Jonathan Edwards
Senior Member (Voting Rights)
An Open Letter to British Association for Clinicians in ME/CFS in Response to the Document ‘Guide to Therapy’, 2025
Jonathan CW Edwards, Professor in Connective Tissue Medicine*
Dr Michelle Bull, Chartered Physiotherapist
Joan Crawford, Chartered Counselling Psychologist
*Correspondence to JO.EDWARDS@UCL.AC.UK
Introduction
NICE Guideline NG206 (NICE, 2021) proposed a major change in management for ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). It judged that the use of therapist-delivered treatments such as graded exercise therapy (GET) and cognitive behavioural therapy was not based on reliable evidence and raised concerns of harm. Since that time, policy for service provision has been unclear. The British Association for Clinicians in ME/CFS (BACME) has recently released a document outlining their policy (BACME, 2025). This is a response to that document.
We are a group of health professionals with an interest in promoting effective research and optimum care for ME/CFS. We wish to express our concern that the recent BACME document has no evidence base and will perpetuate outdated practices. The theoretical biological basis for care described is historical speculation that has not been substantiated. The description of ‘active therapy’ is unsupported by cited evidence and so vague it is hard to identify what even is being proposed. The document reads as an attempt to justify continued commissioning of ungrounded multidisciplinary rehabilitation services, likely to hinder progress towards effective research and care.
The document is lengthy, much of it being general statements about ethos and strategies rather than specifics of therapy. There are many statements that are unfounded or inaccurate; we will focus on what we consider key problems.
Theoretical basis
The document claims to base therapeutic strategy on a ‘dysregulation model’ for ME/CFS. Inasmuch as physiology is mentioned, including the hypothalamic-pituitary-adrenal axis and the autonomic nervous system, these are areas where historical speculation has not been supported. Adrenal hormone levels in ME/CFS are normal in most studies. Although some symptoms are attributable to autonomic activity (e.g. tachycardia) objective evidence for autonomic malfunction was not confirmed (Kemp et al., 2019). As far as we know at present, the HPA axis and autonomic nervous systems may be responding normally in ME/CFS to unidentified stimuli. Recent genetic studies suggest that these may relate to neuronal or immune pathways, but we are nowhere near having information reliable enough to inform clinical care (Science for ME, 2025). The existing literature on ‘dysregulation’ in ME/CFS (see BACME, 2021) provides no coherent, testable model that explains symptoms like post-exertional malaise that could be applied to patient management.
The reality is that we have no useful understanding of the genesis of symptoms in ME/CFS. The document implies that somehow therapists can impart an understanding of the disease to patients. This is unacceptable overreach, amounting to deception. If the rationale is that explanation, even if bogus, will help patients to overcome and recover from their symptoms (via a BACME rehabilitation pathway - rehabilitation by definition the action of restoring someone to health or normal life) essentially ‘think themselves better’, we are back to the paternalistic psychologisation of ME/CFS that has dogged patients’ lives. Patients saw through this long ago and rightly resent it. They deserve hope and validation but for those whose condition persists, false hope from bogus theory and predictions of improvement is the worst of all. As Chu et al. (2021) have noted, suicide risk is raised in ME/CFS, and it is common to hear people with the illness quote false hope as a factor in suicidal thoughts.
Clinical Care
The document presents a care policy claimed to be NICE NG206 compliant. However, the text is so vague that it is unclear whether this is the case. More importantly, the policy is antithetical to the basic aim of NICE – to recommend care based on reliable evidence. The ME/CFS Guideline Committee (NICE, 2021) rejected graded exercise therapy (GET) and cognitive behavioural therapy as treatment for ME/CFS on the grounds that existing evidence indicated they were not cost effective. Ironically, the therapy recommended in the BACME document is closer to the ‘adaptive pacing’ arm of the PACE trial (White et al., 2011) which had even less evidence of efficacy. The difference may have been due to bias but the bottom line from PACE was that at 2 years no form of therapy showed any effect on outcome. It is not simply a case of lack of evidence. Many studies provide negative evidence (lack of efficacy) for the sort of approach detailed in the document, including goal setting and activity management (Pinxsterhuis et al., 2015; Wearden et al. 2006; Gaunt et al., 2024).
The BACME document never tells us quite what it is recommending but the implication is that it is some form of ‘pacing up’ or ‘increasing’ of activity. This is implied in a section with a table that justifies this as different from GET. Since we have no evidence for the efficacy or safety of such an approach it cannot be justified (see Wormgoor and Rodenburg, 2021). It is a serious concern that it is introduced in a covert way without any attempt at explanation or justification.
Pacing for ME/CFS, as defined by Goudsmidt, et al. (2012), is not an active therapy designed to produce progressive improvement but merely a means to improve coping with current illness - not to be confused with pacing as defined in the context of articular pain management (British Pain Society, 2021) as a means to increasing activity (or pacing up). The BACME document confuses the two.
The document also talks of goals of therapy, as if there is an assumption that achieving such goals is an indication of effectiveness of treatment. Patients will have personal goals in terms of a more active life but there is no reason to call these goals of therapy. They cannot be used as indicators of the usefulness of service provision.
The document gives no specifics but implies that ‘active therapy’ is to be offered in some limited time frame representing a ‘rehabilitation pathway’ with arbitrarily defined ‘phases’. For many with ME/CFS illness is lifelong and there is no reason to think that any such time frame or pathway applies. The document claims that access to ‘rehabilitation’ is a right but this makes no sense if what is needed is long term support.
Health Professional Involvement
An interesting feature of the document is the introduction of the concept of ‘interdisciplinary’ care, implying care that can be provided by any health professional because it does not rely on any specific expertise or training. The sensible rationale given is that an interdisciplinary approach allows care to be provided by fewer professionals with more continuity. Yet the document suggests that multidisciplinary teams (i.e. the opposite) are appropriate. Since we have no theoretical basis for care it is hard to see the justification. A physician is needed to provide accurate diagnosis, and to exclude uncommon differentials both initially and whenever new problems occur – entailing a long-term cmmitment. Severe cases require ongoing nursing support. An interdisciplinary approach need only involve a physician and a specialist nurse with knowledge of aids to support activities of daily living, with the ability, at any time, to call on a nutrition team or occupational therapy services for home adaptations for severe and very severe cases, or a psychologist/counsellor in the case of high levels of distress or suicidal thoughts.
There is talk of therapists bringing special skills but if these are relevant, they should be specified and evidence given. Otherwise, the interdisciplinary model makes no sense. Furthermore, pressure to 'engage' can be physically and cognitively overwhelming for patients. Expectations can push patients when they are too unwell, resulting in deterioration. An explicit statement of the need to understand this risk of harm is absent from the BACME document (see Kindlon, 2017; McPhee et al., 2019).
There is little reference to medical involvement. The advice on medication seems out of context. An annual review with a GP is suggested, but most GPs have little or no knowledge of the evidence base for ME/CFS. Annual review is important to ensure differential diagnoses or concurrent conditions are not missed. The clinical assessment needed does not fit into a routine 10 minute GP appointment.
General Approach
Much of the document is taken up with jargon about therapeutic ethos, apparently intended to sound empathetic. However, terms often appear to hide other motives. ‘Person-centred’ sounds good but appears to be used to justify avoiding specific general recommendations on the grounds of ‘tailoring’ therapy to individuals. If there is no reliable evidence of efficacy of a treatment modality, there is, by definition, even less reliable evidence for being able to tailor to individuals.
There is talk of a ‘collaborative approach’ (partnership, therapeutic alliance) – apparently intended as a concession to patient involvement. But it also carries an implication that patients have a responsibility to ‘engage’ or contribute. Without an an evidence base for what is on offer this is patronising and inappropriate.
There is lengthy advice on gathering personal information but without saying what for. This appears to amount to nothing more than an invasion of privacy. All the professional needs do is indicate what specific advice is on offer – which the document fails to cover. The section on co-morbidities is ill-informed and not based on reliable evidence. There is also lengthy discussion of assessment of activities, monitoring, planning patterns of activity. There is no evidence that this does anything other than add further burden for the patient.
None of the clinical policy has any valid connection to a ‘dysregulation model’. Dysregulation is usually used to mean an altered setting of homeostasis that would not be expected to respond simply to a change in activity pattern. The claims of autonomic ‘desensitisation’ have no basis in physiology. One attempt to damp down sympathetic activity with a drug appeared to make ME/CFS worse (Sulheim et al., 2014).
It might be argued that this analysis is overly critical in the context of real-life care and ‘clinical experience’. However, clinical experience has proven to be a very unreliable guide and in the case of ME/CFS shown to be unfounded. The benefit of the doubt might be allowed if it were not for the fact that almost all the literature in the field is methodologically very poor (Edwards, 2021). In an area where there are vocal champions of a wide range of theories and therapies, we have come across virtually nobody in the patient community extolling the benefits of the type of rehabilitation model described in the BACME Guide. Those commissioning services might do well to note the analysis of ‘Tony Copperfield’, G.P., in a recent commentary in the magazine Pulse (2025).
Summary
The document represents a failure to move forward to an evidence-based approach to an illness that is recognised as being long term for many people and, at present, of unknown mechanism. It appears to serve interests of BACME members rather than patients and from our perspective involves a deception that can only perpetuate the lack of trust ME/CFS patients have in the healthcare system. Until now policy has been unclear. This document makes it plain that nothing with any evidence base is on offer and that there is no justification for continuing to commission services based on the proposed model.
With limited resources, we believe the focus must be on medical care of severe and very severe cases, including nutrition and other life support, to reduce unnecessary deaths. The lack of a specialist medical 'home' with a research base has halted progress in knowledge and care in ME/CFS. This neglect cannot continue to be tolerated. Continuing current provision without medical leadership will not result in improved outcomes for patients. Filling the vacuum with well-intentioned, but ineffective 'therapies' is a poor use of resources and therapists’ time.
References
BACME (2021). An Introduction to Dysregulation in ME/CFS. https://bacme.info/wp-content/uploads/2022/05/BACME-An-Introduction-to-Dysregulation-in-MECFS-1.pdf
BACME (2025). ME/CFS Guide to Therapy.
https://bacme.info/wp-content/uploads/2025/09/BACME-Guide-to-Therapy-2025.pdf
British Pain Society (2021). Core Standards for pain management Services in the UK.
https://www.britishpainsociety.org/static/uploads/resources/files/FPM-Core-Standards-2021.pdf
Chu L, Elliott M, Stein E, Jason L (2021). Identifying and Managing Suicidality in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Healthcare 9(6):629.
doi: 10.3390/healthcare9060629.
Copperfield T (2025). Neighbourhood ME/CFS care should energise GPs. Pulse, July 23rd issue.
Edwards JCW (2021). Expert witness testimony. Appendix to NICE Guideline NG206. https://www.nice.org.uk/guidance/ng206/evidence/appendix-3-expert-testimonies-pdf-333546588760
Gaunt, DM, Brigden A, Harris SRS, et al. (2024). Graded exercise therapy compared to activity management for paediatric chronic fatigue syndrome/myalgic encephalomyelitis: pragmatic randomised controlled trial. Eur J Pediatr 183, 2343–2351.
Goudsmit EM, Nijs J, Jason LA, Wallman KE (2012). Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document. Disabil Rehabil. 34(13):1140-7.
doi: 10.3109/09638288.2011.635746.
Kemp J, Sunnquist M, Jason LA, Newton JL (2019). Autonomic dysfunction in myalgic encephalomyelitis and chronic fatigue syndrome: comparing self-report and objective measures. Clin Auton Res. 29(4):475-477. doi: 10.1007/s10286-019-00615-x.
Kindlon T (2017). Do graded activity therapies cause harm in chronic fatigue syndrome? J Health Psychol. https://doi.org/10.1177/1359105317697323
McPhee G, Baldwin A, Kindlon T, Hughes BM (2019). Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service specialist centres in England. J Health Psychol. 26(7):975-984. https://doi.org/10.1177/1359105319854532
NICE (2021). Myalgic encephalomyelitis/Chronic Fatigue Syndrome: Diagnosis and Management. Guideline NG206. https://www.nice.org.uk/guidance/ng206
Nuñez M, Fernández-Sola J, Nuñez E, et al. (2011). Health-related quality of life in patients with chronic fatigue syndrome: group cognitive behavioural therapy and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up. Clin Rheumatol 30(3):381-9.
Pinxsterhuis I, Sandvik L, Strand EB, Bautz-Holter E, Sveen U (2015). Effectiveness os. Group-based self-management program for people with chronic fatigue syndrome: randomised controlled trial. Clinical Rehabilitation 31(1):93-103.
Science for ME (2025). Factsheet for health professionals. https://www.s4me.info/docs/Health_Professionals_S4ME_Factsheet_v2.pdf
Sulheim D, Fagermoen E, Winger A, et al. (2014). Disease Mechanisms and Clonidine Treatment in Adolescent Chronic Fatigue Syndrome. A Combined Cross-sectional and Randomized Clinical Trial. JAMA Pediatrics168(4):351-360.
Wearden AJ, Riste L, Dowrick C, et al. (2006). Fatigue Intervention by Nurses Evaluation--the FINE Trial. A randomised controlled trial of nurse led self-help treatment for patients in primary care with chronic fatigue syndrome: study protocol. BMC Med. 4:9. doi: 10.1186/1741-7015-4-9.
White PD, Goldsmith KA, Johnson AL, et al. (2011). Comparison of adaptive pacing therapy, cognitive behavioural therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 377(9768):823-36. doi: 10.1016/S0140-6736(11)60096-2.
Wormgoor MEA and Rodenburg SC (2021). The evidence base for physiotherapy in myalgic encephalomyelitis/chronic fatigue syndrome when considering post-exertional malaise: a systematic review and narrative synthesis. J Transl Med 19, 1 https://doi.org/10.1186/s12967-020-02683-4
Jonathan CW Edwards, Professor in Connective Tissue Medicine*
Dr Michelle Bull, Chartered Physiotherapist
Joan Crawford, Chartered Counselling Psychologist
*Correspondence to JO.EDWARDS@UCL.AC.UK
Introduction
NICE Guideline NG206 (NICE, 2021) proposed a major change in management for ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). It judged that the use of therapist-delivered treatments such as graded exercise therapy (GET) and cognitive behavioural therapy was not based on reliable evidence and raised concerns of harm. Since that time, policy for service provision has been unclear. The British Association for Clinicians in ME/CFS (BACME) has recently released a document outlining their policy (BACME, 2025). This is a response to that document.
We are a group of health professionals with an interest in promoting effective research and optimum care for ME/CFS. We wish to express our concern that the recent BACME document has no evidence base and will perpetuate outdated practices. The theoretical biological basis for care described is historical speculation that has not been substantiated. The description of ‘active therapy’ is unsupported by cited evidence and so vague it is hard to identify what even is being proposed. The document reads as an attempt to justify continued commissioning of ungrounded multidisciplinary rehabilitation services, likely to hinder progress towards effective research and care.
The document is lengthy, much of it being general statements about ethos and strategies rather than specifics of therapy. There are many statements that are unfounded or inaccurate; we will focus on what we consider key problems.
Theoretical basis
The document claims to base therapeutic strategy on a ‘dysregulation model’ for ME/CFS. Inasmuch as physiology is mentioned, including the hypothalamic-pituitary-adrenal axis and the autonomic nervous system, these are areas where historical speculation has not been supported. Adrenal hormone levels in ME/CFS are normal in most studies. Although some symptoms are attributable to autonomic activity (e.g. tachycardia) objective evidence for autonomic malfunction was not confirmed (Kemp et al., 2019). As far as we know at present, the HPA axis and autonomic nervous systems may be responding normally in ME/CFS to unidentified stimuli. Recent genetic studies suggest that these may relate to neuronal or immune pathways, but we are nowhere near having information reliable enough to inform clinical care (Science for ME, 2025). The existing literature on ‘dysregulation’ in ME/CFS (see BACME, 2021) provides no coherent, testable model that explains symptoms like post-exertional malaise that could be applied to patient management.
The reality is that we have no useful understanding of the genesis of symptoms in ME/CFS. The document implies that somehow therapists can impart an understanding of the disease to patients. This is unacceptable overreach, amounting to deception. If the rationale is that explanation, even if bogus, will help patients to overcome and recover from their symptoms (via a BACME rehabilitation pathway - rehabilitation by definition the action of restoring someone to health or normal life) essentially ‘think themselves better’, we are back to the paternalistic psychologisation of ME/CFS that has dogged patients’ lives. Patients saw through this long ago and rightly resent it. They deserve hope and validation but for those whose condition persists, false hope from bogus theory and predictions of improvement is the worst of all. As Chu et al. (2021) have noted, suicide risk is raised in ME/CFS, and it is common to hear people with the illness quote false hope as a factor in suicidal thoughts.
Clinical Care
The document presents a care policy claimed to be NICE NG206 compliant. However, the text is so vague that it is unclear whether this is the case. More importantly, the policy is antithetical to the basic aim of NICE – to recommend care based on reliable evidence. The ME/CFS Guideline Committee (NICE, 2021) rejected graded exercise therapy (GET) and cognitive behavioural therapy as treatment for ME/CFS on the grounds that existing evidence indicated they were not cost effective. Ironically, the therapy recommended in the BACME document is closer to the ‘adaptive pacing’ arm of the PACE trial (White et al., 2011) which had even less evidence of efficacy. The difference may have been due to bias but the bottom line from PACE was that at 2 years no form of therapy showed any effect on outcome. It is not simply a case of lack of evidence. Many studies provide negative evidence (lack of efficacy) for the sort of approach detailed in the document, including goal setting and activity management (Pinxsterhuis et al., 2015; Wearden et al. 2006; Gaunt et al., 2024).
The BACME document never tells us quite what it is recommending but the implication is that it is some form of ‘pacing up’ or ‘increasing’ of activity. This is implied in a section with a table that justifies this as different from GET. Since we have no evidence for the efficacy or safety of such an approach it cannot be justified (see Wormgoor and Rodenburg, 2021). It is a serious concern that it is introduced in a covert way without any attempt at explanation or justification.
Pacing for ME/CFS, as defined by Goudsmidt, et al. (2012), is not an active therapy designed to produce progressive improvement but merely a means to improve coping with current illness - not to be confused with pacing as defined in the context of articular pain management (British Pain Society, 2021) as a means to increasing activity (or pacing up). The BACME document confuses the two.
The document also talks of goals of therapy, as if there is an assumption that achieving such goals is an indication of effectiveness of treatment. Patients will have personal goals in terms of a more active life but there is no reason to call these goals of therapy. They cannot be used as indicators of the usefulness of service provision.
The document gives no specifics but implies that ‘active therapy’ is to be offered in some limited time frame representing a ‘rehabilitation pathway’ with arbitrarily defined ‘phases’. For many with ME/CFS illness is lifelong and there is no reason to think that any such time frame or pathway applies. The document claims that access to ‘rehabilitation’ is a right but this makes no sense if what is needed is long term support.
Health Professional Involvement
An interesting feature of the document is the introduction of the concept of ‘interdisciplinary’ care, implying care that can be provided by any health professional because it does not rely on any specific expertise or training. The sensible rationale given is that an interdisciplinary approach allows care to be provided by fewer professionals with more continuity. Yet the document suggests that multidisciplinary teams (i.e. the opposite) are appropriate. Since we have no theoretical basis for care it is hard to see the justification. A physician is needed to provide accurate diagnosis, and to exclude uncommon differentials both initially and whenever new problems occur – entailing a long-term cmmitment. Severe cases require ongoing nursing support. An interdisciplinary approach need only involve a physician and a specialist nurse with knowledge of aids to support activities of daily living, with the ability, at any time, to call on a nutrition team or occupational therapy services for home adaptations for severe and very severe cases, or a psychologist/counsellor in the case of high levels of distress or suicidal thoughts.
There is talk of therapists bringing special skills but if these are relevant, they should be specified and evidence given. Otherwise, the interdisciplinary model makes no sense. Furthermore, pressure to 'engage' can be physically and cognitively overwhelming for patients. Expectations can push patients when they are too unwell, resulting in deterioration. An explicit statement of the need to understand this risk of harm is absent from the BACME document (see Kindlon, 2017; McPhee et al., 2019).
There is little reference to medical involvement. The advice on medication seems out of context. An annual review with a GP is suggested, but most GPs have little or no knowledge of the evidence base for ME/CFS. Annual review is important to ensure differential diagnoses or concurrent conditions are not missed. The clinical assessment needed does not fit into a routine 10 minute GP appointment.
General Approach
Much of the document is taken up with jargon about therapeutic ethos, apparently intended to sound empathetic. However, terms often appear to hide other motives. ‘Person-centred’ sounds good but appears to be used to justify avoiding specific general recommendations on the grounds of ‘tailoring’ therapy to individuals. If there is no reliable evidence of efficacy of a treatment modality, there is, by definition, even less reliable evidence for being able to tailor to individuals.
There is talk of a ‘collaborative approach’ (partnership, therapeutic alliance) – apparently intended as a concession to patient involvement. But it also carries an implication that patients have a responsibility to ‘engage’ or contribute. Without an an evidence base for what is on offer this is patronising and inappropriate.
There is lengthy advice on gathering personal information but without saying what for. This appears to amount to nothing more than an invasion of privacy. All the professional needs do is indicate what specific advice is on offer – which the document fails to cover. The section on co-morbidities is ill-informed and not based on reliable evidence. There is also lengthy discussion of assessment of activities, monitoring, planning patterns of activity. There is no evidence that this does anything other than add further burden for the patient.
None of the clinical policy has any valid connection to a ‘dysregulation model’. Dysregulation is usually used to mean an altered setting of homeostasis that would not be expected to respond simply to a change in activity pattern. The claims of autonomic ‘desensitisation’ have no basis in physiology. One attempt to damp down sympathetic activity with a drug appeared to make ME/CFS worse (Sulheim et al., 2014).
It might be argued that this analysis is overly critical in the context of real-life care and ‘clinical experience’. However, clinical experience has proven to be a very unreliable guide and in the case of ME/CFS shown to be unfounded. The benefit of the doubt might be allowed if it were not for the fact that almost all the literature in the field is methodologically very poor (Edwards, 2021). In an area where there are vocal champions of a wide range of theories and therapies, we have come across virtually nobody in the patient community extolling the benefits of the type of rehabilitation model described in the BACME Guide. Those commissioning services might do well to note the analysis of ‘Tony Copperfield’, G.P., in a recent commentary in the magazine Pulse (2025).
Summary
The document represents a failure to move forward to an evidence-based approach to an illness that is recognised as being long term for many people and, at present, of unknown mechanism. It appears to serve interests of BACME members rather than patients and from our perspective involves a deception that can only perpetuate the lack of trust ME/CFS patients have in the healthcare system. Until now policy has been unclear. This document makes it plain that nothing with any evidence base is on offer and that there is no justification for continuing to commission services based on the proposed model.
With limited resources, we believe the focus must be on medical care of severe and very severe cases, including nutrition and other life support, to reduce unnecessary deaths. The lack of a specialist medical 'home' with a research base has halted progress in knowledge and care in ME/CFS. This neglect cannot continue to be tolerated. Continuing current provision without medical leadership will not result in improved outcomes for patients. Filling the vacuum with well-intentioned, but ineffective 'therapies' is a poor use of resources and therapists’ time.
References
BACME (2021). An Introduction to Dysregulation in ME/CFS. https://bacme.info/wp-content/uploads/2022/05/BACME-An-Introduction-to-Dysregulation-in-MECFS-1.pdf
BACME (2025). ME/CFS Guide to Therapy.
https://bacme.info/wp-content/uploads/2025/09/BACME-Guide-to-Therapy-2025.pdf
British Pain Society (2021). Core Standards for pain management Services in the UK.
https://www.britishpainsociety.org/static/uploads/resources/files/FPM-Core-Standards-2021.pdf
Chu L, Elliott M, Stein E, Jason L (2021). Identifying and Managing Suicidality in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Healthcare 9(6):629.
doi: 10.3390/healthcare9060629.
Copperfield T (2025). Neighbourhood ME/CFS care should energise GPs. Pulse, July 23rd issue.
Edwards JCW (2021). Expert witness testimony. Appendix to NICE Guideline NG206. https://www.nice.org.uk/guidance/ng206/evidence/appendix-3-expert-testimonies-pdf-333546588760
Gaunt, DM, Brigden A, Harris SRS, et al. (2024). Graded exercise therapy compared to activity management for paediatric chronic fatigue syndrome/myalgic encephalomyelitis: pragmatic randomised controlled trial. Eur J Pediatr 183, 2343–2351.
Goudsmit EM, Nijs J, Jason LA, Wallman KE (2012). Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document. Disabil Rehabil. 34(13):1140-7.
doi: 10.3109/09638288.2011.635746.
Kemp J, Sunnquist M, Jason LA, Newton JL (2019). Autonomic dysfunction in myalgic encephalomyelitis and chronic fatigue syndrome: comparing self-report and objective measures. Clin Auton Res. 29(4):475-477. doi: 10.1007/s10286-019-00615-x.
Kindlon T (2017). Do graded activity therapies cause harm in chronic fatigue syndrome? J Health Psychol. https://doi.org/10.1177/1359105317697323
McPhee G, Baldwin A, Kindlon T, Hughes BM (2019). Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service specialist centres in England. J Health Psychol. 26(7):975-984. https://doi.org/10.1177/1359105319854532
NICE (2021). Myalgic encephalomyelitis/Chronic Fatigue Syndrome: Diagnosis and Management. Guideline NG206. https://www.nice.org.uk/guidance/ng206
Nuñez M, Fernández-Sola J, Nuñez E, et al. (2011). Health-related quality of life in patients with chronic fatigue syndrome: group cognitive behavioural therapy and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up. Clin Rheumatol 30(3):381-9.
Pinxsterhuis I, Sandvik L, Strand EB, Bautz-Holter E, Sveen U (2015). Effectiveness os. Group-based self-management program for people with chronic fatigue syndrome: randomised controlled trial. Clinical Rehabilitation 31(1):93-103.
Science for ME (2025). Factsheet for health professionals. https://www.s4me.info/docs/Health_Professionals_S4ME_Factsheet_v2.pdf
Sulheim D, Fagermoen E, Winger A, et al. (2014). Disease Mechanisms and Clonidine Treatment in Adolescent Chronic Fatigue Syndrome. A Combined Cross-sectional and Randomized Clinical Trial. JAMA Pediatrics168(4):351-360.
Wearden AJ, Riste L, Dowrick C, et al. (2006). Fatigue Intervention by Nurses Evaluation--the FINE Trial. A randomised controlled trial of nurse led self-help treatment for patients in primary care with chronic fatigue syndrome: study protocol. BMC Med. 4:9. doi: 10.1186/1741-7015-4-9.
White PD, Goldsmith KA, Johnson AL, et al. (2011). Comparison of adaptive pacing therapy, cognitive behavioural therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 377(9768):823-36. doi: 10.1016/S0140-6736(11)60096-2.
Wormgoor MEA and Rodenburg SC (2021). The evidence base for physiotherapy in myalgic encephalomyelitis/chronic fatigue syndrome when considering post-exertional malaise: a systematic review and narrative synthesis. J Transl Med 19, 1 https://doi.org/10.1186/s12967-020-02683-4
