Reposted by Nicky ProctorBinita Kane @binitakane.bsky.social · 24/09/2026Thank you George. This is the absolute reality of what patients are going through - it’s great to see mainstream journalism on this. 0806
Reposted by Nicky ProctorTina Rodwell @tinarodwell1.bsky.social · 24/09/2026Those that keep it hanging as a form of protection for bad pracite and teaching Drs to dismiss the very sick should be held accountable @thelancet.com this is your responsibility. Take the #PACE trial down it is not just bad it blots your reputation? Can we trust you? NO 021
Reposted by Nicky ProctorTina Rodwell @tinarodwell1.bsky.social · 24/09/2026There are many ways to tackle serious issues and to make a difference. you can chose your heroes. @alemmatthees and @georgemonbiot.bsky.social www.theguardian.com/commentisfre... are just two of so many. They are dismissed and our trust erodes more because of that. 232
Reposted by Nicky ProctorTina Rodwell @tinarodwell1.bsky.social · 24/09/2026How do we bring truth and integrity back into our society it seems an endless fight, @thelancet.com your responsibility and we should and will keep holding you to account #PACE trial take it down and tell the public why 121
Reposted by Nicky ProctorTina Rodwell @tinarodwell1.bsky.social · 24/09/2026You can tackle serious issues by many aspects so lets look at the Economy? millions of people left sick and DWP is still covering the reality along with @thelancet.com @garyseconomics.bsky.social talks about our wealth being stripped in so many ways. www.theguardian.com/commentisfre...theguardian.comAbandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George MonbiotChanges in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot 141
Reposted by Nicky ProctorGeorge Monbiot @georgemonbiot.bsky.social · 24/09/2026Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...theguardian.comAbandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George MonbiotChanges in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot 17925181713
Reposted by Nicky ProctorTessa Munt MP 🔶 @tessamunt.bsky.social · 24/09/2026Thank you so much, George! Your conclusion speaks volumes, reflecting so much that I hear from #pwME. 37326
Reposted by Nicky ProctorThereForME @thereforme.bsky.social · 23/09/2026We will never encourage anyone to give beyond their means, and there are ways to support our work other than donating. You can follow our blog, where we'll share updates on how you can help 👇 4/4 www.thereforme.uk/p/thereforme...thereforme.ukThereForME is now a registered charityWhat it means for our work, and how you can get involved 152
Reposted by Nicky ProctorThereForME @thereforme.bsky.social · 23/09/2026We're excited to share something we've been working on for a while. ThereForME is now a registered charity! 🥳 1/4 12610
Reposted by Nicky ProctorGeorge Monbiot @georgemonbiot.bsky.social · 21/09/2026Thanks so much everyone for a massive response. I've now had as many emails as I can cope with, so no more please - thank you. They paint a really grim and heatbreaking picture. The neglect and abuse of patients goes on and on. I hope to try to do the issue justice. #ME/CFS 28769201
Reposted by Nicky ProctorHealthwatch York @healthwatchyork.bsky.social · 21/09/2026We've been hearing the experiences of women with ME/CFS and other long term conditions in York. Their responses are in our latest report: www.healthwatchyork.co.uk/seecmsfile/?... and people are definitely being offered inappropriate treatments and more.healthwatchyork.co.uk 1452
Reposted by Nicky ProctorGeorge Monbiot @georgemonbiot.bsky.social · 21/09/2026Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers: Are any of you still being offered inappropriate (psych/GET etc) "treatments"? Please email george at monbiot dot info. Thanks. 130710287
Reposted by Nicky ProctorTessa Munt MP 🔶 @tessamunt.bsky.social · 03/09/2026To continue to put on the pressure, I’ve tabled three new amendments for next week’s Report stage of the Health Bill. Each asks the government to have regard to the needs of persons with long-term, complex or fluctuating conditions - #pwME 👇🏽 Thanks to @actionforme.bsky.social for help with these. 53211
Reposted by Nicky ProctorTessa Munt MP 🔶 @tessamunt.bsky.social · 08/08/2026Thanks to everyone who contributed to such a powerful account. @andyburnham.bsky.social spoke of govt investing in people’s success rather than paying for failure. A year on from #DecodeME results it’s time for serious investment in the research to address the cost to us all of #SevereME. #MECFS 02513
Reposted by Nicky ProctorThereForME @thereforme.bsky.social · 21/07/2026You may have noticed there's a new PM in town! Today's post from our co-founder @GoreLloyd on our #ThereForME blog outlines a problem his government will inherit when it comes to ME. Houston, we have a data problem. Link in next post 👇 21711
Reposted by Nicky ProctorLong Covid Advocacy @longcovidadvoc.com · 23/06/2026📩 Download a PDF of our Cooling Tips 101 Visual Summary here: #heatwave www.longcovidadvoc.com/post/cooling...longcovidadvoc.comCooling Tips 101How to breeze through a heat wave with ME & Long CovidAudio version on Substack101 Quick PDF Download101 Quick Image Save Longer Form ArticleHeat can significantly worsen symptoms for people with ME a... 075
Reposted by Nicky ProctorLong Covid Advocacy @longcovidadvoc.com · 23/06/2026☀️The #heatwave is upon us☀️ To help people stay safe and cool we have prepped a: 👁️101 Visual Summary of our Cooling Tips High quality PDF download on our website 🖇️👇 14542
Reposted by Nicky ProctorDavid Tuller @davetuller1.bsky.social · 31/05/2026An interview with Professor Chris Ponting, a geneticist at the University of Edinburgh, about the recently announced follow-up to DecodeME called Sequence ME & Long Covid. virology.ws/2026/05/31/t...virology.wsTrial By Error: Interview with Chris Ponting about "Sequence ME & Long Covid" | Virology BlogBy David Tuller, DrPH Last year’s release of the results from the DecodeME, a UK-based genome wide association study of more than 15,000 DNA samples, genera ... 03622
Reposted by Nicky ProctorDan Neidle @danneidle.bsky.social · 28/05/2026Britain has a tax on instruments that don’t exist any more. It raises no revenue. It never applies. It was meant to be abolished this year, but wasn't. It still exists. Anyway, I made a chart of all 85 UK taxes. 912732
Reposted by Nicky ProctorME/CFS Research Foundation @mecfsresearch.bsky.social · 28/04/2026New report: Long COVID and ME/CFS cost Germany €64.4 billion in 2025 alone – 1.44% of GDP. Over 1.4 million people are currently living with one of these conditions. Total cumulative cost 2020–2025: €318.8 billion. 📊 #MECFS #LongCOVID 🔗 t.ly/QeMez 01111
Reposted by Nicky ProctorTessa Munt MP 🔶 @tessamunt.bsky.social · 17/05/2026Thinking of the #ME community this #BlueSunday, especially those who are struggling to participate or for whom it brings painful memories. You are not forgotten. 1266
Reposted by Nicky ProctorDr Jo Greer @drjogreer.bsky.social · 16/05/2026youtu.be/6iRbQNX07zY Please watch & share this fabulous online music concert organised by Isaac Greer for Blue Sunday to help raise awareness & funds for the #MyalgicEncephalomyelitis #ME/CFS research @edinburgh-uni.bsky.social led by @cgatist.bsky.social Prof Chris Ponting youtu.be/6iRbQNX07zYyoutu.beBlue Sunday - The Online Concert for M.E. 2026YouTube video by Blue Sunday - The Online Concert for M.E. 198
Reposted by Nicky ProctorDr Jo Greer @drjogreer.bsky.social · 16/05/2026Amazing musical performances and messages from Prof Chris Ponting @cgatist.bsky.social and @tessamunt.bsky.social All donations to the ME/CFS research at the University of Edinburgh.. www.justgiving.com/page/i4bsc26justgiving.comBlue Sunday for ME - Online Concert 2026: Fundraising for ME/CFS ResearchHelp Isaac Greer raise money to support The University of Edinburgh 084
Reposted by Nicky ProctorDr Nicola Clague-Baker @claguenjc36.bsky.social · 07/05/20261. Training of #hcps People with #ME/CFS and #longcovid I need your thoughts and ideas please. I would like to develop simulation training for all #hcps. We now use a lot of simulation which means that we can simulate severe #ME and #longcovid in a hospital setting. 154819
Reposted by Nicky ProctorDr Nicola Clague-Baker @claguenjc36.bsky.social · 12/05/2026It took 7 years but we have managed to publish an article in the physiotherapy frontline magazine "Do no harm". Thank you to the @thecsp for publishing. Over 65,000 UK physios will see this important message about #pwme @physiosforme.bsky.social 23716
Reposted by Nicky ProctorLong Covid UK @longcoviduk.bsky.social · 12/05/2026Join our board of trustees as Treasurer! We are seeking a qualified finance professional to join our board as Treasurer, overseeing our finances and maintaining a strategic approach to reporting, budgeting, target-setting and more. This is a great chance to join a small, energetic charity. 1/ 285
Nicky Proctor @nickyproctor.bsky.social · 12/05/2026mecfsresearchreview.me/2026/05/12/d...mecfsresearchreview.meDNA sequencing study to help pinpoint biology of ME gets £4.7mThe UK government has given nearly £5 million to fund full sequencing of the DNA of 6,000 people with ME using the best available technology. This will help scientists home in on what is really dri… 142
Reposted by Nicky ProctorDr Seth Thévoz @seththevoz.bsky.social · 08/05/2026It never ceases to amaze me how many election pundits don’t understand the dynamics of First Past the Post, and how vote-splitting works under the UK’s electoral system. John Curtice does. Listen to John Curtice. 28783321
Reposted by Nicky Proctorvalebodi.bsky.social @valebodi.bsky.social · 27/04/2026Human brain matters: Navigating the Neuropathology of COVID-19 The aim of this narrative review is to summarize neuropathological features described in postmortem human COVID-19 brains (n = 352). Furthermore, analysis of biofluids and neuroimaging from PASC patients underline long-term changes inonlinelibrary.wiley.com<em>Brain Pathology</em> | ISN Neuropathology Journal | Wiley Online LibrarySevere COVID-19 is associated with vascular dysregulation and chronic neuroinflammation, leading to axonal injury and neurodegeneration. In long COVID or PASC, persistent alterations in neuroimaging ... 121
Nicky Proctor @nickyproctor.bsky.social · 26/04/2026“As the UK Government implements its 10-year plan for the NHS, effective health data infrastructure will be essential to improve outcomes, reduce inequalities, and enhance NHS efficiency.” 000
Reposted by Nicky ProctorDavid Tuller @davetuller1.bsky.social · 26/04/2026eClinicalMedicine, a Lancet journal, has now also published the authors' response. They agree that they were "overly assertive" in promoting exercise--but did not correct the language in their revisions. virology.ws/2026/04/26/t...virology.wsTrial By Error: Claims on Exercise for Long COVID Were "Overly Assertive," Agree Meta-Analysis Authors | Virology BlogBy David Tuller, DrPH *This is a crowdfunding month at UC Berkeley. If you’d like to support my work, the link is here. I posted two days ago that a Lancet ... 12911
Reposted by Nicky ProctorLong Covid Advocacy @longcovidadvoc.com · 24/04/2026👌Bravo Bravo Non-violent action at European Long Covid Conference with a Psychologisation agenda "We are sick, we are disabled, and we are dying because of charlatans like you." Paul Garner spotted Full translation below 👇 🧵 1/ 25526
Nicky Proctor @nickyproctor.bsky.social · 17/04/2026Are you a GP who needs to update your knowledge? 👇 053
Reposted by Nicky ProctorAdam @abrokenbattery.bsky.social · 12/04/2026Professor Chris Ponting on how findings from the largest genetic study in #MECFS show “there is an organic disease called ME”. “We’ve had letters from GPs saying we have changed their minds” Clip from Hope 4 ME & Fibro NI Collaboration 36227
Reposted by Nicky ProctorAdam @abrokenbattery.bsky.social · 16/04/2026BBC Radio 4 Feedback full segment. Listeners share their concerns about Dr Suzanne O’Sullivan’s claim that #LongCOVID is psychosomatic. Includes an interview with @NickyProctor (11 mins) youtu.be/Du4devaRH5w?...youtu.beBBC Feedback | Response to Suzanne O’SullivanYouTube video by Broken Battery 056
Reposted by Nicky ProctorAdam @abrokenbattery.bsky.social · 17/04/2026Nikki Proctor on BBC Radio 4’s Feedback says she was surprised Amol Rajan didn’t raise #MECFS with Suzanne O’Sullivan on his podcast, after O’Sullivan said #LongCOVID was largely psychosomatic, given the “backlash and criticism of her position” on #MECFS. 11511
Reposted by Nicky ProctorLong Covid Advocacy @longcovidadvoc.com · 16/04/2026👏Excellent commentary to @BBCR4Feedback by Helen Gibson, @tedmonroe91.bsky.social & @nickyproctor.bsky.social 🧪 It also shows the power of @DecodeMEstudy in refuting stigmatising, outdated & false views of people like O'Sullivan. 1166
Reposted by Nicky ProctorKathryn Hoffmann @kathrynhoffmann.bsky.social · 30/03/2026🚨What is the problem with just testing PEM with the screening questionnaire DSQ-PEM and then stratify accordingly? A screening questionnaire is not a diagnostic tool. Using DSQ-PEM alone is insufficient because: It includes a large proportion of false positives! ⚠️ Why? 1/n 13513
Reposted by Nicky ProctorThe Conversation UK @uk.theconversation.com · 20/03/2026It’s estimated that 10% of women worldwide are affected by endometriosis.tcnv.linkWhy endometriosis should be classified as a whole-body inflammatory disorderIt’s estimated that 10% of women worldwide are affected by endometriosis. 064
Reposted by Nicky Proctorvalebodi.bsky.social @valebodi.bsky.social · 19/03/2026WHAT IF YOU LOST HALF THE HOURS IN YOUR DAY? YOUR WEEK? YOUR YEAR? #ME/CFS causes a 50% reduction in pre-illness activity (at least). Every COVID infection increases your risk. It can happen to anyone. Practice self care & protect your community. Wear a mask This & more ko-fi.com/saltydyke/shop 1117
Reposted by Nicky ProctorWomen's Budget Group @womensbudgetgrp.bsky.social · 05/03/2026These gendered inequalities don’t exist in isolation. They intersect with inequalities related to class, race, disability, sexual orientation and gender identity, creating even greater barriers to access, treatment and outcomes for many groups of women. Read more 👇 www.wbg.org.uk/article/unde...wbg.org.ukUnder strain: How NHS pressures are deepening health inequalities for womenHealth inequalities in the UK are not only about income or geography. They are also shaped by gender - affecting different groups of women in distinct ways. 022
Nicky Proctor @nickyproctor.bsky.social · 15/03/2026I thought I’d go and see my Mam today, with it being Mother’s Day. She’s 88 and has advanced dementia, she won’t know if I go or not - but I do. I can’t, because of an #ME flare that’s kept me in bed. Love to others in sim situation. 🥰 to all. 141
Reposted by Nicky ProctorLitsa Dremousis @litsadremousis.bsky.social · 15/03/2026Today is #LongCovidAwarenessDay and--once again for the cheap seats--ANYONE who's had Covid, particularly folks who've had it more than once, can develop #LongCovid. It's an insidious post-infectious illness like #MyalgicEncephalomyelitis. So far, no treatment or cure www.longcovidawareness.lifelongcovidawareness.lifeInternational Long Covid AwarenessLong Covid Long Covid Awareness Day March 15th #LongCovid #LongCovidAwarenessDay COVID Viral persistence PASC. COVID19 Long Covid awareness ribbon colors grey/teal/black 01311
Reposted by Nicky ProctorJane Hill @janehill.bsky.social · 01/03/2026It’s Ovarian Cancer Awareness Month, everyone. There’s no routine screening for ovarian cancer, and it isn’t picked up by other gynaecological screening (such as smear tests). But if you do think it might be a possibility, you can ask your GP for a blood test and/or a scan. 26880
Reposted by Nicky ProctorRobert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 26/02/2026Jonathan Edwards and other members of @scienceforme.bsky.social are drafting a document on what we want in terms of service provision for ME/CFS. Latest draft here: www.s4me.info/threads/a-th... All welcome to comment and make suggestions before the document before it is finalised.s4me.infoA thread on what people with ME/CFS need in the way of serviceI don't think trying to gather lots of signatories would be a good idea here. there are too many competing political interests. At this stage I am not sure that a signed letter is the way to go in fac... 21713
Reposted by Nicky ProctorMichiel @murtoz.bsky.social · 26/02/2026@ashleydaltonmp.bsky.social @tessamunt.bsky.social pls take this seriously. I'm begging you. QEH's approach is UNSAFE for pwME. I am sure it would be fine for someone who isn't in rolling PEM - but that's not the case and it will kill her. 9 weeks without eating now, in agony and gastric shutdown. 044
Reposted by Nicky ProctorMichiel @murtoz.bsky.social · 26/02/2026#SaveSavannah #SevereMErgency #pwME please repost and boost the below. Nobody is willing to intervene. The health minister must step in and prevent a tragedy 0129
Nicky Proctor @nickyproctor.bsky.social · 26/02/2026@cabruce.bsky.social @katybrc.bsky.social @actionforme.bsky.social @meresearchuk.bsky.social @meactnet.bsky.social @malnutritionme.bsky.social #ME 030