Phoenix Rising supports the Millions Missing global day of protest
Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …
Discuss the article on the Forums.

January 2017 Invest in ME Research Visit The CMO of England's Office

Discussion in 'Action Alerts and Advocacy' started by AndyPR, Feb 12, 2017.

  1. AndyPR

    AndyPR Senior Member

  2. Barry53

    Barry53 Senior Member

    Messages:
    2,277
    Likes:
    13,705
    UK
    Good grief.
     
    Binkie4 and Webdog like this.
  3. A.B.

    A.B. Senior Member

    Messages:
    3,750
    Likes:
    23,190
    I hope that Dr Radford was able to understand just how bad the situation is. A life destroying illness is erroneously treated as form of somatisation and patients are denied treatment not just for their primary illness but often also for any other treatable health problems they might have. Families are terrorised for having a child that doesn't get better on a bogus placebo treatment. A prtion of patients are severely harmed by GET, the recommended treatment for this condition, which does not actually seem to help anyone.
     
  4. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,677
    Likes:
    21,540
    Germany
    Sounds like an uphill struggle but I'm very grateful to all involved.

    I hope she didn't cross her fingers behind her back, cough, and mutter "UK" before the word "research".
     
  5. Barry53

    Barry53 Senior Member

    Messages:
    2,277
    Likes:
    13,705
    UK
    I think a major harm for ME sufferers in the UK (and maybe equivalent elsewhere), is the extreme difficulty to accrue National Insurance credits; with potential enormous detrimental impact later in life on their state pension. This aspect is rarely highlighted by ME advocates. When PW, SW, et al, dispute their endeavours have caused harm to ME sufferers, I think they should be reminded of this.

    No doubt part of the motivation for the DWP to help fund PACE ... or am I being too cynical?!
     
    Last edited: Feb 12, 2017
  6. user9876

    user9876 Senior Member

    Messages:
    2,584
    Likes:
    18,184
    I think there is UK research the PACE trial outcomes show that the treatments recommended by NICE don't work. Even with a very very poor methodology they could only show a minor change in subjective measures as compared with other treatments when different arms of the trial provided different expectations to patients.

    A proper review of PACE (including demanding access to objective data) should lead to a downgrading of CBT and GET
     
  7. user9876

    user9876 Senior Member

    Messages:
    2,584
    Likes:
    18,184
    I would tend to think the funding was a vanity project on behalf of Aylwood who was one of their advisors. I would suggest that it was a misuse of government funds in the way he funded a pet project involving his friends and personal beliefs.
     
  8. Barry53

    Barry53 Senior Member

    Messages:
    2,277
    Likes:
    13,705
    UK
    @charles shepherd, is this something that could be highlighted more in ME advocacy meetings? Bear in mind that if people receive normal disability benefits, then they automatically have their NI contributions made for them regarding state pension entitlement. The less NI credits accrued, the less state pension they may well be entitled to. This could cause additional harm later in life.
     
    SamanthaJ and TiredSam like this.
  9. AndyPR

    AndyPR Senior Member

    I'm in this situation, in order to avoid all the associated stress that would come from the application/appeal/review processes I don't claim benefits (and also being in an extremely fortunate situation that my wife and I can, just about, afford it). But obviously what I don't get is my NI credits paid - I need another 9 years of credits to qualify for the full state pension, so we are seriously considering using some of our savings to purchase these.
     
    SamanthaJ, Jo Best and Barry53 like this.
  10. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,677
    Likes:
    21,540
    Germany
    I was referring to the tendency of NICE to ignore good biomedical research from abroad and to rely too heavily on BPS "research" in the UK. They keyword is "proper" review - if that is done and the instances of excellent research in the UK taken into account by a reviewer with an understanding of science and an ounce of integrity then perhaps there's hope.
     
  11. Dolphin

    Dolphin Senior Member

    Messages:
    10,680
    Likes:
    28,207
     
    SamanthaJ, John Mac, slysaint and 5 others like this.
  12. user9876

    user9876 Senior Member

    Messages:
    2,584
    Likes:
    18,184
    If the reviewers don't understand the issues with PACE then there is probably little point in reviewing FitNet. The problem is on a glance it looks to have the right form. It does take a little thought and analysis to realize that the trial is meaningless because they are using subjective measures to measure interventions that change the way patients perceive symptoms. It also takes knowledge of things like the patient reports of harm to know that consent should warn of the dangers. Things like the long term follow up are not mentioned within the Fitnet material either (which should be a flag to ethics reviewers!).

    If the reviewers don't have time (or the inclination) to dig there is a danger that they will gloss over all the issues that need to be raised. Of course if McCrone reviews it since he heads their independent steering committee then he was one of the PACE authors who has constantly mislead patients and refused to release data so I wouldn't expect him to have issues.
     
    Hutan, Dolphin, Jo Best and 2 others like this.
  13. Jo Best

    Jo Best Senior Member

    Messages:
    1,022
    Likes:
    6,209
  14. slysaint

    slysaint Senior Member

    Messages:
    2,124
    Likes:
    11,464
    no cmo's from scotland northern Ireland or wales?

    @Tom Kindlon
     
  15. Tom Kindlon

    Tom Kindlon Senior Member

    Messages:
    1,388
    Likes:
    8,272
    Not sure why you are asking me/alerting me to this?
    I live in the Republic of Ireland not Northern Ireland.
     
    Last edited: Feb 13, 2017
  16. slysaint

    slysaint Senior Member

    Messages:
    2,124
    Likes:
    11,464
    :redface: sorry, my mistake. But still worth asking the question.:)
     
    Tom Kindlon likes this.

See more popular forum discussions.

Share This Page