Ukraine 🇺🇦 - Christmas 2024

"NHS to review ME services after death of Maeve Boothby O’Neill: Health minister and Nice commit to work to improve patient outcomes after landmark inquest" (The Times): www.thetimes.com/uk/healthcar...

When you can't let the cat go out because he might invade Poland

The Angel Belly of Healing is here to cleanse your timeline. Photo from my collection, ca. 1970s.

A Dark-eyed Junco wearing a snowflake on his cheek ❄️

So excited to finally see this study out in pre-print! This study is the largest of its kind to date: Using data from 4,244 people with #LongCOVID, #MECFS and other complex chronic illnesses, we took hundreds of thousands of data points across hundreds of www.researchsquare.com/article/rs-5... 1/

It's incredibly surreal to be a co-author on this fab paper, looking at predicting crashes with biometrics, with some of the biggest names in this field 🤯 Using this work to improve the Visible morning stability algorithm has also been a big part of my last 6 months! #MECFS #LongCovid

I see over on the toXic place a co-author defending this BMJ review with brazen arrogance, clearly ignorant of medical facts & casually dismissing patient experiences Shows how far these ppl have gone. The Twitterfication of Academia has turned them into shameless internet trolls #LongCovid #pwME

A new BMJ review claims that #LongCovid can be treated using CBT and physical exercise As ever, the devil is in the detail TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted (Too bad they hid the crucial deets in an online supplement!) cc #pwME #MECFS

"Where am I? Who am I? How did I come to be here? What is this thing called the world? How did I come into the world? Why was I not consulted? And If I am compelled to take part in it, where is the director? I want to see him." Søren Kierkegaard

I have started a Starter Pack for ME and Long COVID. 💙 It includes some mutuals with other packs but also some new faces too. :) Please let me know if you want to be added. I know I still have about a million wonderful people to add. 💙 go.bsky.app/6R7bqc7

What life can become for the millions of people living with the medical condition myalgic encephalomyelitis (ME/CFS). When even the most basic everyday activities are out of reach. #pwME #MillionsMissing

Just a gentle reminder that fear of movement doesn’t correlate with cardiopulmonary exercise test results in people with ME/CFS. The cause of exercise/physical activity intolerance in living with PEM/PENE isn’t that they are afraid to move. A 20-year-old study. pubmed.ncbi.nlm.nih.gov/15283620/

People heroically say, “I’ve never let my illness define me” Of course illness defines me. If I hadn’t spent 32 years in bed without effective medical attention I would be a completely different person. Healthy people, you live in a different world, you don’t know it until you lose it. #ME #LC

#ME is a violent, turbulent condition. Words like brain fog, tiredness, aching, mood disturbance, interrupted sleep patterns, do not begin to describe the turmoil of #MECFS bodies. It’s like being attacked by a malevolent being, often for decades and without help or understanding.

Surprisingly poor results from 35 UK Long Covid specialist clinics. The mean scores for fatigue, quality of life and work hardly improved at all. WSAS: baseline: 21.3 - 6 months: 19.1 FACIT-F: baseline: 32 - 6 months: 29.1 EQ-5D-5L: baseline: 63 - 6 months: 64 bmjopen.bmj.com/content/14/1...

You could try our Scientific Long Covid & ME List Nicola? It's work in progress but we're adding researchers & science communicators. You can pin to feed or just search through to find people. bsky.app/profile/did:...

I'm trying to find #ME and #longcovid researchers on here I've found @sunsopeningband.bsky.social @cgatist.bsky.social @profmarkfaghy.bsky.social can you point me to more as it's taking me too long to search. Thanks so much

Here’s the thing with symptom-titrated exercise in #MECFS, friends: 1. You never get away from the energy robbing nature of this disease 2. Never 3. See #1 and #2 If all your patients miraculously seem to improve in response to your special exercise regimen, they’re probably talking to me instead.

A study of income and sick benefits for people with a diagnosis of G93.3 #MECFS confirms the chronicity of the illness. Patients started to lose income three years prior to the diagnosis and remained at a low level for the remaining 9 years of the study. www.sciencedirect.com/science/arti...

In the runup to Xmas it's worth highlighting our book as a possible present for #physios and other #hcps wanting to learn about #ME. I'm still v proud of what we produced and it is still v relevant. @PhysiosForME www.awesomebooks.com/book/9781839...

Quote post with a sunset picture you took yourself

“The silent story for most of us is that we “decided to get better” but couldn’t; started doing a little more each day but had a relapse; tried yet another treatment and found it wanting; and then, having lost everything, built the best life we could from the ruins.”

What kind of joke is this?! #LongCOVID #MECFS www.runnersworld.com/uk/news/a628...

#pwME #pwLC Top ME/LC ally, Professor, researcher, and all round good guy Todd is here! 🙌 Update your starter packs and lists...the transformation is almost complete 😄

I saw a patient last week with ME who in 2023 was told by the MECFS service to ‘get back to the gym’. She did 20 minutes, collapsed and hasn’t walked since. The advice is still out there, still wrong and the harm is real.

Just published: Dr Mark Vink Confirmed: The Conclusion by NICE that CBT is not an Effective Treatment for ME/CFS; Re-Analysis of a Systematic Review www.scibasejournals.org/neurology/10...

Trial By Error: Yet More Stupidity from the Dutch CBT Fan Club (11 November 2023) By David Tuller, DrPH virology.ws/2023/11/11/t... #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

As this post keeps going around, I've been thinking about how we say "look for the helpers" because we feel we can't do anything to help a situation somewhere else. But there are things you can do. Here is a noncomprehensive lift of things I personally have done when I feel paralyzed by the news:

A touching interview with Pauline B., a 19-year-old woman with ME/CFS who has just passed her Abitur exams, graduating from secondary school in Germany. The authorities facilitated her to take exams in her own home. Now she wants to pursue further study, but knows her body will struggle #MECFS

To be A cat

The petition 'Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review' has a new update 'Cochrane's quality control processes are broken' Please sign and share. www.change.org/p/cochrane-w...

I’d bookmark this if you’re a journalist, policymaker, patient, carer, or anyone at all with a connection to long Covid, ME/CFS, and their related illnesses. Concise but a lot packed in, and good refs.

AND HERE IT IS!! This year's Wildlife Photographer of the Year has been awarded to this *gorgeous* picture of a tri-spine horseshoe crab taken by Laurent Ballesta! Absolutely obsessed with how much it looks like some sort of alien spaceship 🎉🌿🧪 www.nhm.ac.uk/discover/new...

Dobre rano

Please help support Australians with ME/CFS by signing this petition. We desperately need GET/CBT removed and PEM added to our guidelines as a mandatory symptom. Our over 20 years out of date guidelines will also cause harm to people with Long COVID with PEM www.change.org/p/australian...

#DecodeME needs more UK participants with an ME/#CFS diagnosis, incl. those diagnosed following Covid infection, & reminds people who have been sent a spit kit to return them. Final date for submitting the questionnaire is 15th November at 5pm www.decodeme.org.uk/portal/ #MEcfs #MyalgicE #PwME

Authors and artists depend on word of mouth. If you've read a good book, tell your friends about it. If you've admired some art, tell your friends where they can see it. Share your enthusiasm and help us keep producing more for you to enjoy.

I'm thinking of planning a podcast episode where people with #chronicillness get to talk about their experiences of living grief. If you'd like to contribute either through a short 5-10 minute conversation, or by recording a voice message, please do get in touch. #MECFS #pwme

To start all over again - again! With this brain of mine, with this disease… oh dear…

Overjoyed to announce my Concise Clinical Review of ME/CFS in Mayo Clinic Proceedings (with updated diagrams!) Very glad to have worked with Stephanie Grach, and Ravi Ganesh and Tony Chon on this! #MedEd #MedTwitter 🧵 www.mayoclinicproceedings.org/article/S002...