then the research gateway entry is wrong? It can't be both ways, can it.
Arthiritis UK (ARUK) funds QMUL re PACE trial with £1m
- Thread starter Yogi
- Start date
I think it's a mistake on the trial registry website, because it doesn't make any sense for Arthritis Research UK to fund the tail-end follow-up outcomes paper for an old trial of ME/CFS. And the follow-up paper wouldn't cost anywhere near £1m. Nowhere near £1m.
The only grants/trials I can find listed on the Arthritis Research UK website for £1,000,000.00 are the following; the first of which was awarded to QMUL:
1. http://www.arthritisresearchuk.org/...or-the-treatment-of-rheumatoid-arthritis.aspx
2. http://www.arthritisresearchuk.org/...the-ptpn22-gene-cause-autoimmune-disease.aspx
The only grants/trials I can find listed on the Arthritis Research UK website for £1,000,000.00 are the following; the first of which was awarded to QMUL:
1. http://www.arthritisresearchuk.org/...or-the-treatment-of-rheumatoid-arthritis.aspx
2. http://www.arthritisresearchuk.org/...the-ptpn22-gene-cause-autoimmune-disease.aspx
Last edited:
Arthritis Research UK fund a heck of a lot of decent biomedical research, including hunting for biomarkers for fibro, so please don't jump to rash conclusions about them based on a single piece of (mis)information.
Last edited:
- Messages
- 2,051
- Likes
- 10,097
I suspect they've just been taken for fools like a lot of people.
Are they aware that 30 other charities have called for PACE data to be released due to all the concern?
True. We have to check the facts with them first in case it is an error.
I would not be against exercise explored for fatiguing conditions not horribly exacerbated by exercise but reading the chalder explanation for fatigue in CFS and trying to extrapolate that to RA, and knowing that the MS society is also looking at psychological involvement in fatigue, it would be that line of enquiry I'd worry about for patients. Glad to know it's seems to be an error in relationship to cfs though.
- Messages
- 866
- Likes
- 3,847
I'm confused over this. When did ARUK give money to the PACE trial? Or is it follow up PACE trial activity they have donated to if they have at all.
Secondly anyone can set up a charity and quite often charities are just money filtering PR services set up by big corporations to hijack certain issues and maximize their profits. Often they simply get infiltrated.
Simple example.... A man called called Petre Black could be an operative for the medical insurance industry, he and his corporate friends set up a charity, they fund research into falsely proving x w or z, it costs them £2 million by filtering money through a charity. This boosts their p corporate profits by £1 billion. Simple.
I have a rule that anything that calls itself a trust cannot be trusted.
Secondly anyone can set up a charity and quite often charities are just money filtering PR services set up by big corporations to hijack certain issues and maximize their profits. Often they simply get infiltrated.
Simple example.... A man called called Petre Black could be an operative for the medical insurance industry, he and his corporate friends set up a charity, they fund research into falsely proving x w or z, it costs them £2 million by filtering money through a charity. This boosts their p corporate profits by £1 billion. Simple.
I have a rule that anything that calls itself a trust cannot be trusted.
Last edited:
I can't see how the PACE Trial team could have made a mistake about the grant except in terms of the source i.e. they wouldn't post LIFT information in terms of PACE Trial funding.
Also in the tribunal, it was confirmed they got money for a follow-up study.
So I imagine the information isn't completely incorrect
Also in the tribunal, it was confirmed they got money for a follow-up study.
So I imagine the information isn't completely incorrect
Last edited:
- Messages
- 435
- Likes
- 368
https://www.abdn.ac.uk/iahs/documents/2016_Newsletter.pdf
Arthritis Research UK: “The LIFT Trial – Lessening the Impact of Fatigue: Therapies for inflammatory rheumatic
diseases”. £750,000 June 2016 – May 2020.
Fatigue is pervasive, disabling and challenging to manage across all inflammatory rheumatic diseases (IRDs).
Primarily, we seek to advance the implementation of fatigue alleviating physical activity support programmes and
cognitive‐behavioural treatments within health services. The interventions will be delivered centrally, by either
telephone or Skype, with view to enhancing cost‐effectiveness. The conduct of such a pragmatic trial also
presents an unique opportunity to a) investigate the underlying mechanisms of fatigue in order to optimise
future interventions and b) identify the moderators of physical activity and cognitive‐behavioural therapy efficacy
so as to inform future stratified trials and patient triage pathways. This multi‐disciplinary trial brings together all
three IAHS themes as well as a number of international leaders in the field. If successful, it has the potential to
unlock widespread access to much needed therapies and will provide vital insights into this commonly neglected
patient priority.
Dr. Neil Basu (Chief Investigator)
Added: And presumably this trial is linked to PACE because PDW and Trudie Chalder have been funded to write the therapy manuals?
Arthritis Research UK: “The LIFT Trial – Lessening the Impact of Fatigue: Therapies for inflammatory rheumatic
diseases”. £750,000 June 2016 – May 2020.
Fatigue is pervasive, disabling and challenging to manage across all inflammatory rheumatic diseases (IRDs).
Primarily, we seek to advance the implementation of fatigue alleviating physical activity support programmes and
cognitive‐behavioural treatments within health services. The interventions will be delivered centrally, by either
telephone or Skype, with view to enhancing cost‐effectiveness. The conduct of such a pragmatic trial also
presents an unique opportunity to a) investigate the underlying mechanisms of fatigue in order to optimise
future interventions and b) identify the moderators of physical activity and cognitive‐behavioural therapy efficacy
so as to inform future stratified trials and patient triage pathways. This multi‐disciplinary trial brings together all
three IAHS themes as well as a number of international leaders in the field. If successful, it has the potential to
unlock widespread access to much needed therapies and will provide vital insights into this commonly neglected
patient priority.
Dr. Neil Basu (Chief Investigator)
Added: And presumably this trial is linked to PACE because PDW and Trudie Chalder have been funded to write the therapy manuals?
Last edited:
- Messages
- 435
- Likes
- 368
The language used to describe the interventions is awfully similar to other psycho-social fatigue studies.
It also refers to "international leaders in the field" which made me think they could be liaising with PDW et al.
But yeah, it could just be a cock-up.
It also refers to "international leaders in the field" which made me think they could be liaising with PDW et al.
But yeah, it could just be a cock-up.
the only link is that it is psychobabble and a terrible waste of money.
- Messages
- 491
- Likes
- 3,272
the interventions will be delivered centrally by either telephone or Skype -so CBT via skype it looks like.
"The conduct of such a pragmatic trial also presents an unique opportunity to
a) investigate the underlying mechanisms of fatigue in order to optimise future interventions how how do you unlock the mechanisms of fatigue by giving CBT via Skype or phone? In an illness like RA I am sure biology plays some part - how then does a trial like this investigate the biology of RA - or is it the biology is secondary - classic BPS model
and b) identify the moderators of physical activity and cognitive‐behavioural therapy efficacy so as to inform future stratified trials and patient triage pathways. - here it is clear here they are testing the usefulness of CBT to treat fatigue in RA. There will no doubt be some questions on "do you feel anxious about exerting yourself" - then CBT to tell them they arent anxious anymore - then some follow up questions "do you feel anxious now"? hey presto IT works
"The conduct of such a pragmatic trial also presents an unique opportunity to
a) investigate the underlying mechanisms of fatigue in order to optimise future interventions how how do you unlock the mechanisms of fatigue by giving CBT via Skype or phone? In an illness like RA I am sure biology plays some part - how then does a trial like this investigate the biology of RA - or is it the biology is secondary - classic BPS model
and b) identify the moderators of physical activity and cognitive‐behavioural therapy efficacy so as to inform future stratified trials and patient triage pathways. - here it is clear here they are testing the usefulness of CBT to treat fatigue in RA. There will no doubt be some questions on "do you feel anxious about exerting yourself" - then CBT to tell them they arent anxious anymore - then some follow up questions "do you feel anxious now"? hey presto IT works
I suspect it is a waste of money but I feel that is up to arthritis patient groups to deal with. It may be that they are supportive. I can see learning coping strategies and even ways to understand what activities cause more fatigue could be useful. This is very different from claims of CBT being a cure which is what happens with ME.
I agree that if is not anything to do with ME then its up to arthritis groups to deal with. Quite right. I have an arthritis like condition and wouldn't support it, because it looks like junk to me. It doesn't look as simple as coping strategies, and as they've talked about applying work in CFS which is based on brainwashing patients into ignoring symptoms, and judging success via subjective measures, I wouldn't be surprised if they use the same approach in arthritis, while claiming it isn't, which rather than making people better will, if anything, do the opposite.
Generally speaking, people's intelligence is perfectly adequate enough to ascertain when they've overdone something without an 'expert' on skype. You learn by doing and by trial and error. If anything a better approach would be for people with RA to talk to one another and share tips and strategies. Or even the charity website could be used as a source of help. This is just another grab at an opportunity to foist politically motivated garbage at vulnerable sick people.
I speak as someone with a parent who's had RA for decades. I expect the idea of a skype consult would do more harm than good since she functions adequately is happy and is very long into a regular routine. Turning her world around with how she should be perceiving how she should function to get more out of her life is. . .
I speak as someone with a parent who's had RA for decades. I expect the idea of a skype consult would do more harm than good since she functions adequately is happy and is very long into a regular routine. Turning her world around with how she should be perceiving how she should function to get more out of her life is. . .
Last edited:
A trial registry states that ARUK provided money for a further PACE publication, but it looks like it is an error. ARUK say that they haven't provided any money for PACE. But they have funded an entirely separate fatigue study for arthritis ('LIFT') that has nothing to do with PACE or ME/CFS except that there may be similarity in the philosophy behind the therapies being tested. ARUK fund loads of biomedical research including biomedical studies of arthritis, pain and fibro looking for causes and biomarkers etc.
In case anyone missed the tweet, ARUK unambiguously state that they have not funded PACE...