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NICE publish guideline

October 29, 2021

Action for M.E. is delighted, as are the other members of Forward-ME, to see the long-awaited guideline on diagnosing and treating M.E. be published by NICE. The publication follows a roundtable meeting held last week where Action for M.E. and other members of Forward-ME discussed the key issues.

Doctors and people with M.E. welcome the new NICE guideline on ME/CFS, which brings major improvements to the diagnosis, management, and support for people with M.E.

The new guideline sets out a significant change in approach:

  • Recommending ‘Energy Management’ techniques to avoid ‘Post-Exertional Malaise’ and exacerbation of symptoms. This approach recommends people with ME plan their physical and cognitive activities to stay within their energy limits, incorporating rest where necessary. This is also known as ‘Pacing’.
  • Maintains the use of Cognitive Behavioural Therapy (CBT) only to help people cope with the distress which can accompany a long-term condition, but recognises that CBT cannot cure M.E.
  • Child safeguarding is significantly improved. Some parents of children with ME have been subjected to inappropriate child protection orders, and threatened with the removal of their children, in the belief that the parents had caused a ‘fabricated or induced illness’.

The recommendations on ‘Energy Management’ will also help people with Long-Covid who experience Post-Exertional Malaise (PEM), many of whom have reported that ‘Graded Exercise Therapy’ worsened their condition, and their symptoms were dismissed as anxiety

This recommendation is a clear break from the past. Previously, people with M.E. were offered ‘Graded Exercise Therapy’ (GET), based on a hypothesis that they were deconditioned. NICE found the evidence for this to be poor quality, and many people with M.E. reported that GET caused serious harm.

The new guideline on ME/CFS was due to be published in August, but NICE ‘paused’ the release following intervention from some clinicians. After a round-table with representatives from the ‘Royal Colleges’ and M.E. charities, NICE is now confident that the guideline can be fully implemented.

“The new NICE guideline is welcomed because it acknowledges the truth of people’s experiences, and creates a foundation for hope that future children and adults with ME will not repeat the anguish of the past.” (Sonya Chowdhury, CEO, Action for M.E.)

“The guideline should drive better acceptance of ME as a serious medical condition and encourage doctors to personalise care based on individual needs. It is a real opportunity for doctors to transform the care patients receive.” (Dr David Strain, Medical Advisor, Action for M.E.)

We have compared 2007 versus 2021 to share the differences and key points of the new guideline. You can read this comparison here.

Further information:

  • ME/CFS, short for ‘Myalgic Encephalomyelitis’/ ‘Chronic Fatigue Syndrome, is a chronic disease characterised by long-term, debilitating loss of energy, often accompanied by pain. The defining symptom of ME is ‘Post-Exertional Malaise’, the disproportionate worsening of symptoms after exertion that can last days, months or years.
  • People with ME often experience other symptoms such as cognitive dysfunction (known as ‘brain fog’), heart rhythm disorders and neurological effects. People with severe ME can be bed-bound for years, with hypersensitivity to light and sound. Some require tube feeding.
  • There is currently no cure for ME, but effective management can reduce symptoms.
  • ME charities avoid the phrase ‘Chronic Fatigue Syndrome’ because ‘fatigue’ under-represents the severity of the disease and ignores many of the symptoms.
  • Forward-ME represents national ME charities, coordinating activities to support people with ME.

To read the full press statement written by Forward-ME, you can visit their website here.