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. offers key information to allow people with M.E. to make informed decisions about what is right for them. While our Information, Support and Advocacy team does not recommend any specific treatments or management approaches, our Healthcare Services team works with individual patients to offer personalised advice, care and support.
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
The National Institute for Health and Care Excellence (NICE) for health professionals in England and Wales updated its guideline for M.E./CFS on 29 October 2021. This states that graded exercise therapy should not be offered to those with M.E./CFS, while CBT should only be offered in order to help individuals manage symptoms, not as a cure.
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.
Produced in 2010, the Scottish Good Practice Statement on ME-CFS 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 people, but not all. Scottish Ministers committed to scheduling a review of the guidance when "NICE publishes its revised guideline on this condition in 2021."
