Trial By Error: A Physiotherapist’s Guide to Understanding and Managing ME/CFS

By David Tuller, DrPH

A new book, A Physiotherapist’s Guide to Understanding and Managing ME/CFS, has arrived at a timely moment. With so many long Covid patients being diagnosed with ME or ME/CFS, it is essential that physiotherapists—or physical therapists, in the US—grasp the essentials of the disease, and in particular the existence of post-exertional malaise (PEM).

The book, which came out last month, was co-authored by four British physiotherapists—Karen Leslie, Dr Michelle Bull, Dr Nicola Clague-Baker, and Natalie Hilliard. In 2019, the four of them founded an organization, Physios for ME, in order to “to research, educate and advocate to improve physiotherapy management for people with ME.” According to the website:

“We are aware that people with ME may come into contact with physiotherapists in many services; musculoskeletal, neurological, community, paediatrics, pain, fatigue, rheumatology, private practice – as well as specialist ME clinics…However, education about ME is limited for most physiotherapists and current guidelines do not reflect more recent evidence about the potential harm of some treatment approaches.”

I recently spoke with two of the four authors about why they wrote the book, how they formed Physios for ME in the first place, and related issues.

5 thoughts on “Trial By Error: A Physiotherapist’s Guide to Understanding and Managing ME/CFS”

  1. With all due respect, physiotherapy is not a solution for ME/CFS/POTS. It gives a false impression that you can do something about your illness. That doesn’t mean that if you can, you should keep moving within your limits. Most people do not need a physiotherapist for that. They can teach you some things. But that’s it. It is a waste of money and a revenue model for the therapists in case of ME/CFS/POTS. The medical community just doesn’t know what to do with these patients.

    And insurance companies don’t want to pay too much for this disease. And certainly not approve disability applications. That’s what it’s all about. Money!

  2. I bought the book and have been very impressed with what I have been able to read so far. I am bedbound with severe ME, so I read that chapter. It basically said not to make us do anything, they are very aware of the potential harm of exercise. They talk about acting as mediators with other medical professionals. The initial chapter tells of the damage done by the GET cabal, gaslighting, and general negativity that we have experienced for years. There is also a useful looking chapter on medication. Though it is written for other physiotherapists, it covers so much that it would be worth a doctor reading. I intend to give the copy I have to our local medical centre, with a note asking my doctor to read it.

  3. I’m probably repeating myself, but I don’t think ‘fatigue’ should be seen as a medical word but rather as akin to ‘headache’ – a word sometimes used by patients to try to communicate what they’re feeling. Doctors should be looking at what type of fatigue it is – what are its distinguishing features – just as they do for headache. (And TATT should be in the bin.) Then we might get somewhere.

    I’m impressed by what these physiotherapists have done and it’s good to see their faces and hear them speak. From what I heard, they don’t seem to think that physiotherapy is a solution for ME but rather are concerned that ME patients could end up worse off at the hands of badly taught physiotherapists and want to ensure that any patients they encounter with similar profiles (whatever medical problem they’re attending for) will not be harmed. (Happy to be corrected if my interpretation is wrong.)

  4. Perhaps this link - – helps to show what’s wrong with ‘fatigue’ being used as a medical term. If fatigue means extreme tiredness then severe fatigue must surely mean severe-extreme-tiredness? Don’t ‘extreme tiredness’ or ‘severe tiredness’ cut it on their own? I imagine that some, or possibly many, people and doctors might think of ‘fatigue’ as simply a posher word for tiredness. In medicine, it should be seen as nursery school speak for describing symptoms – like saying that the patient has ‘tummy-ache’, (or an extreme tummy-ache maybe, if doctors choose to interpret it as the extreme version).

    In my opinion, it should not be acceptable in this day and age for just ‘fatigue’ (or the word with ‘mild’, ‘moderate’ or ‘severe’ tagged on to it) to be entered into a patient’s medical record. To do that would be like recording ‘tummy-ache’ or ‘abdominal pain’ without any description of where that pain is coming from or what that pain is like. Rather, every time it’s used on its own in medicine it should be challenged. On it’s own, without further detailed description, it does not deserve an entry in a patient’s medical record, let alone a place in a diagnostic term. Perhaps these admirable physiotherapists could campaign for the word to be banned unless a detailed description accompanies it?

  5. I read a comment on an ME forum that I think was saying that the term ‘tiredness’ should never be used in relation to ME. I appreciate where they’re coming from but, in my opinion, ‘fatigue’ is no better. Surely what’s wrong is that either term is used without any detailed description of the type of tiredness or fatigue. This, in my opinion, ‘nursery school’ use of the term ‘fatigue’ (which in my last comment I suggested was akin to saying that the patient has tummy-ache), has, I suggest, allowed papers like this one - to be published. Try reading its abstract replacing ‘fatigue’ with ‘tummy-ache’ or ‘abdominal pain’. I imagine it would be viewed as rubbish and yet, whilst arguing over whether ME should be called ME or CFS, I think perhaps ME sufferers and their advocates may have missed a key point – that doctors bandying ‘fatigue’ about on its own (or simply with adjectives to denote its chronicity or severity), and making no attempt to categorize it into different types according to a detailed history of its symptoms, is causing considerable harm. This should be seen as unacceptable.

    (Patients my well talk about their tiredness or extreme tiredness. Doctors should be able to document that but they should not be allowed to leave it at that. TATT should have no place in medical records because it’s so ridiculously infantile but FATT would not be any better, just because it sounds a bit more grown up. Tagging on adjectives for chronicity and severity does not go far enough – doctors need to investigate and describe their patient’s tiredness/fatigue in far more depth. )

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