Michiel

International Society for Mast Cell Activation Syndromes (ISMCAS) ISMCAS is a global, multidisciplinary professional society committed to advancing care, research, and education for mast cell activation syndromes and related disorders.

🚨MCAS: EXCITING NEWS & SURVEY OPPORTUNITY🚨

Dr Larry Afrin & MANY others have been working behind the scenes for years trying to improve the mast cell activation syndrome situation. The work has paid off & we now have an International Society for MCAS: ismcas.org 🧵

when dealing directly with the parents, sure.

Making excuses for them on social media is something else altogether. Especially when billing yourself as "public health guy"

It shows how he values the lives of children of anti vaxx parents (he doesn't).

covid is proving public health is a sham.

it’s because of people like this piece of shit with over 30k followers telling people “it’s ok if you question vaccines” that we have children dying of preventable diseases

In 🇦🇹 there are an estimated 44,000 people of working age who are unable to work due to severe PAIS, including ME/CFS (estimate based on international prevalence studies extrapolated to 🇦🇹).
1/6

Oh yeah did I mention the UN special rapporteur on extreme poverty who found the UK in breach of international human rights laws for how it treats its own citizens?

life expectancy is only one of MANY stats that show how badly we're all doing; while almost everybody is desperate to pretend this is not the case and everybody keeps getting reinfected, making it worse.

the same as everywhere else: unfettered spread of airborne virus that damages our immune systems.

Worse in the UK due to 16 years of continuous disinvestment in healthcare & social security under tory & labour austerity; plus brexit made a lot of european NHS staff leave the country.

YouTube video by NPR Music Hermanos Gutiérrez: Tiny Desk Concert

Have their Tiny Desk concert.

💜🙏🏻

How democratic is the UK? The UK has a crisis of democracy

UK democracy in action

The state unable/unwilling to provide people with clean water, timely healthcare, social care, decent housing, pension, affordable education, energy, decent roads.

Corporate profits guaranteed through PFI, privatisations, outsourcing, subsidies, regulatory inaction.

Oh go on, twist my arm. *hits play*

with alt - everybody needs to see this.

Their tiny desk is SO. GOOD.

"This is a life and death story for the UK – so why is it being brushed under the carpet?"

Healthy Life Expectancy at Birth Plummeting. 📉

It is a hideous scandal that they can publish a chart as obvious as this and not even mention the words 'covid infections'.

A few days ago we announced 200,000 members.

The Green Party has 215,000! 🚀

Join us making hope normal again:

Join.greenparty.org.uk

This is live, friends!

I’m thrilled to have my first collaborative piece in here, written with @kathrynreese.bsky.social

www.engineidling.net/current

The cartoon series is called - This Weekin Disbelief A man and woman are sitting opposite each other in armchairs - the man is Simon Wessely, the woman is asleep. The title says “TWO pathogens cause suffering in people with #ME...” The caption says “...the worst one isn't even a virus!” The cartoon maker is #FanningTheFlames

#ThereForME
@theguardian.com
@davetuller1.bsky.social
#ME #Chronicillness #LC
#PEM #POTS #LivesWeCannotLive
#MissingMillions
@meassociation.org.uk
@longcovidsupport.bsky.social
@davidjoffe64.bsky.social
@nhsengland.bsky.social
@thelancet.com
@rcgpt.bsky.social
@cgatist.bsky.social

Congratulations to @sharonhodgsonmp.bsky.social on her new role Minister for Public Health and Prevention.

Sharon has been a strong supporter of people with ME/CFS and has spoken in a number of parliamentary debates. Here are some highlights from a debate in 2019.

"Those with ME have experienced years of being treated unjustly. Sometimes, it feels endless and irreversible. But remember this: getting things done in parliament starts with having MPs on your side." Tessa Munt MP. New #ThereForME Substack post.

We're delighted to share today's #ThereForME blog from friend of the campaign @tessamunt.bsky.social.

In her blog, Tessa lays out the case for change and how to get involved.

Link in next post 👇

NHS official pushed to add patient data to Palantir platform whilst also advising company

A lobbyist who worked directly for Peter Mandelson, on the Palantir board, and on the board of *four* NHS trusts.

Lobbying the NHS to hand over even more patient data to Palantir.

This absolutely stinks. Get Palantir out of the NHS. Sign my petition:

you.38degrees.org.uk/petitions/st...

the same they have done all along.

Nothing.

@sharonhodgsonmp.bsky.social @tessamunt.bsky.social its now been over 75 days since she last ate. Please do something to save her!

@sharonhodgsonmp.bsky.social @tessamunt.bsky.social This is exactly why pwME like Savannah are treated so terribly

What do DHSC plan to do if training like this goes against NICE and contradicts the new NHS e-modules on ME/CFS?
@sharonhodgsonmp.bsky.social @tessamunt.bsky.social

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

ME/CFS diagnosis and management among topics at free Pulse virtual event for GPs 2 March 2026 GPs are invited to a free virtual event this month featuring sessions across a variety of clinical topics across public health and chronic conditions, including how to best support patients with ME/CFS. The Pulse 365 event, on 24 March, is designed to support GPs in confident decision-marking as well as highlighting strategies for earlier diagnosis and management. Tickets can be found here. ‘ME/Chronic Fatigue Syndrome – not just tired all the time’ will be presented by Dr Alastair Miller consultant physician at the Royal Liverpool University Hospital. This comes following the Department of Health and Social Care’s announcement last summer that GPs will play a key role in delivering care for people with mild and moderate ME/CFS under a new delivery plan.

wtaf is Alastair Miller doing ANYWHERE NEAR an education session for GPs on ME???? 😱

www.pulsetoday.co.uk/news/clinica...

Theres around 7,000 rare diseases. These may be rare individually, but according to the NHS, 1 in 17 people (~6 %, ~3.5 million people in the UK) have a rare disease.

Maybe doctors need to be thinking zebras more often...

digital.nhs.uk/data-and-inf...
www.genomicsengland.co.uk/news/rare-di...

Dr @binitakane.bsky.social explains how a theory that #MECFS is caused by deconditioning and a fear of exercise permeated medicine and framed the illness as psychological. This led to the patients being neglected, gaslit, and some would say abused. Causing huge trauma for the community.