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Feedback from Stakeholder Engagement Workshop for the NICE guidelines on ME, Jan 2018

Discussion in 'Advocacy Projects and Campaigns' started by Keela Too, Jan 16, 2018.

  1. Alice

    Alice Established Member (Voting Rights)

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    The NICE Guidelines appear superficially reasonable but because they fail to mention either the seriousness of too much exertion and fail to offer any guidance on how to determine whether or not a person needs to rest more or has the physical functional capacity to be more active and or tolerate exposure to more exertional triggers they fail the ME/CFS community. The sad thing is that the research of Workwell et al has not been validated and extended. People are rightly concerned about harm caused by 2 day CPET tests. However, the key to improving health is not the 2 day CPET test, rather it is staying under anaerobic threshold and resting hard within 10% of morning resting heart rate. These 2 things are enabling people to improve. Limited research has been done regarding the limits of energy metabolism but Workwell et al have found an abnormally low anaerobic threshold and worldwide patients are observed to exceed their anaerobic threshold frequently. Athletes need to push themselves to reach the limits of their energy metabolism. However, people with ME/CFS reach and exceed these limits on a daily basis. All people with ME/CFS really need is for standard exercise physiological measures to be applied to them e.g. exercise/carry out daily activities at what is regarded as low intensity exercise e.g. 30% age predicted maximum..... Seriously - how many people with ME/CFS can get their HR's that low. Our problem appears to be that exercise physiology has NOT been applied to people with ME/CFS. Instead of experts in physiology looking at our heart rate abnormalities we have had mental health people tell us we are physically healthy and/or heart rate abnormalites are due to anxiety.
     
  2. Alice

    Alice Established Member (Voting Rights)

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    Mark Van Ness has a paper showing symptom exacerbation after the CPET test. This paper may help: Neural consequences of post-exertion malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Dane B. Cooka,b,⇑, Alan R. Lightc, Kathleen C. Lightc, Gordon Broderickd, Morgan R. Shieldsb, Ryan J. Doughertyb, Jacob D. Meyerb, Stephanie VanRiperb, Aaron J. Stegnerb, Laura D. Ellingsone, Suzanne D. Vernonf
     
  3. Alice

    Alice Established Member (Voting Rights)

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    From memory the USA Agency for Healthcare Quality - quotes some CBT studies as being mildly beneficial. They also make the point that ME/CFS has not been studied.
     
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  4. Sbag

    Sbag Senior Member (Voting Rights)

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    Were the diagnostic criteria thought to be important? As certain criteria are better than others and sone have been deemed to not he stringent enough.
     
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  5. Sasha

    Sasha Senior Member (Voting Rights)

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    What's the evidence for that, Alice?
     
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  6. Alice

    Alice Established Member (Voting Rights)

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    Our big problem is the lack of appropriate research. Most of the studies appear to still being designed by researchers with a bias and not ones that are listening and believing patients e.g. Fred Friedberg of StoneyBrook University using HRV and heart rate monitoring in a study but NOT in the way that patients are using these tools to great effect. One aspect of NICE that would be a shame to lose is the reference to HR monitoring and the implied implication that people should exercise under 50% of their max predicted HR until they can do 30 min of exercise a day. (Impossible for most people with ME/CFS to keep their HR this low whilst carrying our ADLS).
     
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  7. Sasha

    Sasha Senior Member (Voting Rights)

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    I agree with others on this thread that this is a huge issue.

    It's so easy for 'The evidence for GET is weak' to become 'There's evidence for GET, although it's weak'.

    And NICE may be embarrassed to say CBT/GET don't work after all the harm they'll have done by promoting it all these years, let alone the issue of doctors' natural discomfort in not being able to help patients by offering something.

    There's already a petition to avoid the NICE committee being stuffed with CBT/GET proponents.

    Very seriously, do we also need a 'Tell us honestly there's nothing?' campaign?
     
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  8. alex3619

    alex3619 Senior Member (Voting Rights)

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    It sounds very promising, but we have to keep engaged, particularly if the entire process will take another two and a half years.
     
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    So we have no reliable evidence and NICE have no reason to be interested.

    The crucial argument with NICE is going to be about removing CBT and GET. The only way to do that is to insist on rigorous evidence. Making other suggestions that are not based on rigorous evidence will destroy the case completely.
     
  10. alex3619

    alex3619 Senior Member (Voting Rights)

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    On heart rate monitors, we need researchers like those at Workwell, but maybe others, to do at least a pilot study on using heart rate monitors when informed by the latest exercise science. This is an area for exercise physiologists.
     
  11. Trish

    Trish Moderator Staff Member

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    I have not seen that claim before. Is there research on the 10% of morning resting heart rate. I would not be able to get out of bed if I had to stay that low.

    Sadly, none of the useful stuff on HR monitoring can be insisted on by patients without the danger of the GET brigade insisting on their approach too. Neither has sufficient evidence, so neither can be included.

    Perhaps we should ask for a guideline that simply says that there is no robust scientific evidence that any particular management strategy leads to improvement.

    I would like to see NICE go further and say that patient surveys suggest that pacing using activity diaries and/or HR monitoring is helpful in preventing worsening. But...
     
  12. Paul Watton

    Paul Watton Established Member

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    This is why the work that David Tuller, Keith Geraghty and others are doing, in demonstrating the flaws in the supposed evidence base in favour of recommending CBT & GET is vitally important.

    There would be no argument with recommending these treatments if they were well-evidenced, but they clearly aren't.

    The whole evidence base for behavioural interventions in ME /cfs stinks. So many of the papers published in this field have been shown to be unreliable, that until every one has been reanalysed and properly reviewed, non of them can realistically be trusted.

    What seems certain to me, is that after the debunking of PACE, there is no reliable evidence remaining to support GET remaining as a recommended treatment in the new guideline.

    Given his lamentable response to Invest in ME, Prof. Mark Baker seems to think otherwise, but it seems to me that the remaining evidence that he (and NICE) are relying on, has yet to be subjected to the same close scrutiny that has been applied to PACE.
    Whilst I'm not too familiar with Tom Kindlon's work in this area, I believe that he has collated evidence of harm resulting from GET. More of this kind of evidence is needed - preferably published in a peer reviewed journal.

    With regards to the use of CBT, there needs to be a clear distinction made between the kind of coercive brain-washing which has wrongly been labelled as CBT by the PACE crowd (and used to force ME patients comply with a GET regime), as opposed to the conventional kind of supportive talking therapy which the term CBT is generally understood to mean.

    Nobody argues with use of the conventional kind of CBT as a supportive therapy for patients suffering with other serious illnesses.

    If its delivery can be reliably cleansed of the impurities which the PACE crowd have contaminated it with (as far as it applies to M.E / cfs) and its relative ineffectiveness is properly acknowledged, then I wouldn't quibble with CBT remaining as an adjunct treatment recommendation in the new guideline.
     
  13. susanna

    susanna Established Member

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    Jonathan Edwards, you say, 'There was also a suggestion that there is scientific evidence for GET being bad for patients but the reality is that there is none. We simply have the experience of patients to go on. '

    Given that patients' reports of their experience of GET are not generally believed, what biomedical evidence do you think would satisfy the profession of a causal relationship of harm from GET? (eg, the equivalent of h. pylori) We find that even physical evidence of abnormalities following exercise is often interpreted to satisfy the bps concepts.
     
  14. Valentijn

    Valentijn Not a moderator

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    In the US, most healthy people have yearly physicals to screen for some nasty problems which can show up early on basic (cheap) blood tests. It would make sense to at least do that much for ME patients in the UK, especially since some risks are likely elevated due to either ME or general chronic illness: vitamin D deficiency, diabetes, cancer, etc.

    I think the disagreement here is largely semantics. NMH and similar are much more common in ME patients than POTS, according to the research, but patients use "POTS" to mean all orthostatic intolerance. POTS is a nice easy acronym, and more people have heard of it - but it's still wrong. Using the proper terminology is extremely relevant when dealing with practitioners or agencies, especially if nitpicking assholes are involved who'd love an excuse to dismiss and ridicule patients :rolleyes:

    I'm not sure there's a smoking gun, but there is a large amount of compelling circumstantial evidence. If using legal thresholds, the evidence of exercise being more harmful than helpful is certainly "more likely than not", and I think it's even "beyond a reasonable doubt." It's not 100% proven, but then again I'd argue that nothing is, neither in the legal world nor in the medical world.
     
  15. Matt (@DondochakkaB)

    Matt (@DondochakkaB) Established Member (Voting Rights)

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    I think Jonathan Edwards is right here to focus on what we do not know. To demonstrate the harm of GET beyond patient reports would require carefully put together long term data. I also think some of the harm is psychological and not objectively measurable.

    According to Geraghty's data, the most promising symptom management program is Pacing with aspects of CBT, which of course, with research and development can score even higher. Whether that's strong enough data to push for Pacing I'm not qualified to determine. But it definitely has patient approval.

    Tilt table testing for OI is a good move. Information on good stretching exercises will help as muscles can get really bad if not maintained in some small way.
     
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  16. guest001

    guest001 Guest

    Or even, dare I say it, few of them had ME at all... so it's all academic!
     
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  17. lansbergen

    lansbergen Senior Member (Voting Rights)

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    Yep
     
  18. lansbergen

    lansbergen Senior Member (Voting Rights)

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    Ach, you had that too. I still have it but it is much milder now.
     
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  19. lansbergen

    lansbergen Senior Member (Voting Rights)

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    Yep
     
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  20. MeSci

    MeSci Senior Member (Voting Rights)

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    Here it is: http://www.sciencedirect.com/science/article/pii/S088915911730051X?via=ihub
     

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