• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Arthiritis UK (ARUK) funds QMUL re PACE trial with £1m

Bob

Senior Member
Messages
16,455
Location
England (south coast)
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
 
Last edited:

snowathlete

Senior Member
Messages
5,374
Location
UK
Are ARUK aware of the scandal of the PACE trial and Peter White and QMUL and the harmed caused to disabled people with ME?

Are ARUK aware of Tullers investigation?

Why would a charity do this to fellow disabled people suffering from another disease.

Are they aware that 30 other charities have called for PACE data to be released due to all the concern?
 

Cinders66

Senior Member
Messages
494
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.
 

Large Donner

Senior Member
Messages
866
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.
 
Last edited:

Dolphin

Senior Member
Messages
17,567
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
 
Last edited:

user9876

Senior Member
Messages
4,556
My guess would be that when new funding was being put into the MRC database two rows got mixed up and someone else has got the ARUK funding and there is some funding for a 5 year follow up which is probably the MRC. But that is unclear.
 

Sam Carter

Guest
Messages
435
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?
 
Last edited:

user9876

Senior Member
Messages
4,556
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)


But that seems to have nothing to do with the PACE team. Also the amount is wrong.
 

Keith Geraghty

Senior Member
Messages
491
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
 

user9876

Senior Member
Messages
4,556
the only link is that it is psychobabble and a terrible waste of money.


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.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
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.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
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.

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. . . :devil:
 
Last edited:

Bob

Senior Member
Messages
16,455
Location
England (south coast)
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.
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.