NICE have now published the final version of the new guideline.
Dr Charles Shepherd, who was a member of the committee that prepared the new guideline, comments:
People with ME have had to live with a NICE guideline for almost 15 years that was unfit for purpose – because it recommended treatments that were either ineffective or harmful
After a very through review of all the evidence – from clinical trials, experts and patients – we now have a new guideline that has reversed these recommendations and should be widely welcomed by people with ME.
In particular the new guideline…..
- Recognises that ME is serious and complex medical disease
- Emphasises the need for early and accurate diagnosis – preferably within 3 months of the onset of symptoms, which normally follow an acute viral infection, and where there are important overlaps with Long Covid
- Provides sensible guidance on activity and energy management in order to avoid symptom exacerbation and no longer recommends GET
- Recognises the special problems faced by children and those with severe ME
The next challenge involves educating and training all health professionals on how to diagnose and manage ME and setting up a full network of hospital-based referral services where GPs can refer for further help
We will be issuing more detailed reaction in due course
Dr Charles Shepherd
Hon Medical Adviser MEA
Treatments have included cognitive behavioural therapy, graded exercise therapy and medication to control pain, nausea and sleeping problems.
The new guideline says that ME/CFS is a complex condition where there is no “one size fits all” approach to managing symptoms. People should be given a personalised plan, led by the person living with ME/CFS with support from a healthcare professional, that can be applied to any type of activity, it says.
Baroness Finlay of Llandaff, a consultant in palliative medicine and vice-chairwoman of the guideline committee, said it had worked hard to “ensure care becomes more empathetic and focused on the individual’s needs”.
Professor Chris Ponting, of the Institute of Genetics and Molecular Medicine at Edinburgh University, said: “The guidelines will improve the lives of people with ME worldwide. They will improve awareness that graded exercise often makes symptoms worse.”