ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...

Science magazine’s coverage of the DecodeME initial results : www.science.org/content/arti...

The initial DNA results from DecodeME are coming this week! We will release them on our website on Wednesday 6th August at 7pm (approx).

We're letting you know the timing in advance so you can pace beforehand.

Thank you to our participants & supporters.

Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights

🗞️1/4. Piece on BBC North West on closure of Cheshire & Merseyside #LongCovid Clinics, including comments from our Trustee @margaretohara.bsky.social:

“Just because it’s not convenient for the ICB or it’s too expensive, it doesn’t mean we have ceased to exist”

(Video in 4 parts ⬇️)

#CovidIsNotOver

I want to start a regular chat to chat about #Visible heart rate #pacing app for #mecfs / #longcovid! If interested, when is good for you? Can also be done not live

1️⃣ <a href="https://poll.blue/p/A8Vu2i/1" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link" target="_blank" rel="noopener" data-link="bsky">Weeknight evenings (USA time)
2️⃣ <a href="https://poll.blue/p/A8Vu2i/2" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link" target="_blank" rel="noopener" data-link="bsky">Weekend day (USA times)
3️⃣ <a href="https://poll.blue/p/A8Vu2i/3" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link" target="_blank" rel="noopener" data-link="bsky">Weekend evening (USA times)
4️⃣ <a href="https://poll.blue/p/A8Vu2i/4" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link" target="_blank" rel="noopener" data-link="bsky">Any/ just show me results

📊 Show results

A second year of tracking my morning HR and HRV with Visible.

SKY News segment on #MECFS (20 mins), Includes interview with Heather Gordon, whose daughter Karen has effectively been trapped in hospital for a year with severe ME. Also features Chris Ponting and Anna Gregorowski from BACME.

youtu.be/FX6Fk9-WSmo?...

"The NHS is carrying out an assessment of myalgic encephalomyelitis...Andrew Gwynne, the health minister, has committed to better research “with the aim of better understanding the causes, identifying new treatments and improving patient outcomes”." #mecfs #cfsme

www.thetimes.com/uk/healthcar...

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/

Strong new evidence for T cell exhaustion in myalgic encephalomyelitis (ME/CFS) reflecting chronic viral infection, relevant to #LongCovid, and possible path to treatment candidates
www.pnas.org/doi/epub/10.... @pnas.org

Smartphone-based monitoring of heart rate variability & resting heart rate predicts variability in symptom exacerbations in...complex chronic illness

www.researchsquare.com/article/rs-5...

"higher HR & lower HRV conferring risk for crashes, fatigue, & brain fog"
#MEcfs #CFS #PwME #LongCovid #PASC

In case it helps, here’s a link to our one-pager on how to use heart rate for pacing. workwellfoundation.org/wp-content/u...

Hey, cool! The predictive basis for the model for biometric pacing we’ve been working on for almost the past 20 years at @workwellfoundation.bsky.social and that we shared early on with the kind folks at Visible seems to hold up well within a large dataset. Replication needed but good to see.

📷 Beautiful & emotive photo exhibition with testimony at The Wellcome Collection of #pwME by Jeremy Jeffs

Will let the photos do the talking in this 🧵
wellcomecollection.org/stories/livi...

📣 Long Covid Support responds to Government's Get Britain Working White Paper!

Read the full statement here:
www.longcovid.org/impact/news/...

(Link to Government’s pages in comments.)

#LongCovid

Make sure you’re following #ThereForME on our new social media accounts!
You can find links here: linktr.ee/ThereForME

#ComingSoon

Gordon Brown: improve end-of-life care rather than allow assisted dying

New Make Visible podcast episode featuring Lucinda Bateman, MD.

podcasts.apple.com/gb/podcast/m...

Before COVID-19, Beck Levy was a hardcore punk rock performer. Now, she has severe #LongCOVID and has watched her place in the world creep away from her. This week at The Sick Times, read Beck’s essay about what it feels like when your subculture leaves you behind. bit.ly/3V0KJBv

A cutting board costs me $75 – it might cost you $10. What to know about the ‘disability tax’: Research shows disabled people need at least 28% more income than non-disabled people for a similar living standard
www.theguardian.com/wellness/202...

“'Complete betrayal': Nurses who contracted long Covid still waiting for access to financial support”

www.itv.com/news/2024-11...

Remember: you’re working with abnormal physiological systems that have lost the ability to recover and adapt to stimulation. Telling patients to do more on any kind of schedule—externally referenced, symptom-titrated, etc.—loses sight of this *basic fact* of PEM/PENE to the detriment of the patient.

🦋NAVIGATING THE BLUESKY 101
We've been Sky Geeking so you hopefully don't have to.
Our first (proper) thread will cover:
CULTURE; ACCESSIBILITY; ALGORITHM; ENGAGEMENT; FINDING YOUR TRIBE; TWEAKS; COOL TOOLS; FUNKY BISCUITS 🧵1/18

“Very few moved from no or very low wage incomes to median wages.”