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In progress: Fatigue - Reducing its Effects through individualised support Episodes in Inflammatory Arthritis (FREE-IA): A Feasibility Study.., Dures

Discussion in 'Health News and Research unrelated to ME/CFS' started by Andy, Jun 10, 2021.

  1. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Funded study in progress. My bolding.

    Abstract:

    Background Inflammatory arthritis refers to a group of auto-immune rheumatic conditions, most commonly rheumatoid arthritis (RA). In the UK, approximately 690,000 adults have RA. Around three quarters of people diagnosed are of working age, and there are 20,000 new cases every year. Fatigue is a distressing symptom, present on most days for most patients with inflammatory arthritis, with >70% reporting levels similar to Chronic Fatigue Syndrome. However, rheumatology nurses and occupational therapists (OTs) working with this patient group have reported that they do not know how to provide appropriate support. Our team has developed an intervention called FREE-IA (Fatigue - Reducing its Effects through individualised support Episodes in Inflammatory Arthritis) to reduce the impact of fatigue. FREE-IA is a brief, pragmatic intervention, delivered by rheumatology nurses/OTs using cognitive techniques. FREE-IA comprises two core sessions plus up to two optional sessions.

    Aims Our long-term aim is to test the clinical and cost-effectiveness of FREE-IA. However, we first need to answer the question of whether it is feasible to conduct a definitive randomised controlled trial (RCT) of FREE-IA. To address this question, our feasibility study has two main aims: To design and deliver the FREE-IA training package to rheumatology nurses/OTs; To explore and resolve key uncertainties to allow the final development of a definitive RCT of FREE-IA.

    Plan of investigation The feasibility study will be conducted in four phases: In Phase 1, we will develop and deliver FREE-IA training to approximately 6-8 rheumatology nurses/OTs from four sites. Training will be delivered face-to-face in a central location over two days. We will also prepare study documentation and gain ethics and other necessary approvals for the feasibility study.

    In Phase 2, we will recruit 50-60 patients from across the four sites, and collect their baseline data. Rheumatology nurses/OTs who have received the training will then deliver FREE-IA to participants at the end of their routine consultations. The two core sessions will be delivered face-to-face. The additional, optional, two sessions can be delivered face-to-face, by telephone, or by Skype, depending on participant preference.

    In Phase 3, we will collect quantitative outcome data at two time points to determine follow-up rates and completion rates of outcome measures from participants who have received the intervention. Our proposed clinical outcome measures include fatigue impact (the planned primary outcome), fatigue severity and importance, impact of disease, and disability. Our proposed measures of therapeutic mechanisms include participants self-efficacy, health competency, and support for autonomy. We will also collect data to inform the design of a health economics evaluation alongside a future definitive RCT.

    In Phase 3, we will also conduct a qualitative evaluation to determine the acceptability of FREE-IA to participants, and to gain insight into the experiences of nurses/OTs who have delivered the intervention. Data will be generated in one-to-one semi-structured interviews.

    In Phase 4, we will refine the intervention and prepare a grant preparation for a definitive RCT, if supported by evidence from Phase 3. The decision will be informed by recruitment rates, uptake and delivery of the intervention, completion rates of outcome measures, and acceptability of FREE-IA to participants.

    Potential benefits to patients and the NHS Short-term, this study will inform us whether we can design a definitive RCT to test the clinical and cost-effectiveness of FREE-IA. If, following the definitive trial, we find that FREE-IA is effective, it has the potential to benefit patients by offering flexible, accessible support for a symptom that causes high levels of distress. There is the potential to benefit the NHS by providing rheumatology nurses/OTs with additional [sic]

    https://fundingawards.nihr.ac.uk/award/PB-PG-1216-20014
     
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  2. rvallee

    rvallee Senior Member (Voting Rights)

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    tel·e·o·log·i·cal /ˈˌtelēəˈläjəkəl/

    adjective
    1. PHILOSOPHY
      relating to or involving the explanation of phenomena in terms of the purpose they serve rather than of the cause by which they arise.
      "teleological narratives of progress"
    2. THEOLOGY
      relating to the doctrine of design and purpose in the material world.
      "a teleological view of nature"
    When you are already planning the final stages, including a cost-effectiveness analysis, while still pretending to be at the "is this even feasible?" phase, you are not doing serious work. This is an outcome-seeking experiment where the conclusion could be written as is today, unchanged from what it will be a few years down the line. The conclusion has, in fact, been written many times before, identical, copy-paste versions of the same formula.

    Do these people believe they have magical powers or what? That simply being a "supporting" white coat means they can look the sick in the eyes and heal them? Because it's hard to argue that this isn't what's happening here, ironically showing the white coat effect mostly affects medical professionals themselves. Because it's all damn projection. All of it.

    People speak of late-stage capitalism, with NFTs a good example alongside the inability to deal with climate change, but late-stage paternalistic medicine needs to be discussed in the same framing, this system was mostly built in pre-science days and it's really showing its age.
     
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  3. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Don't forget the requisite last line of the conclusion -- More research is needed to further refine the therapy for it to deliver these results long-term.*

    * A particular bug in their results that the LTFU numbers fall to nothing. And interesting I think in that all the other numbers are never clinically significant to warrant more research but somehow do because they are spun from minor statistical significance. But if they spun the LTFU numbers they'd could not claim to need more money for research. So they need perpetually bad LTFU numbers.
     
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  4. rvallee

    rvallee Senior Member (Voting Rights)

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    Yup the algorithm is simple, if:

    • it works: it works
    • it doesn't work: it should work so more research is needed to show it does work
    They never accept null results, don't even trust their own research unless it meets their pre-determined expectations. This is not science, this is the exact opposite of science.
     
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  5. Hutan

    Hutan Moderator Staff Member

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    No objective outcomes for their planned 'definitive RCT'. The study result is in safe hands.
     
    Last edited: Jun 11, 2021
  6. Mithriel

    Mithriel Senior Member (Voting Rights)

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    This is worrying because it show the way that ME = CFS = chronic fatigue is used to dismiss all the biomedical problems we have. This has been the continual goal of the BPS.

    Fatigue is acceptable as something to be treated by CBT and GET. Most people have felt fatigue and overcome it by forcing themselves to do something.

    Being tube fed, paralysed, vision problems, severe pain, immune dysfunction, all the consequences of autonomic dysfunction, are harder to pass off as common problems some people just complain about more.

    And continual repetition gives a subtle inference that people with RA, MS, lupus and so on have all the dreadful symptoms of their disease plus something the same as CFS yet it is the ones with CFS who are moaning ...
     
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  7. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Do we know that ‘fatigue’ (presumably idiopathic) is something that can be treated by CBT and GET, there has just not been the research? Such as PACE is equally bad at answering any questions about intervention for the symptom of chronic fatigue in isolation as it is about treatment for ME. The BPS cultists have let down people with idiopathic chronic fatigue as much as they have let us down.

    All we can say is the idiopathic chronic fatigue, if it exists, is different to chronic fatigue syndrome or ME, and we have no reasonable research that tells us what might help with either. It is possible that appropriate activity management and/or psychological intervention might help the treat the former, though it clearly does not help the latter, but at present that is pure speculation.

    I think until we know a lot more we should be wary about throwing any one under the BPS bus.

    [edited to correct typos]
     
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  8. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Have they? I don't think I ever have. If I am fatigued and try to do something I usually just feel even more fatigued. I may be pleased to have done something essential, like fasten down a dinghy in a force 8 gale in the middle of the night, but I don't recognise the idea of 'overcoming fatigue' that would suggest the action was somehow helpful.

    In the context of school sports holidays I would say that the usual result of making children carry on when they are fatigued is to risk putting them into a state of collapse.

    I agree with Peter that the idea that somehow CBRT or GET are appropriate for nonspecific fatigue is as baseless as it is for ME/CFS.

    The study of this thread looks to me like fairy tales. People with RA are not like PWME. Some get exhausted but these days if they are properly treated with anti-inflammatory drugs most of them are not that either. The idea that 70% of RA patients are seriously fatigued is just nonsense. They may be at presentation but the idea that somehow nurses or OTs can deal with this is ridiculous. The disease needs to be controlled immunologically.
     
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  9. chrisb

    chrisb Senior Member (Voting Rights)

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    It may, or, equally, may not be of interest that rheumatoid arthritis was mentioned by Arthur Cott in 1985 in the Context of "hurts" versus "harms". So this question has been at the heart of the "illness behaviour model" since the outset.

    Shortly after discussing lower back pain and chest discomfort associated with various cardiac related diseases he states

    Understanding the distinction between "hurt" and "harm" issues could have significant beneficial effects on behaviours which influence levels of disability. With "hurt" issues for example the emphasis may be less on means of avoidance, and more on empirical problem solving strategies for increasing tolerance. With conditions such as , for example, rheumatoid arthritis in which the discomfort is popularly understood and accepted as not being associated with issues of "harm", it is not uncommon to observe cases with significant disease and no discrepant illness or disproportionate disability. In such cases, behaviour is characterised by "escape" rather than "avoidance"; that is limitations in activity occur only when pain and discomfort reach intolerable levels. Without the concern of "doing oneself harm", the reduction and avoidance of activities associated with pain and discomfort can be markedly reduced. People need not be afraid to engage in activity.

    Does this assessment coincide with experience of the condition?
     
  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Seems like drivel. In 1985 occupational therapists were busy teaching RA patients 'joint protection techniques' to reduce the harm done to joints by usage. Most adults with RA keep going as much as they can because they find that unless they move their joints as much as possible during the day they just get stiffer and stiffer. So ironically they are worried about harm, but the harm from combination of disease and inactivity. It became dogma that movement was good but force on joints was bad. It may have had some truth but it was never based on reliable evidence.

    Children in contrast tend not to have an understanding of the need to control their own health and will sit in a pushchair immobile. Parents may well allow that, not understanding that in childhood arthritis if the joints are not moved they frequently become permanently fixed. So children with arthritis need physiotherapists in a way that adults do not. That may have considerable relevance to the link between exercise programmes for ME and paediatric rheumatology.
     
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  11. chrisb

    chrisb Senior Member (Voting Rights)

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    Thanks. that's what I thought. But I think this paper was where the idea of exercise causing merely "hurt" and "not "harm" in ME came from. Seems like an extrapolation from a false premise.
     
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  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The bit about people with RA only limiting activity when it is intolerable is also garbage. When assessing an RA patient I would get a huge amount of information simply from the way they moved. Someone with RA walks differently, sits down differently, turns their head differently, and when you turn the hand palm up from palm down the elbow automatically moves towards the body - avoidance is on autopilot. Signs like that were the stock in trade of working out whether or not someone needed more treatment.
     
  13. chrisb

    chrisb Senior Member (Voting Rights)

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    Interestingly he cites no authority for the proposition. The nearest reference is at the end of the previous (EDIT paragraph) quoting Bortz W M (1984) The disuse syndrome. The Western Journal of Medicine141, 691-694
     
    Last edited: Jun 12, 2021
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  14. Mithriel

    Mithriel Senior Member (Voting Rights)

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    I think people resent that they feel fatigue but still do things, like getting out of bed on a winter's morning to go to work while some people say it makes them feel too bad and won't do it.

    Parents of young children are often fatigued but still have to feed them and look after them even though it makes them feel fit to drop

    I don't think it is that people think exercise overcomes fatigue just that they believe they know what chronic fatigue is like and don't believe it is an illness, just self indulgence.

    I only know from books so it could be wrong but characters often feel tired but force themselves to do a run in the morning and get energised for the day. If exercise believers feel that way it could explain why GET sounds so plausible to them.
     

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