Ben H

(I should note it was *eventually* a reasonable conversation…with admission that there is no cure and that not much can be done for now bar managing co-morbid conditions.

But psych being the very first point of reference was…disappointing).

Had to switch doctors and the first thing that is asked/insinuated is essentially a psychological profile…for M.E.

Swerved that shit like Neo.

It’s still happening, in spite of the new guidelines…not that I am surprised.

#MECFS #pwME #MillionsMissing

So good to see @bmhughes.bsky.social here!

Brian’s work is absolutely invaluable for pwME, soundly refuting the BPS nonsense that has ruined so many lives.

100% follow!

#MECFS #pwME

Great to see Dr Asad Khan on here: @doctorasadkhan.bsky.social !

A wonderfully intelligent and compassionate advocate for #LongCovid, #MECFS and associated illnesses.

Follow 100%!

I often wonder how much being diagnosed with ME in late 2011–a few months after the arguably-fraudulent PACE trial had dropped—had on my disease progression.

I’m inclined to think a lot…but will never know for sure.

#DecodeME needs more UK participants with an ME/#CFS diagnosis, incl. those diagnosed following Covid infection, & reminds people who have been sent a spit kit to return them. Final date for submitting the questionnaire is 15th November at 5pm

www.decodeme.org.uk/portal/

#MEcfs #MyalgicE #PwME

We have a dedicated page for #MECFS scientists who are looking for ways to fund their biomedical research. We hope this will be a useful collection of resources to those who are studying ME and also #LongCOVID

europeanmecoalition.com/resources-fo...

Open Medicine Foundation | Fundraisers Open Medicine Foundation (OMF) envisions improved health care for people with chronic complex diseases.

Reached my goal of $6K raised for #MECFS and #LongCOVID research at @openmedf.bsky.social after a week!!! But the need is so great due to institutional regret so you still have to hear about it until the end of the month. openmedicinefoundation.crowdchange.co/35021

🩵

💙

Thane @thaneblack.bsky.social is one of the wisest, most articulate and kindest #pwME you could ever hope to meet.

So glad to see him here! Follow 100%!

Picture of Ben after having a haircut (short sides, long on top), lying on his bed recovering after said haircut. He is smiling.

First (home/carer) haircut in 3-4 years.

This was a couple of weeks ago but I have only just recovered…I think.

#MECFS #pwME #MillionsMissing

😂

Subscribe and 🔔 to the BBC 👉 https://bit.ly/BBCYouTubeSubWatch the BBC first on iPlayer 👉 https://bbc.in/iPlayer-Home A sports pundit gives a vitriolic ra... Watch the Football! ⚽ | That Mitchell and Webb Look - BBC

If you skip to 1.05 and replace the word ‘football’ with ‘CBT’, it’s uncanny how much this reminds me of the energy that the BPS brigade give off.

Without the self-awareness and satire, of course.

youtu.be/MusyO7J2inM?...

The Open Medicine Foundation (OMF) is now on here!

@openmedf.bsky.social

From Malcolm Bailey of #MEAction Network UK:

"NICE have now shared with us that they submitted their own rebuttal paper direct to the JNNP* and are awaiting a response"

*Anomalies in the review process & interpretation of the evidence in the NICE guideline for (#CFS & ME)"

#MEcfs #PwME

Happy to be here! 🇪🇺

In case you haven’t heard of us, check out our website: europeanmecoalition.com

We are trying to raise awareness of Myalgic Encephalomyelitis #MECFS at the European level, denouncing the lack of funding for biomedical scientific research on this devastating disease.

2/

& advised to go for a walk when he no longer was able to control his muscles or eat. The newspaper writes during the last year they have been in contact with more than 200 carers & patients who tell the same story about failure from the Danish health system leading to deterioration for patients

🧵
Danish newspaper BT writes about the terrible story to #severeME sufferer Morten Brandt who recently passed. Due to this disease being viewed as a "functional disorder" in Denmark, Morten was refused help

Google English translation
tinyurl.com/yc8pbb4e

#MEcfs #CFS #PwME

1/

Hello bluesky people. This is my first post here.
Please sign and share this important petition:
chng.it/zTZ7vX9Czd

Morning report: 1100 codes now in the hands of the chronic illness community! Yippee! I think I'm soon going to need to get even more organized and learn to create a script, so I don't make spreadsheet/mail merge mistakes. Donate/request here: forms.gle/8JX8Bb2wD1DC...

700 donated BlueSky codes have made it into the hands of members of the chronic illness community, with another 100 ready to go tomorrow morning, once my mail merge program has had a rest so I'm not exceeding its limits. Thank you so much! Let's keep it up. forms.gle/k1paHEsGnNJV...

It’s beautiful to see the community—with so many familiar faces that are cared for so much—be brought over to bloom here. The oppression has been heavy as of late.

Huge appreciation for @julierehmeyer.bsky.social for her initiative as well as others!

#MECFS #LongCovid #pwME #ChronicIllness

Ha, it’s not wrong!

Screenshot of post at link

via Richard Vallée:

ChatGPT response to:
"Can you offer a critique and evaluation of this [Oslo Chronic Fatigue Consortium] research article, its scientific value and accuracy, as well as the validity of the claims made by the authors?"

www.s4me.info/threads/chro...

#MEcfs #CFS #PwME

Hey Nele, good to see you here. Hope you’re doing as OK as possible.

Open Medicine Foundation | Fundraisers Open Medicine Foundation (OMF) envisions improved health care for people with chronic complex diseases.

Well it’s spooky szn! And nothing is spookier than having a LDN incurable and disabling complex chronic illness like #MECFS. That’s why all month long I’m fundraising for Open Medicine Foundation. Donate/share/etc so we can raise as much money as possible! openmedicinefoundation.crowdchange.co/35021

BlueSky Invites for the Chronic Illness Community Please fill out this form if you're the chronic illness community and you'd like to either (1) donate invite codes or (2) request an invite.

Hey, all. Julie Rehmeyer has made it easy to donate Blue Sky invite codes to folks in the disability community for whom Twitter was a crucial support. If you have extras you can drop them here: docs.google.com/forms/d/e/1F...

Fabulous start to the project of migrating the chronic illness community over here! In the first 12 hours of this form being up, I got 138 donated Blue Sky codes to chronically ill Twitter refugees, with 37 more people in the queue. Please keep donating! forms.gle/tHNTyxG31uPQ...

I created this form to help distribute codes so the chronic illness community can congregate on Blue Sky. Please fill it out if you have codes to donate, and spread the link far and wide. forms.gle/LGVPYz8i3U8e... Let's protect our community from platform collapse!