Dominique

susceptible to unworkable crackpot ideas

[Grieving ME Caregiver @ home 🛌🦋🦠🧠🎗️ @mecaregiver]

Jeder terminale ALS- o. Krebspatient hat Anspruch auf eine ehrliche Prognose.
Bei #VerySevereME hingegen wird systematisch falsche Hoffnung erzeugt – obwohl es progrediente Verläufe gibt, die tödlich enden können, auch für die, die noch voller Hoffnung sind...
#RIP René🕯️

[Lou Thornley @Lou_vs_ME]

I feel pretty sick of seeing this response:

"The Ministry of Health told Stuff that patients with ME are cared for in the same way as people with other chronic conditions"

Rubbish, ME isn't treated the same - still stigma, outdated recs, limited access to meds, psych assumed

[Star💫 @Starseeker1986]

Apparently it’s all a mystery why so many people of all ages are falling sick & disabled to the point that they have no other choice but to claim sickness benefits

I contracted C o V I D in 2022 working on as a NHS MH Specialist. Now severely disabled and unable to work age 35

[Phileas Brain Fogg @FoggBrain]

Another discussion on the number of people out of the workforce sick on @radio4 #today without a single mention of covid, long covid or the pandemic. Numbers were actually decreasing before 2020.

[ME/CFS Science @mecfsskeptic]

1) An overview of positive developments in ME/CFS research 👇

The European Union awarded €7.5 to a ME/CFS consortium that will conduct multi-omics and test biomarkers in hundreds of patients. It will connect five biobanks across the continent.
https://t.co/od8YrY7BFv

[ME/CFS Science @mecfsskeptic]

1) 🇧🇪 In Belgium, the Federal Knowledge Centre (KCE) published a 144-page report on ME/CFS.

It measured the healthcare needs and priorities of ME/CFS patients (shown in the graph below) and recommends investments in research and specialist centres for ME/CFS.

[No Farmers, No Food @NoFarmsNoFoods]

Governments tell us to cut eating red meat and dairy products to ‘save the planet’ yet they ram through hundreds of massive data centres that consume vast amounts of energy and water…

[Alastair Hilton @London_W4]

This is the City Barge pub in Chiswick right now. What do you notice? It’s 3pm and they’re open. It’s a sunny day. Yes, that’s right; they have had to remove all of the tables and chairs outside. They have had to destroy their own business. Why? Because Rick Rowe, a Green Party councillor on Hounslow council, who lives very, very, very close to this pub and complains about it almost daily, has banned all three pubs here on strand on the Green Chiswick, from having outside tables. I can only assume he hates pubs, hates business and hates the British way of life. This would usually be buzzing with people enjoying their afternoon. However, they’re the wrong sort of people for Rick.

[Carole Bruce @CaroleBruce17]

From Chris Ponting:
‘In April @ukbiobank.ac.uk stopped all researchers from accessing their Research Analysis Platform.
In May they indicated they would “provide a more specific timetable in early June”.
Until access is restored @decodemestudy.bsky.social analysis is stalled.’

[Dr Peter Beaver 🇵🇸 @PeterJBeaver]

Supporting Healthcare Heroes UK are calling for universal respirator use in healthcare

[ME/CFS Science @mecfsskeptic]

1) 🇩🇪 The results of the German rehabilitation program for ME/CFS have been published. Unfortunately, the results are rather bleak: there was no improvement on multiple outcomes.

A closer look at the main findings...

[Jack | amatica health @JackHadfield14]

Low blood volume has been reported in a subset of people with ME/CFS, especially those who feel worse when standing. With less blood circulating, it may be harder to keep enough returning to the heart and reaching the
brain.

Let's break it down 🧵

[Adam @ABrokenBattery]

The U.K.’s plan for ME has failed us. Members of parliament must step up.

“No ring-fenced research funding. No care pathway for the very severe. Hospitalized patients still at risk of malnutrition.”

Important article by Nick Benton

https://t.co/Wy86lIGxh1

[charlos @loscharlos]

“ARPA-H… is spending $150 million to create what it calls ‘an immune system for every building.’”

“I believe that a provision of pure air for children (and adults) to breathe should be looked upon as of equal importance to the provision of pure water”

[Dominique @chezboo2]

@chydorina Very interesting K2 info and good advice about dosage in general.

[Artur Nadolny @ArturNadol7566]

DOCTORS GAVE OLIVER MCGOWAN THE DRUG HIS FAMILY BANNED AND HE DIED

Oliver McGowan was 18. He had cerebral palsy, epilepsy and mild autism. He was a Paralympic hopeful who ran for Team Bath and ranked third in the country for disability 200 metres.

In October 2016 he was admitted to Southmead Hospital under North Bristol NHS Trust @NorthBristolNHS with uncontrolled seizures.

His parents told doctors in writing not to give him antipsychotic drugs. Oliver had reacted badly to them before. He had a hospital passport that said so.

Doctors gave him Olanzapine anyway. He developed Neuroleptic Malignant Syndrome, a known risk of that exact drug, suffered a catastrophic brain injury, and died on 11 November 2016.

In 2018 the inquest concluded the prescribing was properly carried out and the reaction could not have been predicted.

The doctor who prescribed it told the court she would do the same again, despite agreeing the family had been right all along. The family paid for their own legal representation. The Trust did not.

His mother Paula McGowan OBE @PaulaMc007 did not accept appropriate as the final word. She turned a death the system signed off on into a national petition, then a campaign, then law.

The Health and Care Act 2022 now legally requires every CQC @CareQualityComm registered provider in England to train staff on learning disability and autism.

NHS England @NHSEngland rolled the training out nationally, named after the boy it failed to protect.

So a coroner ruled nothing went wrong, and Parliament still had to force the entire health system to learn how to read a hospital passport.

Make that make sense.

Sources
@guardian @BristolLive @BBC

[Ann Forti @annmforti]

This was a video I shared everywhere I could five years ago.

Unfortunately, it was censored and taken down everywhere.

Kristi was never acknowledged by our government and never received the help she needed.

Kristi d*ed yesterday.

@NIHDirector_Jay
@SecKennedy

[Memorial ME Victims R.I.P. @MemorialME]

🖤#RIP Kristi May Simmonds🖤
*1.8.1980 - †24.6.2026

2021 erlitt Kristi durch die Covid-Impfung einen schweren Impfschaden, da sich ihr Gesundheitszustand weiter verschlechterte, kam sie in ein Hospiz, wo sie nach wenigen Tagen starb.💔
https://t.co/BZvyTn6Ajs

[Anton 🇫🇮 🇸🇪 @finnishgunner.bsky.social @finnishgunners]

My friend with ME who lives in a nursing home recently divorced her husband and had to give up custody of her kids as well. She’s very severe and been sick for many years. She’s missing seeing her kids grow up. There are no limits how cruel this disease is. And nobody gives af.

[ME/CFS Science @mecfsskeptic]

1) 🇳🇱 A large study in the Netherlands found that 17% of people with Long Covid left the workforce,
compared with 9% of controls who never had LC.

Productivity loss was up to three times higher.