iiinova — where your digital self keeps evolving

Reposted by Michiel

It's ME(Jaime) @exceedhergrasp1.bsky.social · 15h

Our paper about the challenges and opportunities in decentralized clinical trials for #LongCOVID is out! We discuss the regulatory, clinical, & disease-specific challenges we faced in building a clinical trial network for Long COVID. Please read and share with your networks! 🧪

frontiersin.org

Frontiers | Facilitators and barriers to decentralized Long COVID platform clinical trials using repurposed drugs

Long COVID is an emerging chronic condition that results in substantial impairments in quality of life, physical function, and ability to maintain gainful em...

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Darren Parkinson @greendarrenshipley.bsky.social · 01/10/2026

I am no longer a registered nurse. Not through any choice, but because I got #LongCovid. 2 years ago I lost my nursing job because I'm too ill too work. Today my nursing registration expired. 20+ yrs given to the NHS. Ended by getting a disease without a cure.

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Danielle Beckman @daniellebeckman.bsky.social · 22h

The @islc-pais.bsky.social conference website has been attacked and hacked *again*. At some point, you have to ask: who benefits from repeatedly disrupting scientific communication about #LongCOVID? ⚠️ For now, please do not click any links sent from or through islc-pais.org Stay safe 🫂

ISLC PAIS Website page showing it is temporarily unavailable

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George Monbiot @georgemonbiot.bsky.social · 23h

@davetuller1.bsky.social, a great champion of patients, interviewed me about the massive, ongoing scandal of the neglect, abuse and mistreatment of people with ME/CFS www.youtube.com/watch?v=Maae...

youtube.com

Interview with George Monbiot about Guardian column on ME/CFS

YouTube video by David M Tuller

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Disability News Service @johnpring.bsky.social · 02/10/2026

The government’s youth inactivity adviser called Disability News Service’s editor a f***ing w**ker after being challenged about his failure to discuss the safeguarding risks involved in forcing tens of thousands of young disabled people into jobs. www.disabilitynewsservice.com/labours-inac...

disabilitynewsservice.com

Labour’s inactivity adviser swears at DNS editor after being challenged on safety of young claimants

The government’s youth inactivity adviser swore at Disability News Service’s editor after being challenged about his failure to discuss the safeguarding risks involved in forcing tens of thousands …

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Paula Peters @paulapeters19.bsky.social · 02/10/2026

#TimmsReview #PIP The entire Timms PIP review is a shambolic sham. There has never been or intended to be real co production with disabled people at all. These workshops mute ideas (worded as a way to get support for cuts

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Disability News Service @johnpring.bsky.social · 02/10/2026

Andy Burnham’s announcement of free personal care as part of a new National Care Service will only apply to those over 65, and not to working-age disabled people, No 10 has confirmed, sparking shock and concern among disabled people’s organisations. www.disabilitynewsservice.com/free-social-...

disabilitynewsservice.com

Free social care is coming… but only if you’re over 65, government confirms after Burnham speech

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hookland.bsky.social @hookland.bsky.social · 30/09/2026

Dropped in a Hookland vinegar cake to all at @treadwells-books.bsky.social as a small thank for hosting such a magical evening last week. They still have plenty of signed copies ‘Hookland Fragments’ with a special insert if you want to order from them.

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Anupama Ranawana @msamrc.bsky.social · 30/09/2026

“It’s going to take something bad to happen, it’s going to take a university to go under, a so-called elite institution where the children of MPs or journalists go, for people to take notice. If a Russell group university goes bust people might stand up – " Nick Clarke

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EndMalnutritioninME @malnutritionme.bsky.social · 30/09/2026

Many people with severe and very #severeME do not receive enough care time to meet their basic daily needs of eating, drinking, washing, and toileting. People with #ME need recovery time between these activities and care visits do not allow for this.

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Kristin Meekes @kmeekes.bsky.social · 29/09/2026

The pandemic should have led to clean indoor air, treatments for long covid and related illnesses, next gen vaccines, normalization of masking, mandatory respiratory protection in healthcare, sick leave, and a paradigm shift around what infections do to people

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Dr Noor Bari @njbbari3.bsky.social · 29/09/2026

Totally… that’s what I mean… COVID-19 has been treated anomalously. Exceptionally. It is immune to all prior sensible disease control practices, all laws on accessibility for the disabled, and all common sense and decency.

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BladeoftheSun @bladeofthes.bsky.social · 29/09/2026

It's not pensions you can't afford. It's not immigrants. It's not Disabled People. Or University educations. Or Healthcare. Or Housing. It's billionaires you can't afford, they are stealing all of this and much more.

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Michiel @murtoz.bsky.social · 29/09/2026

@jennimintomsp.bsky.social wtf!?! Why is nhs scotland pretending that long covid doesn't exist and that repeatedly infecting everybody with covid is absolutely fine!?

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Lucibee @lucibee.bsky.social · 29/09/2026

I think public health went out of the window, when they opened it briefly in November 2021. 😬

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Lucibee @lucibee.bsky.social · 29/09/2026

This is the key slide. Scotland NHS now categorises SARS-CoV2 as R1, which apparently means that it no longer causes severe disease, no longer spreads in the community, and there is vaccination and prophylaxis available. We're in for an *interesting* winter methinks.

Slide from Cat in the Hat's thread on Xitter:

from Appendix 11 of Scotland's IPC guidance document.

Table shows that patients with coronavirus infection (Sars-CoV-2) with respiratory symptoms should be placed in a single en-suite room, that staff should wear FRSM as respiratory protection, and that the respiratory categorisation is R1.

Footnote:
The categorisation of infectious respiratory agents into the categories R1, R2 and R3 are informed by the UK Health and Safety Executive’s Approved List of Biological Agents:

• R1 = respiratory infectious agents that can cause human disease and may be a hazard to employees; if exposed but they are unlikely to spread to the community and there is usually effective prophylaxis or treatment available.

• R2 = respiratory infectious agents that can cause severe human disease and may be a serious hazard to employees if exposed;
they may spread to the community; but there is usually effective prophylaxis or treatment available.

• R3 = respiratory infectious agents that cause severe human disease and are a serious hazard to employees if exposed; they are likely to spread to the community; and there is usually no effective prophylaxis or treatment available.

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Germaine Hypher - Crafting A Path Through Illness @germainehypher.bsky.social · 29/09/2026

The View From The River Bed popped into my mind while resting with my eyes shut for my usual number of 3-5 hours one afternoon. It is drawn with bronze & white gel pens, but the photo makes the bronze look orange. #drawing #chronicillness #chronicpain #chronicfatigue #ME/CFS #mecfs #art ✍🏻 🐟 🐠 🛌

A drawing in metallic bronze gel pen (though the photo makes the bronze look orange) on black paper of a dull looking fish lying on a bed amongst rocks at the bottom of the page, with with the words: the view from the river bed. Swimming up towards the surface of the river, and swimming along with the flow of collaged blue water (torn from a magazine), and even leaping out of the water, are all kinds of patterned fish drawn in white gel pen.

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Andrea Is Sick of Long Covid @andreastudiescovid.bsky.social · 29/09/2026

"Oxford scientists report a 67% rise in strokes among people under 55." Doctors are puzzled. Fuck me. 😷

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cicadaqueenV @cicadaqueenv.bsky.social · 29/09/2026

Thank you again for doing this, it's amazing. My health continues to deteriorate and my partner still hasn't found a job. Rent is due on the 1st and we really need every bit of help we can get. gofund.me/64ad02f20 #MECFS #HelpSky #MutualAid 💸💕

gofund.me

Donate to Support Violet Through Her MECFS Struggle, organized by Violet Rin

Hello, my name is Violet. I've set up a couple of GoFundMe's in the past to hel… Violet Rin needs your support for Support Violet Through Her MECFS Struggle

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Reposted by Michiel

Chris Ponting @cgatist.bsky.social · 29/09/2026

Rob Wust (Amsterdam) shows that #pwME and #pwLC (all with PEM) *perfectly* separate from healthy controls with respect to their muscle microvasculature radius. Lower lumen radius in ME/LC. Needs replication, but this muscle biopsy metric has high diagnostic potential. #MEcfs #PRIME26 #LongCovid

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ME/CFS Science @mecfsscience.org · 29/09/2026

1) An initiative worth sharing: The Severe & Very Severe ME Research Registry. It's a website that provides access to research for severely and severely affected ME/CFS patients from Germany, Austria and Switzerland (DACH region).

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Michael @shevekuk.bsky.social · 29/09/2026

Ridiculously there's bugger all to zero compulsory training in the NHS about ME/CFS. If it were, say, MS, people would be in uproar. So I'd appreciate it if you sign this futile attempt at chang- I mean, this petition c.org/t8D7hZ9Lh5

c.org

Sign the Petition

Make ME/CFS learning mandatory for NHS staff

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Winslow Santé Publique @winslowsp.bsky.social · 28/09/2026

We raised these same concerns last year by email, yet we had no answer from Anne Claire Amprou. We also contacted Jerome Weinbach by email before the conference, yet we had no answer and these same claims has been made. 8/13

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Winslow Santé Publique @winslowsp.bsky.social · 28/09/2026

In a display of remarkable audacity, France’s Health Ministry representative recently claimed (at the UN indoor air event) that the nation leads global indoor air quality efforts. This lie demands correction. Reality is different: CO2 levels in France public spaces are still skyrocketing 1/13

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Tom Plender @tomplender.bsky.social · 28/09/2026

1/ conversion disorder and deconditioning/illness beliefs model have been a simplistic disaster, ME/CFS should be under neuro immunology, not the pseudoscientific dustbin of 'psychogenic illness' - 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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Michiel @murtoz.bsky.social · 28/09/2026

#pwME high time there was mandatory education on #ME/CFS for all patient facing NHS staff. Please sign and share!

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Donia ♾️ ♿️ @ethyricalartist.bsky.social · 28/09/2026

We’ve been stuck here 363 days. I’m too run down to say anything more than HELP 😿 Ways to(not only donating) Art: donialilly.com V: venmo.com/u/Donia-Lilly PP: paypal.me/donialilly eBay: ebay.com/usr/island_art #Homeless #HelpFolksLive #MAboost #Disability #CatSky #HelpSky #pwME #MutualAidMonday 💸💕

youtube.com

Full disclosure: I'm hanging on by a thread #chronicillness #MyalgicEncephalomyelitis #disability

YouTube video by ethyricalartist

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Danielle Beckman @daniellebeckman.bsky.social · 28/09/2026

Recent photo at the NHS. Over 6 years into #COVID, and we still have “wash your hands” under “AIRBORNE PRECAUTIONS.” We are failing hard to communicate one of the most basic lessons of this pandemic: Airborne means spread through the AIR. Clean air is infection control. #Airborne #PublicHealth #NHS

Photo shows a sign at NHS that says: Airborne precaution
Please wash your hands before entering the training room. Thank you

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Eve @evenicholls.bsky.social · 28/09/2026

So, yes, as far as I know, the usual tendency for women to be less likely than men to die by suicide does not hold for people with ME. Thanks for engaging with me on this. It's a very difficult topic. Right, now off to clear my head!

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Eve @evenicholls.bsky.social · 28/09/2026

I've had ME/CFS for coming up to thirty years, and I do pay attention. The thing about recovering was looking at the small number of people who do recover, as I recall. Generally they were men who were able to take to their beds for a couple of years, because they had people looking after them.

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

Two signals in TMEM106B & VWDE locus. Associations affect gene regulation not protein sequence. Genome wide: the pituitary tissue is the most enriched in gene expression. Is #MEcfs genetics similar to other diseases? Yes! Long Covid and fibromyalgia have strong genetic correlations w MEcfs.

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Carole Cadwalladr @carolecadwalla.bsky.social · 28/09/2026

I’ll do a thread later but if you want to read Tom Watson’s WhatsApp to me defending his position on Palantir’s advisory board, read on. This was from before he took his current executive role last week. His defence? That he didn’t have an executive role..

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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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Karam Bales @karambales.bsky.social · 28/09/2026

Why is discussing lack of Covid vaccine access taboo in the UK? Guardian article criticises RFK JR while ignoring greater restrictions in the UK Other ignored issues includes IPC Guidance, Long Covid, clean air counterdisinformationproject.substack.com/p/why-is-dis...

counterdisinformationproject.substack.com

Why is discussing lack of Covid vaccine access taboo in the UK?

Guardian article criticises RFK JR while ignoring greater restrictions in the UK

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Tom Kindlon @tomkindlon.bsky.social · 28/09/2026

The Severe & Very Severe ME Research Registry has been created. It gives people with severe and very severe ME from Germany, Austria, & Switzerland the opportunity to participate in research through home visits severe-me-registry.de #SevereME #MEcfs #CFS #PwME #VerySevereME #ChronicFatigueSyndrome

severe-me-registry.de

Severe & Very Severe ME Research Registry

Das Severe and Very Severe ME Research Registry verbindet ME Schwer- und Schwerstbetroffene mit biomedizinischer, häuslicher Forschung.

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hookland.bsky.social @hookland.bsky.social · 27/09/2026

We archaeologists tell the stories of the stones not to erase their mystery, not to undo their role as anchoring post for folklore, but to transmit the Long Neolithic. We give context for ghosts, provide new reasons for lithic pilgrimage. – Dr. K. Brophy #StandingStoneSunday

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Greens Against Covid @greensagainstcovid.bsky.social · 27/09/2026

We are keen to see this voted through @greenparty.org.uk #Greenpartyconference. It's a significant improvement on the policies of the other parties, taking on board the findings of the #CovidInquiry, implementing disease prevention measures based on science, and research and support for illness.

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Defend Our Juries @defendourjuries.bsky.social · 27/09/2026

BREAKING: 94 year old Jewish human rights barrister, Margaret Owen arrested under the Terrorism Act outside Andy Burnham’s Labour Party conference. UK taxpayers are funding these arrests while masked men terrorise the streets in coastal towns. Lift The Ban on Palestine Action.

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Katy B @katybrc.bsky.social · 27/09/2026

After living with ME for 40 years, for countless reasons I'm more grateful than I can express for the #ME community. #pwME are a great example of how online communities can have multiple important benefits for patients, in some cases it can literally be a life line. 💙🛟💙

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Michiel @murtoz.bsky.social · 27/09/2026

This is exactly the conclusion I have reached too. Our government (DWP, DHSC) isn't acting in good faith when it comes to #ME/CFS. Their "final delivery plan" is a farce. And our charities felt they had a seat at the table & so have been legitimising this farce, meekly under NDA. We deserve better!

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Kavi Kat 🌬️ @katinthestars.bsky.social · 26/09/2026

😓 75% of people with ME are unable to work. 🛌 25% are homebound / bedridden. 🌎 15-30 million people worldwide are living w/ ME. 😷 80-90% of cases are undiagnosed. 🚺 75-85% of cases are in people assigned female at birth.

longcovidjustice.org

ME and Long COVID - Long COVID Justice

We can’t talk about Long COVID without talking about ME. ME is Myalgic Encephalomyelitis and studies show it may affect 50% of people with Long COVID. What is ME? Resource sheet Our Long COVID Essenti...

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Dr Eleanor Roberts @elbelbumble.bsky.social · 27/09/2026

I was treated by Mary Burgess who wrote the ME CBT manual. During a session I told her I was taking supplements, she responded "but how will we know the CBT is working?," which struck me as odd if she wanted me to get better, until I realised I was not a patient, but an unconsented research subject.

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Sam 🍉 😷 @spoonsnroses.bsky.social · 27/09/2026

Think I'm going to go mad if I see another person say "they're coming for disabled people next!" When have they not been coming for disabled people? Certainly officially since 2010 Cameron/Osbourne, and orchestrated media attacks on people with ME since the 90s.

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Them Fatale, @mxthemfatale.bsky.social · 26/09/2026

Scotland has ZERO services or care on the NHS for CFS/ME. Glasgow was still referring patients to homeopathy and the debunked and dangerous GET in 2021, GPs still act like its fake and ignore NICE and WHO guidelines.

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Long Covid Advocacy @longcovidadvoc.com · 26/09/2026

📻 Superb @georgemonbiot.bsky.social Interview on LBC with Natasha Devon. "A long & vicious history in this country of dismissing predominantly female diseases & calling them hysterical." 🔥 Thank you George & Natasha 🙏

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Richard Vallée @richardvallee.bsky.social · 24/09/2026

The most important detail about this scandal is that it's 100% a choice. The responsibility of the medical profession is on the same order as what the tobacco industry did about the harms of its products. All of this is a choice. They know. We keep telling them. They don't care. Not one bit.

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Long Covid Advocacy @longcovidadvoc.com · 26/09/2026

The George Monbiot LBC interview with Natasha Devon is EXCELLENT! It's on at 7.33 pm. Can't record it due to DRM capture. BUT will keep an eye out for the recording. share-gp.globalplayer.com/live/lbc/uk/

globalplayer.com

LBC UK - Listen Live | Global Player

Leading Britain's Conversation. Access your favourite LBC shows now!

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