UK: Physios for ME

We are a group of physiotherapists in the United Kingdom with a special interest in Myalgic Encephalomyelitis ("ME").

Our aims are:
- to educate and inform physiotherapists about ME and appropriate management strategies
- to support people with ME to feel confident in seeking physiotherapy treatment
- to support physiotherapists treating people with ME in providing safe and appropriate treatment
- to further explore treatment options through research and discussion in order to better understand what does and doesn't work for this patient group

We are a virtual group who work together in our spare time - we will post news and updates on this thread

You can find out more about us on our website https://www.physiosforme.com/

Or follow us on twitter https://twitter.com/PhysiosForME or on our facebook page https://www.facebook.com/PhysiosforME/

 

Oh that every group of medical and medically related professions had a group as on the ball and as relevant as Physios for ME.

 

Today's news is that thanks to @Njc36 we have managed to get a section about post viral fatigue syndrome and ME in the World Confederation for Physical Therapy briefing paper on rehabilitation and the role of physiotherapy - see page 7
https://www.wcpt.org/sites/wcpt.org...COVID19-Briefing-paper-2-Rehab-PT-May2020.pdf

 

Excellent @PhysiosforME and @Njc36 .

 

Woah! well done!

 

https://www.csp.org.uk/frontline/article/we-answer-your-questions Our latest news is that we managed to get an article about PVFS and ME in our physiotherapy magazine. It goes out monthly to 59,000 of our colleagues so we're really pleased. It is also the first time we have seen anything in there about avoiding GET.

 

@PhysiosforME I,have been in contact with the lead physiotherapist drafting the Covid19 rehabilitation in N Ireland, and have sent through all your stuff. He says it's been extremely useful so hoping to see the final result.

 

piece on MEA website
Physiotherapists taught three little words for the care of people with Post-Viral Fatigue Syndrome | 3 June 2020

https://www.meassociation.org.uk/20...r-the-care-of-people-with-me-cfs-3-june-2020/

 

This is brilliant @PhysiosforME - what good news! Thank you!!

 

I love this -thank you for sharing our stuff

 

Today we posted our first ever podcast - you can see the whole team talking about post COVID rehab, post viral fatigue syndrome and ME.
Dr Charles Shepherd from the ME Association was our guest

https://www.youtube.com/watch?v=OyFNVayKYCg

 

my only criticism is the use of 'boom and bust' (used by yourselves and CS) which is a term often used by the bPS 'researchers'.
This tends to be used by them as an 'explanation' for PEM.
There is no 'boom'; rather it is that, having felt so very unwell, a patient feels less unwell, thinks therefore that they can do what they were able to do before they fell ill, and do more than they are actually capable of doing, often ignoring any warning signs. Which then leads to exacerbation of the condition, relapse and eventually PEM (not necessarily the next day).

 

And also the use of "boom and bust" suggests that the optimal operational mode for a pwME is no ups and downs at all, but a graph showing constant, flat daily-average energy expenditure rate over time; and the implication that is how pacing should work. But not so at all; not for everyone anyway.

My wife paces extremely well, and seems to have a natural talent for it. But her quality of life relies heavily on sanely pushing herself to achieve some degree of what she once was able to do, but knowing she will pay for it later. If she tried to avoid PEM altogether then she would lose out hugely on the quality of life she does manage. She has basically found an oscillatory energy expenditure waveform where the price she routinely pays is acceptable to her, for the gains she routinely achieves. I'm certain it's highly disproportionate - if she halved her energy expenditure waveform excursions, I'm confident her quality of life would reduce to way, way less than half what it currently is. And "acceptable" by no means means it is all OK, nothing like, but is a balance she has arrived at given no better choice.

This is going to vary considerably according to illness severity and individual life balance. But understanding this is crucial for anyone trying to understand what life is like for a pwME.

 

[Bolding mine]

Agreed but as often as not it's not necessarily a choice. Lack of support be it financial or physical often means that if you do get a window when you are able to do something - shower, get in to a docs appointment, put a laundry load in, or simply brush your teeth, you have to grab it with both hands.

The BPS boom and bust theory is in some ways a self fulfilling prophecy. They skate over the fact that witholding appropriate support because it reinforces false illness beliefs puts the patient in the position where they have less control over how much they can do. As many don't have any support they have to do the essentials when they can, even though it may cost them dearly by way of PEM later.

 

I wonder whether it's helpful to compare the pacing phenomenon to the lives of people who're not ill?

Every now and again my friend goes out with work colleagues and makes a night of it, knowing she's likely to pay for it with a hangover. Another does charity marathons, knowing that he's going to be knackered and aching for days. People who've got a big day ahead prepare by having an early night, or if they've had a hideous week at work, they cancel their weekend plans and blob out in front of Netflix to recover.

Nearly everyone does pacing in some form or other, as a normal part of life. In situations where they can't, such as after having a baby, their physical and mental health often takes a battering. We are different, because our payback is from having a shower rather than going on a stag weekend in Ibiza, and we also need much longer to recover – but is it any more 'boom and bust' than a healthy person living a normal life?

 

yes; what they constantly refer to as a 'vicious cycle/circle' that they say contributes to perpetuation of illness, but which totally contradicts the 'fear of activity' part of their deconditioning theory. Hence the reason, I think, for the latest paper from the PACE trial authors where they attempt to identify several different activity pattern sub-groups. Still trying to prove that they are, and have always been right.

 

Thanks for the feedback - interestingly it is one of the phrases that really helped my son understand what pacing meant.