A group of physiotherapists with a special interest in Myalgic Encephalomyelitis (ME) with the aim to improve physiotherapy management for people with ME

Joined June 2019
Our complete set of "Seven Slides for Physios" is now available on our website, with references and an accessible text-only version The whole set is also grouped together in this thread 👇 physiosforme.com/seven-slide…
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Physios For ME retweeted
Just a gentle reminder that “associative learning” does not explain differences in cardiopulmonary test performance between people with ME and matched controls, particularly at ventilatory anaerobic threshold. You just can’t “learn” or “unlearn” that. 🤷🏻‍♂️ tandfonline.com/doi/full/10.…
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Physios For ME retweeted
Today, we're launching the Visible Beta app for #LongCovid and #MECFS. We want to make tracking your condition and taking part in research available to as many people as possible, as soon as possible. Here's more about what we're building:👇🧵1/7 makevisible.com/blog/the-nex…
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Physios For ME retweeted
Replying to @kirstler31
Look at workwellfoundation.org PhysiosForME.com showing 2 day CPET tests. Authors such as Rowe et al, Keller et al, Lien et al 2019 all showing reduced anaerobic threshold. All with #pwme who have #pem as their defining symptom. @PhysiosForME
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We would like to hear from pw #LongCovid in the U.K. who’ve been discharged from a LC clinic Did you receive a copy of the discharge letter to GP? Or any final report ? Did you have a comparison of any outcome measures on starting, during or and ending at the clinic?
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👏👏👏 Nikki never rests! For more info on this current study see: physiosforme.com/post/pacing…
Now recruited 20 participants (4 with #LC and 16 #ME) for the HRM study. Now also doing follow up visits after 8 wks intervention. Really tricky to coordinate everything due to limited funds, time and equipment. Weekends are gone for 7 months but it's worth it @PhysiosForME
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We are going to be making a post about wheelchair use in #LongCovid. Would love to hear your stories. Have you had to purchase or was it prescribed? What has your wheelchair enabled you to do? Quotes may be used in the blog so message privately if you’d prefer to remain anonymous
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Without Twitter, Physios for ME probably wouldn't have come together ♥️ It's allowed us to connect and learn from #pwME *If* the worst happens, don't forget our website has info and resources, and will be updated with even more over the next few months physiosforme.com/
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You can choose to "sign up" on our blog page, which means you'll receive email notifications everytime we make a new post. We use the blog to update on our research, campaigns... And our forthcoming book! 🎉🥳 physiosforme.com/blog
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An example of how any exercise programme, even modified, must be considered with respect to how PEM can be triggered by many other aspects of daily life.
Made it 1 month - the longest I've been able to do supine, modified #POTS protocol. What derailed me? An appt & a virtual mtg... Will isn't enough. My body cannot do a protocol. An ex of the importance of understanding post exertional malaise, folks! #MedTwitter #LongCovid #pwME
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Physios For ME retweeted
Permission to share the outcome of advice to ‘push through’ by #LongCovid Zoom ’clinic’ in N.I. The patient was diagnosed with LC/#ME by a top NI consultant #FirstDoNoHarm #PEM 👇
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Physios For ME retweeted
Getting #LongCovid/MECFS means going from having 15-16 active hours in a day to 3-5, if you’re lucky. Cutting things out of your life to fit this time is brutal. Any error means the following days are even shorter. What would you cut?
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Physios For ME retweeted
#MEAction's response to NY Magazine’s egregious article on ME and Long COVID is now on our site. Feel free to share! Editor Justin Miller has acknowledged receiving the email, but has offered no further response. meaction.net/2022/11/10/elem… #pwME #LongCovid #MECFS #MyalgicE
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Physios For ME retweeted
Coming tomorrow. 😊 This is going to be fun. I'm really looking forward to it.
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Physios For ME retweeted
Hi @ManvBrain. Thanks for an interesting article in @NYMag. What a great premise; to suggest #LongCovid is a condition that rhymes with #MECFS. We totally agree on that. Not everyone with #LongCovid has #MECFS of course, but enough do that the analogy has some intellectual merit.
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Physios For ME retweeted
Do you live in Suffolk or NE Essex? What would you like to see from the proposed M.E. & CFS Service following the new NICE guidelines? Is you can, please complete this survey. Quick and easy to do. #MECFS #pwME #MyalgicE @MEAssociation letstalksnee.co.uk/me-cfs-ni…
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Calling all of @pwME living in Suffolk and NE Essex please fill out the questionnaire and let's get a service fit for purpose @MEActNet @suffolkcarers
Do you live in Suffolk or NE Essex? What would you like to see from the proposed M.E. & CFS Service following the new NICE guidelines? Is you can, please complete this survey. Quick and easy to do. #MECFS #pwME #MyalgicE @MEAssociation letstalksnee.co.uk/me-cfs-ni…
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Physios For ME retweeted
Physios, OTs and any other health professionals. Please do NOT include "graded exercise therapy" in EHCPs for children & young people with #MECFS - it is no longer recommended in NICE guidance and may cause harm. Teach good energy management strategies instead 1/2
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Sign up today! Thank you so much to everyone who has taken part so far – you can still help us by spreading the word! If you haven’t yet signed up or completed your questionnaire you can do so here: bit.ly/3gDAX6T #DecodeME #pwME #MECFS
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This article is using a photo of an @MEActNet protestor saying “Millions are still sick” as the cover photo. It’s talking about Long Covid, which is ME for 40-50% of people. Yet, as usual, it doesn’t mention ME anywhere.
Over 2,000 Guardian readers told us about their long Covid fight. You might be bored of COVID & want to move on There are 2.3 million people in the UK who don’t have that luxury - & yet it is such a lonely disease to live with ⁦⁦ ⁦@long_covidtheguardian.com/society/2022…
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Physios For ME retweeted
There have been a number of #pwme in our studies with high lactate. Some people recommend using bicarbonate. How do you use it? Thanks @PhysiosForME @benh_mecfs
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