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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
     
    Dolphin, Hutan, MSEsperanza and 9 others like this.
  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.
     
    alktipping, MSEsperanza, Milo and 7 others like this.
  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.
     
  4. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    alktipping, Dolphin, Hutan and 3 others like this.
  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.
     
    bobbler, BrightCandle, sebaaa and 9 others like this.
  6. Hoopoe

    Hoopoe 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.
     
    BrightCandle, Hutan, Trish and 9 others like this.
  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
    bobbler, Dolphin, Milo and 8 others like this.
  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

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  11. Dolphin

    Dolphin Senior Member (Voting Rights)

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    https://us02web.zoom.us/webinar/register/WN_5_aAJx7XRJiUxctLTroDGw

    [​IMG]
    Webinar Registration
    Facebook Twitter LinkedIn Microsoft (Outlook)

    Topic
    Current evidence on diagnosis and management of ME/CFS according to NICE and EUROMENE: Are all guidelines the same?

    Description

    Webinar med Luis Nacul.

    Nacul har lang klinisk erfaring med ME, og har lang fartstid som forsker. Han har mange publikasjoner bak seg. Han var medlem av komiteen bak de nye NICE guidelines, og har vært tilknyttet den britiske biobanken for ME, og er professor ved London School of Hygiene and Tropical medicine, og er medical director and research director of the Complex Chronic Diseases Program (CCDP) ved University of British Columbia i Canada.
    Nacul har også vært medlem av Euromene, og er med forfatter for de retninglinjene for ME som denne gruppen har publisert.
    Time


    Oct 13, 2022 02:00 PM in Oslo
     
    ukxmrv likes this.
  12. RedFox

    RedFox Senior Member (Voting Rights)

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    This paper is full of solid recommendations. One thing that stood out to me was their recommendation that there should be 2-4 ME specialists per 1 million population. This sounds low, but that would be equivalent to 660-1320 ME specialists in America or 134-268 in the UK. There would be at least 24 just in my home state of Pennsylvania! If we had that many doctors with formal training in ME and who followed the formal guidelines, that'd be amazing!

    Imagine the difference. When I saw a Neurologist for my ME, and told him I wanted to see an ME specialist, he told me to Google it. I already tried that. I cannot find anyone in my area who's an ME specialist and takes my insurance (which over 90% of doctors accept--Medicare).

    If this recommendation was followed, he could have referred me to an ME specialist nearby.
     
    bobbler, alktipping, Amw66 and 5 others like this.
  13. Braganca

    Braganca Senior Member (Voting Rights)

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    Dolphin, Peter Trewhitt and RedFox like this.
  14. Milo

    Milo Senior Member (Voting Rights)

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    I think that there are different groups out there, some promoting the ICC as the purest of the pure ME according to them. The ICC does exclude some patients (I am one of them). To be honest, until we have a diagnostic test and biomarkers that can discriminate severity and subgroups, there will always be tensions about what case definition to use. I am very sorry that a researcher (I don't know him) is at the receiving hand of such tension. It reminds me of the times of XMRV, when if you tested negative for it, then you didn't have ME.
     
  15. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Overall I liked this, though I think I prefer other documents to highlight to doctors to educate them. But it does have the advantage of having some “status” given the number of authors who co-authored this and it’s from a network.

    I’m now going to post random extracts for what they are worth.
     
  16. Dolphin

    Dolphin Senior Member (Voting Rights)

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    The incidence rate is ridiculously low, equivalent to 15 cases per million people per year. It doesn’t tally with the prevalence figures in the same sentence.
     
  17. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Good to see that if Fukuda are to be used, it is recommended they are used in this way:
     
  18. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Good to see recognition that a patient telling their story might be triggering for them but may not give a good overall picture of their mental health:


     
  19. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Good to see talk of what might be observed during a physical examination which sometimes doesn’t seem to get discussed (or perhaps I’m forgetting discussion of it?).
     
  20. Dolphin

    Dolphin Senior Member (Voting Rights)

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    • Don’t recall hypersalivation being mentioned in the context of ME/CFS before.
     

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