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https://www.bmj.com/content/375/bmj.n2643
ME/CFS: Exercise goals should be set by patients and not driven by treatment plan, says NICE
BMJ 2021; 375 doi:
https://doi.org/10.1136/bmj.n2643 (Published 29 October 2021)
Cite this as: BMJ 2021;375:n2643
Ingrid Torjesen
Author affiliations
London
Graded exercise therapy (GET) should no longer be used to treat patients with myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS), says the National Institute for Health and Care Excellence in long awaited updated guidance.1
Patients may still be offered exercise programmes provided they are not based on fixed incremental increases in physical activity or exercise. Instead, programmes should be based around person centred energy management, which is a self-management strategy led by the patient with support from a healthcare professional in an ME/CFS specialist team, the guideline advises.
Energy management should consider all types of activity (cognitive, physical, emotional, and social) that help patients learn to use the amount of energy they have, while reducing their risk of post-exertional malaise or worsening their symptoms by exceeding their limits.
Cognitive behavioural therapy has sometimes been assumed to be a cure for ME/CFS, the guideline acknowledges. Now it should be offered only to help people manage their symptoms, improve their functioning, and reduce the distress associated with having a chronic illness.
The final 2021 guideline shows a real change of emphasis from the previous guideline published in 2007, which said that cognitive behavioural therapy and GET should be offered to people with mild or moderate CFS/ME as the interventions with the clearest research evidence of benefit.2 Rather than a focus on specific treatments, the guidance says, people with ME/CFS should receive individual support tailored to agreed goals, and a range of approaches should be used depending on the patient’s preferences and priorities.
The final guideline is very similar to the draft recommendations published in 2020,3 which were welcomed by patient groups and their representatives who had lobbied for years for the 2007 guideline to be changed.4
New emphasis
In August this year the proposed final guideline prompted the resignation of three members of the guideline committee, and several royal colleges raised concerns about the advice and the processes used to review the evidence.5 As a result, NICE delayed publication.
The guideline was finally published on 29 October after a round table meeting held on 18 October with a range of patient and professional organisations to discuss the concerns. The recommendations are unchanged, but there are differences of emphasis. The final October guideline highlights more clearly that GET means exercise programmes involving fixed incremental increases in the time spent being physically active and that cognitive behavioural therapy can still be used to support patients with ME/CFS but not offered as a cure.
Commenting on the final guidance, Alastair Miller, a consultant physician in infectious disease and internal medicine and previous clinical lead at the Royal Liverpool University Hospital CFS service (2006-14), said, “It is unfortunate that NICE continue to misrepresent GET as ‘fixed incremental increases in physician activity or exercise,’ whereas in practice the approach in most CFS/ME clinics has always been to tailor increasing activity to the individual’s needs and requirements in line with their current recommendations.
“It is unfortunate that so much emphasis is given to working ‘within current energy limits’ rather than a gentle and controlled pushing of those limits. However, it is to be welcomed that clinics will still be able to provide appropriate personalised activity and exercise programmes for those patients in whom it is felt to be appropriate.”
Relieving symptoms
The final guideline emphasises that while ME/CFS symptoms can be managed, the condition currently has no cure, either pharmacological or non-pharmacological.
Miller, previously principal medical adviser for Action for ME (2010-16) and former chair of the British Association for CFS/ME (2013-16), commented, “They say that exercise [or] activity cannot be regarded as a ‘cure’ for CFS/ME, and yet they accept that it may relieve symptoms. There is no such thing as asymptomatic CFS/ME; therefore, if you have no symptoms you have no disease.”
Trudie Chalder, professor of cognitive behavioural psychotherapy at the Institute of Psychiatry Psychology & Neuroscience at King’s College, London, said, “The NICE guidelines for CFS/ME are at odds with the research evidence. Researchers from different institutions in different countries have found graded exercise therapy and cognitive behaviour therapy to be effective for some patients with CFS.
“Evidence has shown they reduce fatigue and improve functioning without harm, if delivered by trained therapists in specialist clinics. Being a clinician and researcher in this field, I can’t help but think clinicians will be confused by this message from a respected organisation.”
The final guideline lists the symptoms of ME/CFS as debilitating fatigue that is worsened by activity, as well as post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties (“brain fog”), and it says that diagnosis can now be confirmed after three months rather than six months of persistent symptoms. The guideline committee agreed that removing this delay to diagnosis might enable earlier management and could potentially improve longer term outcomes.
Better acceptance
Charles Shepherd, medical adviser to the ME Association and a former member of the guideline committee, said, “This is a very special day for people with ME—publication of a new, evidence based NICE guideline which confirms that this is a serious and very debilitating medical disease.
“I welcome the emphasis on early and accurate diagnosis and the need to provide early guidance on symptom management when people are not recovering from a viral infection and a diagnosis of ME is suspected.”
Shepherd was “stood down” from the committee by NICE in August because of “continuing conflicts of interest” related to “providing information and commenting on key issues of concern to the ME/CFS patient community” while serving on the guideline committee.6
David Strain, medical adviser at Action for ME, said, “The guideline should drive better acceptance of ME as a serious medical condition and encourage doctors to personalise care based on individual needs. It is a real opportunity for doctors to transform the care patients receive.”
