I have been jotting. Likely lots of things for people to disagree with but this is what I ended up with so far:
Suggested Service Provision Format for ME/CF
The following is a draft outline for a service format for ME/CFS in the UK based on current evidence relating to patient needs.
Key structural elements:
1. A service primarily managed and delivered by a hospital-based physician.
2. Dedicated nurse practitioner support for ongoing practical care.
3. Initial assessment in a clinic within an established specialty department such as neurology or rheumatology, with average waiting times of ~2-3 weeks, with an option for domiciliary assessment for severe cases.
4. Both domiciliary and clinic service for further management, as needed. Domiciliary care to include that provided for other seriously disabling diseases such as motor neuron disease (sight and hearing aids, dentistry etc.)
5. Facilities for making available ME/CFS-suitable Inpatient beds (single rooms with reduced environmental stimuli) for intercurrent medical care in all hospitals with clinic bases.
6. Dedicated regional hospital units for crisis care for very severe ME/CFS cases, under a physician with a special interest, with provision of ME/CFS-suitable inpatient beds in association with nutritional units for feeding support.
7. Regular follow-up by a physician, or where no significant medical change is expected, a nurse practitioner, for assessment of ongoing ME/CFS status and detection of other coincident conditions. Intervals may range from, initially, a few weeks, to six monthly or annual review, as judged appropriate by patient and health care professionals.
8. Taking advantage of opportunities to site regional centres alongside research institutions with an interest in ME/CFS.
9. Provision of realistic but sympathetic advice on prognosis, and advice on self-management based on the collective experience of other patients. Provision of advice and assistance in relation to education and employment needs.
10. No provision of (off-label) pharmacological or non-pharmacological treatments without a reliable evidence base, unless as part of well-designed controlled trials.
11. Emphasis on support through validation and shared experience, with access to professional emotional/psychological support (ie well informed counselling) if needed. Provision of information about good quality charity resources,
12. Access to other health professionals such as an occupational therapist or dietitian where needed for home adaptation, dietary advice etc.
13. Facilities for consultation online (Telehealth) for situations where people cannot readily access either clinics or domiciliary services.
14. Provision of long-term care facilities for the very disabled who have no support for living independently at home, on an equal basis to provision for other disabling musculoskeletal and neurological disorders.
Further Background and Detail
Provision of care for a person with ME/CFS requires direct involvement of a physician with expertise in the field primarily to ensure that the diagnosis is valid, that uncommon differential diagnoses have been excluded and that there is ongoing review of symptoms because of the difficulties in separating features of ME/CFS from other intercurrent problems. For some people with ME/CFS assessment may be straightforward and the need for further medical input limited but in other cases the need for ongoing medical supervision may be considerable.
Physicians leading ME/CFS services need to be constantly updated on developments in related disciplines and will benefit from ongoing contact with a range of other clinical problems that can inform ME/CFS care. Ongoing education of that sort can only be available in a hospital setting. This is understood in relation to the management of other disabling diseases and should apply equally to ME/CFS.
Beyond diagnostic assessment, a lot of practical supportive care can be provided by an allied health professional such as a nurse practitioner, who may also be able to take on a closer and more regular role in support. Nothing in the management of ME/CFS per se is at present based on a theoretical framework requiring specialised training in background physiology or psychology so there is no need for involvement of a wider range of professionals in core support. Where the illness has a major impact on mood, access to a professional with counselling/psychology skills should be available as for other disabling conditions.
A major problem with care for ME/CFS has been that it has not been accepted as falling under any particular medical specialty. What evidence we have suggests that the problem is primarily neurological, with an infective trigger in at least some cases. Services in the past were often under infectious disease physicians. However, in practical care terms, ME/CFS care may have more in common with long term disabling neurological and rheumatological diseases. Neurology seems most relevant but rheumatology has accommodated a number of conditions the do not easily fall into a specialty category, such as chronic pain and muscle disease, especially where there may be immunological features.
The key need is for ME/CFS to be included in the standard care model for all other disabling conditions, within a specialty with physicians with the relevant detailed knowledge, especially as there is such a desperate need to learn more about the biology of the condition in order to devise meaningful treatments. If ME/CFS care is divorced from standard medical services, difficult diagnostic decisions will be missed and no progress will be made towards effective care. Dedicated ME/CFS pathways will be appropriate but that should not lead to service isolation.
ME/CFS raises a specific need for domiciliary care that is perhaps unique in that people with ME/CFS find hospital attendance not only difficult, but also posing a risk for an extended relapse of symptoms due to the exertion involved. It may be possible to cover some of the needs for assessment and care at home through primary care staff such as district nurses but for severe cases nurse practitioners with special experience in ME/CFS problems are in a better position to provide optimal care, if acting in liaison with a specialist physician.
Admission to hospital for inpatient care should be minimised wherever possible but people with ME/CFS will need admission for intercurrent problems from time to time. It is essential that hospitals are able to allocate beds that provide, or can be adapted to provide, protection from environmental stimuli that may precipitate extended relapse of symptoms. This should apply to all hospitals with ME/CFS-serving clinic bases and all general acute hospitals.
A relatively small number of people with very severe ME/CFS will require admission for complications of the illness itself and in particular nutritional failure. A limited number of regional or supra-regional units are needed to provide ME/CFS suitable beds in conjunction with expert nutritional support facilities. This is of the highest priority in view of the continuing reports of avoidable deaths from nutritional failure. Where possible such units should take advantage of opportunities to interact with research teams able to conduct both basic biological and translational clinical studies in ME/CFS.
The recognition by the 2021 NICE Guideline Committee of the lack of supportive evidence for the prior deconditioning model for ME/CFS and therapies based on that model has left health professionals without any clear guidance on care delivery. The NG206 Guideline recommended personal care plans involving activity management but it is very unclear what evidence base there is for this, if any, and exactly how it should be implemented. It has become clear that there are differences of view in how to respond, either by using a modification of the graded exercise approach often called pacing up or by simply emphasising the need to recognise limitations on activity levels that can be tolerated without worsening of symptoms. In our view it is essential that advice should be based purely on the collective experience of other people with ME/CFS and not on speculative theorising on energy metabolism, or autonomic or adrenal function. Simple advice on judging activity limits based on personal experience is all that is justified. At present there is no good evidence for electronic devices or detailed diaries being of value.
ME/CFS follows an extended course over many months and most often years. People with ME/CFS are not expected to show improvement in response to care provision in the short term. There are therefore no ‘goals of therapy’ to be set and no relevant assessments of ‘treatment success’ such as patient reported outcome measures. The primary index of a successful service is the degree to which people with ME/CFS feel adequately supported and validated.
An important part of care will be provision of a realistic prognosis and practical information relating to education, employment, financial help and other non-medical support.
NICE Guideline NG206 summarises general medical measures for symptomatic relief, such as analgesia. Beyond these measures based on licensed general indications off-label prescribing should not be part of service provision unless as part of carefully planned controlled studies capable of providing useful information about wider use. For most drugs and procedures commonly used off-label for ME/CFS we have good reason to think any benefit is inconsistent and limited at best and probably non-existent (most are based on implausible theories without any reliable efficacy data). The overall chances of off-label prescribing causing harm are significantly greater than for benefit. Identification of drugs and interventions that may be of genuine benefit is a priority but in recent times calls for proposals for plausible candidate treatments have yielded almost nothing. (The only candidate specifically identified was low dose naltrexone, which is now subject to three trials that should report fairly soon.)
