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Managing symptoms

Managing symptoms

Currently, while there might not be a proven pharmaceutical cure for M.E./CFS yet, there are a number of treatment approaches that some find help them manage the condition, including medication for individual symptoms. Because of the complexity of the illness, its fluctuating nature and the wide spectrum of symptoms, different things work for different people. Some, particularly those who are more severely affected, find the therapies currently available to be of little benefit.

Action for M.E. does not recommend any individual treatments or management approaches. Instead, we offer key information to allow people with M.E. to make informed decisions about what is right for them.

The National Institute for Health and Care Excellence (NICE) says it expects healthcare professionals “to take our guidance into account, but people also have the right to be involved in discussions and make informed decisions about their care.”

For patient insight into reduced function and the range of symptoms that comes with M.E., visit the Dialogues for ME/CFS website, a Wellcome Public Engagement Award-winner.

Pacing and energy management

Surveys by Action for M.E. and other M.E. charities have consistently shown that the majority of people with M.E. find that pacing (ie. managing physical, mental and emotional activity and rest) helps them to manage their illness.

  • When pacing, patients organise their day into sustainable activity and regular rest, helping them to avoid setbacks. It gives stability and a sense of control, making things more predictable and enhancing confidence.
  • The key to pacing lies in understanding what is meant by available energy, types of activity, rest, finding a baseline, and planning and setting realistic goals.
  • Useful resources include Action for M.E.’s Pacing for people with M.E. booklet, widely used by M.E. patients and healthcare professionals.

The British Association for CFS/M.E. (BACME) also publishes a therapy and symptom management guide. This practical clinical treatment summary incorporates existing tools and methodologies from specialists who work with adults and children who have M.E., and offers a consensus approach to broader treatment based on clinician expertise, patient experience and the best available evidence. It's free to download at BACME's website.

UK government guidelines

At the time of writing, there is considerable global debate among professionals about the effectiveness of behavioural versus biomedical approaches for treating and managing M.E. The US, the Netherlands, and Denmark have now shifted entirely to biomedical management of M.E., while other countries (including the UK) have not.

  • The 2007 NICE guideline for M.E./CFS (undergoing essential updates, though this process is on hold due to the Coronavirus pandemic)recommends cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as well as activity management, sleep management and relaxation. In the absence of formal guidance produced specifically for Northern Ireland, the Patient and Client Council indicates that some health boards follow the NICE guideline.
  • The 2010 Scottish Good Practice Statement on ME-CFS (SGPS) provides GPs in Scotland with guidance on the differential diagnosis and clinical management of patients with M.E. It says: “What works for one patient may not work for another and therefore it is crucial to tailor interventions to the needs and circumstances of the individual patient.” The Scottish Good Practice Statement acknowledges that CBT and GET benefit some, but not all.

There is much debate and discussion about CBT and GET – and the published evidence for them – about whether or not they work, and whether they might cause harm. In October 2019, we responded to NICE’s call for evidence as part of its guideline review, using data from our Big Survey of more than 4,000 people with M.E. We made it clear that we do not support the current guideline’s view that CBT and GET “are the interventions for which there is the clearest research evidence of benefit” for people with mild to moderate M.E. This is because of the legitimate questions raised about their safety and effectiveness.

Both the NICE guideline for M.E. and SGSP stress that the following should not be offered to people with M.E.:

  • advice to undertake unsupervised or unstructured vigorous exercise (such as “going to the gym” or “exercising more”) because this may worsen symptoms
  • specialist management programmes delivered by practitioners with no experience in the condition
  • an imposed rigid schedule of activity and rest.