iiinova — where your digital self keeps evolving

Reposted by The Real McCoy

“The harm you have done is incalculable. It’s not me who has been spreading great harm around the world. It’s you, mate.” George Monbiot on being accused by Prof Michael Sharpe of “spreading” #LongCovid by writing about it and why he started writing about the #MECFS scandal.

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Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic.bsky.social · 05/10/2026

Check out our conference poster on defining PEM: positivenutrition.ie/wp-content/u... Coauthors: @naomidharvey.bsky.social @ciarawrightphd.bsky.social @sunsopeningband.bsky.social Full paper currently in draft! 🧵

positivenutrition.ie

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Tom Kindlon @tomkindlon.bsky.social · 05/10/2026

I was one of a number of patient scientists and advocates who was interviewed for this sympathetic, open access paper "Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis" www.sciencedirect.com/science/arti... #MEcfs #PwME #epatient #epatients #CFS

Abstract
It is usually assumed that patient and doctor know strictly different things: the patient knows the phenomenological aspects of their illness, and the doctor knows its medical aspects. I present a case study, that of myalgic encephalomyelitis, wherein, due to severely dysfunctional institutional knowledge production and transmission mechanisms, the medical aspects of the illness are on the whole better understood by sick people than by their doctors. Indeed, lay scientists within the patient community disseminate and produce science on their disease, ensuring that patients as a whole have reliable knowledge about their disease. By contrast, systemically produced and systemically maintained ignorance on the part of medical professionals is the norm, and may be beyond the specific case study I present.

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🆂🆃🅴🆅🅴🅽 🌈☕🐸 @zencoffeebreak.com · 05/10/2026

if I died and went to hell, it would take me 5-7 business years to realize it wasn't just ME/CFS

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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026

Why do people with ME claim to know more about the medical aspects of their disease than their doctors? Because the mechanisms that usually ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack.

Screenshot of the header of a published paper:

Studies in History and Philosophy of Science

Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis

Chloé de Canson

Department of of Theoretical Philosophy, University of Groningen, Oude Boteringestraat 52, Groningen, 9712 GL, the Netherlands

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Adam @abrokenbattery.bsky.social · 01/10/2026

“I was just horrified… The most heartbreaking stories… Treatment is absolutely appalling for patients.” @georgemonbiot.bsky.social speaking to @davetuller1.bsky.social about the hundreds of messages he received from people around the world with #MECFS about their experiences of treatment.

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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 26/09/2026

I’m only seeing people with ME or Long Covid sharing this. If you’re not affected, can you please read it & share? Ableist propaganda goes viral all the time, which encourages outlets to publish more of it. Can we please make the truth go viral instead?

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Alem Matthees @alemmatthees.bsky.social · 24/09/2026

(1/3) Worth remembering that the NHS clinics delivering CBT/GET generally failed to inform #MECFS patients about potential harms and typically did not record adverse events. (Aside: Patients often report there is resistance to recording harms, so we do not know the true extent of it.)

journals.sagepub.com

Sage Journals: Discover world-class research

Subscription and open access journals from Sage, the world's leading independent academic publisher.

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Tom Kindlon @tomkindlon.bsky.social · 23/09/2026

Ror Preston: Whilst we know the average quality of life for ME/CFS patients is amongst the very worst for chronic diseases, I think in advocacy the true disaster that is severe / very severe ME has been significantly underplayed. New @wecrunchme visual on this topic 💙 #SevereME #MEcfs #PwME 1/

Health-related quality of life declines
sharply at higher levels of ME/CFS disability
Health-related quality of life (EQ-5D-5L) for general population vs. ME/CFS by disability severity
Mean health-related quality of life (EQ-5D-5L)
1.00
0.80
0.60
0.40
0.20
0.89
ME/CFS disability severity →
0.69
95% confidence interval
O represents a health state valued as equivalent to death, with below- O representing health states considered worse than death
0.44
0.02
0.00
General Population Benchmark
Mild (n=40)
Moderate
(n=137)
Data source: Orji et al. (2024) ‘Assessing health state utilities for people with ME/CFS in Australia using the EQ-5D-5L, AQOL-8D and EQ-5D-5L-psychosocial instrument'
Severe
Notes: Disability severity levels were derived from the DePaul Symptom Questionnaire - Short Form (DSQ-SF). The study did not define a separate 'very severe' category; participants above the highest severity threshold were classified as 'severe'.
(n=19)
M
CrunchME
CC BY 4.0

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The Real McCoy @rippermd41.bsky.social · 24/09/2026

Oh yes she did. She blocked a bunch of us that spoke up against some of her posts, not to mention that shared poor experiences with her. This was my original post about her over on Twitter x.com/RipperMD41/s...

x.com

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The Real McCoy @rippermd41.bsky.social · 22/09/2026

yeah I’m one of the ones that had a bad experience with Dr Blitshteyn (@/dysclinic) She basically prescribed GET-lite. Claimed to be ME aware but had zero concerns that the medication she prescribed and the activity she wanted were triggering PEM. Thankfully I knew to bail.

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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 15/09/2026

They still need people with ME or caregivers in Mississippi, West Virginia, & North Dakota. Please share!

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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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Wilhelmina Jenkins @wilhelminaj.bsky.social · 04/09/2026

Friends, a major problem in the demographics of ME/CFS studies is the absence of Black participants. If you know of any Black adults with ME/CFS, please suggest that they complete this survey. I have completed it and it is relatively untaxing. Thanks!

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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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C.H. Romatowski @chromatowski.bsky.social · 25/08/2026

If you’re interested in understanding how ME/CFS relates to Long Covid, this quick review of the literature is worth a read—thanks Tom for bringing it over in a format that doesn’t require a Twitter login.

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Tom Kindlon @tomkindlon.bsky.social · 23/08/2026

From @meresearchuk.bsky.social Whilst every individual’s experience is unique, it is striking how many shared themes emerge across the PEM survey responses. When people from all walks of life describe similar physical experiences, it offers a powerful insights into ME/CFS. tinyurl.com/PEMimpactME

What post-exertional malaise (PEM) in ME/CFS feels like
worst flu
complete energy drain
worst hangover
poisoned pain aching
sleep making no difference
having been run over/hit by a vehicle
made of lead
nausea weak
body shutdown
jet lag

bone deep exhaustion
wading through mud
plug pulled out
Recurring themes from ME Research UK
Symptom Saturday PEM Survey
INFORM. INFLUENCE. INVEST.

R UK e

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Tom Kindlon @tomkindlon.bsky.social · 21/08/2026

Poignant words from Anil van der Zee "Not an Advocate. Not Your Silver Lining Porn. Just Desperation" anilvanderzee.com/not-an-advoc... It ends: "I’m really not interested in compliments. I need you to fight with me or for me. For us! We and I need your help moving things forward." #MEcfs #PwME

Photo of Anil's naked body slumped over his electric wheelchair

with the following text

Not an Advocate. Not Your Silver Lining Porn. Just Desperation.
Publicada el August 21, 2026
I’m not a patient advocate. I’m not an activist. I’m just a patient that shares out of sheer desperation as much about my disease, or rather the whole shit show circus surrounding it, so I can hopefully, one day, return to a more normal life.

While raising awareness for ME also keeps me busy, I do not enjoy doing it. I don’t enjoy having to constantly write about it, debunking shoddy science or create awareness art about this disease, so that people get what ME is about. So that we’ll be treated according to what this disease deserves.

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Wilhelmina Jenkins @wilhelminaj.bsky.social · 19/08/2026

Great article from The Sick Times on the efforts to include ME/CFS & Long COVID in the 2027 Congressional appropriations.

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Tom Parsons @tomparsons.bsky.social · 08/08/2026

Today is Severe ME day. I never thought that I could get this sick and be receiving LESS medical care. I never thought following the advice of clinicians could leave me mostly bedbound. I never thought I would lose the whole world this way.

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The Real McCoy @rippermd41.bsky.social · 13/08/2026

Yeah I felt like I got my brain and body back during my first infusion.

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The Real McCoy @rippermd41.bsky.social · 13/08/2026

100% That should be a doctor to doctor conversation.

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The Real McCoy @rippermd41.bsky.social · 13/08/2026

I’m so sorry. It’s so frustrating.

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The Author, Séamas O'Reilly @seamas.bsky.social · 13/08/2026

Not to be some wild-eyed innocent, but I think it should be slightly bigger news that The Lancet have crunched the numbers and found that Musk's USAID cuts will kill 14 million people. And that's just by 2030. That's 9,600 people a day, every day, until the next world cup rolls around.

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The Real McCoy @rippermd41.bsky.social · 13/08/2026

Forgot to add, the NP convinced the insurance company by emphasizing my dysautonomia, not my #MECFS Both contribute to my orthostatic intolerance, but if I didn’t have that dysautonomia diagnosis I might be SOL.

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The Real McCoy @rippermd41.bsky.social · 13/08/2026

Do I want the little research funding spent on something we know works? Not really. But having IV fluids in the medical literature for #LongCovid and #MECFS could help patients now. Plus if researchers learned that it’s not just a placebo, the quality of their research would improve.

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The Real McCoy @rippermd41.bsky.social · 13/08/2026

The studies I used to convince my NP to try IV saline: First is a case study by Todd Davenport - pubmed.ncbi.nlm.nih.gov/32623426/ Second is a case series by Sjögren- pubmed.ncbi.nlm.nih.gov/40761644/ I also threw in some of Bateman Horne resources and a sprinkling of “this is low risk.”

pubmed.ncbi.nlm.nih.gov

Cardiopulmonary responses to exercise in an individual with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome during long-term treatment with intravenous saline: A case study - PubMed

IV saline may promote beneficial effects for cardiopulmonary function and symptoms in people with ME/CFS, which should be the focus of formal study.

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The Real McCoy @rippermd41.bsky.social · 13/08/2026

There are many things known by the #MECFS and #LongCovid communities that barely show up in the medical literature. The effectiveness of IV fluids is one. It affects patient care and research. I was barely able to convince my NP to try them with a case study and case series in ME.

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Kelly @broadwaybabyto.bsky.social · 13/08/2026

“If it were really that bad you would have more support”. People believe that when you’re disabled, help magically appears. That when you get worse, you get more help and/or funding. The reality is far different. There’s little to no help. We live in legislated poverty. Survival is hard.

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The Real McCoy @rippermd41.bsky.social · 13/08/2026

It’s an unfair system, but it’s what you get when you combine insurance that prioritize denying claims and decades of underfunded research into #MECFS and #LongCovid “Lack of evidence” is one of the easiest ways for insurance to deny claims. When you don’t find research there’s no evidence.

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The Real McCoy @rippermd41.bsky.social · 13/08/2026

This is still expensive, but those with #MECFS and #LongCovid know this is relatively cheap by comparison. Most of the specialty clinics don’t take insurance. This is the reality we live with: you can only access doctors with knowledge of ME and LC if you’re wealthy.

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#MEAction Network @meactnet.bsky.social · 11/08/2026

A community member requested we share this. Please check it out! Emily has been part of our community for many years and needs a cervical spinal fusion and/or decompression and/or stent the veins in the left and/or right side of my head (and maybe more care to help) #pwME #SevereME

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The Real McCoy @rippermd41.bsky.social · 09/08/2026

The biggest mindfuck in all this is knowing that despite all I’ve lost I’m still the LEAST severe of those with #SevereME. I can still eat, use the toilet, occasionally bathe and talk. But with ME, the knife hovers. There is always another piece to whittle away. #SevereMEDay 5/X

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The Real McCoy @rippermd41.bsky.social · 09/08/2026

The vast majority of my life now lies in heaps of sawdust around my feet. It makes me wonder if what I still hold could be called a life. At what point did I tip from living into surviving? I suspect it was awhile ago. 4/ #SevereMEDay #SevereME

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The Real McCoy @rippermd41.bsky.social · 09/08/2026

Work was the first thing to be carved off. Then volunteering. Hobbies. Driving. Phone calls. Sunlight. Most of my parenting. Everything given up in hope that I could keep my ME from getting worse. 3/ #SevereMEDay #SevereME

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The Real McCoy @rippermd41.bsky.social · 09/08/2026

Myalgic Encephalomyelitis has a way of whittling away at your life. 7 years in and I can see littered around me the chips and shavings of my past life deemed “non-essential” to this new one. 2/ #SevereMEDay #SevereME

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The Real McCoy @rippermd41.bsky.social · 09/08/2026

Today is #SevereMEDay I dropped from moderate to #SevereME 3 years ago. It’s really hard to paint a picture of how bad this illness can get, but I’ll add pieces from my journal below. 1/

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Wilhelmina Jenkins @wilhelminaj.bsky.social · 09/08/2026

Today is Severe ME Day. I wanted to post today about falling from moderate/severe ME into severe ME 4 1/2 years ago. Yesterday, I sat in my wheelchair a little too long. Today, I’m wrecked. Severe ME is totally unforgiving. (My daughter is writing this.)

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 08/08/2026

Today is #SevereME day. Please take a look at and share the thread below: help teach people about severe ME.

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C.H. Romatowski @chromatowski.bsky.social · 29/07/2026

The current state of Long Covid care:

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 27/07/2026

The survey has 100+ unique emergency room narrative responses already! But we're aiming for 150 before we close. If you have a diagnosis of #MECFS or #LongCOVID and have been to the emergency room in the past 10 yrs for your symptoms, I hope you'll take the survey. And if you don't, please share!

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Wilhelmina Jenkins @wilhelminaj.bsky.social · 20/07/2026

The next step in the @meactnet.bsky.social/Mayo Clinic collaboration to improve care for those living with ME/CFS addresses our emergency room experiences. If you live with ME/CFS and have visited the emergency room for your symptoms in the past ten years, please fill out the survey below.

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#MEAction Network @meactnet.bsky.social · 06/07/2026

It is Medicaid Monday! We are sharing a step-by-step guide to submitting a comment to CMS regarding their Interim Final Rule on Medicaid work requirements. Deadline July 31! We have a template document with all the information you need! Head to ow.ly/hoVX50ZkQhc and we walk you through it.

Step-by-step guide to submitting a public comment on Medicaid work requirements for people with serious medical conditions, with a QR code to access the MEAction template. Text: People with serious or complex medical conditions should be exempt from Medicaid work requirements. Period. Join us in submitting your own public comment. MEAction template available!

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The Sick Times @thesicktimes.org · 01/07/2026

☀️ As The Sick Times approaches our 3-year anniversary, we’re shifting from a startup to a more sustainable newsroom, in it for the long haul. And we’re marking that shift with a summer sustainability fundraiser. 🌱 2 weeks, 200 new Supporters? Help us grow? the-sick-times.fundjournalism.org/donate/

Black and chartreuse text over a cartoon fam background reads, “The Sick Times. Help us create, grow, and sustain our Long COVID journalism.”

2. Thermometer graphic in which The Sick Times' fundraising goal is represented by a row of pixelated hearts, as you might see in an old-school video game. The hearts are all black outlines, and the first one on the left is filled in with a little bit of red. Text above the hearts reads: "The Sick Times - Goal: 200 new monthly supporters." Underneath the hearts, there is a cartoon drawing of a field with flowers.

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 22/06/2026

Please take a moment to read through and share information about the changes to Medicaid and what that means for the disability community! #NEISvoid #MECFS

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Wilhelmina Jenkins @wilhelminaj.bsky.social · 13/06/2026

ME/CFS community! Please, if you are able, come to the community meeting held by #MEAction on tomorrow - Sunday, June 14 at 3 PM ET. We are facing a changed advocacy environment, and to make any progress, we have to forge new paths and move forward together. Come tomorrow and see where we stand.

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#MEAction Network @meactnet.bsky.social · 12/06/2026

From our friends at @solveme.bsky.social! Take action today by submitting a comment and contacting Congress. Thanks to Solve M.E. for organizing this response on this critical issue.

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 02/06/2026

ok the more I stare at the image of zero studies, the angrier I am. Wired, are you for real? Did you not check for a single study in a reputable journal, first? You're advertising snake oil to desperate people on what? a whim? I assumed a study had come out, at least, even if it was very poor.

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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 17/04/2026

I'm working on a story for @thesicktimes.org about RECOVER clinical trial results that have been shared so far (from the VITAL, NEURO, and AUTONOMIC studies), and am looking for people in the #LongCOVID and IACC communities to share what they think of the findings. DM or email me!

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