UK: Physios for ME

Thank you so much

 

Thank you for all your ongoing support - it really helps us keep learning and motivated to keep going!

 

Teamwork!

 

https://twitter.com/user/status/1546116642576502785

 

A Christmas message from Physios for ME

https://www.physiosforme.com/post/a...e?postId=2f276730-4aad-42a6-b3eb-6427fd8dcd2e

 

"#pwme we are submitting a funding proposal for taVNS and are trying to identify what inflammatory panel to use. Two helpful studies - Trianinos et al and Rodriguez et al - any thoughts?"

I'm assuming taVNS is Transcutaneous Auricular Vagus Nerve Stimulation.

 

I am not clear quite why Nicola wants an 'inflammatory panel'. There is no evidence at present for any measurable inflammation linked to ME symptomatology.

If the hypothesis is that vagal nerve stimulation reduces inflammation and the study showed reduced inflammatory markers after treatment that would tell us nothing at all about its usefulness in ME, which might have nothing to do with inflammation.

If the study showed a robust effect on ME (against well-blinded sham) then having data on inflammatory markers might be of interest but since these are in general normal in ME it seems unlikely that anything interpretable would be found.

In simple terms there aren't any useful 'inflammatory panels' anyway. You just look at C-reactive protein as an index of acute phase response.

 

I would be very happy to advise on a draft protocol.

 

Another approach would be to say that serum samples before and after treatment would be stored and if a convincing positive result obtained these could be run for cytokines. If nothing changed that would be useful evidence for the effect not being through those cytokines (no particular reason why they should be pro-inflammatory ones) but if there was a change it would be hard to know how that related to getting better because we have no pre-existing evidence for a cytokine pathway in disease causation.

 

I have added this to Nikki’s thread:

https://twitter.com/user/status/1628322260594327552

 

@Jonathan Edwards
Nikki has asked me to pass on her contact details to discuss please - I will DM you

 

liverpool.ac.uk
Physios for ME - Institute of Population Health

Posted on: 21 March 2023 by Dr Nicola Baker in March Posts 2023

https://www.liverpool.ac.uk/population-health/blog/iph-march-2023-blogs/physios-for-me/

 

https://twitter.com/user/status/1639678887306092546

 

Publication date of their book is 21 August £26.99 with an e-book version.

https://uk.jkp.com/products/a-physiotherapists-guide-to-understanding-and-managing-mecfs

 

It’s available on Amazon.
I’ve pre-ordered a hard copy.

 

"We're pleased to announce a new resource – a downloadable one-sheet titled “How to work safely with people who have ME/CFS”.

This is aimed at physios who do not work in specialist ME services, to help them understand how to adapt their practice to work safely with people who have ME.

The new resource is a work-in-progress so we’d like to hear how useful it is in practice. You can download the one-sheet and find out more on our website here."

https://www.physiosforme.com/post/new-handout-released?postId=3eb17aac-7e9b-49df-9a5b-073a53740f63

 

This looks great @PhysiosforME and very necessary for a range of therapeutic interventions where patients have ME.

I have no experience of physiotherapy sending me into PEM, but was badly affected when working with a nutritionist. She had a standard pattern for work which involved an initial session of an hour and a half followed by one hour follow ups.

Despite ringing her office to say that one and a half hours would be too long and at a minimum, I would need a 15 minute minimum break, this was ignored and a 2 minute loo break substituted. Foolishly I attended a second session ( by zoom- it was in lockdown) thinking that it would be less demanding and again I was subjected to an intense session. The clinician was simply unable to adapt her method of working. I had been referred to her by a Consultant for an issue which had no available treatments but where diet had been found to help. I ended up in severe PEM after both sessions and cancelled further meetings.

So thank you for your leaflet which looks great and which I think could be used as a model by a range of professionals who work with people with ME. You really are leading the way. Thank you for your help.

 

Thanks so much for this new one-sheet @PhysiosforME its brilliant. I particularly like the way that when you first glance at it it seems like 'not much to read', so i'd feel quite comfortable giving it to a physio at the start of a session.

Since you've asked for feedback... A small but from my POV inportant, point...

In the blue section at the top where it talks about changes to environment 'lighting, noise....'
Could that please be considered replacing the word 'noise' with 'sound'.

'Noise' to a healthy person is something like loud music, banging, drilling, etc its something loud & intrusive which they will not associate with a busy waiting room or a large room with several physios working, where there will be a few people all talking at once. They will not think that the fan quietly humming in the background in the summer, is "noise"

PwME are often described as sensitive to 'light & noise', its terribly frustrating, but all the charities & in my experience many PwME do it.... but its misleading, because it presents us as sensitive to light - which is interpreted as light at any level otherwise it would say 'very bright light', & sensitive to noise - ie sound only at levels where a healthy person would term it 'noise'.

This causes problems - people often say to me 'oh its quiet there, no noise at all', when what they mean is that the background music is low volume & nobody is shouting or doing construction work! Its quiet to them, but its a hellish cacophony for me.

What they dont grasp is that its sound thats the problem not noise so they need to turn off that lovely quiet relaxing music, turn off the fan quietly humming in the corner which they can happily 'tune out' & can no longer even hear, & see me in a room where there is no one else talking other than us. These are not 'noisy' to them so when i ask for it they think i am just being difficult.

so if the wording could be altered to say 'lighting, sounds.....' or even 'lighting, noise/sounds....' that would be helpful.

 

Such a useful resource.