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

Yogi

Senior Member
Messages
1,132
http://gtr.rcuk.ac.uk/projects?ref=G0200434

Description ARUK specific call
Amount £1,000,000 (GBP)
Organisation Arthritis Research UK
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 05/2016
End 04/2019

Is this the outcome of the new collaboration for the CMRC?

http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/

http://www.ayme.org.uk/news/-/asset_publisher/2uYbtahTJKdk/content/uk-cfs-me-research-collaborative

https://www.actionforme.org.uk/uploads/pdfs/cmrc-conference-report-final-october-2015.pdf


What is going on here?
Why have ARUK funded the PACE trial?
What is the connection between the CMRC?
Why has a charity funded the PACE trial?

Stay tuned:



 
Messages
2,125
"To kick-start this endeavour, the Collaborative is working with Über Research to gain a detailed overview of research funding into CFS/ME in the UK and globally over the last 10 years. This will, for the first time, provide a detailed picture of what research has, or is, being undertaken, evidence the gaps that exist in specific research areas, and inform what action needs to be taken as part of the Grand Challenge."

http://www.uberresearch.com/dimensions-for-funders/
will be interesting to see what this lot come up with particularly in relation to the UK
 

wdb

Senior Member
Messages
1,392
Location
London
Looks like they see a link in treatment of the conditions:

Arthritis Research UK - Fatigue in musculoskeletal conditions

Exercise
Graded exercise therapy improved fatigue in people with SLE immediately post-intervention compared to relaxation or usual care (n=93, SF36 vitality 51 vs 41 and 34, p=0.015) and was maintained at 3 months.59 Home aerobic training for people with RA showed only a trend toward fatigue improvement60 but group exercise in people with self-reported arthritis (8 weeks of 2 x 1-hour sessions) showed an improvement in fatigue post-intervention compared to controls (n=346, VAS 35.4 vs 43.7, p=0.01), which was maintained at 6 months.61 A Cochrane review of exercise in FMS found 16 studies in which fatigue was measured, and concluded that effects on fatigue were unknown (moderate quality evidence).62

Psychological interventions
A systematic review of psychological interventions in RA up to 2001 analysed 25 RCTs but none addressed fatigue. Cognitive-behavioural therapy (CBT) addresses the links between thoughts or beliefs, feelings and behaviours, and uses individualised goal-setting and cognitive restructuring to help patients make desired changes in behaviour. In people with early RA who were experiencing psychological distress, CBT resulted in a significant improvement in fatigue post-intervention, which was maintained at 6 months (n=59, effect sizes 0.55, 0.48).64 Although CBT resulted in an improvement in fatigue in people with SLE, this was not significantly greater than symptom monitoring or usual care.65 A systematic review of 13 RCTs of mind-body therapies in FMS found a single trial of hypnotherapy, with inconclusive evidence of effects on fatigue.66 Written emotional disclosure (about traumatic events, deep thoughts and feelings, or benefit-finding) reduced fatigue at 3–4 months compared to factual writing or usual care in people with RA or SLE (n=75, VAS 40.9 and 57.8 vs 75.8)67 and in people with FMS (n=92, SF36 –13.7 vs –3.7, p=0.05),68 although this effect was lost by 10 months in FMS. A psychological intervention combining self-efficacy, social support, problem-solving and repeated counselling for people with SLE and their partners reduced fatigue at 12 months (n=122, 10-point scale 5.1 vs 6.3, p=0.02).69 A combination of CBT with education and exercise in FMS resulted in an improvement in fatigue at 4 months (n=183, 10-point scale –0.61 vs +0.09, p=0.02).70

Illness perceptions, symptom-control, self-efficacy and coping
Two longitudinal studies have explicitly tested Leventhal’s Common-Sense Model (CSM) of beliefs about illness applied to fatigue among people with RA. Higher fatigue after 1 year is consistently predicted by perceptions that RA has severe consequences.22,37 Lower self-efficacy (perceived personal control) over pain or mood/fatigue has been found to predict higher fatigue after 2 years in a further longitudinal study.38 Although the CSM predicts that coping mechanisms mediate the effect of perceptions on health outcomes, only one of the previous studies has identified a relationship between avoidant coping and fatigue after 1 year,37 and the effect of perceptions of consequences remained significant along with that of coping style. Further evidence is required on this issue, particularly for conditions other than RA.
 

Yogi

Senior Member
Messages
1,132
https://www.arthritisresearchuk.org...eeting Reports/Fatigue and RA RSM report.ashx





SESSION 3: NOVEL APPROACHES TO THERAPY In the final session the question of the most promising approaches to treating fatigue were discussed. PHYSIOLOGICAL APPROACHES Peter White introduced this area with a presentation on the physiological approaches that have been used in CFS.  Key question was the choice between a complex intervention or to treat a single factor that has systemic effects?  The mismatch between perceived and actual effort is the most replicated finding in CFS (10-15 studies) Of the potential approaches, Graded exercise therapy (GET), as tested in CFS, should be tried in RA. The steps behind GET are:  explain and educate  assess physical capacity  establish baseline activity  individual home exercise  increase duration before increasing the intensity  target heart rates  feedback to the patient In five trials (3 UK, Australia and New Zealand) the percentage of patients that had improved was at least twice that of controls after three months of treatment. The physiological improvements included an increase in peak V02 with over a quarter improving in strength but this was not associated with feeling better. The sense of effort normalises after GET treatment i.e. it changes the brain more than the body and perception changes first. Studies in RA have been less successful as they have been training programmes rather than GET, better results can be achieved with graded exposure. This behavioural change must be maintained so exercise must be continued and this is more likely if an inhome exercise is established rather than a high or moderate intensity training design. Summary  GET needs further exploration in RA fatigue  Its efficacy may be more brain therapy not reconditioning  Examining biomarkers before and after treatment may help us to learn more about RA fatigue PSYCHOLOGICAL APPROACHES Trudie Chalder discussed how cognitive behavioural therapy had been used to treat chronic fatigue syndrome (CFS) in which both fatigue and disability are perpetuated by fearful cognitions and avoidance behaviour. Disruptive sleep can lead to symptom focusing and lead to low mood leading to muscle pain. Three studies on the efficacy of CBT in fatigue have all shown that fatigue and physical functioning was improved in patients with CFS after treatment (CBT). There is also evidence that fatigue after serious infections (not common URTIs) can be reduced by CBT. Lengthy convalescence, being less fit or active and psychological co-morbidity can predict chronic ill health. An RCT was conducted to test the hypothesis that a brief psycho-educational package, administered by a research nurse shortly Fatigue in rheumatoid arthritis Arthritis Research Campaign Page 10 after onset of Glandular Fever would reduce fatigue symptoms. Intervention consisted of: one “face to face” session followed by two telephone sessions two weeks apart with a nurse. Sessions were reinforced with a booklet and “lifestyle management” (advice on return to work, gentle grading of activity and planned rest). After six months there was less fatigue in the treated group. Psychoeducation has also shown positive results in reducing fatigue in chronic diseases (cancer). The most frequent behavioural strategies used to cope with fatigue in RA are: rest, pacing according to energy levels, avoiding or limiting activities and distraction. One open study has shown that CBT can change a number of outcomes in RA patients including fatigue. A tailored CBT for people with early RA who were already psychologically distressed showed that effects were found on primary outcomes of fatigue, depression & perceived social support. Summary  CBT needs to be targeted  A model needs to be specified  An a-priori hypothesis with specific outcome needs to be stated  There is some evidence for a cognitive behavioural model of fatigue syndromes (not just CFS) with beliefs and avoidance behaviour playing a key role  CBT or a modified form of CBT is an effective treatment for fatigue syndromes in general Where now for RA fatigue?  Catastrophic beliefs can perpetuate fatigue in CFS, this has not been tested in RA  Examine the relationship between cognitive behavioural responses and fatigue / social adjustment in RA prospectively  A cognitive behavioural intervention for people with RA fatigue is already being tested (arc grant, Hewlett et al)  RCTs are required The workgroups were then asked to consider the following questions  Do we know what the best interventions are?  Which groups should they be applied to?  How can we assess how people respond?  What are the research priorities? WORKGROUP 6: PHYSIOLOGICAL APPROACHES There are a number of potential physiological approaches from work in CFS:  GET  Drugs (cytokine blockage)  Gabapentin – to look at pain pathways  Tocilizumab – role of IL-6 in exercise, studies in breast cancer patients  Modafenil – CNS stimulant  Nutritional supplements  Complementary therapies Fatigue in rheumatoid arthritis Arthritis Research Campaign Page 11 Key challenges  No gold standard  Acute vs. chronic fatigue  Which patients should be targeted – as there are multiple facets to RA fatigue? Priorities for research  Treatment algorithm – tool to identify cause and level of fatigue in individuals  Patient perspective  Collect the correct data  Common assessment tools that are RA specific, multi-dimensional and validated  Health economics Constraints  Health economy – is it cost-effective?  Lack of outcome tools – need a reliable consistent set. Can arc help to guide development of them? Need consensus from experts on a core set  Patient perspective – drug vs. graded exercise  Complexity of disease/confounding factors WORKGROUP 7: PSYCHOLOGICAL APPROACHES The focus group discussed how psychological approaches could be used in RA and what other therapies had been used. What evidence is there of treatments used?  CBT (only one RCT)  Emotional expression (expressive writing reduced fatigue in lupus)  2 x GET (1 trend, 1 positive)  2 education/self-management studies (1 positive, 1 trend) What needs to be done?  Something that can be put into practice (briefer interventions / more intensive intervention / who should deliver the intervention?)  Managing low mood / stress (as part of a CBT not a lone project)  Sleep management (lack of sleep studies)  Factorial design – 4 groups (CBT, GET, GET + CBT, TAU)  Lessons from CFS need modifying for exploration of their applicability in RA How can we achieve this?  Mechanisms of change  Can be measured in context of trial – different mechanisms may be implicated with different treatments  When to rest / exercise  Acute versus chronic. Conflict of beliefs - need to exercise but too much can be harmful in RA and inflamed joints need to be rested  Target health professionals  Modify CBT / intervention according to patient need / target groups  Control groups Fatigue in rheumatoid arthritis Arthritis Research Campaign Page 12  In psychological studies  Disease controls  Within disease sub groups Outcomes  Multiple outcomes  Disability  Quality of life  Qualitative studies to examine patient experience of intervention  Health Economist – Dr appointments  More objective measures – actometers, walking /step test  Adverse events / serious adverse events CONCLUSIONS WHAT WAS LEARNT? Despite knowing about fatigue in other diseases such as CFS very little is known about fatigue in RA. It was felt that it would be important to understand the physiology behind fatigue as this would help research into fatigue in other diseases, not only RA, and this may be an area for other charities to invest in as well.  Basics behind pathophysiology of fatigue in RA  Literature review on questionnaires/fatigue scales  Basic experiments in RA patients with fatigue to establish whether perceived effort for exercise is greater than actual effort required WHERE NEXT? The main outcome of the meeting was that is was important, as a first step, to establish some guidelines that could be used to assess and measure fatigue in RA and set outcome measures that could be used. This would be achieved by establishing a taskforce (led by Sarah Hewlett) with the support of arc. A further meeting was also popular as a number of participants were aware of a number of research studies that were due for publication and would have been published by the time the next meeting was held. MAJOR OUTCOMES  Taskforce to establish set of guidelines for assessment and measurement of fatigue in RA and outcomes that could be used in research – feed through to arc inflammatory diseases CSG  Further meeting in 9 months to a year to discuss taskforce conclusions and new insights that have been published in this research area
 

Cinders66

Senior Member
Messages
494
A) this is NOT what I hoped for by ARUK involvement, although I was always rather puzzled by their involvement in the CMRC anyway. It also means PACE simply won't be allowed to fail, as iime said if they're planning expensive follow up research,

B) I Suppose it is a comfort that Chalder, White and moss Morris believe they have treatment for most troublesome chronic conditions from cancer RA & MS fatigue, to chronic pain , to the menopause and kidney disease so it's not just CFS they believe they can easily remedy. Chalders cfs comment above I find as offensive as ever. Arrogance has no bounds and if their assumptions are based on cfs research it's shakey foundations. I would have thought more established disease like MS & RA safe from their psychobabble but seemingly not, fatigue and pain anywhwre are ripe ground for them it seems
 

Cinders66

Senior Member
Messages
494
. Summary  CBT needs to be targeted  A model needs to be specified  An a-priori hypothesis with specific outcome needs to be stated  There is some evidence for a cognitive behavioural model of fatigue syndromes (not just CFS) with beliefs and avoidance behaviour playing a key role  CBT or a modified form of CBT is an effective treatment for fatigue syndromes in general Where now for RA fatigue? Catastrophic beliefs can perpetuate fatigue in CFS, this has not been tested in RA

Oh the joys
 

Chrisb

Senior Member
Messages
1,051
The men in white coats will be arriving any time soon to escort them away. ........they are the men in white coats, you say?

Were there any reports in the late 1980's of large numbers of white coats going missing, coinciding with a mass break out from a secure asylum?
 

Yogi

Senior Member
Messages
1,132
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.
 
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Messages
2,158
Surely the way to help patients 'catastrophising' about having arthritis is to give them good medical treatments and information so they understand their condition better, not paying ignorant psychobabblers to do 'cognitive restructuring', ie brainwashing. The mind boggles at the power of these psychs.

Please, somebody, send Arthritis UK copies if the letters to the Lancet and QMUL principal and links to Tuller's work... I'm not offering, I don't have the energy or know-how. These people have to be stopped (White and Chalder, I mean).
 
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