Forward-ME: NICE issue clarification about new Chronic Pain Guideline & expand on statement for GET in Post-Covid-19

Dr Charles Shepherd, Hon. Medical Adviser, ME Association

Lady Margaret Mar

The Countess of Mar, Chair of the Forward-ME collaborative, recently asked NICE to provide clarification for two of their recent actions.

These relate to the earlier statement from NICE about the use of graded exercise therapy for people trying to recover from Covid-19 infection, and the confusion that has arisen over the draft new guideline for chronic pain.

The letter below from Dr Paul Chrisp (NICE Director of the Centre for Guidelines) provides confirmation that the draft Chronic Pain Guideline does not apply to people with a diagnosis of ME/CFS.

People with ME/CFS were concerned at the treatment proposals in the Chronic Pain Guideline. It essentially removes the option of drugs for pain relief, with the exception of certain antidepressants, and replaces them with recommendations of exercise, psychological therapies, and acupuncture.

Dear Margaret 

Thank you for your email on behalf of Forward ME.  

GET in Post-Covid

Our statement does not imply any judgement on the safety of any of the recommendations in the ME/CFS guideline if applied to patients with post-COVID-19 fatigue.

Dr Paul Chrisp

As NICE has not looked at the evidence, or made any recommendations, for the management of post-COVID-19 fatigue, we cannot make a judgement on what may or may not be effective in people with this condition.

The intention of our statement is to clarify that the recommendations in the ME/CFS guideline should not be applied to people with post-COVID-19 fatigue as they do not fall within the scope. 

NHS England has published guidance on the after-care needs of inpatients recovering from COVID-19. The guideline committee chair raised some concerns about the content of that guidance with NICE, we have been liaising with NHSE and they are continuing to review their guidance. 

Chronic Pain Guideline

With respect to the guideline in development for chronic pain, the main focus of the guideline is chronic primary pain.

This is pain that persists or recurs for longer than 3 months and can’t be accounted for by another diagnosis, or where it is not the symptom of an underlying condition.

The recommendations in the chronic pain assessment and management guideline do not apply to people with ME/CFS.  

We continue to work to support the ME/CFS guideline committee to proceed as promptly as possible with the development and publication of the new guideline on ME/CFS. 

Kind regards 

Paul Chrisp
Director of the Centre for Guidelines
National Institute for Health and Care Excellence

The ME Association

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