WAMES sent our response to the NICE consultation on Monday 24th July 2017.
NICE asked: Do you agree with the proposal not to update the guideline?
We believe the NICE Guidance CG53 on CFS/ME omits guidelines on key issues, includes guidance that is potentially harmful and is misleading to both patients and clinicians. It is in need of urgent revision.
The decision not to review the guidelines has been taken on the basis that evidence in other trials support the original PACE trial results. No consideration has been given to the flaws that are common to all these trials.
i) broad patient selection criteria, ignoring the possibility of subgroups requiring different management approaches and ignoring the wide range of severity experienced by patients, or the possible differences between children and adults or men and women – research has repeatedly been shown that different criteria identifies different groups of patients and reduces the usefulness of research results e.g. Baraniuk, Johnston Nacul & Jason;
ii) measuring only subjective outcomes;
iii) the lack of double-blind, randomised, placebo-controlled trials, especially as some trials have actively sought to influence the results by promoting their approach as ‘the most effective therapies’;
iv) assumptions about the nature of the illness, the factors that sustain it and the suitability of exercise therapy which are contradicted by scientific research into the illness.
We go on to challenge the decision to overlook the failings of the PACE trial and to call for stricter assessment of it and similar trials, by the Cochrane review panel. They should also take into account patient experience, and growing research evidence into the nature of the illness, the effect of exercise on the body and the way the post exertional response affects multiple symptoms.
Topics we believe are missing from the guidelines include:
- help for healthcare and social care professionals to give ongoing care and management advice to patients who do not improve, who remain ill over a long period and who are severely affected
- the difference between CBT aimed at changing negative illness beliefs and CBT designed to help people adapt and cope better with the limitations of the illness
- Pharmacological interventions e.g. the use of amitriptyline for pain
We fear that a failure to update the Guideline will simply drive a bigger wedge between the medical and the patient communities, who do not find it a valuable or believable resource.