snowathlete
Senior Member
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then the research gateway entry is wrong? It can't be both ways, can it.
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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I suspect they've just been taken for fools like a lot of people.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 concussions about them.
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.
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 concussions about them based on a single piece of (mis)information.
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.
But that seems to have nothing to do with the PACE team. Also the amount is wrong.
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.
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.
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.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.