Last post to highlight this survey. If you have #ME/CFS or #Longcovid and have tried hyperbaric oxygen please complete this survey. All experiences important. You can stop and complete at a different time allowing you to pace. Thanks @physiosforme.bsky.social
www.physiosforme.com/post/new-sur...
Does anyone know if any of the ME/CFS charities have prepared a response to the #SEND reform consultation at all? @actionforme.bsky.social @meassociation.org.uk
Update on our vagus nerve stimulation trial
😊
Quick catch up today to plan a new project 🙌😁
This AI generated infographic below summarises our
@physiosforme.bsky.social
feasibility study of heart-rate monitoring to support pacing, which found the protocol was feasible, well tolerated and well received, with high levels of continued use after the study ended. 4/5
Two weeks and we've nearly hit 100 respondents. It would be great to reach this target. Please share widely @physiosforme.bsky.social @meassociation.org.uk @longcovidphysio.bsky.social
www.physiosforme.com/post/new-sur...
New Survey now out: experiences of people with ME and Long Covid with hyperbaric oxygen / oxygen therapy.
Please share widely.
For all the info and survey link, head on over to
www.physiosforme.com/o2survey
A weekend team catch-up is a great way to touch base, find out all the projects we've been involved with individually, and set up our new team endeavour: watch this space 👀
We've just published a pre-Christmas update on our work over the last few months.
Wishing everyone a peaceful break and see you all again in the new year 💜
www.physiosforme.com/post/a-chris...
111 responses in one week. Thank you all. Responses from over 20 professions. A few professions not reached yet - Dentist, Chiropodist/podiatrist, Hearing aid practitioner,
Orthoptist, Paramedic, Radiographer. Please share widely thx @physiosforme.bsky.social
www.physiosforme.com/hcpwithmesur...
theredtreeandme.substack.com/p/red-leaves... Huge thanks to all the ME/CFS scientists & clinicians from around the world for the messages of hope given to #TheRedTreeandME for people with ME @chestercathedral.bsky.social @cgatist.bsky.social
🚨New survey alert 🚨
The experiences of healthcare professionals living with Long COVID (with PEM) and/or ME
All information can be found on the landing page here.
www.physiosforme.com/hcpwithmesur...
We worked with a great team:
@sunsopeningband.bsky.social Harry Leeming and patient experts. Collaboration with the ME community has been central to all our research projects - we learn from the best!
89% were still using heart rate monitors after 8 weeks, and 66% after 6 months.
No significant drop in activity level after the introduction of heart rate monitors, which appears to contradict concerns that this method of pacing will cause people to become over cautious.
(3)
As this is a feasibility study, no conclusions can be drawn about the data itself; the outcome is whether this protocol is feasible.
Key points found:
The protocol (using home-based testing) was feasible with no adverse events
(2)
We've had another study published 🥳
"Pacing with a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a feasibility study"
Open access link here. Summary below (1)
www.tandfonline.com/doi/full/10....
I will try and see what I can find out tomorrow when I can log in 🧐
Pleased to have assisted @thecsp.bsky.social to write this piece for their magazine, which goes out to all chartered physiotherapists in the UK.
Severe ME is particularly challenging because even your physical presence with a patient may cause worsening symptoms.
Physios can have a role in pain and posture management but this must be from a place of understanding of the condition.
@thecsp.bsky.social
It is #SevereMEDay
Physios in any specialism may meet people (adults or children) with severe ME during a hospital admission.
We can play a key role in education of other health professionals, to advocate for safe management and care
@thecsp.bsky.social
www.physiosforme.com/severe-me
Just saw this in the physio frontline journal! All advocacy is important however small! Thanks @thecsp.bsky.social @physiosforme.bsky.social
youtu.be/vv0pUwoF9J0?si…
Well done @michelleb4.bsky.social you represented @physiosforme.bsky.social so well. Some great #ME talks, well done all at the ME/CFS conference, digging deeper - Norway.
One of us is an avid player of lawn bowls
One of us attends a punk/rock festival annually
One of us has published four horror novels
One of us goes to France every year to cycle up mountains (slowly)
It's our six year anniversary!
To celebrate, the four of us spent a lovely weekend together, plotting and planning what our seventh year will look like.
You can read a whole recap of our year in our latest blog post here
www.physiosforme.com/post/we-cele...
Well done for @claguenjc36.bsky.social for getting 3 abstracts accepted at @thecsp.bsky.social conference. Taking every opportunity to educate physios in the care and management of people with #ME
Feel very privileged to have spent time with @putrinolab.bsky.social & others in the last week discussing actual evidence based robust science relating to ME and Long Covid. There is no room for this sort of nonsense @bmj_latest
You might need to try this link instead
www.physiosforme.com/onesheetprin...