Physiotherapist warns about over-exertion in ME/CFS | Frontline journal, Chartered Society of Phsyiotherapy | 15 May 2013

May 21, 2013

From Frontline, Journal of the Chartered Society of Physiotherapy, 15 May 2013.

Physio Michelle Bull has a special interest in exercise for people with chronic fatigue – because her son has the condition

I read the article about graded exercise therapy (GET) (Frontline, 20 March) with great interest as a physiotherapist and mother of a teenage son with ME or chronic fatigue syndrome.

I have read a lot around this subject on the internet, and have found a large number of online support communities and discussion groups.

There is a huge amount of controversy regarding the use of GET among these online support communities, with the majority reporting it to be detrimental to patients’ health.

This is believed to be due to inappropriately planned or progressed exercise programmes, possibly undertaken independently, or under supervision from a person without the appropriate experience.

I have certainly had to develop my skills and knowledge in this field to support my son. Establishing an accurate baseline is essential for these patients.

Post-exertional neuroimmune exhaustion is extreme fatigue not relieved by rest or sleep and can be delayed in onset for 72 hours.

My son would be able to exercise for five minutes with little apparent immediate problem but three days later he would be confined to bed for over a week while he tried to recover.

In addition, mental effort has the same effect as physical effort.

Ten minutes of maths homework has the same effect as exercising for 10 minutes.

Mental activities must therefore be considered when baselining children’s activity levels and setting an exercise regime.

It is concerning that physio is being talked about online as something that makes children with ME’s symptoms worse.

As a profession we need to ensure we are improving the health of all our patients – treating conditions we are competent to treat, carrying out thorough assessment and regular review of progress, and adapting exercise programmes as required.

I believe that physical activity does have a role to play in the care of people with ME.

But this needs to be individualised for each patient rather than adhering to a rigid protocol.

We can’t risk making any of our patients worse with our therapeutic interventions.

Michelle Bull is a physio and project manager at the London Cancer Alliance

10 thoughts on “Physiotherapist warns about over-exertion in ME/CFS | Frontline journal, Chartered Society of Phsyiotherapy | 15 May 2013”

  1. ‘We can’t risk making any of our patients worse with our therapeutic interventions.’ Wise words indeed from this physio, I guess because she actually has a son with ME, she sees the true effects of exercise/overdoing it. Contrasts somewhat with the occupational therapist recently featured in Guardian (and on MEA) who – well-meaning no doubt – suggests that PWME can be rehabilitated by simple steps x, y, z. She says she helps clients ‘formulate a clear treatment plan that fosters stability and allows progression and re-integration into the community in a sustainable way’. News to me after 30 years that any treatment allows PWME to be well in a sustainable way. And I am fed up reading about ‘good days and bad days’ (also in the occupational therapist article – a good day suggests to me normal function, but there is never normal function. There are better days and bad/worse days, in my experience. PEM is always present, you never get away with a good day, you will pay later.

  2. How refreshing to read about physio as it could be for ME patients: careful, useful and respectful of the physical suffering of patients. And how different from the shadowy head tennis of GET and CBT which, in my experience, can leave a toxic mark on the patient’s physical and mental health for the rest of their lives. When patients are encouraged to contemplate their ‘perception of pain’ rather than acknowledge pain and deal with it in a commonsense way, is that not enough to drive even the most stoic and upbeat patient to the edge of reason? A little like repeatedly hitting someone on the nose and then asking them how they perceive the punch?

    If there were more physios like this lady in ME clinics, where patients could be genuinely treated for their post-exertional neuro-immune exhaustion, there would be more takers. We need proper medical support for sufferers that does not trivialise the illness. Once again, we come back to the same issue: if ME was treated as a physical illness, even without an obvious cure, patients would suffer less, there would be less fear of therapeutic intervention and less social stigma. If ME patients’ ‘fears’ are to be truly addressed, then try cutting the nonsense they routinely endure.

  3. I am a retired physiotherapist with ME, and I am a ME Connect volunteer, and I am so pleased to hear at last from a physiotherapist who has understood what needs to be done. PLEASE could this information be acted on by the CSP and MEA so that training can be offered to current therapists. There are so many negative comments about therapy treatment and yet it has the potential for being so helpful.
    Tony, is there any chance of seeing the original article in Frontline that is referred to?

    1. Hi Sue

      Very good question. You beat me to the pass there!

      I’m putting the link to the 20 March story in Frontline in our main item now.

      All best, Tony

    2. The link now resides in the highlighted words ‘Frontline 20 March’ found in the introduction to Michelle Bull’s brilliant letter. Please click on it.

      1. I wonder if this lady would be willing to be interviewed for Essentials, Tony? Be good to hear a little more about her experiences and how these have influenced her professional outlook and treatment protocols.

        We have some good understanding – similar – therapists on staff down here in Cornwall as part of the ME Service offered by the NHS. Not physiotherapists (I haven’t met them yet) but in the form of our Occupational Therapists who also carry out home visits.

        All about embracing not ‘exercise’ but ‘activity’ so they include all activity – mental and physical – and not specifically ‘exercise’ as the general public might understand it.

        Some misunderstanding I think out in the world – based on my own and my friends’ experiences down here anyway…

      2. I have now read the Frontline article. Very interesting, and obviously the answer is to train therapists so that GET is taught properly.
        Maybe the whole treatment regime could be called “Activity Management” rather than GET or CBT or Pacing, so that it doesn’t frighten people!

        1. Graded Activity is the preferred use of therapists here in Cornwall, Sue and I believe it is Julia Newton’s preferred terminology.

  4. Brilliant! I have been doing all the things she suggests for almost all of the 27 years I have had ME. I have developed a personalised programme but I won’t bore with details…except to say that there are lots of balls against walls. Soft balls of course!

  5. Always meant to ask you my friend – but is there a way to receive notifications of replies or set up a system whereby one can be alerted to comments, on this News page? Ta. Hope you are not overdoing it with all this workload! You need an assistant. Hint?! 🙂

Comments are closed.

Shopping Basket