nickyproctor.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

Upcoming 2025 Events www.renegade-research.org/events-list Questions? Are you an #MD who specializes in longCovid and/or ME/CFS and you're interested in speaking at a future Roundtable? Email: [email protected] Past Clinician & Research Roundtables m.youtube.com/@remissionbi... #medsky

submitted 25 days ago • 0 comments

Sore #muscles? Find out more in this webinar tomorrow! March 28, 2025 - Research Roundtable: The Acid Test - a Patient-led Study about #Lactate Register at renegade-research.org/events-list Follow @sunsopeningband.bsky.social and @ciarawrightphd.bsky.social

submitted 37 days ago • 0 comments

🌟Super article out from #ThereForME covering the momentum for #FundThePlan & the community campaigning together for Long Covid Awareness including: 💙 Our #Postcards4LC 💙 The @lcmebillboards.bsky.social Light Up Challenge 💙 @longcovidsupport.bsky.social banner & launch event

submitted 67 days ago • 1 comment

Dear @wesstreeting.bsky.social and @ashleydaltonmp.bsky.social. My partner is missing from his life. Please, #FundThePlan 💙 #MyalgicEncephalomyelitis #LongCovid #lyme @thereforme.bsky.social

submitted 66 days ago • 1 comment

We’ve been amazed watching the incredibly powerful #FundThePlan videos being shared by people with ME and carers. It’s clear PwME want change. Now we’re asking allies, whether friends, healthcare workers or public figures, to join us. It’s time for #FundThePlan: Ally edition

submitted 66 days ago • 1 comment

When a Dr comes out and says this, you know the situation is dire! #FundThePlan We need funding to deliver the research, education & services promised 3 years ago and neglected for decades! #FalseEconomy not to do so! £billions lost to economy plus human cost. #FundThePlan

submitted 62 days ago • 0 comments

Dear @rthonwesstreeting.bsky.social & @ashleydaltonmp.bsky.social Today I am asking for you to ensure the Delivery Plan for ME is enacted to ensure there is an improvement in the care for M.E. patients. #FundThePlan #ThereForME @thereforme.bsky.social

submitted 65 days ago • 1 comment

You’re welcome. podfollow.com/1785871486

submitted 67 days ago • 26 comments

🎥 Today we’re launching our #FundThePlan campaign! With over a month until the delivery plan is finalised, ministers can still reconsider the resources behind it. We want to show them why it is important to #FundThePlan. Share a video on social media using our template ⬇️

submitted 71 days ago • 2 comments

"Thousands of patients in dark rooms are looking to the government to prove it is on their side." Writes @helenmorganlibdem.bsky.social With no further funding for the ME delivery plan, will it just be more tokenism & dismissal for #pwME? To read more: archive.ph/a3iYo

submitted 73 days ago • 1 comment

‘No extra cash for new services or research’. #ME #DeliveryPlan The Times today. www.thetimes.com/article/0612...

submitted 73 days ago • 3 comments

ME/CFS stands for My Endless Cunting Fucking Shite.

submitted 74 days ago • 0 comments

Today’s #ThereForME blog is from an anonymous healthcare worker She shares her experiences of developing #ME following a Covid infection and ideas for what an NHS that’s #ThereForME would look like. www.thereforme.uk/p/designing-...

submitted 74 days ago • 0 comments

@doctoroxford.bsky.social your article mentioned in BBC Radio 4 “The Westminster Hour” tonight, around 44 mins in. Thanks for highlighting the “threadbare” nature of palliative care provision.

submitted 75 days ago • 1 comment

This visual shows UK gov funding levels for different diseases over time - analysis by @mediumwhite.bsky.social 💸 It shows how paltry funding for ME has been, especially considering that data from the US suggests the ME disease burden is larger than for the other 3 combined 😅 #MECFS #LongCovid

submitted 91 days ago • 3 comments

📣 New blog from @karenlhargrave.bsky.social with @patientsafetylearning.org - exploring accessibility issues in NHS care for people with ME and Long Covid We want to hear from you! Read on to the next post for how you can share your experiences. www.pslhub.org/learn/improv...

submitted 93 days ago • 1 comment

Can lumbrokinase break down microclots found in the blood of participants with long COVID and/or ME/CFS? Past studies have shown that the formation of microclots in the blood may contribute to overall symptom severity in these patients. We're working to learn more!

submitted 102 days ago • 0 comments

Stand By ME/CFS youtu.be/s9cMmFDI4rk Please watch my Stand By ME/CFS video! I have suffered from ME/CFS since 2009. Please lend your voice and support. Become an ally! With gratitude, Cynthia #StandByMEcfs #GlobalVoiceForME #StillSickStillFighting #MillionsMissing #EndMEcfs #TeachMETreatME

submitted 313 days ago • 0 comments

Long Covid in Children - we’re still looking for families who’d like to take part and help in this research. Please get in touch

submitted 110 days ago • 2 comments

🧵An example of the shenanigans and junk science accepted in medical journals. In September 2023, JAMA Pediatrics published a ludicrously bad paper (quasi-retracted after much effort) claiming long COVID is "strikingly rare" in kids, supposedly vs the WHO definition. jamanetwork.com/journals/jam...

submitted 126 days ago • 18 comments

📢 Today @karenlhargrave.bsky.social and @binitakane.bsky.social will be representing #ThereForME on the Task & Finish group for the new delivery plan for ME. Today's #ThereForME blog outlines six things they'll be looking out for as the delivery plan is finalised. www.thereforme.uk/p/a-delivery...

submitted 109 days ago • 7 comments

Six things #ThereForME wants to see in the Delivery Plan for ME 👇🏼 By @karenlhargrave.bsky.social and @binitakane.bsky.social

submitted 109 days ago • 0 comments

A great thread from @profaliceroberts.bsky.social on the chaos at the heart of government in the early stages of the pandemic and the reasons why @independentsage.bsky.social was set up.

submitted 109 days ago • 3 comments

I’m struggling to get my head round BlueSky. Not seeing much I recognise in my feed. Was I too click happy at the start? Do I need to erase packs I followed and start again. If you see this post and know me please can you like it so I know if anyone sees it. Thanks. ☺️

submitted 110 days ago • 8 comments

👏 Paul Nurse FRS, President of the Royal Society (2013) “For scientific understanding to prevail, the extensive biomedical evidence base of ME/CFS must now be recognised by all researchers…The idea that ME/CFS is due to a dysfunctional psyche is a hypothesis without an evidence base”

submitted 110 days ago • 0 comments

My first post here, so I thought I'd make it about 2 things that have shaped my life #MECFS & #photography. For the past 3 years I've been photographing other people who also have ME, & I was delighted when @wellcomecollection.bsky.social published a selection wellcomecollection.org/stories/livi...

submitted 119 days ago • 9 comments

Our #ThereForME campaign updates are back! As 2024 comes to a close, @karenlhargrave.bsky.social reflects on the work we’ve done this year and what we’re looking forward to in 2025. www.thereforme.uk/p/campaign-u...

submitted 123 days ago • 1 comment

A 🧵. Back in early 2022, the editorial staff of the Cardiopulmonar Physical Therapy Journal approved the development of a Special Issue on Long Covid, and against all better judgement, I was selected to be its Guest Editor. The Special Issue published today. Here are the contents.

submitted 124 days ago • 25 comments

It’s our #ThereForME ambassador @binitakane.bsky.social - a dr with a special interest in LC/ME, & a champion for patient voice. “A special shout out to children & young people with Long Covid / ME this Christmas. You are so brave & lots of us are fighting for you.” @longcovidkids.bsky.social

submitted 131 days ago • 3 comments

New Dutch research: Two Different Hemodynamic Responses in ME/CFS Patients with Postural Orthostatic Tachycardia Syndrome During Head-Up Tilt Testing www.mdpi.com/2077-0383/13... #POTS #MEcfs #CFS #PwME

submitted 133 days ago • 6 comments

Dec 20: It's TV doctor Dr Ranj Singh! Dr Ranj is also an author and columnist, and has appeared on #Strictly. His message: “You are so much more than your condition. And you deserve to be heard. Merry Xmas, Dr Ranj x” #PatientSafety #pwME #pwLC #ThereForME

submitted 134 days ago • 2 comments

No one really truly understands that their health is their most precious possession until they lose it. There’s a sense of invincibility about us all until the day we crash into a new world, a world of disability and chronic illness. Then we understand! #ME #ChronicIllness #MEcfs #Health

submitted 135 days ago • 2 comments

The biggest thanks to @eleanorhayward.bsky.social and @fionahamiltontimes.bsky.social - the latest duo in our #ThereForME advent calendar! Ellie wrote about my and James’ story earlier this year. Really scary to put it out there but she did such a great job. Thanks for being #ThereForME 👏👏

submitted 135 days ago • 0 comments

📣 Today DHSC published the results from the public consultation last year on the interim ME delivery plan. Sharing a thread here from the other place with the 🦋 crowd! 👇 threadreaderapp.com/thread/18696...

submitted 135 days ago • 3 comments

Enormous support from these awesome journalists! 🙏

submitted 135 days ago • 0 comments

THREAD: @independentsage.bsky.social by numbers Love us or hate us, we tried something new in public communication of science and sustained it for over three years. From May 2020 - Dec 2023 we livestreamed 139 briefings, published 62 reports, 50 short statements and 7 Q&A and mythbusters. 1/13

submitted 136 days ago • 48 comments