Managing ME symptoms

What are the symptoms of ME?

People with ME can experience a range of symptoms that include:

• Post-exertional malaise (PEM) is the worsening of symptoms after any physical, mental, or emotional exertion, even when only small amounts of energy are used. Post-exertional malaise is the hallmark symptom of ME.
• debilitating fatigue
• cognitive difficulties (brain fog)
• sleep difficulties/unrefreshing sleep
• orthostatic intolerance (symptoms when standing upright which are relieved when reclining)
• flu-like symptoms
• aching muscles or joints/pain
• sensitivity to noise and light
• and more.

Women often find that symptoms worsen at different times in their menstrual cycle.

While there are key symptoms that must be present for an ME diagnosis, not everyone with ME experiences the same set of symptoms and the illness can vary enormously, including how long symptoms last.

Can ME symptoms be treated?

There are no targeted treatments for ME that work for most people because the biology of ME is not yet fully understood. This makes ME different from other illnesses that have clear biomarkers and treatment paths.

There are, however, a number of treatment approaches that some find help manage their symptoms.

For example, most respondents (88%) from our 2019 Big Survey reported that they had tried pacing, an energy management technique, in the past five years, with a further 70% said they use pacing to do what they feel able to within their manageable limit.

It should be remembered that treatment that helps one person might not work the same way for someone else. While advice from others with ME can be useful, it’s important to only follow medical advice from qualified healthcare professionals.

To decide on a treatment, look at the evidence and understand what it involves. The choice of which treatments to try - or not to try - is yours alone.

Our resources below give information about the symptom management approaches referred to in the 2021 NICE guideline for ME.

Graded exercise therapy (GET)

Action for ME is very clear that, in line with the 2021 NICE guideline for ME/CFS, GET should NOT be offered as a treatment to people with ME.

The October 2021 NICE guideline for ME/CFS advises health professionals as follows (section 1.11.14):

“Do not offer people with ME/CFS:

• any therapy based on physical activity or exercise as a cure for ME/CFS
• generalised physical activity or exercise programmes – this includes programme developed for healthy people or people with other illnesses
• any programme that does not follow the approach in recommendation 1.11.13 [see below] or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (GET)
• physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.”

As well as the Action for ME resources below, you may find the following links (to external sites) helpful:

• 2021 NICE guideline to diagnosing and managing ME/CFS
• Graded exercise therapy should not be recommended for patients with post-exertional malaise