Long Covid Advocacy

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We had a prompt response from Pulse Today this morning stating they are investigating & have temporarily removed the program by Miller. We hope they do the right thing

Thank you to all who mobilised swiftly on this esp @kschnickelfritz.bsky.social @michaeltikus.bsky.social Naomi Harvey & MEFoggyDog

A member of the community @kschnickelfritz.bsky.social has written an excellent template to send to your MP about the Pulse Today Course
👇
💌 tinyurl.com/4bf386jc

If you can write directly to Pulse Today email is:
📧 support@pulse365.uk

Pulse Virtual March Agenda GPs are invited to the Pulse Virtual March Agenda where experts discuss public health and chronic conditions. Grow in confidence and gain up to 10 free CPD for your portfolio

Here is the full agenda of the event - @docstrain.bsky.social is also talking about high risk Covid. Someone needs to have a serious word.
No surprise to see a BPS agenda towards chronic pain, fibro & 'nociplastic' pain. 🤦‍♀️
events.cogora.com/pulsevirtual...

It's all in who you know 😔

We have written directly to Pulse Today & will inform the community if we get a response.

A screenshot of a purple-themed announcement text inviting General Practitioners (GPs) to a free virtual event on March 24th titled "Pulse 365." The text highlights a session on "ME/Chronic Fatigue Syndrome – not just tired all the time" presented by Dr. Alastair Miller, a consultant physician at the Royal Liverpool University Hospital. It notes the event aims to support GPs in confident decision-making, earlier diagnosis, and management, following a Department of Health and Social Care announcement regarding the key role GPs play in caring for patients with mild and moderate ME/CFS.

⚠️ We have serious concerns about Dr Alastair Miller running a GP course for MECFS Diagnosis & Management for Pulse Today.

Miller is:
🔹ex-chair of BACME
🔹reviewer of PACE
🔹GET researcher
🔹anti-NICE

🖇️ tinyurl.com/muvtjbda
📧 support@pulse365.uk

A profile view of a majestic tiger with orange and black stripes and white fur around its chin and ears. The tiger is looking to the right against a soft-focus green background. White text overlaid on the bottom half of the image reads "Big Cat Activism," followed by "Reflections on Year of the Tiger by Alice Wong" and "Long Covid Advocacy" in italics. A small white logo is in the bottom right corner.

Our new article in honour of Alice Wong purruses:

🐯 Big cat vibes
🌋 Anger as love

Two key themes of her writing in 'Year of the Tiger'

Roar!

🐾 tinyurl.com/5e8d7fec

My first science video in 3 years How is it possible that this photo was taken at night?! Support Dianna and the Physics Girl team at patreon.com/physicsgirl http://physicsgirl.org/…

Wonderful to see Dianna Cowern's @thephysicsgirl.bsky.social first video up after 3 years.

Sending all our best and that she is able to continue 🙏

@sharonhodgsonmp.bsky.social has been named Secretary for Public Health & Prevention.

Sharon used to be co-chair on the APPG for ME c.2020 and has tabled numerous parliamentary questions about Long Covid and ME.

A positive step forward. Congratulations Sharon!

See links 👇

publications.parliament.uk/pa/cm/cmallp...

Written questions and answers - Written questions, answers and statements - UK Parliament Information from UK Parliament on written questions & answers, written statements and daily reports.

questions-statements.parliament.uk/written-ques...

www.parallelparliament.co.uk/question/166...

www.parallelparliament.co.uk/question/811...

@sharonhodgsonmp.bsky.social has been named Secretary for Public Health & Prevention.

Sharon used to be co-chair on the APPG for ME c.2020 and has tabled numerous parliamentary questions about Long Covid and ME.

A positive step forward. Congratulations Sharon!

See links 👇

More on OMf's bold BioQuest Study
👉 1000 samples
👉 Wide omics approach
👉 Cohorts of ME, MS, Burnout, Long COVID, depression to filter out bio signals of fatigue
👉 Hope to produce 5-20 biomarkers to identify subsets
👉 Phase 1 of 3

Good article 👇

Graphic with a dark blue background and pink and cyan accents titled "PROGRESS WORTH CELEBRATING." Large pink text reads "GOOD NEWS: Major breakthrough for ME/CFS research" with a party popper emoji. The main text announces that DISCOVER-ME, co-led by Prof Carding, has received €7.5 million in EU funding. It involves 21 international partners studying 2,000 patients to deliver biologically validated disease classification, actionable biomarkers, AI-driven stratification, and foundations for precision trials and drug repurposing in ME/CFS. The Long Covid Advocacy logo is at the bottom right.

Some good news!

We do (🤞) seem to be at a turning point of decent research being funded for #ME

See S4ME forum post for more details:
🖇️ tinyurl.com/msbft7e6

Promotional graphic for LONGCOVIDADVOC.SHOP featuring a fluffy ginger cat sitting in green grass, reaching one paw up toward large, white, hand-drawn text that reads "FREEPOST" decorated with paw prints. Below the cat, a white box says "All Orders, All Weekend" above three small t-shirt icons on hangers. The website address is displayed at the bottom on a black banner.

💌 Last FREEPOST before Long Covid Awareness Day
You can get gifts, & advocacy boost tools like stickers, postcards, t-shirts 😎

🖇️ longcovidadvoc.shop

Not sure about it being generated by RECOVER. There was a Long Covid cohort in the DecodeME study that looked at the genomic data. And LC is also being included in the SEQUENCE ME and Long Covid study that has just gone into its first phase.

Endless Horizons Book Club | Join & Read on Fable Join Endless Horizons on Fable. Connect with readers, discuss books, and explore curated reading lists.

📚💙 A member of our book club on Fable has set up her own space, 'Endless Horizons' for teens living with disabilities to help build community and connection.

If you know a disabled teen who would be interested here is the link! 👇

Inside Health - Is the tide turning on ME research? - BBC Sounds The new wave of ME research that could bring clarity to this perplexing condition.

Full episode. There is discussion too on how Long Covid proved an impetus to seeing the impact of long-term viral infection.

Thank you to all involved 💙
www.bbc.co.uk/sounds/play/...

Every piece of media that frames the science & perception of ME as moving on - is important.

A section here on how ME predominantly affects women.

Although when asked about why ME has been dismissed the psychiatrists were given a free pass.

#medicalmisogyny

Psychologisation 101 Definitions, Distinctions, and Why It Matters

If someone has sent you the 'brain training' article in the @theguardian.com (yes, while Savannah is being medically abused in a UK hospital 🙁) in hope of you being 'cured' - you can send them back any one of our articles on the subject.

Psychologisation 101 👇
open.substack.com/pub/longcovi...

Ah okay - deleted.

a white bread sandwich with baloney in and crisps on the side. A post by Long Covid Advocacy

🥪Beware if someone serves you a baloney sandwich:

Bread = Lots of über praise about how they believe you, your symptoms are 'real'
Filling = Then comes the psychologising!
Bread = More sympathy on how the illness has been dismissed & the stigma etc.

💣 Medical love bombing is medical gaslighting.

A promotional graphic for a book club featuring the book cover of "Unwell Women" by Elinor Cleghorn on a dark blue background. The book cover depicts an illustration of a woman’s back merged with an anatomical skeleton, surrounded by large orange and red lilies. The title reads "UNWELL WOMEN: A Journey Through Medicine and Myth in a Man-Made World." Surrounding the book are several teal-colored arrows pointing toward it with descriptive text: "Compelling," "THE history of gaslighting," "So many Aha moments," "Medicine exposed," "Hysteria in context," and "Awesome."

It's nearly March which means spring book club!

We will be reading the utterly brilliant book 'Unwell Women' by Elinor Cleghorn.

Join us on Fable for chat & connection 💙📚

🖇️ tinyurl.com/3r2ctufh

Thanks for the share Ben

So sorry to hear this Veronica. Adding an extra burden of self blame is at the heart of the harm of these approaches. 💙

A screenshot of a text document on a purple background under the heading "Summary." The text criticizes a healthcare document regarding ME/CFS, stating it fails to move toward an evidence-based approach and serves the interests of BACME members rather than patients. It argues that current policy lacks an evidence base, perpetuates patient distrust, and that resources should instead focus on medical care for severe cases and establishing a specialist medical "home" with a research base to improve patient outcomes.

✉️ Strong Open Letter from Bull, Edwards & Crawford in response to BACME's 'Guide to Therapy' 2025.
👉 Dysregulation theory speculative
👉 Vague active therapy rec that serves BACME more than patients
👉 Deceptive jargon

In essence = BACME should be shut down

🖇️ tinyurl.com/373hbbc5

An image titled "PROGRESS WORTH CELEBRATING" announcing that Phase 1 of SEQUENCE ME + Long Covid is now funded for two years. The text explains it is a bold study exploring root causes through large-scale, whole genome sequencing, building on the DecodeME study. It notes the proposed £20 million study is the largest for any disease and still needs funding. The bottom features a "LONG COVID ADVOCACY" logo with a purple and blue gradient hand icon.

🎉 Some Good News with the launch of SEQUENCE ME & Long COVID.

Led by Ponting & Birney, this bold study is exactly the direction research needs to take.

More details & donation link on Action for ME website:

🖇️ tinyurl.com/mr96dxj4