One more week for this survey. Thank you to all #pwme and #lc who have already helped. If you have used or are using tvns please fill in the survey +ve and -ve responses needed to inform our Chartered Society of Physiotherapy funded feasibility study. Thanks Physios For ME

physiosforme.com/post/new-surve…

Family stage protest outside hospital over medical treatmet of 18-year-old girl
itv.com/NEWS/granada/2…

Physio’s for ME achieve funding success for vagus nerve study!

@PhysiosforME says: 'The project will focus on transcutaneous vagus nerve stimulation (“taVNS”), a non-invasive method of stimulating the vagus nerve via electrodes attached to the ear. '

meassociation.org.uk/rclx…

🧵
Imagine being so ill, you’re too weak to eat or talk.
Light, sounds, vibrations cause agony.
Trying to do more than lie horizontally makes you even sicker.

You’ll die without a feeding tube...
#BringMillieHome #DontLetMEDie
1/

Thanks also to Research at University of Liverpool UoLiverpool Physiotherapy @LivUniHealthSci Prof. Helen Dawes Sarahtyson and

1. After 4 attempts to get this study funded with various funders we are now so pleased to thank the Chartered Society of Physiotherapy for funding it. So many #pwme using #tvns with mixed results. We are carefully planning this study, recruitment should start in August. Physios For ME

Millie fears she may die in hospital unless doctors start taking her severe ME symptoms more seriously. She says the hospital enviornment is 'torture' but medics 'won't listen' ME Association #MEAction Network
mirror.co.uk/news/health/se…

World’s largest genetic study of ME offers hope to sufferers
channel4.com/news/worlds-la…

Back to the tvns survey. Just a reminder that there are 2 weeks left to fill out the survey, thank you to all who have filled it out so far. 30 #pwlc 60 #pwme we need to hear all experiences please +ve and -ve. Thanks Physios For ME
physiosforme.com/post/new-surve…

Some People with #MECFS can have problems tolerating food. Hannah describes her experience losing weight, not being believed and it being mistaken for an eating disorder. She was sent to psychologist and her care was cut off until she had an assessment.

Our one-sheet handout, 'How to work safely with people who have ME', is now available in:

English
Cymraeg
Deutsch
Nederlands (België)
Nederlands
Norsk

physiosforme.com/onesheetprinto…

And we have volunteers working on:

Ελληνικά
français
español
Suomalainen

Thank you so much!!

After 1 week, we now have 71 responses, 27 #pwlc and 44 #pwme thank you. The survey is open for another 3 weeks it would be great to double those numbers. Please fill out even if you have only been trialling for a short time, all experiences important. Thank you Physios For ME

Ty Sarahtyson !

“most important…change for physiotherapists is rejection of the notion that ME/CFS is caused by deconditioning, ‘dysfunctional illness beliefs’ or ‘exercise avoidance’”

+ #PwME “should not be offered exercise-based treatments”

sciencedirect.com/science/articl… #MEcfs

36 responses so far. Thank you to all that have completed it. Please share far and wide thank you ME Association Long COVID Physio #MEAction Network Long Covid Support 🌍 Science for ME online forum Long Covid SOS Todd Davenport

I asked my Long COVID patient if he ever noticed a change in color of his legs when standing, his answer was no… #MedTwitter When examining a LC patient, take their shoes and socks off, you can see acrocyanosis with standing or prolonged sitting secondary to dysautonomia.

Really pleased to get this survey out. More and more #pwme and #pwlc trying transcutaneous auricular vagus nerve stim but does it really help? Are there any problems with it? Please fill out this survey to help us understand Physios For ME

A new survey is now open 🚨

Do you have ME/CFS or Long COVID (with PEM) and are you currently using, or have you ever used, transcutaneous auricular vagus nerve stimulation (taVNS)?

More details here physiosforme.com/tvnssurvey2

#pwme #MyalgicEncephalomyelitis #LongCovid

#pwme I need your help please. I wàs hoping to recruit 20 healthy for this study but so far everyone has some medical issues. What do I definitely exclude? Gynae, endo, cardio, resp, digestive, neuro, msk issues? Thanks Todd Davenport Naomi Harvey PhD #WearAMask RemissionBiome MECFS/LongCovid Self-Experiment Tess Falor, Ph.D. | @RemissionBiome