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

  • In the more severely affected, signs of frailty may be evident; patients may be virtually bed-bound, sit in a wheelchair, have a pale and puffy face, have cold extremities, and not be able to remain or feel very uncomfortable in the upright position for longer than a few seconds or minutes. There is a general sense of weakness and lack of stamina, and short periods of break during clinical assessment may be required as the patient becomes visibly tired and shows signs of increasing cognitive difficulty. Symmetrical reduction in limb muscle strength may be observed on formal neurological examination, and the hand grip manometer will usually show reduced power, with decreasing values on repeated measurements.
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    Good to see this recognised.
 
Since fatigue is a common complaint in daily life and in association with a range of medical problems, it is important to note that most people with ongoing fatigue do not have ME/CFS but rather have symptoms that are caused by other conditions, emotional well-being, or life-style-factors. The presence of PEM, however, raises the level of suspicion, as this is quite typical, though not specific of ME/CFS.
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Action is prompted by clinical suspicion and red flags, such as unintentional weight loss, prolonged fever ≥ 38 °C, persistently elevated inflammatory markers, significant abnormalities in physical examination, or suicidal ideation.
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Higher than normal temperature was an optional criterion in the Holmes et al. (1988) criteria. It is one of the few items in all the sets of criteria I don’t have which led me to question it [i.e. whether it should have been in the Holmes criteria].
 
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Diagnosis of ME/CFS in children is especially challenging for two main reasons: First, younger children may not report symptoms accurately and might assume fatigue as normal, when not remembering the experience of full health. Second, there are differences in how children perceive and report symptoms of ill health, and proxy reporting by parents may not always accurately reflect children’s experience.
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Primary care professionals have an important role in the initial diagnosis, including consideration of alternative conditions leading to similar symptoms. It is important to note that many symptoms commonly reported in ME/CFS have a low disease-specificity and may occur in a number of diseases. Acute infectious onset and PEM should always prompt to consider ME/CFS. Although diagnostic confirmation may require a 3- to 6-month period, it is important to contemplate the diagnosis at earlier stages, so that disease management may start, and diagnosis and treatment of alternative diseases are not delayed (See Box 7).
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Patients with ME/CFS tend to be multi-symptomatic and often have long clinical histories, which may include various failed attempts to obtain a diagnosis and treatment. Multiple previous investigations are not uncommon; however, often, symptoms presented are discarded by clinicians as “exaggerated” or “imagined”, related to excessive work or studies or as mood-related. Such a scenario is to be avoided through early recognition and diagnosis, which are reliant on better knowledge of the disease and education of doctors and other health professionals.
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Education of patients in advance of, during, and following consultation may be useful, and reliable educational materials should be recommended, e.g., booklets, videos, or other online information materials. These should cover concepts and practical recommendations for “pacing” (pacing is a self-management tool to implement a strategy designed to help people live within their energy envelope, minimise PEM, and improve quality of life [52]) with adequate rest periods or breaks in activity, sleep hygiene, and pain management strategies. Both mental and physical activities should be taken in such a way to avoid over-exertion, which may trigger post-exertional aggravation of symptoms or “crashes”, and as a key strategy to optimise chances of recovery. A main goal of educational activities is to empower the patient for self-management and to be in control of their disease and healing process.
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I think some but not all “sleep hygiene” techniques can be useful so it can depend what they are suggesting.
 
Based on what happened in the UK and Belgium, I wonder how often specialist services in practice help in all these areas:
3.8 Criteria for Referral for Specialist Services
Although with good education of primary care physicians, diagnosis and monitoring of people with ME/CFS in primary care are possible and desirable, and referral for specialist services may be indicated in some circumstances (Box 10), viz. for confirmation of diagnosis, when there is doubt; for cases who may benefit from a multi-disciplinary team with specific expertise, including drug treatments or care of those with severe or complicated disease; and for a range of service offerings, such as occupational therapy, supportive counselling, education on self-management and energy/activity management with “pacing”, social services, and advice on access to community support, e.g., for educational, occupational, and social matters, such as benefits (see below on secondary services).
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There are a few recommendations for telemedicine and home visits, which is good:
The more severely affected, including those who are house- or bedbound and severely disabled, should also be priority for referral, especially where appropriate home-visits or telemedicine are available, and, when necessary, for occupational, educational, and disability support.
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Not convinced by this sentence:
Note that some cases may be best served by referral to alternative services, especially where ME/CFS or Complex Chronic Diseases (CCD) Services are not well developed, such as to pain management, rehabilitation, neurology, psychiatry, and rheumatology services.
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Good to see it mentioned explicitly help in such areas may be required (though in some ways obvious).
In general, irrespective of referral to secondary care, whenever possible, the primary care team should continue to take responsibility for the long-term care and monitoring of patients with ME/CFS and their treatment, whenever possible in partnership with the specialist team. This includes facilitating the provision of emotional, social care, and occupational health support, and medical advice to teachers, employers, and caregivers, in response to the specific needs of patients. This could involve access to resources in the community, such as to physiotherapy, occupational therapy, dietician, or home visits by the primary care team (especially for the more severely affected), e.g., by district nurses. Support for self-management, education, and work activities may require further contacts with the patients and their carers/families, as well as with educators and employers. Here, online educational materials may be of value, as well as group educational activities for patients. Organization of care for people with ME/CFS and in particular the severely affected may be complex and requires communication by primary care professionals with others from various disciplines.
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This is mentioned more than once as I recall:
It is important to consider that patients with ME/CFS may be more sensitive to a range of medications; this also needs to be considered when treating other conditions, having in mind also the possibility of drug interactions.
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Lists some questionnaires that could be used with patients:

Standard questionnaires include the UKMEB Symptoms Assessment Questionnaire (SAQ) [53], to aid diagnosis and the Participant Phenotyping Questionnaire (PPQ), for severity profiling [54] or the DePaul Symptom Questionnaire, allowing diagnosis and symptom severity profiling [6]. The Impact on function and quality of life may be measured by standard instruments, such as Rand-36 [55,56], some of which have been validated in many languages. The Epworth Sleepiness Scale [57] can be used to assess excess daytime sleepiness and as a screening for obstructive sleep apnoea. Other instruments may be used to screen for mood disorders, e.g., neuroQOL [58] or HADS [59] for depression and anxiety or GAD-7 [60] for anxiety. Fatigue severity may be measured by instruments validated for ME/CFS, e.g., the fatigue severity scale [61]; visual scales such as pain and fatigue analogue scales are simple to use [62,63]. The same applies to sleep disorders (e.g., the Pittsburgh Sleep Quality Index [64]), and autonomic symptoms (e.g., Compass 31 [65]. A diagnosis of fibromyalgia may be established with a good degree of confidence by the annotation of pain symptomatology in pictorial representation of the human body [66]. The same is true for the evaluation of hypermobility syndromes, using the Beighton criteria [35].
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In the absence of disease-specific treatment, key roles of the health professional include confirming the diagnosis, explaining to the patient the importance of avoiding overexertion and mental stress, “pacing”, and symptomatic medication as needed and appropriate for the patient. Regular monitoring is important, when progress should be assessed, and the possible development of new diagnoses and co-morbidities considered, as the management plan is reviewed.
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