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Nicky Proctor

@nickyproctor.bsky.social
527 followers 836 following 66 posts

New here... Writing up my PhD in coach learning and development. Love learning, family, ancestry and tolerance. Campaigning for better healthcare for ME #Biggest Medical Scandal of 21st Century

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Reposted by Nicky Proctor
Binita Kane @binitakane.bsky.social · 24/09/2026
Thank you George. This is the absolute reality of what patients are going through - it’s great to see mainstream journalism on this.
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Tina Rodwell @tinarodwell1.bsky.social · 24/09/2026
Those 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
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Tina Rodwell @tinarodwell1.bsky.social · 24/09/2026
There 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.
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Tina Rodwell @tinarodwell1.bsky.social · 24/09/2026
How 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
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Tina Rodwell @tinarodwell1.bsky.social · 24/09/2026
You 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.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes 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
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George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here'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.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes 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
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Tessa Munt MP 🔶 @tessamunt.bsky.social · 24/09/2026
Thank you so much, George! Your conclusion speaks volumes, reflecting so much that I hear from #pwME.
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ThereForME @thereforme.bsky.social · 23/09/2026
We 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.uk
ThereForME is now a registered charity
What it means for our work, and how you can get involved
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ThereForME @thereforme.bsky.social · 23/09/2026
We're excited to share something we've been working on for a while. ThereForME is now a registered charity! 🥳 1/4
We’ve got news!

ThereForME is now a registered charity. 

ThereForME is a Charitable Incorporated Organisation
registered in England and Wales. Registered Charity No. 1218590.
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George Monbiot @georgemonbiot.bsky.social · 21/09/2026
Thanks 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
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Healthwatch York @healthwatchyork.bsky.social · 21/09/2026
We'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
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George Monbiot @georgemonbiot.bsky.social · 21/09/2026
Intending 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.
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Tessa Munt MP 🔶 @tessamunt.bsky.social · 03/09/2026
To 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.
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Tessa Munt MP 🔶 @tessamunt.bsky.social · 08/08/2026
Thanks 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
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ThereForME @thereforme.bsky.social · 21/07/2026
You 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 👇
"Data on ME matters because numbers drive resources and political attention. If the number under-represents the scale of the issue, the response will be insufficient." - Emma Gore-Lloyd, #ThereForME. New #ThereForME Substack post
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Long 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.com
Cooling Tips 101
How 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...
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Long 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 🖇️👇
An infographic titled "Cooling tips for people with chronic illness" from Long Covid Advocacy in the file 18857.png. It details advice across several sections:
 * Summary: Heat increases symptom burdens; accommodations are vital.
 * Medication: Beta blockers and antihistamines can impair sweating.
 * Cool on the outside: Use soaked towels, ice packs, cooling mats, mist.
 * Cool on the inside: Suck ice cubes, store iced water, drink electrolyte lollies.
 * Cool Zone: Use AC, fans with ice packs, open loft hatches, wet sheets.
 * Cool House: Open windows early/late, close blinds during peak heat, use reflective film.
 * Pacing, Sensory, Check-in, & Care: Rest more, reduce sensory load, check on vulnerable community members, and pre-prep meals/cool boxes.
 * Rights: Outlines UK workplace accommodations under the Equality Act 2010 (e.g., remote working, flexible hours).
 * Bonus tips: Includes an ORS recipe for 1L water, treat ideas, and pet care.
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David Tuller @davetuller1.bsky.social · 31/05/2026
An 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.ws
Trial By Error: Interview with Chris Ponting about "Sequence ME & Long Covid" | Virology Blog
By 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 ...
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Dan Neidle @danneidle.bsky.social · 28/05/2026
Britain 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.
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ME/CFS Research Foundation @mecfsresearch.bsky.social · 28/04/2026
New 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
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Tessa Munt MP 🔶 @tessamunt.bsky.social · 17/05/2026
Thinking of the #ME community this #BlueSunday, especially those who are struggling to participate or for whom it brings painful memories. You are not forgotten.
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Dr Jo Greer @drjogreer.bsky.social · 16/05/2026
youtu.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/6iRbQNX07zY
youtu.be
Blue Sunday - The Online Concert for M.E. 2026
YouTube video by Blue Sunday - The Online Concert for M.E.
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Dr Jo Greer @drjogreer.bsky.social · 16/05/2026
Amazing 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/i4bsc26
justgiving.com
Blue Sunday for ME - Online Concert 2026: Fundraising for ME/CFS Research
Help Isaac Greer raise money to support The University of Edinburgh
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Dr Nicola Clague-Baker @claguenjc36.bsky.social · 07/05/2026
1. 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.
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Dr Nicola Clague-Baker @claguenjc36.bsky.social · 12/05/2026
It 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
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Long Covid UK @longcoviduk.bsky.social · 12/05/2026
Join 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/
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Nicky Proctor @nickyproctor.bsky.social · 12/05/2026
mecfsresearchreview.me/2026/05/12/d...
mecfsresearchreview.me
DNA sequencing study to help pinpoint biology of ME gets £4.7m
The 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…
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Dr Seth Thévoz @seththevoz.bsky.social · 08/05/2026
It 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.
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valebodi.bsky.social @valebodi.bsky.social · 27/04/2026
Human 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 in
onlinelibrary.wiley.com
<em>Brain Pathology</em> | ISN Neuropathology Journal | Wiley Online Library
Severe 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 ...
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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.”
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David Tuller @davetuller1.bsky.social · 26/04/2026
eClinicalMedicine, 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.ws
Trial By Error: Claims on Exercise for Long COVID Were "Overly Assertive," Agree Meta-Analysis Authors | Virology Blog
By 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 ...
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Long 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/
A group of people are gathered on and near a stage during a presentation or event. In the foreground, a person in a white shirt and patterned skirt stands with their back to the camera. To the left, a man in a grey blazer points toward a woman in a maroon shirt who is holding a microphone. In the background, a man stands behind a podium with a laptop, while a man in a blue suit walks toward the right side of the frame. A yellow caption at the bottom of the image reads, "Et nous dénoncerons, nous attaquerons tous les projets,".
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Nicky Proctor @nickyproctor.bsky.social · 17/04/2026
Are you a GP who needs to update your knowledge? 👇
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Nicky Proctor @nickyproctor.bsky.social · 17/04/2026
👇
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Adam @abrokenbattery.bsky.social · 12/04/2026
Professor 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
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Adam @abrokenbattery.bsky.social · 16/04/2026
BBC 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.be
BBC Feedback | Response to Suzanne O’Sullivan
YouTube video by Broken Battery
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Adam @abrokenbattery.bsky.social · 17/04/2026
Nikki 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.
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Long 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.
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John Peters @johnthejack.bsky.social · 02/04/2026
Letter in Times today
Text:

Sir, Parents face significant struggles navigating the autism assessment and diagnosis system. Long waiting lists, layers of bureaucracy and poor support after diagnosis leave families feeling exhausted and alone. The notion that children are being “incentivised” to seek an autism diagnosis conjures up the idea that families are somehow seeking a shallow reward. In reality, the incentive in question is getting basic support in school or accessing mental health services to prevent their child from reaching a crisis point.

Language shapes public perception, and taken out of context it can have a negative impact on understanding and support for autistic people. We need to keep the focus on how we can improve systems so that autistic children and young people achieve better outcomes and live happier lives.
Jolanta Lasota
Chief executive, Ambitious about Autism
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Kathryn 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
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The Conversation UK @uk.theconversation.com · 20/03/2026
It’s estimated that 10% of women worldwide are affected by endometriosis.
tcnv.link
Why endometriosis should be classified as a whole-body inflammatory disorder
It’s estimated that 10% of women worldwide are affected by endometriosis.
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valebodi.bsky.social @valebodi.bsky.social · 19/03/2026
WHAT 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
Black on white background poster with QR code in the bottom right corner reading:

WHAT 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
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Women's Budget Group @womensbudgetgrp.bsky.social · 05/03/2026
These 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.uk
Under strain: How NHS pressures are deepening health inequalities for women
Health 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.
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Nicky Proctor @nickyproctor.bsky.social · 15/03/2026
I 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.
Vase of colourful flowers.
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Litsa Dremousis @litsadremousis.bsky.social · 15/03/2026
Today 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.life
longcovidawareness.life
International Long Covid Awareness
Long Covid Long Covid Awareness Day March 15th #LongCovid #LongCovidAwarenessDay COVID Viral persistence PASC. COVID19 Long Covid awareness ribbon colors grey/teal/black
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Jane Hill @janehill.bsky.social · 01/03/2026
It’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.
SYMpToMs
OF
OVARIAN CANCER
FEELING FULL QUICKLY AND/OR LOSS OF APPETITE
1
2
PERSISTENT BLOATING
(NOT BLOATING THAT COMES AND GOES)
3
NEEDING TO WEE MORE URGENTLY
OR
MORE OFTEN THAN USUAL
4
PAIN IN YOUR TUMMY OR PELVIS (THE AREA BETWEEN YOUR HIP BONES)
Target
Ovarian Cancer
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 26/02/2026
Jonathan 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.info
A thread on what people with ME/CFS need in the way of service
I 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...
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Michiel @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.
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Michiel @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
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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
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