Jonathan Edwards
Senior Member (Voting Rights)
Well here it is folks. Get posting.
I think they need to be referable to a clinic with a physician in a standard medical speciality (not rehab) for an assessment of their problems with a waiting time of around 2-3 weeks on average.
Edit: a current suggestion is below and in Word:
Suggested Referral Service Provision Format for ME/CFS
The following is a draft outline for a referral service format for ME/CFS in the UK based on current evidence relating to patient needs, prepared by members of Science For ME.
Key structural elements:
1. A service primarily managed and delivered by a hospital-based physician.
2. Dedicated clinical nurse specialist 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 ideally of ~ 2-4 weeks, with an option for domiciliary assessment for severe cases.
4. Regular follow-up by a physician, or where no significant medical change is expected, a nurse specialist, 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. Services should be clinic based, via online/telephone communication or domiciliary, as needed. Domiciliary care should include services provided for other seriously disabling diseases such as multiple sclerosis (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. Taking advantage of opportunities to site regional centres alongside research institutions with an interest in ME/CFS.
8. Provision of realistic but sympathetic advice on prognosis, and advice on self-management based on individual patient experience. Provision of advice and assistance in relation to education and employment and care needs and disability benefit applications.
9. Provision of approved general symptomatic pharmacological treatments. No provision of off-label pharmacological treatments, or non-pharmacological treatments without a reliable evidence base, unless as part of well-designed controlled trials.
10. Emphasis on support through validation and shared experience, with access to professional emotional/psychological support (i.e. well-informed counselling) if needed. Provision of information about good quality charity resources,
11. Access to other health professionals such as an occupational therapist or dietitian where needed for home adaptation, dietary advice etc.
12. 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
In broad terms, the suggestion is to build on the service model prior to 2003, often delivered by infection and immunity physicians, prior to the misguided introduction of a rehabilitation therapy model based on a discredited theory of deconditioning. As the BACME Guide to Therapy demonstrates, there are no evidenced-based therapies, and, in effect, no longer any therapies to recommend, beyond general advice on managing exertion, that can be provided by any healthcare professional. The physician-led model allows long-term integrated care across all levels of severity, which a rehabilitation-based model does not. The recent expansion of nurse specialist roles can also be taken advantage of.
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 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 will be considerable. It also needs to be recognised that milder or moderate cases may rapidly become more severely disabled; self-referral for earlier and more regular appointments must be available.
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 this 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 specialist, who may also be able to take on a closer role in emotional 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 several conditions that 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, 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 not service isolation. If ME/CFS is genuinely accepted as a real medical problem, which it must be, it needs to be treated as such, rather than as a ‘functional’ issue suited to community-based ‘multidisciplinary rehabilitation’. A central need for people with ME/CFS is validation; a separate, ringfenced, ME/CFS service is the most powerful invalidation of all.
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, including general practitioners and district nurses, but for severe cases nurse specialists with experience in ME/CFS problems, acting in liaison with a specialist physician, are in a better position to provide optimal care.
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 can 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 energy management but it is 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 incremental activity approach 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 experience of the individual, and not on speculative theorising on energy metabolism, or autonomic or adrenal function (nor on discredited theories of deconditioning of psychological origin). People with ME/CFS find the concept of post-exertional malaise useful but there is wide variation in the experience of this. 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. People with ME/CFS are not expected to show improvement in response to care provision in the short term. Moreover, in the absence of evidence-based interventions there are 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. (Drugs already prescribed should not be withdrawn without the patient’s consent and very careful assessment.) 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.)
I think they need to be referable to a clinic with a physician in a standard medical speciality (not rehab) for an assessment of their problems with a waiting time of around 2-3 weeks on average.
Edit: a current suggestion is below and in Word:
Suggested Referral Service Provision Format for ME/CFS
The following is a draft outline for a referral service format for ME/CFS in the UK based on current evidence relating to patient needs, prepared by members of Science For ME.
Key structural elements:
1. A service primarily managed and delivered by a hospital-based physician.
2. Dedicated clinical nurse specialist 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 ideally of ~ 2-4 weeks, with an option for domiciliary assessment for severe cases.
4. Regular follow-up by a physician, or where no significant medical change is expected, a nurse specialist, 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. Services should be clinic based, via online/telephone communication or domiciliary, as needed. Domiciliary care should include services provided for other seriously disabling diseases such as multiple sclerosis (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. Taking advantage of opportunities to site regional centres alongside research institutions with an interest in ME/CFS.
8. Provision of realistic but sympathetic advice on prognosis, and advice on self-management based on individual patient experience. Provision of advice and assistance in relation to education and employment and care needs and disability benefit applications.
9. Provision of approved general symptomatic pharmacological treatments. No provision of off-label pharmacological treatments, or non-pharmacological treatments without a reliable evidence base, unless as part of well-designed controlled trials.
10. Emphasis on support through validation and shared experience, with access to professional emotional/psychological support (i.e. well-informed counselling) if needed. Provision of information about good quality charity resources,
11. Access to other health professionals such as an occupational therapist or dietitian where needed for home adaptation, dietary advice etc.
12. 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
In broad terms, the suggestion is to build on the service model prior to 2003, often delivered by infection and immunity physicians, prior to the misguided introduction of a rehabilitation therapy model based on a discredited theory of deconditioning. As the BACME Guide to Therapy demonstrates, there are no evidenced-based therapies, and, in effect, no longer any therapies to recommend, beyond general advice on managing exertion, that can be provided by any healthcare professional. The physician-led model allows long-term integrated care across all levels of severity, which a rehabilitation-based model does not. The recent expansion of nurse specialist roles can also be taken advantage of.
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 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 will be considerable. It also needs to be recognised that milder or moderate cases may rapidly become more severely disabled; self-referral for earlier and more regular appointments must be available.
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 this 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 specialist, who may also be able to take on a closer role in emotional 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 several conditions that 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, 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 not service isolation. If ME/CFS is genuinely accepted as a real medical problem, which it must be, it needs to be treated as such, rather than as a ‘functional’ issue suited to community-based ‘multidisciplinary rehabilitation’. A central need for people with ME/CFS is validation; a separate, ringfenced, ME/CFS service is the most powerful invalidation of all.
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, including general practitioners and district nurses, but for severe cases nurse specialists with experience in ME/CFS problems, acting in liaison with a specialist physician, are in a better position to provide optimal care.
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 can 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 energy management but it is 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 incremental activity approach 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 experience of the individual, and not on speculative theorising on energy metabolism, or autonomic or adrenal function (nor on discredited theories of deconditioning of psychological origin). People with ME/CFS find the concept of post-exertional malaise useful but there is wide variation in the experience of this. 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. People with ME/CFS are not expected to show improvement in response to care provision in the short term. Moreover, in the absence of evidence-based interventions there are 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. (Drugs already prescribed should not be withdrawn without the patient’s consent and very careful assessment.) 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.)
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