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EUROPEAN ME NETWORK (EUROMENE) Expert Consensus on the Diagnosis, Service Provision and Care of People with ME/CFS in Europe, 2020, Nacul et al.

Discussion in 'General ME/CFS News' started by John Mac, Sep 28, 2020.

  1. John Mac

    John Mac Senior Member (Voting Rights)

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    Not sure which forum this should go in.

    How to cite: Nacul, L.; Authier, J.; Scheibenbogen, C.; Lorusso, L.; Helland, I.; Alegre Martin, J.; Sirbu, C.A.; Mengshoel, A.M.; Polo, O.; Behrends, U.; Nielsen, H.; Grabowski, P.; Sekulic, S.; Sepulveda., N.; Esteves Lopez, F.; Zalewsk, P.; Pheby, D.; Castro-Marrero, J.; Sakkas, G.; Bergquist, J.; Capelli, E.; Brandslund, I.; Cullinan, J.; Krumina, A.; Murovska, M.; Vermuelen, R.; Lacerda, E. EUROPEAN ME NETWORK (EUROMENE)

    https://www.preprints.org/manuscript/202009.0688/v1
     
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  2. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    This reminds me: I think the forum could do with a sub-forum for this sort of general research, to cover clinical research, epidemiological studies, studies pertinent to care, etc.
     
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  3. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    'Epidemiological, clinical, and patient-orientated research' would cover a lot of bases for papers that don't fit into the 'Biomedical research' sub-forum.
     
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  4. strategist

    strategist Senior Member (Voting Rights)

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  5. rvallee

    rvallee Senior Member (Voting Rights)

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    Looking good overall. I think the management is a bit understated. Unless I just missed it, it neglects most of the economic aspect of not being able to work. It's fine to self-manage but pwME simply can't do that without support, no chronically ill person can survive on hope alone. Disability income is not a luxury here, it is a necessity. Technically it should be the norm to be on disability with ME. Which, yes, is a bummer and a huge strain on disability systems but then don't freaking implement ideological belief systems based on fairy tales and actually work to solve problems instead of letting them grow out of control. Your broke it you pay it.

    One of the main forms of support is immediate, it's at home. People need help and understanding and that requires lifting the discrimination and contempt within medical culture, the source for the lack of work-place accommodations and at-home support. Of course not something a working group can do or propose to solve by themselves but the impact of discrimination, leading to near complete ostracization in most cases, needs to be stated as being the main factor in the horribly low quality of life and life expectancy. The most severe cases require nursing care. Again, very expensive. But, again, don't let problems grow out of control for decades without making any progress.
     
  6. strategist

    strategist Senior Member (Voting Rights)

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    The management section recommends activity management, which is just another name for GET.

    Overall the impression is good but one can see the influence of people with an interest in ME/CFS services delivering GET.

    It's ironic that there's essentially no evidence in support of any of the mentioned treatments, and the evidence for GET is actually negative if we don't allow cherry-picking of results via outcome switching or pretending that behavioural therapies don't need to control for biased self-reporting.
     
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  7. cassava7

    cassava7 Senior Member (Voting Rights)

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    I'm not sure "activity management" implies GET here, there's no mention of graded activity or exercise. This is what the paper suggests:
    It would be counter-intuitive to offer GET while recommending to stay within the energy envelope, since GET consistently pushes one to exceed their energy limits.

    But on the other hand, I'm not sure how this part (bolding mine) could be interpreted from a physician's point of view:
    Hopefully a physician can understand that:
    - this may not be possible and they should not force the patient to do it (the text does a decent job at pointing this out, in my opinion)
    - the level of intensity of these activities *must* stay within the limits of the energy envelope *and* take account that they will take away energy from other essential priorities
     
    Last edited: Sep 28, 2020
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  8. John Mac

    John Mac Senior Member (Voting Rights)

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  9. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    This has not appeared yet. I suspect it must still be in peer-review.
     
  10. Andy

    Andy Committee Member (& Outreach when energy allows)

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    diwa, Hutan, Michelle and 6 others like this.

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