The information and guidance in this training module for GPs in New Zealand on the treatment of ME/CFS is really awful
Not only does it state that the recommendations in UK NICE guidelines have been ‘severely discredited by world experts in the condition', it goes on to recommend graded exercise therapy (GET) and the Lightning Process (for children age 12 to 18) and claims that pacing ‘has not been shown to be effective' !
If a doctor here in the UK were to prescribe two specific treatments that were not recommended by NICE, and a patient then suffered harm as a result, the doctor could then face legal consequences
However, the UK NICE guideline recommendations do not form part of official guidance on ME/CFS in New Zealand
I hope that the New Zealand ME/CFS charities will call for the immediate withdrawal of this learning module
The MEA would be wiling to support any such action
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association.
Member of the 2018-2021 NICE Guideline Committee.
Member of the 2002 Independent Working Group on ME/CFS.
Article Extracts
Chronic fatigue syndrome, also known as myalgic encephalomyelitis (CFS/ME), is a complex, multi-system condition that affects 2-4 per 1,000 New Zealanders.1
Diagnosis requires careful analysis of the patient's history and pattern of symptoms, plus exclusion of other fatiguing illnesses.1 The BMJ Best Practice suggests several criteria, although clinicians do not always adhere to all four. These are: A diagnosis of ME/CFS should be suspected if the patient has all four key symptoms (e.g., post-exertional malaise, debilitating fatigue, cognitive difficulties, unrefreshing sleep or sleep disturbance) for a minimum of 6 weeks in adults and four weeks in children and young people.
Treatment approach and goals
Treatment aims to reduce symptoms and improve quality of life, focusing on patient self-management, which is why establishing a collaborative therapeutic relationship is essential.
An important step is to acknowledge the impact of CFS/ME on the individual's ability to work, maintain relationships, undertake basic self-care, and maintain self-identity. Frustration and anxiety can arise if there is skepticism towards CFS/ME patients – who may not appear ill – from their family, friends, and medical practitioners.
Symptom-specific treatments
The specific treatments that can help include:
- Cognitive Behavioural Therapy (CBT).
- Graded exercise
- Lightning Process (for children 12 to 18). There is encouraging evidence from a small RCT in children.4 It has also been used successfully in young adults but has not been studied in RCTs in older age groups.
Graded exercise on the other hand, where patients are encouraged to increase their activity beyond current functioning, has been much more clearly shown to be effective for both fatigue and physical functioning,1,3 and CBT also has a solid evidence base.
Activity pacing, where participants are not asked to increase activity beyond their current perceived energy envelope, has not been shown to be effective for fatigue reduction in large trials and systematic reviews.1,3 Part of the problem may be that pacing has been very variably defined: in the large PACE trial, 3 which was negative, participants were asked to limit their exercise to 70% of their perceived energy envelope; other trials that suggest there may be benefit have used higher figures and/or included co-interventions.1 With the above caveats about how to define pacing, there is limited trial evidence that pacing may increase physical functioning and reduce depression and anxiety.1
Low-intensity alternative delivery methods for evidence-based care (e.g., telephone, internet, brief primary care visits, and guided self-instruction of CBT programmes) suggest comparable improvements in physical functioning, fatigue, and patient satisfaction compared to usual care.
In a study on adults, home-delivered (in-person nurse visit or telephone coaching) ‘pragmatic rehabilitation' intervention for 20 weeks improved self-reported fatigue compared to supportive listening or treatment as usual.
Resources for clinicians
To the best of our knowledge, no hospital departments exclusively manage ME/CFS. CBT is usually conducted by Clinical Psychologists, graded exercises by physiotherapists, and there are private fully trained Lightning Process therapists.
(NB: The NICE guidelines are quoted as a source of information. For this condition, they have been severely discredited by world experts in the condition.2)