About Myalgic Encephalomyelitis (ME)

Tuesday 26 March 2024

Physiotherapy Care - Notes for Physios


Physiotherapy Care - How to Work Safely with People with Myalgic Encephalomyelitis (ME) - Notes for Physios

We often hear of people with ME looking for or being referred to the support of a physiotherapist. 

“Physiotherapy can be beneficial for people with ME in terms of:

  • Pain relief

  • Postural management/prevention of contractures

  • Improving and maintaining respiratory health

  • Equipment provision and activity modification to improve quality of life”

We are aware that besides seeing doctors people with ME may come into contact with other medical practitioners/therapists in hospitals/other care settings, e.g., physiotherapists. A person with ME may be referred to physio following surgery or for musculoskeletal, neurological, pain, rheumatology issues, etc.
However, education about ME is limited or more likely non existent for most physiotherapists who may not know about the potential harm of some treatment approaches in people with ME, in particular for people with severe ME so physios need a basic level of awareness about ME to be able to adapt their treatment.

Physios need to know how to respond safely and appropriately to people with severe ME, keeping in mind how easily you may trigger the abnormal post exertional response in ME, i.e., PENE. 

“Factors to consider include:

  • Keeping light to a minimum

  • Keeping the volume of your voice low

  • Avoid wearing scented products

  • Consider obtaining subjective information through family and carers, or in short bursts to avoid over-exertion

  • Determine how you will measure the tolerance and success of any intervention, keeping in mind post exertional malaise is a delayed response”

Physios For ME (UK)

Physios for ME (UK) are a group of physiotherapists in the UK with a special interest in Myalgic Encephalomyelitis ("ME"). Physios for ME was established in 2019 to try to address the issues around physiotherapy provision for people with ME. They are volunteers who work together in their spare time. 

Physios for ME (UK) created a downloadable one-sheet for other physiotherapists entitled “How to work safely with people who have ME/CFS”, please see that guide here.

More useful information for Physiotherapists from Physios for ME (UK)

- Energy Management in ME by Physios for ME here

- Heart Rate Monitoring by Physios for ME here

- More about physio care in ME from Physios For ME (UK) here

Important Notes for Physios

1. Currently there is no evidence for any effective physiotherapeutic interventions for people with ME when diagnostic criteria includes PENE. Applying treatment that seems effective for CF or CFS patients may have adverse consequences for ME patients and should be avoided.

2. Graded Exercise Therapy is harmful to people with ME.
The NICE ME Guideline 2021(UK) represents a major reversal in advice for clinicians.

“The committee concluded any programme using fixed incremental increases in physical activity or exercise (for example, graded exercise therapy), or physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories, should not be offered to people with ME. The committee also wanted to reinforce that there is no therapy based on physical activity or exercise that is effective as a cure for ME.”

The NICE Guideline 2021 states: 1.11.14 Do not offer people with ME/CFS:

· any therapy based on physical activity or exercise as a cure for ME

· generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses

· any programme that does not follow the approach in recommendation 1.11.13 or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (see box 4)

· physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS”



Deconditioning – Information from Physios For ME (UK)

“If you reduce your activity, then you will become deconditioned, so surely we will need to use exercise to prevent or treat this?”

'It is logical to assume that reduced activity will lead to deconditioning. However, deconditioning is not a defining characteristic of people with ME. In exercise tests, some people with ME have shown no difference in aerobic fitness compared to matched controls or even had better fitness.

Deconditioning has also been ruled out as a cause for the orthostatic intolerances often found associated with ME as part of autonomic dysfunction. Further inconsistencies have been seen in cardio-pulmonary exercise tests (CPET) that are repeated after 24 hours. Healthy sedentary controls and people with disorders that are associated with deconditioning such as chronic lung and heart disease, HIV and multiple sclerosis, can reproduce or even improve upon their results from the previous day.

In contrast, people with ME have shown a marked deterioration in performance on the second test. This deterioration in performance is inconsistent with deconditioning and instead may reflect the hallmark feature of ME, [post exertional neuro-immune exhaustion (PENE), also referred to as] post exertional malaise (PEM).

Deconditioning should therefore be considered a potential secondary complication of ME, as opposed to a primary cause. But while exercise may typically address deconditioning in other populations, for people with ME exercise is likely to trigger [PENE/] PEM, worsen symptoms and cause greater inactivity, and will therefore probably be counterproductive.' - this piece on deconditioning is by Physios For ME (UK).

Our notes!

  • People with ME have reported worsening of ME symptoms following physiotherapy. 
  • People with ME take longer to recover after surgery.
  • People with ME often don't reach physiotherapists goals with regards to progress because of delayed recovery in ME.

Thanks to Physios For ME for much of the above guidance information for physiotherapists

Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk.The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance. 

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