The Black Box: Awaken

A new experimental short film about a young person with #ME/#CFS, trying to achieve his potential. Director @RHolbourn Producer @ThomJacksonWood

[The Black Box: Awaken @TheBlackBoxFilm]

We went to @NICEComms with @MEActNetUK to deliver their petition to call on NICE to publish the new guidelines on #ME/#CFS which remove Graded Exercise Therapy from recommended treatments. Because it makes people with #ME worse, not better.

#PublishTheGuideline #StopGET

[#MEAction Network UK @MEActNetUK]

#MEAction UK handed a petition containing over 21,000 signatures to Jennifer Howells Dir. of Finance, Strategy & Transformation at NICE demonstrating the strength of feeling behind the call for them to publish the new ME/CFS guideline without alteration.

#PublishThatGuideline

[Long Covid Advocacy 💙 @LongCovidAdvoc]

Thread:
🚨 Long Covid and ME voices are being quietly hidden on X.
Let’s talk about what’s happening - and what we can do together to push back. 🧵

[Carole Bruce @CaroleBruce17]

This is a hugely important and useful thread. We know how little coverage #ME and #LongCovid are getting. It’s boring/too worrying for many readers, so when we are able to post, to advocate, we must make it count. We can work as a team by reposting etc. We can do our own PR now!

[Katy B @KatyBruce108]

The inevitable happened
@DecodeMEstudy perhaps you’d like to respond to font of all #ME #LongCovid misinformation, PGarner

[ME Centraal @MECentraal]

❗️The Dutch ME community has been shaken by a very urgent situation
38-year-old Sanne is seriously ill due to ME, and has gastroparesis
She doesn’t tolerate Tube Feeding and the hospital refused TPN only because she has ME

Please read the thread and help

https://t.co/U8GttSr0YE

[Visible @visible_health]

1/ We were excited to see the recent findings from @DecodeMEstudy, the world’s largest genetic study of ME/CFS.

Eight genetic regions were found to differ significantly between people with ME/CFS and those without, an important step toward understanding the condition.

🧵👇

[ME Foggy Dog @MEFoggyDog]

*Foggy* I'll be tuned in!

#pwME #MEcfs

[European ME Coalition (EMEC) @EMEC_advocacy]

1) It’s been a long time since you heard from us, but we can finally give an update of what we have been doing behind the scenes. 🧵

#MECFS #LongCovid

[Carole Bruce @CaroleBruce17]

Neil Riley of the MEAssociation is obviously enjoying it. Disgusting. I just wish all the sycophants on Facebook knew the truth. #MEcfs

[Dan Wyke 🦠➡️🧠🔥 @Dan_Wyke]

"In summary, therefore, after you remove the biased studies, the accumulated research does not support the use of “physical activity and rehabilitation interventions” for long COVID." Likewise for CBT.

[Dr Rachel Clarke @doctor_oxford]

It’s the eve of the vote on assisted dying.

Everyone is united on one thing - that however MPs vote, UK palliative care is desperately underfunded.

It’s in your gift to change this, @wesstreeting, @Keir_Starmer.

You could both pledge action - now.

The question is, WILL you?

[Dr Rachel Clarke @doctor_oxford]

It’s October and conditions are already wretched. Unforgivably grim for patients & staff alike 😔

[postersandme @postersandme]

@Dan_Wyke

[Dan Wyke 🦠➡️🧠🔥 @Dan_Wyke]

It's wild I've not felt well for more than a few minutes here and there since 2010 and my GP doesn't even know me.

[Dr Rachel Clarke @doctor_oxford]

If this is Labour's plan for managing the looming winter crisis, then I am horrified.

This isn't fixing the problem, it's passing the buck, placing intolerable pressures on my colleagues in A&E & risking the lives of the patients stranded in corridors.

https://t.co/XSJCVkQxYM

[SARS‑CoV‑2 (COVID-19) @COVID19_disease]

⚠️ BREAKING:

COVID Deaths Surge 25% in UK 🇬🇧 as Scientists Warn of Growing Threat from the XEC Variant

Health officials in the UK have reported an increase in the number of COVID patients in hospitals, with deaths rising by over 25%.

[The Black Box: Awaken @TheBlackBoxFilm]

The more things change, the more they stay the same. So it would seem…

[Dan White : Disability Campaigner / Author / ♿️ @Danwhite1972]

Cut benefits for Disabled people and people will die.
That’s the truth.
This Government has NO idea of how Disabled & mentally unwell people live. NONE.
It’s beyond offensive & inhumane to go down this economic route just to appease the right.
Hands are dirty & souls are cold.

[Long COVID Nederland @LongCovidNL]

📰Leestip: het huidige gebrekkige long covid-beleid is economisch kortzichtig

Uitstekend opinie-artikel vandaag van Bastiaen Huijnen in NRC. Bastiaen legt de vinger op de zere plek: long covid raakt de hele maatschappij, ook economisch. Het kortzichtige overheidsbeleid is hierin een factor van betekenis.

"In het 138 pagina’s tellende regeerakkoord van het nieuwe kabinet wordt met geen enkel woord gerept over deze of soortgelijke post-infectieuze aandoeningen. Ook in de rijksbegroting blijft dit onderwerp grotendeels onbelicht."

"Ik vraag de regeringspartijen dan ook niet om empathie; ik vraag hen om een rekensom te maken en zich af te vragen hoeveel welvaart we in de toekomst zullen mislopen als we de groep mensen met long covid én andere post-infectieuze ziekten geen perspectief bieden."

"Het meest opzienbarende prijskaartje van deze aandoening is geïntroduceerd door Harvard-econoom David Cutler, die de totale long covid schade in de Verenigde Staten op 3.7 biljoen dollar schat."

"Een lichtpuntje voor (en dankzij) patiënten is dat er komende november enkele poliklinieken geopend zullen worden. Hier kan kennis gecentraliseerd worden, en kunnen bestaande medicijnen worden getest. Verder kunnen de ‘lucky’ few eindelijk een specialist zien, terwijl patiënten nu vaak enkel hun huisarts als aanspreekpunt hebben. Echter; er is geen structurele financiering." 

Dank voor dit goede artikel en je inzet voor Long Covid Nederland, Bastiaen!

🔗Link: https://t.co/4dZYDq4LL9

#LongCovid

[Adam @ABrokenBattery]

The Times view on the chronic fatigue syndrome inquest: Respect ME

Treatment is held back by ignorance and prejudice

https://t.co/k31xBKub3m

[Dan Wyke 🦠➡️🧠🔥 @Dan_Wyke]

So sad to open Facebook this morning and learn that another person with ME has died. I didn't know him but he was a friend of a friend and he leaves behind a loving wife. Like most pwME, it killed him not being able to do all the things he used to do for himself and his family.