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

Snowdrop

Snowdrop

Rebel without a biscuit
Messages
2,933
Is this LIFT then a similar piece or research to PACE (PACE in disguise on a different sick population)?

I think if it is and it's to be done by 'known' BPS adherents then it is very much our business to find out and SHUT IT DOWN. That's provided to above suppositions are correct of course.
 
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Snowdrop said:
Is this LIFT then a similar piece or research to PACE (PACE in disguise on a different sick population)?

I think if it is and it's to be done by 'known' BPS adherents then it is very much our business to find out and SHUT IT DOWN. That's provided to above suppositions are correct of course.
Click to expand...
It seems that the philosophy behind the interventions might be similar or the same, but arthritis is an entirely different illness, which doesn't involve the same type of PEM as ME/CFS. It is purely a fatigue study rather than pretending to be a CFS study. So the issues are not entirely the same, and I'm not sure how wise it would be for us to get involved and to presume that we would be right to attempt to "shut it down". Maybe that's a decision for the arthritis community to make? We have plenty of work to do without moving into other illnesses!

Edit: But I think Alex makes some good points in the next post.

Study details...
Sam Carter said:
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)
Click to expand...
 
alex3619

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Snowdrop said:
Is this LIFT then a similar piece or research to PACE (PACE in disguise on a different sick population)?

I think if it is and it's to be done by 'known' BPS adherents then it is very much our business to find out and SHUT IT DOWN. That's provided to above suppositions are correct of course.
Click to expand...
Yes, we learned the hard way. If that can help RA patients avoid the same mistakes we have a moral obligation to do something.

At the very least we should advise that objective measures are mandatory, including actometers, and that all data must be published within six months of paper publication, in line with recommendations elsewhere. Even then people need to be careful interpreting a study, and include rigorous analysis of the study methodology.
 
Large Donner

Large Donner

Senior Member
Messages
866
Could this LIFT project be something to do with the spurious CMRC projects that keep being funded as a means to get funding to people like Crawley and White as the CMRC seem so keen on doing?
 
lazybones

lazybones

Messages
14
Location
Newry, Northern Ireland
This is a reply I've received from ACUK Facebook message, it gives the email address to contact their research team directly. I've emailed the research team for more clarification but whatever the outcome somebody, somewhere has made a serious error by posting misinformation?

"Thanks for your comment. To clarify, we do not fund the PACE trial. We are funding £735,536 to LIFT, which aims to improve access to treatments which alleviate fatigue in people with rheumatic conditions. LIFT had robust review before funding was given and recruitment is planned to start next summer. For any questions please contact researchliaison@arthritisresearchuk.org Thanks, Emily (social media team)

Also this reply......
"Our study is a distinct separate study and is not a study into Chronic Fatigue Syndrome. Thanks, Emily"
 
Snowdrop

Snowdrop

Rebel without a biscuit
Messages
2,933
Hi @Bob

I hear you and appreciate your point. I'm a bit catholic when it comes to how I see investment in the issues around ME.
I also think poverty is an ME issue. Not for everyone of course but I think it is one of many issues that intersects with this illness. I think of it more as including other groups and joining as a voice together against unjust treatment and looking for fairness (as far as anyone can get).

On the face of it RA is not much like ME perhaps but they are capable of being targeted by a political agenda. I'm not saying LIFT is that just that I don't know and don't automatically trust it to be for the benefit of the patients. On that topic I would repeat that having ppl with RA talk to each other and share via a website etc does more than a study could because the interaction can be more sustained, completely up to the individual to participate and when, allows for 'off topic' interactions that can enrich the experience.

Or maybe I just hear the word fatigue and I start to loose it. :)
 
Large Donner

Large Donner

Senior Member
Messages
866
Bob said:
They've made it very clear that they aren't funding PACE. I don't think they could be clearer.

(Edit: @Snowdrop, we crossed posts, and this comment wasn't aimed at you.)
Click to expand...
But are they funding Peter White et al directly or indirectly and the generalized term of fatigue or "chronic fatigue" regardless of the fact its on Arthritis patients because we know how easily that can be spun back on us?

The BPS crowd are a sly and slippery lot and they pretty much never give up their game by moving from different angles.

If they can make claims of "recovery from fatigue" from the LIFT study in the same way they did in the PACE study they can then spin it to claim that it automatically works on "chronic fatigue/ME" as if it works on a known disease like arthritis then it will/does work on "CFS/ME".

Remember to them ME is only fatigue and nothing else.

They will only makes claims of improved fatigue and like to ignore objective measures and use subjective ones that they can manipulate on tick box forms.
 
Last edited:
JohnCB

JohnCB

Immoderate
Messages
351
Location
England
For me, a real problem is that fatigue is never defined clearly. What is called fatigue varies hugely from case to case. I know from personal experience that different experiences all get called the same thing. I know "normal fatigue" from working overnight or finishing a two week tour of duty on an oil platform or spending a week looking after my baby and my wife while she was sick and going to work as well. This is something that pretty well everyone knows - too much activity and not enough rest.

Now I also know "ME fatigue" and "diabetes fatigue" from type 2 diabetes before it was controlled. These two are quite different to normal fatigue and they are quite different to each other. I discussed this with an acquaintance who had long term depression and then also developed ME. She could distinguish "depression fatigue" from "ME fatigue.

Dolphin said:
https://twitter.com/i/web/status/773657495315316736
From 2008
Click to expand...

Here in this document they are talking of fatigue as if it is clear and understood. I'm not sure that they are clear that fatigue can mean so many different things. These use an anecdotal description of fatigue -

The workshop opened with a patient describing her experience of fatigue in RA. A number of symptoms characterised her fatigue: heavy legs, difficult to move and movement was not effortless, sluggish, lacked energy, difficult to concentrate, and ‘brain fog’ (when messages did not get in or out of the brain).
Click to expand...

How many of us would describe all these things as fatigue? How many people with "normal fatigue" would think of all these things? Back in the day when I experienced normal fatigue it was tiredness and the need for sleep. Sleep, perhaps just one good night's sleep and a return to normal activiuty levels was enough to resolve it.

Simply calling all these very different experiences fatigue creates a great deal of misunderstanding (and is also why I hate the term CFS).

Going to the people with RA and saying "We can resolve your fatigue. We have resolved CFS fatigue." is doing them a disservice. How many people with RA realise that these "researchers" are actually lumping the RA experience together with something very different.

Medical people will differentiate minutely between different kinds of cancer or infection or whatever. They need to be equally clearcut with fatigue.It can be many different things.
 
Y

Yogi

Senior Member
Messages
1,132
lazybones said:
This is a reply I've received from ACUK Facebook message, it gives the email address to contact their research team directly. I've emailed the research team for more clarification but whatever the outcome somebody, somewhere has made a serious error by posting misinformation?

"Thanks for your comment. To clarify, we do not fund the PACE trial. We are funding £735,536 to LIFT, which aims to improve access to treatments which alleviate fatigue in people with rheumatic conditions. LIFT had robust review before funding was given and recruitment is planned to start next summer. For any questions please contact researchliaison@arthritisresearchuk.org Thanks, Emily (social media team)

Also this reply......
"Our study is a distinct separate study and is not a study into Chronic Fatigue Syndrome. Thanks, Emily"
Click to expand...

Thanks @lazybones

Which LIFT study is this? Is this the Aberdeen Uni one above?
So why does the website say £1m so how could it get confused with this one and for a different uni?
Why have ARUK not explained why there is incorrect information on the website?
QMUL referred to additional funding for PACE in the tribunal. If it is not this £1m study then what is it?

Something does not feel right here.
 
Y

Yogi

Senior Member
Messages
1,132
ClarkEllis

ClarkEllis

Messages
55
Yogi said:
Hi @ClarkEllis Firstly been meaning to write this since the tribunal but just wanted to THANK YOU for your work on getting the twenty odd charities to write to QMUL. I think that had a big impact also on the positive tribunal decision. THANK YOU!:thumbsup:
Click to expand...

You're welcome. The charity letters were only a small part of the submission to the tribunal and Mr Matthees deserves all the credit for the result. I'm sure though that the charity letters were useful in the case and had some impact. I'm glad to have started the charity campaign, and it was thanks to the response from patients who got behind the idea and took action that it was so successful; that's what got the patient orgs to write to QMUL. That's what we need, good ideas, and action from patients. I sincerely believe that patients can empower themselves, challenge the problems in this disease and thus achieve positive change by their action.

Yogi said:
I didn't understand your tweet. Did ARUK respond to you as I could not find it?
Click to expand...

Sorry, I didn't explain it very well on Twitter. They didn't respond to my tweet, but I had also emailed them the same question and to ask if they were funding ME/CFS in any other way, and they replied (by email) that they are not. It was just a mistake on the research council funding index and they are working to get it changed. Seems someone funded PACE follow up though which is strange given the 2 year follow up results showed a null result. What possible value can there be then to a 5 year follow up?
 
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