UK: Physios for ME

JemPD said:
Awesome @PhysiosforME you are doing fantastic work, we are all so grateful to you.
Your consistently humble recognition of how much we can learn from each other (despite your wealth of knowledge), & your collaborative attitudes, also really stand out to me - an example of how working together can really pay off.

You're a credit to yourselves and to our community. Thank you so much :heart:

You rock! :emoji_trophy:
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Thank you so much
 
Trish said:
Thank you so much @PhysiosforME. It's wonderful to read of how much you have achieved over your first 3 years in educating your fellow professionals and in research, writing your book and keeping in close touch with the views of pwME as you do all of this. I look forward to reading the book and following the progress of your research.

You can be justly proud of what 4 individuals working together can achieve on behalf of a community of patients for whom such collaboration between professionals and patients has in the past been so fraught with problems. I hope this is a sign of better to come with other health professions too.
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Thank you for all your ongoing support - it really helps us keep learning and motivated to keep going!
 
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.
 
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.
 
liverpool.ac.uk
Physios for ME - Institute of Population Health

Posted on: 21 March 2023 by Dr Nicola Baker in March Posts 2023
Myalgic Encephalomyelitis (ME) is a chronic condition affecting more than 250,000 in the UK. Dr Nicola Clague-Baker, Lecturer in the School of Health Sciences discusses her work with the ME community as part of a group of physiotherapists called Physios for ME.

Myalgic Encephalomyelitis (ME) is a “complex, acquired multi-systemic disease with a profound dysfunction /dysregulation of the neurological control system” affecting more than 250,000 people in the UK, this compares to 100,000 people with Multiple Sclerosis and Parkinson's Disease. ME is highly disabling, causing greater functional impairment and poorer quality of life than many other chronic conditions.

Although the causes are unclear, most cases are triggered by a viral infection including COVID-19. With cases of long COVID estimated to be over 2 million in the UK and evidence showing that approximately 50% of people with long COVID will develop ME, the numbers of people with ME (pwME) could potentially soon double.

Physios for ME
Over the last four years, I have worked closely with the ME community as part of a group of physiotherapists called PhysiosforME. We are four physiotherapists who have personal and professional experience of supporting pwME. Our aim has been to increase awareness of ME, improve training about ME and conduct clinical research that is important to the ME community.

We’ve used Twitter and Facebook to connect with pwME especially people with severe ME who are confined to their bedrooms for years. We now have over 7000 pwME and their carers who follow us on Twitter and Facebook and we regularly ask pwME for their knowledge related to all aspects of ME and its management.

Heart rate monitoring
In 2021, a group of pwME who run a Facebook group called ME/CFS – Pacing with a Heart Monitor #2 contacted us about conducting a survey exploring the use of heart rate monitoring. Together we produced and ran an international survey. PwME were instrumental in all aspects of this study and our research is due to be published later this year. Together we’re now also conducting a feasibility study related to heart rate monitoring funded by the ME Association, the Stockport ME support group, Visible (@Visible) and the University of Liverpool. During this study, pwME have been supporting participants with ME and LongCOVID to try heart rate monitoring. This is the first study to investigate this management technique for pwME.

Next steps
Recently we have worked with pwME who run a Facebook group - A Vagus Adventure AVA – Dawn Wiley to conduct another international survey related to transauricular vagus nerve stimulation (taVNS). Together we have submitted a funding application for a feasibility study exploring taVNS for pwME. Again pwME have been the experts and we have supported them to navigate the research world. There are other research projects in the pipeline all ideas highlighted by pwME including: the use of IV saline for dysautonomia; bicarbonate and Q10 for acidosis and with Professor Douglas Kell a study investigating the existence of microclots in pwME.

What have I learnt about working with pwME?
We couldn't do this research without them. Some pwME have lived with the condition for over 30 years. They are the experts. Despite incredible suffering and a life that is so restricted, they still want to help others learn. They still want to find solutions. Working with Patient and Public Involvement (PPI) is not a tick box exercise it is essential to understand a world that we as researchers can only observe.
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https://www.liverpool.ac.uk/population-health/blog/iph-march-2023-blogs/physios-for-me/
 
"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.
 
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