Britain’s health standards agency is expected to immediately issue a new guideline on the diagnosis and management of ME, warning that every day of delay “puts more people at risk”, according to activists.
The National Institute for Health and Excellent Care (NICE) was due to release updated guidelines on myalgic encephalomyelitis, also known as chronic fatigue syndrome (CFS), in August.
An earlier draft guideline had indicated that a controversial treatment called Graduated Exercise Therapy (GET) should no longer be recommended. But just a day before the final directive was announced this summer, NICE said it was suspending publication due to a disagreement over content.
The ME Action UK campaign group said it would present a petition with more than 21,000 signatures to a representative from Nice in London on Tuesday, urging them not to delay in issuing the directive.
The association opposes GET, a structured exercise program, saying that “the evidence shows that it harms most people with ME” and that any evidence supporting its use “has been found to be of low quality or very weak by the independent steering committee of Nice “.
Sian Leary, of the group, said the non-publication of the guideline in August was “devastating for thousands of people with ME” who she said were “seriously injured by graduated exercise therapy. “.
She said, “We are concerned that people who arrive at clinics are still receiving graduated exercise therapy and are suffering from it. Had the guideline been issued on time, this further damage could have been avoided. Every day of delay puts more people at risk.
Last week I revealed that a patient with ME is taking legal action against NICE for the delay in issuing the latest guidelines, which have not been updated since 2007. The man, who wishes to remain anonymous, fears that if he seeks treatment from the NHS, “he will also be subject to the harmful regimen specified in the NHS by current NICE guidelines.”
The agency is due to hold a roundtable in London on October 18 with relevant professional organizations and representatives of interested patient groups to discuss “key issues” around the directive. The meeting will be chaired by Professor Dame Carol Black, who according to NICE is independent in the organization and development of the guideline.
Last month, Dr Paul Chrisp, Director of the Guidelines Center in Nice, said: “We recognize that patients will be concerned about these new developments in what has been a long and difficult guidelines process. We hope that by organizing a round table, we will be able to understand the issues raised by professional bodies to inform NICE’s thinking on the next steps in the publication of the directive.
In August, the Royal College of Paediatrics and Child Health said it was “very happy that this process has been put on hold,” adding that it looks forward to “working with NICE to ensure future directions benefit children. , to young people and to those who manage their care ”.
The NHS describes CFS as a long-term illness with a wide range of symptoms, the most common of which is extreme fatigue. It can affect anyone, including children, but it’s more common in women and tends to develop when people are in their mid-twenties to mid-forties.
Current treatments include cognitive behavioral therapy (CBT), GET, and medications to control pain, nausea, and sleep problems.