iiinova — where your digital self keeps evolving

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Robin Moira White @robinmoirawhite.bsky.social · 27/09/2026

The Labour Party’s women’s conference on 26/9/26 was an embarrassing farce, with only 200 delegates of the 1,000 normal attendance (no major unions) in protest of the Labour Party’s shameful abandonment of trans people following the legally absurd ruling of the Supreme Court in FWS in April 2025.

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Long Covid Advocacy @longcovidadvoc.com · 24/09/2026

Extraordinary to see ME covered like this in mainstream media. The truth is the neglect is so staggering people can't believe it. As George says " has seldom been a stronger case for a public inquiry." 🖇️article 👇

Across the decades, millions of people have been neglected, dismissed and mistreated, and still it goes on. We need to ask why so many patients have been abandoned, why discredited and dangerous treatments continue to be prescribed and why ignorance and neglect still dominate, in the health system and beyond. In other words, there has seldom been a stronger case for a public inquiry.

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Alem Matthees @alemmatthees.bsky.social · 28/09/2026

(1/12) No. The painful truth about #LongCOVID is not the alleged suppression of brain retraining, but that the scale of the pandemic and aftermath were preventable. Systemic and collective failures emerged from a chain of poor decisions. Millions dead. Millions of lives ruined. Trillions $ lost.

wired.com

The Painful Truth About Long Covid

There might finally be a way forward for long Covid treatment—if only you were allowed to talk about it.

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Chris Ponting @cgatist.bsky.social · 28/09/2026

The 2026 PRIME symposium kicks off with reflections from Kelly McLellan on the importance of Patient and Public Involvement in ME/CFS research. #Prime26 #pwME #mecfs

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Long Covid Advocacy @longcovidadvoc.com · 24/09/2026

Phenomenal article. Thank you George. An inquiry is desperately needed. But Wessely also got himself appointmented to the JAC Judicial Appointments Board, which also advises on tribunals. Covered here: www.longcovidadvoc.com/post/the-wes...

longcovidadvoc.com

The Wessely Wizard of Oz

Part Two - The Wessely Files. Do we have a wizard in our midst?

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Mitch McConnell's shambling corpse 🧟‍♂️ @checarina.bsky.social · 25/09/2026

sth I think about a lot is how exercise is casually framed as virtuous, wholly beneficial activity by just about everyone--including people who think they're body-positive, disability allies, etc.--to the point that we're trained to ignore our own bodies' alarms about pain and fatigue

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Natasha Devon @natashadevon.bsky.social · 24/09/2026

George will be coming on my show this weekend to discuss this very important article.

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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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Lucibee @lucibee.bsky.social · 24/09/2026

If folks need an impression of how dismal things are wrt treatment of ME and LC in the NHS, you just need to look at the services stocktake that was done in January 2025. There was "no data" for ME/CFS clinic referrals.

Annex 1 - Data Dashboard - Long Covid ME/CFS Stock take December 2024.

Highlighted box shows that there is NO DATA for total referrals to ME/CFS clinics for the period examined in the stocktake.

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ME/CFS San Diego @mecfssd.bsky.social · 24/09/2026

Trigger Warning, Arnaud Denis: Person with severe ME/CFS died by euthanasia in Belgium on Sept. 22. ME Global Chronicle shares his account of healthcare and final message to fellow patients. meglobalchronicle.wordpress.com/2026/09/23/i...

meglobalchronicle.wordpress.com

I’m done with medical abuse

Arnaud Denis, a 43-year-old French director and actor, passed away in Belgium on September 22, 2026. A few years ago, following surgery, he developed a very severe case of ME/CFS. He chose to under…

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David Tuller @davetuller1.bsky.social · 25/09/2026

Journal of Psychsomatic Research has recently published a first-person narrative of "cure" from the Lightning Process as if it were bonafide scientific "research" that somehow proved that the LP was effective. virology.ws/2026/09/25/t...

virology.ws

Trial By Error: Journal of Psychosomatic Research Publishes First-Person Account of "Cure" with the Lightning Process | Virology Blog

By David Tuller, DrPH The Journal of Psychosomatic Research (JPR), an official publication of the European Association of Psychosomatic Medicine (EAPM), has ...

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Michiel @murtoz.bsky.social · 25/09/2026

@tessamunt.bsky.social this is an utter necessity if we are to have credible care & soc sec'y for #pwME. As long as bacme are involved we will just be pushed to pace up. Read the article Niamh links in the first post in that thread. As far as we know that BPS dogma is still official DWP guidance

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Long Covid Advocacy @longcovidadvoc.com · 23/09/2026

Our original article to Miranda's 'I Haven't Been Entirely Honest with You' We still hope Miranda can use her considerable platform to advocate responsibly & amplify that people with severe ME have no commissioned NHS care. www.longcovidadvoc.com/post/dear-mi...

longcovidadvoc.com

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#MEAction Network @meactnet.bsky.social · 23/09/2026

Scientific Director Jaime Seltzer @exceedhergrasp1.bsky.social reporting live (virtually) from the NIH From Mechanisms to Medicine conference. #pwME #MyalgicEncephalomyelitis #MECFS #LongCovid #ChronicIllness #NIH

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Something Chronic @somethingchronic.bsky.social · 21/09/2026

Eugenicists making decisions about health… wtf

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Steve Fifield @stevefifield.bsky.social · 19/09/2026

I’ve just donated to Justice4ME. Over a year since the ‘Final Delivery’ plan for ME was published yet still: - Most NHS think we’re just a bit tired - We aren’t getting better - No treatments - Services cut - No public awareness - Barely funded - Severe ME patients still being harmed justice4me.uk

crowdjustice.com

NHS care for ME now

Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.

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valebodi.bsky.social @valebodi.bsky.social · 19/09/2026

HHV-B6 integration into mitochondrial DNA found by Finnish researchers The analysis unexpectedly revealed integrations of HHV-6B into mitochondrial DNA. HHV-6B integrations into mitochondrial DNA occurred in three kidney samples. One of these junctions was between the unique region (U36 gene) of

hhv-6foundation.org

Finnish investigators find unexpected evidence of HHV-6B integration into mitochondrial DNA | HHV-6 Foundation | HHV-6 Disease Information for Patients, Clinicians, and Researchers | Apply for a Grant

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Adam @abrokenbattery.bsky.social · 16/09/2026

Having the reality of your illness denied “is almost as bad as the actual physical symptoms themselves.” Ed Yong, speaking about #LongCovid patients being disbelieved and dismissed, and how gender and racial bias affect their care.

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 11/09/2026

Master post of each talk re: the Stanford #MECFS Community Symposium: 🧪 Talk 1: bsky.app/profile/exce...

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#MEAction Network @meactnet.bsky.social · 11/09/2026

Attending the Community Symposium on the Molecular Basis of ME/CFS Stanford University. Ron Davis says this symposium has been "the best meeting I have been to for ME/cfs." The previous days are confidential but today is open to the community. It will be recorded & shared! @openmedf.bsky.social

Photo of Ron Davis and Janet Dafoe starting the Symposium. (White elder man and woman sitting in a library on a screen for the meeting)

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David Tuller @davetuller1.bsky.social · 09/09/2026

A study of The Switch, New Zealand's version of the Lightning Process, has generated some meaningless results--yet the paper suggests the findings are so robust that it "could be argued" that no RCT is needed to recommend the intervention. Hm. virology.ws/2026/09/09/t...

virology.ws

Trial By Error: A Study of The Switch, New Zealand's Homegrown Version of the Lightning Process, Yields Meaningless Findings | Virology Blog

By David Tuller, DrPH The Switch is a New Zealand variant of the Lighting Process, the so-called “mind-body” intervention created by a Phil Parker, a Britis ...

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Something Chronic @somethingchronic.bsky.social · 11/09/2026

Huge thank you to Jaime, Scientific Director of ME Action, for reporting on the #ME/CFS Stanford Community Symposium live for us all! If you’re able, you can follow along below for invaluable info about where ME research is currently at! (I can’t at mo but will come back to read when I’m able!) 💙

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Michiel @murtoz.bsky.social · 11/09/2026

This one trick eugenicist asshole is so farcical - or he would be if he wasn't so fucking vile. Our government's reliance upon him so. fucking. blatant. He did exactly the same when toxic gas was released at heathrow over 20 years later. He was just as wrong, but the article is still up ofc.

trialbyerror.org

“Mass Psychogenic Illness” at Heathrow Airport–NOT! – Trial By Error

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Tom Kindlon @tomkindlon.bsky.social · 06/09/2026

🧵 Impact of cognitive dysfunction in ME/CFS from ME Research UK Careers are impacted, cherished hobbies become exhausting, and relationships grow strained. www.meresearch.org.uk/the-experien... #BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME 1/

Impact of cognitive dysfunction (brain fog) in ME/CFS
"I'm just about to lose my job. I haven't been able to attend for months. I used to be a multi tasking, problem solving, target meeting, very hard worker. Now I can barely coordinate my medical appointments or reliably string a sentence together."
Response from ME Research UK Symptom Saturday Cognitive Dysfunction Survey
R E SiEjAit C H SCO36942
INFORM. INFLUENCE. INVEST.

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Tom Kindlon @tomkindlon.bsky.social · 05/09/2026

"While caring for a husband with early-stage dementia they pushed through relentlessly & ended up totally bed-bound.Their message to the group was to respect your own limits & stay tuned in to your body,because the cost of caregiving can be losing the very capacity to help" #PostExertionalMalaise 1/

Tom Kindlon's ME CFS & related page: News, Research and more
Published by Tom Kindlon-pwme(tooltip)Only people who manage this Page can see who's published · S͏s͏t͏p͏o͏e͏o͏n͏r͏d͏g͏6͏6͏w͏g͏4͏m͏8͏s͏u͏g͏f͏o͏u͏f͏4͏c͏0͏l͏n͏i͏5͏u͏c͏i͏a͏7͏f͏u͏i͏g͏ ͏h͏h͏3͏7͏3͏m͏i͏5͏f͏3͏i͏1͏1͏9͏J͏7͏1͏t͏ ·
"Participant shared a caution drawn from their own experience. While caring for a husband with early-stage dementia they pushed through relentlessly and ended up totally bed-bound. Their message to the group was to respect your own limits and stay tuned in to your body, because the cost of caregiving can be losing the very capacity to help." 🙁
From BHC August Event Recap: "Caretaking While Chronically Ill - Parenting or Caring for Family Members"

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Tom Cox @dj-acid-reflux.bsky.social · 04/09/2026

A big ask, no pressure & I know people have better things to do but if about 15-20 people buy this from Blackwell's in the next few hours it's likely I'd have the number 1 & 2 books in their chart & that might be enough to finally persuade an American publisher to get my books out over there...

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ME/CFS Science @mecfsscience.org · 04/09/2026

1) A new paper on ME/CFS is getting media attention: it's about how the chromosomes containing our DNA are folded. These 3D structures can influence the expression of genes. Unfortunately, I don't think this study warrants all the attention...

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Tom Kindlon @tomkindlon.bsky.social · 02/09/2026

“Trial By Error: Patient Advocate Anil van der Zee @anilvanderzee.bsky.social Receives Dutch Royal Distinction” By David Tuller @davetuller1.bsky.social virology.ws/2026/09/02/t... #MyalgicEncephalomyelitis #MEcfs #CFS #PwME #SevereME

Trial By Error: Patient Advocate Anil van der Zee Receives Dutch Royal Distinction
2 Comments / By David Tuller / 2 September 2026
By David Tuller, DrPH

Last month, I was delighted to hear that my friend Anil van der Zee, who has been bed bound with ME/CFS for years, had been selected to receive a royal honor for his indefatigable efforts to advocate for patients. The award—Knight in the Order of Orange-Nassau—was presented to him in his flat on Friday, August 29th, by Amsterdam mayor Femke Halsema. Also present was Frans Huppert, Anil’s care-giver and former partner.

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Tom Kindlon @tomkindlon.bsky.social · 01/09/2026

Edzard Ernst @edzard.bsky.social , a German professor emeritus of Complementary Medicine, has written a short and critical article on his blog about a planned study in Canada on the alternative method Lightning Process as LC-treatment edzardernst.com/2026/08/the-... #LongCovid #MEcfs 1/

Edzard ErnstMD, PhD, MAE, FMedSci, FRCP, FRCPEd.
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« Nathan Cofnas and his “race realism”Physicians Sue US Government to Withdraw Bogus Dietary Guidelines »
The ‘Lightning Process’ – a new trial is starting
Published Sunday 23 August 2026
McMaster University has launched a trial to evaluate the Lightning Process (LP). We have discussed the LP before, e.g.:

Almost anyone can recover from long Covid: just pay a lot of money for the ‘Lightning Process’ – no, please don’t; I was joking!
ME/CFS: Yes, the ‘Lightning Process’ is nonsense, but is there any other so-called alternative medicine worth trying?
The ‘Lightning Process’ (LP), an effective therapy for ME?
The ‘Lightning Process’: implausible, unproven, hyped and expensive
LP is a commercial programme developed by Phil Parker based on ideas from osteopathy, life coaching and neuro-linguistic programming. It has been endorsed by celebrities like Martine McCutcheon and Esther Rantzen, who credits it for her daughter’s recovery from ME. Parker claims that LP works by teaching people to use their brain to “stimulate health-promoting neural pathways”. Allegedly, the LP teaches individuals to recognize when they are stimulating or triggering unhelpful physiological responses and to avoid these, using a set of standardized questions, new language patterns and physical movements with the aim of improving a more appropriate response to situations.

The new trial is an open-label study that compares LP against standard activity in 100 adults, using self-reported fatigue as its primary outcome. The trial’s design raises serious scientific, methodological, and ethical concerns.

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Adam @abrokenbattery.bsky.social · 01/09/2026

Karen Gordon Update Sign the petition www.change.org/p/save-karen...

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Fleet Street Fox @fleetstreetfox.bsky.social · 24/08/2026

Former Bournemouth MP and Veterans Minister Tobias Ellwood believes he was “directly lied to” by officials at the Ministry of Defence about its secret programme of human radiation experiments. Here’s What They Don’t Want You To Know: whattheydontwantyoutoknow.substack.com/p/ex-tory-mi...

whattheydontwantyoutoknow.substack.com

Ex-Tory minister tells of 'shame' over his role in Nuked Blood Scandal

Police expand their major crime review into cover-up allegations as former defence minister Tobias Ellwood says officials 'directly lied' to him

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Adam @abrokenbattery.bsky.social · 28/08/2026

These graphs show the scale of the neglect. In the 20 years before the pandemic, Sky News found just 2,007 new scientific publications on ME/CFS compared with nearly 45,000 on psoriasis and 114,000 on Parkinson’s.

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valebodi.bsky.social @valebodi.bsky.social · 22/08/2026

Pacing is not a true treatment, but rather an attempt to limit further deterioration - and anything but wellness. It frequently means adopting the most severe restrictions to one’s ADLs to avoid further rolling #PEM and a lowering of your baseline. #PwME must sacrifice their quality of life in

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Michiel @murtoz.bsky.social · 20/08/2026

Because the dwp isn't for *disabled people* It's for keeping costs down. It's for social murder & eugenics of the useless eaters And unfortunately it is quite good at its job.

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Robert Reich @rbreich.bsky.social · 19/08/2026

Casual reminder that the myth of “pulling yourself up by your bootstraps” is a cruel hoax designed to convince poor people from all walks of life that the injustices they face are a result of their own actions, rather than an oppressive system rigged against them.

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Robin Ince @robinince.bsky.social · 19/08/2026

I am happy to announce that I have become a patron of @transactualuk.bsky.social

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Carole Bruce @cabruce.bsky.social · 19/08/2026

Now that @tessamunt.bsky.social (chair of the APPG for #ME) has sent this initial letter to JamesFrith MP she plans to follow up with a series of letters on specific issues. She is working incredibly hard on behalf of #pwME and I’m so grateful.

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Tom Kindlon @tomkindlon.bsky.social · 15/08/2026

“On BPS [BioPsychoSocial] & disease causation: George Davey Smith’s cautionary tale” by Prof Chris Ponting @cgatist.bsky.social mecfsresearchreview.me/2026/08/11/o... #MEcfs #PwME #CFS

On BPS & disease causation: George Davey Smith’s cautionary tale
August 11, 2026 Comments 0 Comment
Print Friendly, PDF & Email
by Professor Chris Ponting

A guide to the Biopsychosocial model recently put out by Long Covid Advocacy ultimately brought me to a 2005 book chapter, written by Professor George Davey Smith, entitled The biopsychosocial approach: a note of caution in Biopsychosocial Medicine: An Integrated Approach to Understanding Illness, edited by Peter White and published by Oxford University Press. The chapter is available from a University of Bristol website. I thought the divergence of opinion between Profs Davey Smith and Wessely was sufficiently interesting to write this short commentary.

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Eddie Robson @eddierobson.bsky.social · 15/08/2026

Just lodged a complaint about this. www.bbc.co.uk/contact/comp...

bbc.co.uk

Make A Complaint | Contact the BBC

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Simon Wyatt 🇺🇦 @drsimonwyatt.bsky.social · 15/08/2026

Written a complain to the BBC. If everyone reading this did so, it will be the most-complained matter of the month

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Tessa Munt MP 🔶 @tessamunt.bsky.social · 15/08/2026

Congrats to James Frith MP, newly appointed as the Minister for Health Innovation, with responsibility for ME. I’ve written to him on ME emphasising that given the numbers, and the length and extent of suffering, ME represents a significant burden at personal level, to society and to our economy.

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Dan Sohege @danielsohege.bsky.social · 15/08/2026

Kathleen Stock has repeatedly shown herself to be abusive and hostile towards minorities. She epitomises transphobes, by attacking anybody she sees as different. It is all about exclusion for those deemed 'not us". Bigotry never stops at one group.

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Hacked Off @hackedoff.bsky.social · 15/08/2026

Jason Arday has tragically died after a vicious campaign of press hounding and harassment. We urgently need an inquiry into the culture of the press. Add your name to demand one now: hackedoff.org/campaign-actions/demand-an-inquiry-into-the-culture-of-the-press

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Michiel @murtoz.bsky.social · 13/08/2026

and everybody including the coroner shrugs when it happens to *yet another* one of us where NHS withholds safe nutrition and causes permanent worsening and/or another person stuck in hospital *yet again*. And I wouldn't be surprised if this was becoming a monthly or bi-monthly occurence by now.

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Campaign for Disability Justice @campaignfdj.bsky.social · 13/08/2026

Could you make the UK a better place? Tell the Government how to allocate the autumn budget and why. Yes - we all get a say (survey open until 9 September) buff.ly/Ip3bIWU

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Tom Kindlon @tomkindlon.bsky.social · 13/08/2026

A Life Hidden @naomiwhitt.bsky.social : The Burden of Chronic Illness That I Rarely Talk About alifehidden.com/2026/07/30/b... Screenshot from latest Science for ME weekly update #chronicillness #MEcfs #PwME #CFS #ME #MyalgicE

A Life Hidden The Burden of Chronic Illness That I Rarely Talk About
Naomi Whittingham writes beautifully and insightfully on the harsh existence of chronic illness:
"Those who see me at my laughing, smiling best could never imagine the delicate balancing act behind every moment. The impossible decisions over what is too much or not enough; the silent background calculations as to how close I might be to collapse. There is always sacrifice: always a demand from past or future that necessitates a scaling back in the present."
Article l Thread

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