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.

Big news #pwME! Prepare yourselves! The initial DNA results from the @DecodeMEstudy will be available in the next few days. Emails will be sent out around 7pm on Wednesday 6th August & results will be published on their website at the same time. Fingers crossed for some momentous results! 🤞🙏

This is Isla at age 8. She died at age 18 with severe ME/CFS. Isla’s mum, who took care of Isla and tried to protect her from abusive medical professionals has been arrested. The state and medical system are trying to blame her for a death resulting from neglect and harmful medical practice.

I have deleted my previous post at the request of @swastrosarah.bsky.social as the family thankfully now have legal assistance. #PwME #MEKills

@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.

Award-winning author and journalist, @georgemonbiot.bsky.social was today joined by 8 fellow Lift The Ban sign-holders and around 200 members of the public in support of the de-proscription of direct action group Palestine Action. Join us on August 9th: wedonotcomply.org

We believe clean air should be accessible to all, and we’re so excited to support Air Library Scotland’s initiative to rent out air purifiers for free across Edinburgh. If you’re in Edinburgh, you can try one out and breathe cleaner air for yourself. Check it out! @airlibraryscotland.bsky.social

We're excited to announce we're now ready to take booking requests for air purifiers in and around Edinburgh! Anyone can borrow & loans are free. Many thanks to @smartairuk.bsky.social for donating a SA600 and a Blast Mini, enabling this initiative! Request form: cryptpad.fr/form/#/2/for...

"The signatories, including the former supreme court justices Lord Sumption and Lord Wilson, court of appeal judges and more than 70 KCs, say that war crimes, crimes against humanity and serious violations of international humanitarian law are being committed in Palestine."

@bmj.com's dangerous & inconsistent approach to #ME + long Covid resembles psych propaganda more than balanced reporting (notwithstanding the "Opinion" header), especially in relation to Professor Paul Garner's long covid "journey", as described in my 2021 post valerieeliotsmith.com/2021/02/01/p...

I've submitted a rapid response to this BMJ Opinion piece - speaking from my dual experience as both researcher and 'recovered ME/CFS patient' (not a term I'd choose to employ).

Nothing new to say this #MEAwarenessDay. My brain’s wrecked, my body’s broken, and after 27 years, nothing has changed: no progress, no treatments, no cure. It's #StillTheSaME and the fury burns. Sending love & solidarity to you all. #LeftToRot

The brilliant PD Avengers are calling for the Parkinson’s community to sign up to their 2025 World #Parkinson’s Day campaign! ⚡ #SparkTheNight will see landmarks across the globe lit up in blue in solidarity for World Parkinson’s Day. 👉 Find out how you can get involved: https://buff.ly/4hwNvaF

Our next online support meeting for #LongCovid patients (& parents) is next MONDAY 10TH FEBRUARY AT 7PM. No need to register. Just click on the zoom link below Join Zoom Meeting us06web.zoom.us/j/86731632565?… #Irelandn#LongCovidKidsds Meeting ID: 867 3163 2565 Passcode: 931955

Petition update! "Last week the Severe ME Advocacy Group heard from Line in Denmark that the psychiatrists had dismissed our letter as being from "uncredible sources"." @exceedhergrasp1.bsky.social & others have now made submissions. Please keep signing & sharing. www.change.org/p/prevent-fo...

Great to see @batemanhornecenter.bsky.social here! #PwME #pwLC

open.substack.com/pub/immuneil... Black condemned the physicians, insurers, politicians, and media that were indoctrinated in the “biopsychosocial (BPS) doctrine” of ME/CFS, which portrays patients as delusional.. Calling this doctrine “a fraud” used in “gaslighting”.. "cost effective"..

I can’t even. @juliadoubleday.bsky.social gets it. Our approach to respiratory infections makes no sense. It’s been made to be all about what’s not too hard, not what’s right.

Exciting news! Visible Armband 2.0 is now available. 🔋Longer battery life, easier charging! Donate your old device to support the community, donation programme will be facilitated by @actionforme.bsky.social @longcovidsupport.bsky.social. Details 👇 #pwME ##pwLC www.makevisible.com/blog/introdu...

We have written a blog article that summarizes the problems with the BMJ review on Long Covid interventions (Zeraatkar et al. 2024). Inconsistency in how imprecision was evaluated seems to be the key issue. Suspect that a correction will be needed. mecfsskeptic.com/the-bmj-revi...

No #pwME wants to feel they have no choice but to sign this petition but we've been let down so badly that it's come to the point where this petition has been made necessary. Please sign & share if you feel the same way ✍️🔄 #ME #MEcfs www.change.org/p/me-associa...

Here is a link to a video about Ron Davis and Rob Phair’s work on the itaconate shunt with the scientists at the University of Utah. We spoke to the Bay Area MECFS support group and it was recorded over Zoom. drive.google.com/file/d/1rKf1...

paywalled. @abrokenbattery.bsky.social usually rescues us :-D

chng.it/K8cKmwdw75 A petition asking Riley to do what any honourable person would have done already. I am so sorry the MEA has to be shamed this way. We all expect charities are a force for good. Corruption has to be checked, like rot.

Please share widely! This was the best an inquest could do. It took 4 years and the death of my only child to get here. NHS England must keep to this promise; the simplest change to a long established narrative that killed Maeve and threatens every other person with #ME. 🙏 @gwynnemp.bsky.social

Remembering Refaat Alareer. 23 September 1979 – 6 December 2023 #FreePalestine #EndGazaGenocide #CeasefireNOW #Gaza

If you’d like to support our tiny non-profit, please order our beautiful Christmas cards! We’re running a huge campaign about the NHS at the moment+our small team is working our socks off! 117 MPs already involved 😮🌟💙. Every order helps power our work! ad 👉 shop.everydoctor.org.uk/collections/...

Brilliant 30min talk by David Osborne talking about PPE, the catastrophic failures to protect frontline workers during the pandemic, reflections from Module 3 of the COVID inquiry and lessons for the future. www.pslhub.org/learn/invest...

So roughly 30% of LC Kids are still stuffed at 2 years... Re-infections make this considerably worse. WTAF are we doing to the children of our world? doi.org/10.1038/s438...

In PEM from advocacy last few weeks but just coming on to share this follow up letter and petition to ME Association calling for accountability and action. www.change.org/p/me-associa...

A 5-page CDC ME/CFS program update www.cdc.gov/me-cfs/media... has just been posted to the CDC website www.cdc.gov/me-cfs/event... in advance of the meeting in less than 2 hours #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #Pots

The UK has been forced to review exports of F-35 warplane components after admitting Israel “not committed to complying” with international law. @glanlaw.bsky.social #CeasefireNOW #Gaza #Palestine #GazaGenocide #GazaCeasefire ##FreePalestine www.glanlaw.org/single-post/...

"We don’t teach about genocides in order to realise it retrospectively. We teach about it in order to prevent it and to stop it. But like in every other case of genocide in history right now we have mass denial. Both here in Israel and around the world. Amos Goldberg ##FreePalestine

Update MEA! "We have been in communication with Mr Riley and other trustees since submitting our motion. There have been times when emails to us have not been clear or straightforward." Please read the statement from @lammasleaves.bsky.social @nickyproctor.bsky.social #MECFS x.com/lammas_leave...

Instead of buying Christmas cards I've made a donation to #CareForGaza. Even a small amount can make an impact. Your support will make a tangible difference, helping to provide vital resources, shelter, and services to improve lives. #FreePalestine #GazaCeasefire www.gofundme.com/f/ezkdc-help...

Death is natural, but death by PEM is preventable. PEM is also widely recognised as the signature by which disease progression will be understood. If you have #ME or a similar post infection illness, or are providing services to anyone who has #PEM (paid or not) do your best to learn about it.

In the most incredible company tonight at The Inclusive Awards. Rather shocked but proud to be named in the UK Diversity Power List 24/25 😱

Nigel Farage has his sights on abortion rights. This signature to decriminalise abortion has passed 9k signatures, nearly enough for a response. Please sign and share.

I’m a disabled person living in Canada. My conditions are incurable - but there ARE treatments. I would be considered a “high cost health user” because I’m medically complex. The first time a doctor brought up assisted dying - it was in response to my requesting an expedited GI consult /1 🧵

Sending Dr Claire Taylor the best of luck for the GP Awards on Friday. Her dedication to helping #LongCovid & #MECFS patients is truly inspiring. She's made a significant difference to countless lives. Grateful for her kindness, compassion & advocacy. #ThereForME events.cogora.com/generalpract...

"The propaganda campaign that has been imposed on all of us, has spread everywhere, has been skillfully managed, and has become very effective in it's threats to punish & disempower those who speak out." Moving words from #JulietteStevenson #FreePalestine #Gaza #CeasefireNOW youtu.be/sLkrBmV1mgs?...

"Let's not rest until a ceasefire is achieved. Let's not rest until international humanitarian law is reinstated. And let's not rest until the world recognises that a Palestinian life is as miraculous and precious as every other human life on this planet." #FreePalestine youtu.be/sLkrBmV1mgs?...

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

@lbc.co.uk presenter @natashadevon.bsky.social is #ThereForME! Her message: “For people affected by ME and Long Covid, please know that you are in my thoughts this Christmas and I will continue to advocate for you whenever I can. Sending you so much love, Natasha Devon” #pwME #pwLC

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

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/

Lately, I’ve been reflecting a lot on neurological symptoms of #LongCovid & #me, especially the cognitive ones. Brain fog, memory issues & trouble concentrating feel relentless. What helps you manage #BrainFog or #Cognitiveissues? Let’s share tips and support each other.

Brilliant to see the APPG on ME back up and running! We’re looking forward to working with @actionforme.bsky.social to share updates from the APPG via our #ThereForME substack.

⏰ Only 48 hours to go! Double your impact by donating through the BigGive link. Save the date and let's hit the target together! donate.biggive.org/campaign/a05... #fundraising #christmaschallenge #christmasfundraising #longcovid #longcovidkids #supportus #donate

I want to thank #ThereForME not only for their brilliant advocacy but for joining in the community fully. Liking and reposting offerings from other #MEcfs sufferers on all platforms. Most orgs of any sort hold themselves apart, they post their post and retreat. Community is all💙