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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BMJ Best Practice on Chronic Fatigue Syndrome (last updated: July 31, 2017)

Discussion in 'General ME/CFS News' started by Dolphin, Aug 20, 2017.

  1. Dolphin

    Dolphin Senior Member

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    http://bestpractice.bmj.com/best-practice/monograph/277.html

    This is not open access:
     
  2. RogerBlack

    RogerBlack Senior Member

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    I note the above is available through a 7 day free trial.

    They recommend as a treatment first something from
    Vos-Vromans DC, Smeets RJ, Huijnen IP, et al. Multidisciplinary rehabilitation treatment versus cognitive behavioural therapy for patients with chronic fatigue syndrome: a randomized controlled trial. J Intern Med. 2016;279:268-282
    They also refer to CBT as a second treatment, but do not mention the 'illness challenging' CBT, just classical coping, and then go on to mention PACE.

    On individual treatments
    and
    (a reference for the % severe is not given).

    They then go on to mention exercise as a therapy, again predicated that it's an aerobic problem.

    They in the aetiology section mention rituximab, and various bio causes.

    The diagnostic section emphasises PEM.
    PEM is defined as
    They do mention 'psych' treatments under 'emerging treatments' - but it's below rituximab, and several other therapies.

    They mention that studies using oxford drag in lots of just fatigued.

    Perhaps the most problematic part is

    I note that Peter White is listed as a peer reviewer.

    In general, the document is less wholly positive on CBT and GET than might be expected.
    There are possibly useful parts.
    It does seem to be under general review, with the most recent being last month.
    It does not seem to mention at all any of the recent critical papers of CBT or GET.
     
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  3. Sean

    Sean Senior Member

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    They still can't let go of the exercise obsession.
     
  4. Snow Leopard

    Snow Leopard Hibernating

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    "maintaining a daily low-impact physical activity routine"

    This won't reverse deconditioning - high intensity/impact activity is needed to do that (and is not possible when you have ME or CFS). Maybe they should have had an exercise physiologist as a peer reviewer...
     
  5. A.B.

    A.B. Senior Member

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    The illness is fluctuating and trying to meet certain activity levels every day will not work, it will just make patients crash. Patients have to adapt to the illness, not vice versa.

    Going for a walk every day is also a great way to trigger PEM.

    Patients should be self managing this aspect of their illness, rather than trying to follow some routine made up by CBT/GET proponents.
     
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  6. Skippa

    Skippa Senior Member

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    Is there perhaps a disconnect between physical clinicians/real scientists/GPs etc on the one side and the psych crowd/actual front line therapists on the other sides?

    Such that the former group really don't realise that the latter actually believe it's all in the head/we'll cure you with positive thoughts?

    Eg the first totally buy into the CBT/GET as an adjunctive or supporting treatment, but aren't fully aware that the psych crowd will then tell the patient it's all their own fault etc etc?
     
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  7. anni66

    anni66 mum to ME daughter

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    Follow the money....that' s why the exercise paradigm and deconditioning continues.
     
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  8. Sean

    Sean Senior Member

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    That is the essence of the entire disagreement with the psychs.

    Until they understand and accept that central fact, then their futile war with reality, and the inevitable human carnage left in its wake, will continue without relief to either side.

    None of which is the fault of patients. We are not the aggressors in this conflict.
     
    Last edited: Aug 21, 2017
  9. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I am not familiar with what went before but there seems to be a shift of emphasis here?

    Perhaps there is some recognition that CBT and GET are not a panacea, but they seem to be replaced by a fuzzier version of the same approach. I guess this statement sums up the problem;
    • The primary goals of management are to provide a supportive healthcare environment with a team of occupational, physio, and other appropriate therapists who will manage symptoms and improve functional capacity.
    No, the primary goal of management is to help the patient get better. That might mean providing a 'supportive healthcare environment' but an intensive care unit or a biologic infusion centre does that too so this actually means nothing of itself. And then there is the assumption that the way to do it is a 'multidisciplinary team' when there is as little evidence for that being any use as there is for CBT or GET. How are these therapists going to 'manage symptoms' or improve functional capacity?

    As far as I can see this sentence would better be replaced by something based on a comment made by a parent of a young person with ME/CFS:

    'Nobody has any idea what the best thing to do is but if you are lucky you may find someone like this guy Chris who was really helpful. You may get asked to join one of these therapy trials but they seem to be a waste of time.'

    There seems to have been an attempt to avoid being prescriptive but then the old 'should' word comes in.
    'Patients should be educated... Patients are instructed...
    Why? When nobody knows what is best.

    I do not seem to be able to access this through UCL, which is almost unique. It seems I could access it through the hospital if I was still a member of staff. So BMJ Best Practice does to seem to be a academic journal, just a clinicians practice manual.
     
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  10. A.B.

    A.B. Senior Member

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    This seems almost revolutionary: "The lack of energy may be caused by autoimmune and metabolomic dysfunction that reduces mitochondrial ATP production." There is also a clear acknowledgement of PEM.

    The rest seems still influenced by the CBT/GET school of thought but not as much as I would have expected in a British journal.
     
    Last edited: Aug 21, 2017
  11. anni66

    anni66 mum to ME daughter

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    There is a slight change of emphasis and scientific acknowledgement because there has to be - there is too much evidence stacking up to the contrary to maintain the psychological world view that has pertained since the 1980s: it is however not significant enough to alter the " treatment" parameters- thus is simply being respun with a slight shift of emphasis. There is too much investment in the infrastructure of its delivery ( hence also the psychological framing of many other illnesses currently going on ) for constructs to be completely reframed.
     
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  12. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I am suspicious that this is just a sop to allow in the physiotherapists. If there is evidence for a muscle problem then physios can be brought in 'scientifically'. The emphasis is on lack of energy. But to me that is not the real problem. The problem is that exertion causes PWME to feel ill. If mitochondria are really important I think they must be important in the brain, or as Mike Murphy suggested, as signalling systems, and physiotherapy is not going to help those.
     
  13. A.B.

    A.B. Senior Member

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    Sadly this makes sense.

    Evidence that any exercise regimen can objectively improve functional capacity seems to not exist. CPET studies found that exercise worsens functional capacity for a while. Is it possible that there might exist some form of exercise therapy for a subgroup of patients that makes a clinically significant difference? Maybe, but it's up to the exercise therapy proponents to prove it. At the moment this idea seems to be wishful thinking.
     
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  14. NelliePledge

    NelliePledge plodder

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    Whoever did this is clearly seeing that the wind is shifting. This seems like just a minor revision to some guidance but it looks potentially positive The question is are they moving with the times in a neutral way without an agenda or are they actively using "weasel words" in line with an agenda of maintaining the BPS status quo
     
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  15. Londinium

    Londinium Senior Member

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    I share some of that suspicion but I suppose, grasping at straws, it still compares favourably to the recent NICE piece that stuck to the discredited 'likely to be due to emotional issues'. If GPs start receiving information that this is a physical disorder rather than malingering that would still be progress (which shows just how bad things are).

    The rest of it is still appears to be fairly pisspoor though...
     
  16. Cinders66

    Cinders66 Senior Member

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    I haven't read this years. I did the trial and read previous ones. Then it was quite bizarre because all the background stuff, the first pages, were quite good and reflected the latest science etc and treated as a physical illness. What was bizarre was the treatmemt section was basically .... but all that can be helped with CBT & exercise ...... which from a patient perspective didn't make sense.

    I hope they have modified it further and I'm glad they are presenting the latest science but I guess as long as PACE reigns these type of therapies will still be pushed? If anyone can put a file of what it in full says this year that'd be great.

    Are they still classifying it as rheumatic? I think that's where they moved it from psychiatric.
     
  17. ukxmrv

    ukxmrv Senior Member

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    My experience of seeing a NHS Neurologist at a London hospital and then being seen at the hospital for Neurology (Queen Sq) was that they knew exactly that they were doing.

    The patient would be lulled into a sense of false security with lip service being paid into ME being a physical disease, but their intention was to send the patient off to someone who would treat it as a psych one.

    Being seen at a NHS "CFS" clinic can be a little different. There's mixed beliefs and intentions there. Some clinicians give the impression that they believe ME is a physical disease but say they are "forced" by the NICE guideline to offer CBT and GE. Then the CBT or Physio will give the impression either implied or overt that these can cure or improve the patients symptoms.

    I'd say from my own experience that there are plenty of UK doctors of all types, who should know better, who genuinely believe that CBT and GE are curative.

    I've had frank discussions with clinicians at UK hospitals over decades and come across these beliefs. They have been taught in medical schools that ME and other conditions are psychological.
     
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  18. Mithriel

    Mithriel Senior Member

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    Not great, but it could make communication with a GP better. My GP is willing to admit he doesn't know and treats me symptomatically but he is worryingly near retirement age. This document comforts me that I could have an armed truce with a new doctor instead of an all out war!

    There is a place in ME for physio but it has to be so gentle it is almost invisible. I have tried over the years to keep full movement of all my joints following advice given to my Mother in Law who had RA. I do it by simply using different arms to reach for things, that sort of level of "exercise". I have also improved my walking by doing a few extra steps round the house every day. I lose it when I have a bad relapse but, luckily, I have managed to get it back every time, not that I have ever achieved going out! It makes life easier if I can get to a window to open or close it for instance.

    If physios can get their heads round that level of "exercise" and how important it is to pace then new patients would get useful information so that they might even recover.

    I can dream.
     
  19. AndyPR

    AndyPR Cookies for Tired Sam

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  20. Snowdrop

    Snowdrop Rebel without a biscuit

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    At this point they can't really say anything else. But I suspect it is meaningless.

    Physical or not the treatment is all the same and will continue so for as long as they can get away with it. So really nothing has changed. It would seem they are quite prepared to live with the disconnect between the reality and their own interests. The goal remains-- make psychiatry legitimate by validating it with neurology. The only question left to answer might be ; is there a level to which they will not stoop in achieving that goal?

    ETA: I have no problem with a scientific approach to understanding psychiatric issues. Which is what neurology should represent. Instead, because neurology is rather new and uncertain it is sadly being hijacked and abused to a political end.

    The best thing that could happen is that neurology develops into a more mature science that uses technologies that produce validated evidence leading to appropriate treatments based on sound evidence.
     
    Last edited: Aug 21, 2017

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