Clare Daly

Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome Research could offer hope for ME patients – but some experts urge caution and say more studies needed

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...

Possible genetic clues to ME/chronic fatigue syndrome identified in massive study DNA analysis of more than 15,500 people with the debilitating condition identifies eight tentative “genetic signals”

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

Dark blue background with image of DNA helix. At the top of the DecodeME ‘the results’ logo. Two spotlights shine on a speech bubble that says ‘Initial DNA results’. To the right of this is an image of a research paper. At the bottom of the graphic it says ‘Wednesday 7pm BST’.

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 Weeknight evenings (USA time)
2️⃣ Weekend day (USA times)
3️⃣ Weekend evening (USA times)
4️⃣ Any/ just show me results

📊 Show results

Really nice idea!
FYI for anyone that might be interested, there is also a Visible Facebook group already which is run by volunteers.

A partial screenshot of Visible’s Health Report PDF showing two graphs plotted using my Morning Check-in data. The graphs show my 2-week moving average Resting Heart Rate and Heart Rate Variability over the year.

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

YouTube video by Broken Battery SKY News Karen Gordon

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?...

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 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

Screenshot of abstract

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.

Living with ME Nine people with ME reveal their unremitting struggles as they negotiate life with their illness, including their battles to be believed, diagnosed and supported.

📷 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...

Image with a dark background. At the top is the header Long Covid Support statement on the Get Britain Working White Paper. In the upper right hand corner is the news headline saying Biggest employment reforms in a generation unveiled to Get Britain Working again. There is a quote in the centre which says The issue of employment, welfare and health cannot be addressed without urgently addressing ongoing Covid-19 infections, public health and Long Covid, as a matter of national policy. Below the quote is says Read our full statement at: www.longcovid.org/impact/news Our Long Covid Support logo is shown and below that it reads Long Covid Support is a registered charity in England and Wales 1198938.

📣 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

On a bright orange background sits a dark blue Christmas tree, decorated with sparkling fairy lights, baubles and a star on the top. It sits on the ground, which also looks like a “programme loading” bar. Underneath are the words “Coming soon…”

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

#ComingSoon

I’m so sorry to hear this Dan. But exactly my experience going from being a kid with ME in the 90s to an adult with LC in 2020. Next to no change in quality of care.

Gordon Brown: improve end-of-life care rather than allow assisted dying Former PM, whose daughter died aged 11 days, says debate is moving too fast and calls for commission into palliative care • We need better end-of-life care, not assisted dying | Gordon Brown The former prime minister Gordon Brown has declared his…

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

#5. How our understanding of ME/CFS, fatigue and pain has progressed over the past decade with Lucinda Bateman M.D. Podcast Episode · Make Visible: Understanding Complex Illness · 20/11/2024 · 56m

New Make Visible podcast episode featuring Lucinda Bateman, MD.

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

A stylized green and purple rendering of a photo of Beck Levy performing before COVID-19. The text reads, “THE SICK TIMES: Missing the gig: When your subculture leaves you behind with Long COVID. By Beck Levy.”

A black background white white text and purple accents reads, "I thought our deal was fuck the state, we’ll do it our way. I found myself slipping through the subcultural safety net that exists for outcasts who are slipping through the cracks of mass culture and late capitalism. - Beck Levy, Missing the gig: When your subculture leaves you behind with Long COVID."

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

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.

ALT TEXT: Shot from Avatar the movie. It shows 2 blue people who are on flying green monster birds in the BlueSky.

🦋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.”

Press release: The Sick Times announces one year of covering the Long COVID crisis - The Sick Times “Our reporting on Long COVID remains as vital today as it did when we launched,” executive editor Miles W. Griffis said. “Many of our colleagues in the media continue to minimize the disease and the o...

The Sick Times--a digital long-COVID newspaper--is 1 yr old today. I couldn't be prouder of what Betsy, Miles, and their team have accomplished. thesicktimes.org/2024/11/14/p...

If you have the means, pls join me in supporting their end-of-year fundraiser. the-sick-times.fundjournalism.org/donate/

Economic burden of Long Covid in the UK estimated to be >$20 billion per year from real cohort data
bmjopen.bmj.com/content/14/1...