Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Arthiritis UK (ARUK) funds QMUL re PACE trial with £1m

Discussion in 'General ME/CFS News' started by Yogi, Sep 7, 2016.

  1. Yogi

    Yogi Senior Member

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    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:





     
  2. Sasha

    Sasha Fine, thank you

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    I'm confused, @Yogi - if I follow that link, I don't see anything about ARUK.
     
  3. Yogi

    Yogi Senior Member

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    Click 'Outcomes' tab then click 'Further Funding' tab
     
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  4. slysaint

    slysaint Senior Member

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    "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
     
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  5. Denise

    Denise Senior Member

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  6. Denise

    Denise Senior Member

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    I posted this question in the PACE Trial and PACE Trial Protocol thread but will post it here also in hopes someone has can answer
    My ignorance is showing - why is funding coming from Arthritis Research UK and what else have they funded (re ME)?
     
  7. Yogi

    Yogi Senior Member

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    Thanks @Denise. I didn't see @Dolphin's post on the PACE trial mega thread. It needs its own thread as quite a big thing.
     
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  8. Denise

    Denise Senior Member

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    I absolutely agree that this needs its own thread in addition to the info being on the (endless*) PACE Trial thread.




    * - BOO HISS that it is endless!
     
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  9. wdb

    wdb Senior Member

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    Looks like they see a link in treatment of the conditions:

    Arthritis Research UK - Fatigue in musculoskeletal conditions

     
  10. Yogi

    Yogi Senior Member

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    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
     
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  11. Yogi

    Yogi Senior Member

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    Esther12 likes this.
  12. worldbackwards

    worldbackwards A unique snowflake

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    Am I right in thinking then that Arthritis Research UK have invited White et al in and showered them with cash after their noted success in ME? Silly buggers, they'll live to regret that, especially when they realise that they can't get rid of him.
     
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  13. Valentijn

    Valentijn WE ARE KINA

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    Ugh, the psychobabble is spreading :alien:
     
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  14. Cinders66

    Cinders66 Senior Member

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    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
     
  15. Cinders66

    Cinders66 Senior Member

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    Oh the joys
     
  16. Chrisb

    Chrisb Senior Member

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    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?
     
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  17. Yogi

    Yogi Senior Member

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    Last edited: Sep 7, 2016
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  18. Yogi

    Yogi Senior Member

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    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.
     
    Last edited: Sep 7, 2016
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  19. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    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).
     
    Last edited: Sep 7, 2016
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  20. worldbackwards

    worldbackwards A unique snowflake

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    I seems to have heard that one before...
     

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