    Likes Received:
    30,722
    I'd forgotten how appalling Jessica Bavinton is.

    Here she is on a forum evading comments and questions from patients while promoting PACE spin like:

    https://www.talkhealthpartnership.com/forum/viewtopic.php?f=490&t=4557&start=30

    Apparently while this was going on Action for ME were encouraging the moderators to delete critical posts from patients and lock threads.
     
    Inara, Jan, ladycatlover and 18 others like this.
  10. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    3,204
    Likes Received:
    17,463
    Location:
    UK
    [​IMG]
     
    NelliePledge, Inara, zzz and 8 others like this.
  11. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    3,903
    Likes Received:
    18,158
    This is people positioning for a share of the IAPT pie .
     
  12. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

    Messages:
    1,678
    Likes Received:
    12,932
    Inara, alktipping and Esther12 like this.
  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,165
    Likes Received:
    42,906
    Location:
    UK
    MEMarge, Inara, ladycatlover and 4 others like this.
  14. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    7,569
    Likes Received:
    77,727
    My thought is to ignore this. But sifting through may provide some information on who is feeding misinformation through to Brine, the health minister.
     
    Sarah94, MEMarge, ukxmrv and 7 others like this.
  15. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,219
    Likes Received:
    15,823
    This is local to me. It looks so ghastly I wouldn't even want to go to argue with them.
     
  16. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    3,903
    Likes Received:
    18,158
    @Action for M.E.
    this is precisely the kind of approach that renders mild to moderate and moderate to severe in children and requires addressed as a matter of urgency before IAPT undoes the progress being made re GET and CBT
    Can you respond with how you propose to help with the paradigm shift required?
    thanks
     
    Sarah94, MEMarge, Inara and 7 others like this.
  17. Trish

    Trish Moderator Staff Member

    Messages:
    26,501
    Likes Received:
    130,009
    Location:
    UK
    This is appalling.
    How can AfME associate themselves with this quackery?
    @Action for M.E. ???
     
    Sarah94, Inara, Barry and 6 others like this.
  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,165
    Likes Received:
    42,906
    Location:
    UK
    This leaflet was done in 2010 and it says at the bottom that it was supposed to have been reviewed in 2012...........I'm guessing that they didn't bother because of the PACE trial (?)

    It also cites AYME :
    "
    Who else can help?
    There is a support organisation for young people with CFS/ME:
    Association for Young People with ME (AYME).
    Telephone:08451 23 23 89
    (Monday to Friday from 10.00 am to 2.00 pm)
    Web: www.ayme.org.uk"

    the web link (as I mentioned elsewhere) just takes you to a blank page saying it is reserved for future use.

    AfME have supposedly taken over AYMEs Children Services; just would have expected they might have told the relevant NHS services (it's not as if there are a lot of them).
     
  19. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    6,329
    Likes Received:
    39,219
    Location:
    UK West Midlands
    The title title is a dead giveaway on the priority

    Cost, challenges and practice

    Analyse that

    Cost cost cost..................
     
    MEMarge, Inara, Jan and 9 others like this.
  20. Tia

    Tia Senior Member (Voting Rights)

    Messages:
    163
    Likes Received:
    1,409
    SHOCKING.

    I tried the Optimum Health Clinic years ago. The fact that they are presenting on the 'the health scandal of our generation' makes me feel sick. They are part of the scandal.

    The Chrysalis Effect looks even worse. Elaine Wilkins has absolutely no qualifications, I believe she worked is sales (make-up I think) before she started this business. What makes her think that she can rewrite the future of treatment is beyond me.

    Both are businesses out to make money. They're both angling for NHS contracts. No qualifications. The OHC is, in my opinion, a pyramid scheme.
     
    Sarah94, MEMarge, andypants and 16 others like this.

Share This Page