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Nicky Proctor

@nickyproctor.bsky.social

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

65 Posts519 Follower830 Folgt
ThereForME@thereforme.bsky.social · 2w ago

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
David Tuller@davetuller1.bsky.social · 2mo ago

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...

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 ...

virology.ws

Dan Neidle@danneidle.bsky.social · 2mo ago

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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Dr Nicola Clague-Baker@claguenjc36.bsky.social · 3mo ago

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

Physios For ME@physiosforme.bsky.social · 3mo ago

This #MEawarenessDay we are delighted to have an article published in in the Chartered Society of Physiotherapy's magazine "Frontline", which goes out to all chartered physiotherapists in the UK (that's over 67,000!) www.csp.org.uk/frontline/ar...

Long Covid Support@longcovidsupport.bsky.social · 3mo ago

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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Dr Seth Thévoz@seththevoz.bsky.social · 3mo ago

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 · 3mo ago

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

<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 ...

onlinelibrary.wiley.com

David Tuller@davetuller1.bsky.social · 3mo ago

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...

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 ...

virology.ws

David Tuller@davetuller1.bsky.social · 3mo ago

A Lancet journal, eClinicalMedicine, published a flawed. meta-analysis that promoted exercise interventions for Long COVID. The journal has published my letter rebutting this claim. virology.ws/2026/04/23/t...

Long Covid Advocacy@longcovidadvoc.com · 3mo ago

👌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,".
Winslow Santé Publique@winslowsp.bsky.social · 3mo ago

La psychologisation des #CovidLong, ça suffit. Action non-violente de patient·es CL de Winslow et @actioncovidlong.bsky.social lors d’une conférence européenne sur le COVID long organisée par les Pr Lemogne/ Ranque, de l'unité Casper 👇

Adam@abrokenbattery.bsky.social · 4mo ago

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

Adam@abrokenbattery.bsky.social · 4mo ago

Professor Chris Ponting on the 116 blood molecule differences his team found in people with #MECFS “This is not a psychological disease” people did not alter their blood molecules just to “spook the psychiatrists”. Clip from Hope 4 ME & Fibro NI 2026

Adam@abrokenbattery.bsky.social · 4mo ago

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.

Adam@abrokenbattery.bsky.social · 4mo ago

Helen Gibson and Edward Monroe on BBC Radio 4’s Feedback challenge Suzanne O’Sullivan’s claims that #LongCovid is largely psychosomatic when she was interviewed on Amol Rajan’s podcast. Mentions #MECFS, NICE’s 2021 guidance and DecodeME genetic findings.

Long Covid Advocacy@longcovidadvoc.com · 4mo ago

👏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.

Long Covid Advocacy@longcovidadvoc.com · 4mo ago

1️⃣ BBC Radio 4 is framing Suzanne O’Sullivan’s perspective as “radical.” It isn’t. It’s a familiar move: when medicine doesn’t yet have answers, the problem is relocated from the body to the mind. BBCR4Feedback is covering the response to Amol Rajan TODAY at 3.30 🧵

Kathryn Hoffmann@kathrynhoffmann.bsky.social · 4mo ago

🚨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

Women's Budget Group@womensbudgetgrp.bsky.social · 5mo ago

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...

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.

wbg.org.uk

Nicky Proctor@nickyproctor.bsky.social · 5mo ago

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.