Arthur

In our case Maeve was diagnosed at 17. It took 4 years to obtain. There were no Safeguarding referrals because she didn't miss any schooling. She loved to learn and was a joy to teach.
She was known to our specialist NHS CFS service for 7 years. They had nothing to offer but agreed to keep her
1/2

Thanks to Emily Dugan and the Sunday Times for exposing this aspect of how Maeve died from ME. A Devon County Council cover up. Maeve was taking them to judical review, dying in the attempt.
Devon County Council may have learnt nothing from the inquest. I have learnt a lot about them.
1/4

#MaeveInquest #MEAssociation #SevereME @swastrosarah.bsky.social

Another huge #ME/CFS scandal story in The Sunday Times today , 10th August 2025. By Emily Dugan.

Online here (£, of course!)
www.thetimes.com/uk/healthcar...

How it looks in print
👇

Emily said the online version will be given more space. Huge thanks to her & the Sunday Times (@thetimes.com) for giving this aspect the exposure Devon County Council so successfully covered up. Their right of reply says it all. Maeve was taking them to judicial review. Died trying. #MaeveInquest

🚨!!PLS SHARE & TAG #pwME !!🚨
@natashadevon.bsky.social TONIGHT on @LBC 7-8pm
Re: @decodemestudy.bsky.social asking; 'Were you told it was in your head, and if so what do these findings mean to you?'
Tel/WhatsApp 0345 606 0973
SMS 84850
#MECFS #MyalgicEncephalomyelitis
#SevereMEDay #LongCovid

Some of the best metaphors come from this team. Buried treasure is what #ME represents for any genuinely interested biomedic. It's wow territory in so very many ways. All that is needed is the courage to invest in exploration of the map @ashleydaltonmp.bsky.social

Huge congrats to Chris Ponting and the whole Decode ME team on their preprint on #genetics of people with #MECFS!

Pre-print plus li'l video before we get into a deeper dive.

Vid: www.youtube.com/watch?v=0S5u...

Preprint: www.pure.ed.ac.uk/ws/portalfil... 🧪 🧵

Graphic 1 of 4. DecodeME: The Results graphic. At the top in bold lettering, it says ‘Main Findings’. Beneath this it says ‘Your genes contribute to your chances of developing ME/CFS. Other key findings are on the following slides.

Graphic 2 of 4. DecodeME: The Results graphic. The slide says ‘People with an ME/CFS diagnosis have significant genetic differences in their DNA compared to the general population’. Beneath this is an image of a DNA helix and a magnifying glass.

Graphic 3 of 4. DecodeME: The Results graphic. The slide says ‘These lie in many places across the genome, and do not impact just one gene’. Beneath this is an image of a DNA helix and graphs.

Graphic 4 of 4. DecodeME: The Results graphic. The slide says ‘Eight genetic signals have been identified. As DNA doesn’t change with ME/CFS onset, these findings reflect causes rather than effects of ME/CFS’. Beneath this is a blue magnifying glass with a DNA helix.

(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more.

These findings reflect the lived experience of thousands of #pwME.

Thanks to all our participants & supporters who made this possible!

Read a summary of our results: shorturl.at/pgsjk

BBC Radio 5 Live - Nicky Campbell Nicky Campbell takes your calls on the day's talking points.

After the release of our initial DNA results last night, Nicky Campbell's Five Live radio programme will cover ME/CFS this morning, we expect around 10am www.bbc.co.uk/programmes/m...

The Management Team are delighted to announce DecodeME’s initial DNA results & discuss what this means for #pwME & future research.

A huge thanks to all our participants for giving their time, energy & DNA to the project.

Learn more about our findings: shorturl.at/XOVJ1

DecodeME: The Results announcement post. The graphic has a blue background with a DNA helix. In the centre of the graphic it says ‘We have released our initial DNA results! We have discovered that your genes contribute to your chances of developing ME/CFS.’ At the bottom left of the graphic is an image of a research paper.

Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population.
-
Summary of our results: shorturl.at/pgsjk
Check out our full preprint paper: shorturl.at/VwN3s

DecodeME Logo Hello Tom We are writing to let you know that the initial DNA results from the DecodeME study will be available in the next few days. We plan to send you an email with our findings on Wednesday 6th August around 7pm. We will also be announcing the results on our website at this time. We're letting you know the timing in advance so you can pace yourself if needed. Thank you for your continued support and we look forward to sharing more very soon. Warmest wishes, The DecodeME Team

Exciting!

DecodeME: "the initial DNA results from the DecodeME study will be available in the next few days"

www.decodeme.org.uk

#MEcfs #PwME #CFS

Stock Photos — Deutsche Gesellschaft für ME/CFS Professional stock photos of people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for free press usage.

The German Association for ME/CFS provide these stock images:

www.mecfs.de/stockphotos/

Correct. It would save money. As the inquest heard NHS England refused to do so, despite being asked on 3 separate occasions because other people were at risk like Maeve. I have it all in disclosure. DHSC is aware. @ashleydaltonmp.bsky.social

Update from Isla’s mother @swiftsandswallows.bsky.social , “We are very grateful for the overwhelming support from the ME community, it honestly means such a lot. For now though we need time to digest what's happened, to regroup and to catch up on sleep.”

This conversation provides some additional context. @swiftsandswallows.bsky.social is Isla’s mum

x.com/swiftsswallo...

It will fail but criminal investigations are horrendous in a situation like this.
A 15 year old (who saw her elder sister die having been made more unwell by the people she will rely on as the disease progresses) forcibly removed from hime. No wonder people suicide @alastaircampbell2.bsky.social

Coming soon

Please boost—this is terrifying. For those who don’t know, Sarah lost her daughter to very severe ME after the disease was disbelieved/mistreated by doctors. Isla died in similar circumstances & now her mom has been unjustly arrested & her sister who also has ME has been taken & is in serious danger

This is horrific.
Isla's Mum and I have been following each other for a long time.
The family has suffered terribly:
Severe mistreatment and neglect, and Isla's death last year.
Separating Isla's younger sister from her family's care further jeopardises her health.

@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.

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

Patients with severe ME/CFS deserve better than unproven theories

My rapid response at BMJ is online now. I joined the chorus of protest about an opinion piece claiming people with severe ME/CFS can recover by "reframing their beliefs" &c. People with ME/CFS deserve so much better than that:

www.bmj.com/content/389/...

#MECFS

Not ALL in Your Head? Think Again A Campaign Guide for the Bait and Switch Tactic

📢 Our Campaign Guide is out!

It deals with common media traps that we need to know how to deal with

🗣️ Part One covers the ‘Bait & Switch' tactic: ‘Its not ALL in you Head But…’

Easy-to-read download & audio included

💌 Help us shift the paradigm and share away!

Not All in Your Head? Think Again A Campaign Guide on the Bait and Switch Tactic

Thank you @longcovidadvoc.com for another excellent guide on how to combat the harmful rhetoric with nuance and precision

longcovidadvocacy.substack.com/p/not-all-in...

Medical Training Online Training Modules NHS Learning Hub - ME/CFS Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) elearning Access Requirements - You will need to create a General User Account You will...

I’ve provided a summary of where to find the first two modules and how to create your account here:

mehub.uk/medical-trai... Medical Training – ME Hub

Donate to Happy Birthday to M.E. (Part III) , organized by Rory Preston Welcome to my birthday fundraiser for 2025! This is my third year raising funds to… Rory Preston needs your support for Happy Birthday to M.E. (Part III)

Happy Birthday @rorpreston.bsky.social! Please consider donating to Rory’s birthday fundraiser, the money raised is going to @crunchme.bsky.social

www.gofundme.com/f/rory-birth...

The third module is about severe and very severe ME - my area of interest. It is not currently listed and has not been reviewed by the patient community. Only email addresses with an institutional suffix can access it. Where is it and what does it say?
3/3
learninghub.nhs.uk/catalogue/me...

thank you David @davetuller1.bsky.social I submitted it twice, asking for acknowledgement second time but no reply, so I've written to the Editor in Chief asking, "Please explain why the BMJ is commissioning and publishing misinformation specifically on Myalgic Encephalomyelitis?"

The BMJ has not published a rapid resopnse from Maeve Boothby O'Neill's mum, @swastrosarah.bsky.social‬, to its ME/CFS "hope" propaganda piece from members of the biopsychosocial ideological brigades. So I have posted it here. virology.ws/2025/07/23/t...