AndyPR
Senior Member
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Good grief.The PACE trial was mentioned and Dr Radford had not read PACE.
NICE was briefly discussed and a decision whether the guideline will be reviewed should be made by the summer of 2017. Dr Radford said that it is important there is new research that they can look at otherwise the guideline remains in a vacuum.
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".
No doubt part of the motivation for the DWP to help fund PACE ... or am I being too cynical?!
@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 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.
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 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 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.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
Problems with FITNET were mentioned and Dr Radford [Deputy English CMO] was aware of this and stated that FITNET was being reviewed.
Problems with FITNET were mentioned and Dr Radford [Deputy English CMO] was aware of this and stated that FITNET was being reviewed.
Not sure why you are asking me/alerting me to this?
sorry, my mistake. But still worth asking the question.Not sure why you are asking me/alerting me to this?
I live in the Republic of Ireland not Northern Ireland.