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Living with M.E.

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Introduction

Treatment and management

Action for M.E.’s research strategy focuses on increasing interest and investment in biomedical research, with the aim of developing more effective treatments and, one day, a cure. To do this, we work collaboratively with people affected by M.E., scientists, clinicians and industry professionals, aiming to bring more money and more people into the field.

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 their symptoms.

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

Please share your experiences of symptom management, access to care and support and living with M.E. in our Big Survey, open until Friday 2 August 2019.

Because we don’t yet understand the biology of M.E., there are no targeted treatments that work for the majority. This differentiates M.E. from other conditions where better understood biomarkers can offer clearer treatment pathways and protocols. So a treatment approach that you find effective may or may not have a different impact on someone else with the illness.

Other people may recommend a particular approach that has helped them. While this can be helpful in considering the options available to you, please remember that you should only take medical advice from an appropriately qualified healthcare professional.

To decide what treatment is right for you, you should look at the evidence, and make sure you fully understand what the treatment involves. Writing in our membership magazine InterAction science journalist and M.E. advocate Julie Rehmeyer says:

"Above all: listen, but nurture your inner sceptic […] a kind of radical open-mindedness is essential. But because compelling personal stories can be dangerously seductive, especially when pain and emotion are part of the mix, scepticism is equally crucial."

It’s your decision, and yours alone, which treatments you try, and which you don’t. You should never be pressured into trying a treatment you feel strongly against, or be dismissed for wanting to try a treatment approach that you believe might be of value to you.


Managing your symptoms

Symptom management approaches that may be offered to you include:

The NICE guideline and the Scottish Good Practice Statement (see "UK government guidelines" below) assert that:

  • shared decision-making between you and your healthcare professionals should take place during diagnosis and all phases of care (this means that any decision regarding treatment or care should be made in partnership with you)
  • you have the right to refuse or withdraw from any treatment or care plan without this affecting other aspects of your care, or future choices about care.

Unhelpful stereotypes and myths sometimes still persist about M.E. and/or CFS, including that it is psychiatric (a mental health condition) or even psychosomatic (a physical illness caused by mental or emotional stress); that it is “yuppie flu” or burn-out, or depression. None of these are correct.

While scientists have not found biological abnormalities in M.E. that are specific enough to be used as a diagnostic test, abnormalities relating to the brain and the immune system clearly indicate (according to the US Centers for Disease Control) that this is “serious, chronic, complex, and systemic disease," as it was referred to in the Institute of Medicine's major 2015 report on M.E.

A lack of awareness about these facts can, unfortunately, impact on the support you might receive from friends, families and even professionals. If you feel that your care is being influenced by stereotypes or prejudices then it is right that you should challenge this – contact our Information and Welfare Support Service for advice. And please remember there are many good healthcare professionals, not influenced in this way, who provide excellent support and care.


Advocating for your rights

If you have already begun a symptom-management programme and are concerned it’s not right for you, it’s never too late to discuss your concerns with the therapist working with you. If you are finding the programme difficult or painful, or are not sure about what you are being asked to do (or why), or if you feel uncomfortable for any other reason, it’s really important to bring this up.

Action for M.E. has a number of resources that aim to help you feel more confident about raising your concerns. You can:


UK government guidelines

At the time of writing, there is considerable global debate among professionals aabout 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 National Institute for Health and Care Excellence (NICE), which provides national guidelines for health professionals in England and Wales, recommends CBT and GET (as well as activity management, sleep management and relaxation). NICE also 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.” You can read more about this on the NICE website.
  • 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, 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.

A significant number of patients, scientists and charities, including Action for M.E., do not support the NICE 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., given legitimate questions being raised about safety and effectiveness.

The NICE guideline for M.E. and/or CFS is currently under review. Professionals, people with M.E. and charities, including Action for M.E., are taking an active role in this process, and a new guideline is expected to be published in October 2020.