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

John Mac

John Mac

Senior Member (Voting Rights)
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)

Abstract
Designed by a group of ME/CFS researchers and health professionals, the European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE) has received funding from the European Cooperation is Science and Technology (COST) (https://www.cost.eu/cost-actions/what-are-cost-actions/ ) - COST action 15111 - from 2016 to 2020.

The main goal of the Cost Action was to assess the existing fragmented knowledge and experience on health care delivery for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in European countries, and to enhance coordinated research and health care provision in this field.

We report on the recommendations for clinical diagnosis, heath services and care for people with ME/CFS in Europe, as prepared by the group of clinicians and researchers from 22 countries and 55 European health professionals and researchers, who have been informed by people with ME/CFS (https://www.cost.eu/actions/CA15111/#tabs|Name:overview).

Subject Areas
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; diagnosis; Health services; clinical care
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https://www.preprints.org/manuscript/202009.0688/v1
 
People with ME/CFS may easily get trapped into a situation where while unable to carry on or start meaningful work- or school-related activities, they receive very little guidance from the health sector or support from social services – where they feel disbelieved and neglected, and are often failed by the welfare system. Their disability contributes to social isolation, which add to their burden, and limits their chances of recovery or re-integration in society.
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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.
 
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.
 
strategist said:
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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I'm not sure "activity management" implies GET here, there's no mention of graded activity or exercise. This is what the paper suggests:
Support measures
•Pacing and activity management (to work with the energy envelope (Jason et al., 2008a)
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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:
Periods of rest and “pacing” are important components of all management strategies for ME/CFS patients. Physicians should advice people with ME/CFS on the role of adequate rest, how to introduce breaks into their daily routine, and their frequency and length which may be appropriate for each patient. Excessive rest may be counterproductive, except in the initial stages of disease, in the very severe or in cases of acute exacerbation; so it is important to introduce ‘low level’ physical and cognitive activities, according to the severity of symptoms.
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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
 
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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
 
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.
 
Braganca said:
I don’t know why Candadian criteria considered absurd. Anyone know? It works better for me than ICC.
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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.
 
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.
 
Good to see that if Fukuda are to be used, it is recommended they are used in this way:
The CDC-1994/Fukuda et al. criteria [27] may also be used as a screening tool for diagnosis in clinical practice, but we recommend that only cases with post-exertional malaise (PEM) (which is optional in that definition), are included for diagnosis (Box 3)
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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:


Orientation and cognition; patients are oriented, but they may show signs of slow thinking, poor attention and short memory and be lost for words; long consultations may elicit increasing cognitive and physical difficulties as the patient tires; on the other hand, some patients may show signs of anxiety and “wired-tiredness”, where they are restless in spite of being very tired physically and mentally. Emotional responses may be triggered as patients go through their histories and common difficulties experienced with their symptoms and lack of validation of their diagnosis and degree of disability, which are often not obvious to the untrained observer. In general, patients are highly motivated and willing to do whatever may be needed to improve their symptoms. However, secondary anxiety and depressed mood may be observed, and lack of motivation or despondency should raise the possibility of associated low mood.
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