Spoonseeker

Been blogging on ME (myalgic encephalomyelitis), aka CFS (chronic fatigue syndrome). Now here’s #Longcovid . Best to sort your problems before another arrives.

[Hannah Davis @ahandvanish]

Case report of 3 people with #LongCovid *fully recovered* with infusion of monoclonal antibodies (Regeneron). Author list includes renowned researcher Dr. Klimas.

Parents were at 5, 8, & 18 months at the time of infusion. Followup time was 2 years (!!) & all remained recovered.

[Carole Bruce @CaroleBruce17]

If this 👇 gets fully funded, rolled out to patients, and proved to be a successful measure, those who should be saying, “I was wrong” have too much to lose and have too much power. I suspect many absolutely dread the repercussions of #ME having a proven biological basis. #MECFS

[Dan Wyke 🦠➡️🧠🔥 @Dan_Wyke]

Psychiatry has been wrong time and time again about what turn out to be medical conditions. And yet no-one is ever held to account, no re-evaluation takes place. Ironically psychiatry is one of the least self-reflective intellectual fields.

[Dr Ben Marsh 💙 @bendymarsh]

Today, 8th August is #SevereMEDay
Please have a watch of this excellent video from @ABrokenBattery
And have a look at https://t.co/OeBByb9A0G
#ME #MECFS

[Dr Ben Marsh 💙 @bendymarsh]

OK #PwME gang……Let’s do this!!
Government is listening!!
@DHSCgovuk want feedback on the #ME #MECFS delivery plan, developed with #ME ppl, carers, charities - lots of work!!

We want change, we want official buy in. This is it!!
Have your say!!

Pleeeease do survey & share!!

[Dr Ben Marsh 💙 @bendymarsh]

Very interesting new research from NIH study. #MECFS
High levels of WASF3 protein impairs mitochondrial function & normal energy production in muscles.
Paper & Science summary article

https://t.co/3ypycjayab

https://t.co/4ARJs3j5GS

[Naomi Harvey “PhD Witch” #WearAMask @Naomi_D_Harvey]

The new NIH paper that’s published in PNAS has been covered as a story in Science.

This may not seem like a lot, but for an ME/CFS study to be in PNAS and be discussed by Science is *huge*.

It signifies a level of recognition this disease has not received before.

[ME Association @MEAssociation]

Protein found that disrupts energy levels in ME/CFS
Catherine Offord, Science

Researchers have identified a protein that’s present at unusually high levels in the muscles of people with ME/CFS and that disrupts cells’ ability to generate energy.
https://t.co/C6XxXJtZwI
#MECFS

[Adam @ABrokenBattery]

Full article from today's Times

"The NHS has been told to stop dismissing and stigmatising patients with myalgic encephalomyelitis (ME) under a government plan to overhaul care for the debilitating illness."

https://t.co/9WJV9vbHaL

[Dan Wyke 🦠➡️🧠🔥 @Dan_Wyke]

Fantastic development. Hope it's a success and we see more centres like it popping up across the country. Just wish I lived in Utah... #MECFS #Fibromyalgia #LongCovid #POTS #chronicillness

[Spoonseeker @spoonseeker]

Good news seems to have been scarce in recent times, but this looks like the real thing. Let’s hope the opening of this research centre leads to further good news for those who suffer from these devastating conditions in the near future… #mecfs #Fibromyalgia #LongCOV #POTS

[Cort Johnson @CortJohnson]

Metrodora – a High-Tech Clinical / Research Center for ME/CFS, FM, Long COVID, POTS – Opens #MECFS #FM #longCOVID #POTS https://t.co/chyDRhCluh

[Spoonseeker @spoonseeker]

Metrodora – a High-Tech Clinical / Research Center for ME/CFS, #Fibro #Long COVID, POTS – Opens https://t.co/Mh7V3JYED3

[Dan Wyke 🦠➡️🧠🔥 @Dan_Wyke]

Wow, this is amazing. The power of good journalism. 🪄 Love to see a piece like this in @guardian one day... #MECFS #LongCovid

[Ed Yong is not here @edyong209]

Sigh. Some of you seem to be able to read this during the 24-hr free period, & some are still bumping into the paywall.

Look, if anyone w/ long COVID or ME/CFS needs to read this and can't, email [email protected] and I'll personally send you a copy.
https://t.co/GoJIGbRh7L

[Adam @ABrokenBattery]

Clip of Prof Danny Altmann talking about #MECFS and the similarities with #LongCovid

"firstly an apology on the part of the medical community, because yeah, nobody was prepared to fund that research, nobody was that interested, nobody had the wherewithall to look at it"

[Visible @visible_health]

Today, we’re launching research studies with Imperial College London! 🚀

Our mission is to increase our understanding of invisible illnesses like #LongCovid & #MECFS.

Now you can be part of this by sharing your Visible data directly with researchers: 🧵

https://t.co/XOWT8egMEl

[Gez Medinger @gezmedinger]

Absolutely outstanding news! Congrats to @harryleeming and @vikilovesFACS for getting this off the ground 🚀

[Tom Kindlon @TomKindlon]

2/
Someone in the ME community has just written a short note about the Community Notes project here:

https://t.co/clmH9JQhAo
#PwME #MEcfs

[Tom Kindlon @TomKindlon]

Interesting to see the comment Twitter has added to the Guardian tweet 😮

https://t.co/YifLSolrzs

#PwME #MEcfs

[Carole Bruce @CaroleBruce17]

The Guardian have added important context to the article published on Tuesday, namely that the authors of the study are all psychiatrists. It would be helpful if #pwME respond to the note affirming it. Maybe ask for a further article stating the real facts. #ME #MECFS #LongCovid