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Action for M.E. - Placing Patient Views at the Heart of a New Research Strategy

Discussion in 'Phoenix Rising Articles' started by Firestormm, Dec 6, 2013.

  1. Esther12

    Esther12 Senior Member

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    I've never actually seen it... for my 'to do' list!
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I emailed AfME with a critique of the first PACE paper soon after it was published. I don't think I ever had a reply. I think it was months later that they published a critique in their magazine InterAction, which I think was fairly good.
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I wonder whether @Leopardtail means this programme. Channel 5 is not renowned for being particularly highbrow, but a few programmes are exceptions. We do need to educate all sectors of the population about ME, so no harm in trying that one, as long as it doesn't spin things the wrong way.
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Presumably you know that the type of CBT used with GET doesn't do what you refer to above. It tells people to forget what they have learned from experience, to stop associating exertion with PEM, etc., although I believe there are changes afoot to make it more sensible...along the lines of what most of us know already.

    What's this 'constant guilt'? I know that some ME sufferers feel this, but I don't. Why should I? I only feel guilt when I have done something wrong!
    peggy-sue likes this.
  5. Bob

    Bob

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    Of course we shouldn't feel guilty for being ill, and we shouldn't feel guilty for needing help from other people. But society is set up in such a way to make us feel guilty.
    The government, health-services, therapies, families, neighbours, the media, the benefits system can all contribute to making us feel inadequate at times.
    We receive constant messages throughout our lives that we should all be independent and not a 'drain' on society, etc.
    This is nonsense, of course, because no one can survive without the support of others, and everybody contributes to society in different ways. (The quietest people often adding most value.)
    Those with a lot of money and a platform from which to promote their opinions (e.g. newspaper owners and politicians), find it easy to point fingers at those who don't have equal resources to make their voices heard.
    Personally, I find it a constant battle to fight all the messages constantly coming at me from many directions.
    I sometimes feel like i'm in a constant battle, not just with my illness, but with society.

    So we shouldn't feel guilt, and we have nothing to feel guilty about, but if you never feel any guilt at all, then you're doing a lot better than I am.
    Last edited: Feb 25, 2014
  6. Min

    Min Senior Member

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    http://carersfight.blogspot.co.uk/2010/03/16-good-reasons-to-be-very-suspicious.html

    16 Good Reasons to be very suspicious of Action for ME.

    Includes:

    Valentijn, peggy-sue and allyb like this.
  7. Firestormm

    Firestormm Guest

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    Most of my guilt stemmed originally from the feeling that I was not being believed. And an enormous amount from simply being unable to work. The two compounded each other and dragged me down many times. I would think 'maybe I am not ill so let's get back to work and give it another try' and then 'fail' and feel even worse. Yeah it is guilt. It is guilt BIG TIME. I could go on but I won't. Those who don't feel the guilt are I think lucky. I still do even today but not to the extent that I did. Hell of a road to travel. Hell of a road.
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I guess I had 'good' training in not internalising unjust attitudes, having been on the receiving end of these from my parents for as long as I can remember. I knew that it was unjust, and my feelings were of injustice and outrage, as they still are, both on my own behalf and on behalf of others who are treated unjustly. I knew that I was not, and did not do, all the bad things that were attributed to me.

    Yes, early in my illness I was unsure whether I was genuinely disabled and whether I just needed to try harder to do things, partly as a result of all the false information around and the way I was treated, but as I learned more, most of the guilt turned to that familiar feeling of injustice, and such feelings are amply expressed on Phoenix Rising and other ME forums.

    Yes - I occasionally feel a little guilty - but usually more regretful than guilty - when I cannot do things quickly, and hold people up, or when I have to disappoint someone, but guilt is far from 'constant'. I know that I do a lot more useful stuff than many people in paid work - indeed I have always felt a need to do this. Rather than feeling guilty I channel negative feelings into positive action. I know this is hard for severely-affected people and those obliged to continue with exhausting work and care for dependents.

    Yes, we are in a constant battle, which most of us fight bravely.

    It's the expression 'constant guilt' apparently attributed to most or all of us that I take issue with.
    Last edited: Feb 25, 2014
  9. Leopardtail

    Leopardtail Senior Member

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    Many people who get ME very young find that they are regarded as lazy rather than ill - it has a profound effect in relationships. The CBT when delivered the right way concerns itself with shrugging off unreasonable expectations that are founded in ignorance, not trying to explain yourself etc. My comment was about those around an ME patient 'encouraging' this feeling. For example by demanding equal levels of activity/workload complaining about 'fairness'. For some the very long time to diagnosis can cause entrenched attitudes in family that do not change with diagnosis. That was my personal experience.

    Yes I am aware that the wrong form of CBT is usually given and that it's profoundly harmful. I was lucky to have received the more helpful form of CBT due to not having been diagnosed with ME at the time.
    Last edited: Feb 25, 2014
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  10. Leopardtail

    Leopardtail Senior Member

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    I wouldn't describe it as 'highbrow' but it is brighter than the average chat show. It does also tend to present mixed views of any topic. The previous program some years ago was the only balanced program I have ever seen on ME.

    Given that medics are determined not to be objective, its seems to me that we need a route to 'Jo Public' in order to generate demand for change.
    peggy-sue and Firestormm like this.
  11. Min

    Min Senior Member

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    peggy-sue likes this.
  12. Leopardtail

    Leopardtail Senior Member

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    I have seen a few references to the PACE trial amongst the comments here and information on the current/upcoming policy from AfME.
    There are a few positive and pro-active points I would like to make:
    • I agree that governance MUST be improved in all projects - a project should do what it is funded to do in the way it agreed to do it.
    • The diagnosis/identification of ME as distinct from CFS as distinct from Chronic Idiopathic Fatigue before any more projects at all are funded in Britain as least and preferably our major partners should be using one definition.
    • The criteria used need to be tested statistically on a large body of patients with ME and compared for accuracy with suitable other diesease for comparison. This would rule out criteria that pollute research populations with others diseases.
    • We also need criteria of similar rigour to provide a common method of assessing severity of the symptom group being tested and clear defintions of what constitutes mild/moderate/severe - without this results are not comparable.
    • I know the above would not be to the taste of some researchers, but that's just tough, we don't need more funds wasted on trials of PACE quality that then go on to cause us harm.
    • I would be acceptable for projects to ADD domain specific requirements (e.g. bowels problems) common criteria used throughout ME are needed in each domain.
    • We need all results tabulated (at a minimum) by disease severity - this allows us to determine who it might help/harm and to start gaining insight into disease process.
    • For research into treatment grouping of results by Neutral Effect, Positive Effect and Negative Effect needs to be mandatory for publication and or funding. This prevents distortion by grouping neutral with another group.
    • For research into biochemistry, grouping by Optimal, sub-optimal, super-optimal, high and low is need - results in Me are often subtle hence some precision and commonality are needed.
    • All such reporting must be repeated in way that prevent annuals cycles messing up results.
    These measures amount to simple scientific rigour that is unacceptably lacking in ME research. Researchers in Diabetes manage some degree of consistency in reporting that we should demand loudly and eloquently. We may well need to put researched funding into resolving this issues, but that will improve all subsequent research. Irrespective of who funds our research a common and high standard of governance is needed by act of Parliament if needed.
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  13. peggy-sue

    peggy-sue

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    The most important point you make there is one that can be applied to all research into ALL psychology., Leopardtail!

    For research into treatment grouping of results by Neutral Effect, Positive Effect and Negative Effect needs to be mandatory for publication and or funding. This prevents distortion by grouping neutral with another group.

    They don't know what their results mean because they never, ever take the neutral response to be a response!

    In a living system, no response IS a response.
    That's why computer models will never, ever be able to simulate the reality of the brain and have been on a hiding to nothing from the start. They are binary.

    Goiung back over years and years of reading psychology papers, and going right back to Milgram's seminal paper,
    it is amazing how many results are split 66:34.
    Milgrams subjects were.

    But nobody ever considered that there were 3 responses.
    Unquestioning adherance to authority. -ve
    Doubting authority, but allowing authority to overrule conscience. neutral
    Allowing doubts to overrule authority and go with conscience. +ve
    Min likes this.
  14. Min

    Min Senior Member

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    Unfortunately, Prof White (who also works for Swiss Re and the DWP) of the £5m PACE trial is now undertaking another trial of graded exercise, GETSET

    http://www.controlled-trials.com/ISRCTN22975026/

    Where is AfME's condemnation of more waste of public funds?
    peggy-sue likes this.
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I'm looking forward to the day when the stupid GETS stop getting funding and official approval. Then it will be...GET LOST! :D
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  16. Leopardtail

    Leopardtail Senior Member

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    There are obvious flaw in the design of this trial:
    • This trial may distort placebo response. Standard medical care for ME is essentially little care at all meaning low expectations of placebo response. GET/CBT like it or hate it involves 'personal attention' and should involve 'supportive personal contact' this means placebo should be higher in this group. For any such trial to be valid the 'placebo' has to be as convincing and reassuring as the primary treatment under assessment.
    • A proportion of ME patients improve throughout summer hence if there are improvements relative to placebo they may be 'dead and gone' the following spring any such trial needs to monitor at start, at end, and one full year from each of start and end to deliver real data.

    Who is funding this study Min?
    Last edited: Mar 12, 2014
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  17. Min

    Min Senior Member

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    GETSET funding is by theNational Institute for Health Research (NIHR) (UK). Anyone know how much this new ( or same tired old) stick to beat UK myalgic encephalomyelitis patients with is costing?
    MeSci and peggy-sue like this.
  18. Leopardtail

    Leopardtail Senior Member

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    A passing thought just occurred to me, has anybody here had experience of the form of CBT that encourages one to 'monitor thought processes' and discard the ones that waste energy? That particular form has no element of 'you can think your symptoms away'
  19. Leopardtail

    Leopardtail Senior Member

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    I just checked their website, it is the research arm of the NHS. In other words having dealt with one biased funding source we pay for (the MRC) we are now paying for another. This looks very much like an attempt to make the patient responsible for GET and do it on the cheap.
    peggy-sue and Min like this.
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Just did some searching and found it here.

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