The patient stakeholder comments are excellent. The so called "health professional" ones are so weak and thin in their responses.
Some important ones.
Looks like RC of Paediatrics is advocating for crooked Esther Crawley.
https://www.nice.org.uk/guidance/cg...er-consultation-comments-table-pdf-4602203536
Do you agree with the proposal to remove the guideline from the static list?
Royal College of Paediatrics
Yes
There will be new evidence.
Association of British Neurologists
Yes
We note that NICE is planning to wait for an updated Cochrane Review of Cognitive Behavioural Therapy which we agree with
Royal College of Psychiatrists
Yes
We support the view that the NICE guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) should be removed from the static list. This is because there is important ongoing research in the area that will be published in the next 3-5 years thus requiring active surveillance.
We support the request from NICE for an updated Cochrane review to include PACE data which may influence the outcome of future surveillance.
University of Manchester – FINE Trial
Yes
No comment
Do you have any comments on areas excluded from the scope of the guideline?
Royal College of Paediatrics and Child Health
Yes
We am aware there is new evidence regarding effective management for CFS/ME in young people which will be published very soon, and is highly likely to lead to a change in recommendations.
This is an important and but long document. Does it distinguish between adults and children. In children it is often called postviral fatigue and has a better prognosis.
Association of British Neurologists
No
No comments
Royal College of Psychiatrists
No
No comments
Royal College of Physicians
We would like to endorse the responses submitted by the Association of British Neurologists and Royal College of Psychiatrists
RCGP
Yes
- See question 1: There is new evidence since the publication of the guideline.
- Consideration of screening for Postural tachycardia syndrome (PoTS) to be included in
assessment of people with CFS/ME. Studies have shown that up to 30% of patients with CFS/ME have PoTS (2). Almost 29% of patients with PoTS have been given a diagnosis if CFS/ME (3). Fatigue is the most common symptom of PoTS (91%). It takes a mean of 7 years for patients with PoTS to be diagnosed and in the meantime 50% are mislabelled with a psychiatric/psychological explanation for their symptoms.
- PoTS has many more treatment options than CFS/ME, and many PoTS patients are able to return to school, employment and enjoy an improved quality of life once correctly diagnosed and treated. This may reduce the financial cost of such patients upon the NHS (as many undergo multiple referrals, and unnecessary investigations before diagnosis) and on the UK welfare system.
- The assessment of CFS/ME patients could include enquiry about orthostatic intolerance and palpitations.
- Current NICE CFS/ME Guidance states that patients should not undergo a routine tilt table, however, an active stand test for those with orthostatic intolerance is a cheap and quick test and could identify patients who may benefit from more timely diagnosis and treatments not currently available to them.
Do you have any comments on equalities issues?
Royal College of Paediatrics and Child Health
No answer
CFS/ME in children and young people is a very different condition to that seen in adults. For example, the controversial PACE study does not apply to CYP.
We suggest that the next revision of the NICE guideline be split into two distinct documents, for adults and CYP, otherwise there is a risk of clinicians incorrectly extrapolating adult evidence to CYP.