WAMES writes to NICE about publication delays

 

The shock of yesterday’s announcement from NICE, ‘pausing’ publication of the ME/CFS guideline, was followed up this morning when there was still no announcement about what was to happen next. Are they rewriting the rule book as I type?

Since the beginning of 2018 stakeholders of all types (medical & health professionals, governments and health commissioners, charities, peer support groups, individuals and their families) have all submitted  &/or discussed evidence of need and research results, experiences and questions. The final guideline was agreed weeks ago and had been proofread. Some disagreed and left the committee, not entirely surprising. Before the last guideline was published, some patient groups refused to sign up to the guideline.

A call for 50 stories of harm caused by GET was originally said to be issued by NICE, but it now appears to be from people preparing to fight back, should NICE reverse the decision to recommend against GET and CBT as first line treatments. If you wish to contribute your story send it to jan@wames.org.uk and I will pass it on.

Many charities, medics and individuals are speaking out on the media and we include some links at the end. WAMES however felt motivated, on all our behalf, to tell NICE some of what we felt and thought (although to be honest there are more questions than anything.)

Dear Ms Stafford,

We were shocked to receive notification that the publication of the ME/CFS NICE guidelines will be postponed yet again. At such short notice and with no information on what happens next!

We are aware that NICE has rules and regulations governing the production of guidelines and we would be grateful if you could let us know which of these applies in this circumstance.  It would also help us, as stakeholders, to know what rules and regulations will apply if further consultation is pursued.

We are keen that all the time and energy WAMES, individual patients and other groups have contributed to the production of these guidelines, will not go to waste.

Patients in Wales have suffered from poor treatment, lack of diagnosis and a small number of inappropriate services for far too long. We desperately need an authoritative source that the Welsh NHS can use to improve services, but if there is a credible challenge to the final guideline then we hope that there will be full opportunity for us as stakeholders to examine that challenge in detail, within the rules.  We also hope that NICE will once again offer all stakeholders, whether in the health service, charity sector or individual patients, fair representation.

One major concern is that there will be further loss of confidence in healthcare professionals. Patients are wondering if they will ever be able to trust them to follow the scientific evidence and listen to their patients. We really hope that NICE is NOT considering modifying the guideline so some clinics can continue to provide a loosely defined diagnosis and clinics that offer potentially harmful services with no evidence base.

We look forward to hearing the full details and a time schedule as soon as possible.

Jan Russell Chair, WAMES

Read other responses to the announcement

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