Discussion in 'Action Alerts and Advocacy' started by AndyPR, Feb 12, 2017.
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.
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".
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?!
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
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.
@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.
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.
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.
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.
I'm reminded of this in the series of posters of the Invest in ME Research Matchstick Campaign - http://www.investinme.org/matchsticks.shtml
no cmo's from scotland northern Ireland or wales?
Not sure why you are asking me/alerting me to this?
I live in the Republic of Ireland not Northern Ireland.
sorry, my mistake. But still worth asking the question.
You can also try a Google Site Search
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