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

This contains the sentence I’m most concerned about in the document:
The goal of the management/treatment programme is to treat the most distressing symptoms (sleep disturbance, pain, orthostatic intolerance, or others) and empower the patients to be in control of symptoms and the disease by encouraging them to trust their own experiences and enhance their awareness of the activities and environments in which they can cope without exacerbating symptoms, and “pace” themselves accordingly. The program should aim at optimizing the patient’s ability to maintain function in everyday activities, being as active as possible within their boundaries and then gently extending those boundaries [2]. This may be challenging, especially in the more severely affected who may be able to tolerate only very low levels of activity; those with less severe forms of disease are likely to “overdo” and may have frequent exacerbations of symptoms (“crashes”) as a consequence.
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I think it should say something like “testing to see if the boundaries can be extended”: there is certainly no guarantee they can be. Fortunately, I think this might be the only such wording in the document, with plenty of talk of pacing and the like.
 
Not convinced CBT needed to be mentioned
Recent studies suggest that there may be a role for cognitive behaviour therapy (CBT) in the management of ME/CFS. It may have long-term benefits in chronic fatigue [67], but there is little evidence of this, and it needs to be used with considerable care to avoid distress [68]. It should be appreciated that it is a supportive therapy and not curative [69].

67. Andersson, G.; Rozental, A.; Shafran, R.; Carlbring, P. Long-term effects of internet-supported cognitive behaviour therapy. Expert Rev. Neurother. 2018, 18, 21–28. [Google Scholar] [CrossRef]

68. Geraghty, K.J.; Blease, C. Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent. J. Health Psychol. 2018, 23, 127–138. [Google Scholar] [CrossRef]

69. Vink, M.; Vink-Niese, A. The draft updated NICE guidance for ME/CFS highlights the unreliability of subjective outcome measures in non-blinded trials. J. Health Psychol. 2021, 1359105321990810. [Google Scholar] [CrossRef]
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Ref 67 isn’t a CFS-specific paper. The PACE trial didn’t find long-term benefits from CBT even when assessed by questionnaires.
 
The doctor-patient partnership, informed choices and risk minimisation are essential components of care. Partnership between patient and health care providers should be based on trust, and consideration of their interactions as encounters between two experts with different, but complementary backgrounds (the patient and the healthcare provider), who recognise that knowledge about the disease and its management is incomplete.
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Physicians may consider starting symptomatic treatment at a lower than usual dose, due to frequent medication sensitivities in this population. The dose may be carefully increased. Treatment and repeat prescription may be continued in primary care, depending on the patient’s preference and local circumstances.
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From A professional view on symptom management and relief
Dr. L. Lorusso (personal communication)
(part of Box 11)
“Periods of rest and “pacing” are important components of all management strategies for ME/CFS patients. Physicians should advise 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 cases, or in cases of acute exacerbation; so it is important to introduce ‘low level’ physical and cognitive activities within the patient’s capacity, according to the severity of symptoms.
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Excessive rest is by definition excessive. However, I’m not sure how common it really is.
 
Dolphin said:
From A professional view on symptom management and relief
Dr. L. Lorusso (personal communication)
(part of Box 11)

Excessive rest is by definition excessive. However, I’m not sure how common it really is.
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Many of us do this (rest/activity balance) intuitively, by necessity. In general we know our limits, we know when we go beyond our capacities and we know when we have gone too far. It is hard to fathom that in 2023 we are still here, reading scientific papers about activity management, CBT being potentially useful and managing ‘the most distressful symptoms to. ’.

I find this distressing that we are still here and that the best that medicine can do is working on self-management
 
Examples of instruments that may be used in monitoring patients include hand grip strength measurement, standing test, serum CK, severity assessment using specific instruments or scales (such as analogue scales for pain, fatigue, sleep, and other symptoms), and specific questionnaires for assessing symptom severity.
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A national champion for each country or regions within countries would be highly desirable, especially in places with no or very scarce provision of services for ME/CFS.
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As long as they are good. The English system had clinical champions like the biopsychosocial ideologue, psychiatrist Peter White.
 
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There is no suggestion that people with ME/CFS require more social support than people with other chronic diseases, and we are most certainly not implying that the disease is primarily psychological in nature. We are, though, very well aware that people with other chronic diseases, such as for example diabetes or multiple sclerosis, do not have the same problems of disbelief and lack of legitimisation experienced by people with ME/CFS. All people with chronic diseases need, and should be entitled to, social support, but few experience the same difficulty accessing it as people with ME/CFS.
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Work, life, and education may be disrupted, with substantial economic and personal impacts on individuals and their families; lack of understanding and support, and often stigma, adding to the burden of physical suffering from symptoms. It is extremely important to prioritize research and education of health professionals and others in society, so as to address the scientific and societal poor understanding of the scale of the problem faced.
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Box 13. Multi-sectoral approach to ME/CFS.
Specific societal sectors
Higher education:
  • Development of training for under-graduates and post-graduates, including training for primary care staff and occupational physicians
Educational sector:
  • Development of materials for teachers and education staff, as well as for pupils with ME/CFS and their parents
Work and pensions:
  • Development of adequate instruments for assessing disability and flexibility in workplaces, particularly after returning to work, to minimise the risk of relapse
Health sector and public health:
  • Adoption of guidelines, flexibility on the use of medications for management of symptoms
  • Public health strategy for raising awareness about stigma, importance of care and education to avoid aggravation of symptoms and/or relapse
  • ME/CFS services development and evaluation
Funding agencies and pharmaceutical industry:
  • Research funding and support for well-designed clinical trials
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There is little talk of the need for physiotherapists/physical therapists in this document which I agree with.
I think you are asking for problems if you have a service involving physiotherapists/physical therapists.

Here is a tweet today that I think shows the typical attitude of physiotherapists/physical therapist to exercise
Look. I’m a physio. I’m an exercise evangelist. Exercise is my education, training, hobby, and personality. I want people to exercise.
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I think physios can have a limited role in helping pwME who are bedbound with things like safe and energy efficient ways to move in bed etc. And those educated by people like the Workwell group and Physios for ME can help potentially with establishing pacing and energy efficient ways to do necessary or desired activities and using heart rate and step monitoring etc.
 
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