iiinova — where your digital self keeps evolving

Jackson Riso @jacksonriso.bsky.social · 11/05/2026

I see the studies about how Covid is deteriorating everyone’s health, and . . . It is just not what I see around me. Everyone not worrying about Covid seems to be living their best life while those of us with #LongCovid are stuck inside.

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Jackson Riso @jacksonriso.bsky.social · 06/05/2026

Before Abilify, I was housebound. At 4mg, I was able to walk 0.2 miles to a bench near my house, rest, and walk back. At 6mg, I was able to walk 0.5 miles, rest, and then back. But the restlessness was too much, even at 5mg, so I have gone back down to 4. #LongCovid #MECFS

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Jackson Riso @jacksonriso.bsky.social · 17/04/2026

I am now at 4mg of Abilify per day (up from 2 in Feb), and I am continuing to see benefits in energy and overall well-being. I will up it to 6mg in a few weeks. #LongCovid #MECFS

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Jackson Riso @jacksonriso.bsky.social · 03/04/2026

With the recent failure of Ensitrelvir to show any benefit for #LongCovid patients, I believe it is beyond time for the supporters of the Viral Persistence Hypothesis to put up or shut up. Either run a trial that will prove it once and for all or move on. clinicaltrials.gov/study/NCT061...

clinicaltrials.gov

ClinicalTrials.gov

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Marcia Cohen Zakai @cozamarsh.bsky.social · 19/03/2026

YLE misinforms, minimizing the current risks of acute & Long COVID, claiming COVID-19 is no longer a "top killer" & "we still don't know what works best to slow the spread." We need experts like @n95anaesthetist.bsky.social & @michael-hoerger.bsky.social who share the evidence & dispel the myths.

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Sue Poncin @sueponcin.com · 16/03/2026

Anyone else wake up sad and exhausted after Long Covid Awareness day wondering…… How did we get here? One infection gave us an awareness day? Why are we still battling this? Is this forever?

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Dahlia @dahliablackthorne.bsky.social · 16/03/2026

You probably don’t want to think about it. That doesn’t change the reality that today is #longcovidawareness day. Tens of millions around the world are sick and their old lives are over. It could happen to any of us with the next Covid infection and there is no cure. #maskup #HEPA

image of the rolling total of people with disabilities aged 16+, showing an exponential increase of disabled people starting in 2021, which is correlated with the increase of Covid19 infections. 1.2% of the population of 16 - 64 year olds is disabled.

graphic showing images of the brain and how Covid19 effects brain tissue: Brain stem failure which effects breathing, cognitive aging which ages the brain by 10-20 years, and biological mechanisms of damage such as brain stem abnormalities, viral spike protein fragments and neuron inflamation.

Summary statement: Long Covid is a chronic neurological condition for millions. While some recover, the virius leaves a lasting mark by quietly rewiring fundamental brain regions, necessitating a shift toward Long-Term NEUROLOGICAL Rehabilitation and culturally sensitive diagnostics.

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isabella mori @moritherapy.bsky.social · 16/03/2026

April 2020 - first Covid infection. Very mild. June 2020 - first signs of low energy Nov 2022 - 2nd Covid infection. Mild. Jan 2023 - it's obvious I have #LongCovid Jun 2023 - can't work anymore Lots and lots of time in bed since then

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🎃Monster Matt🎃 Pritchett📷♿️ @crankycyborg.bsky.social · 16/03/2026

The thing is, when you #PEM crash because you’re chronically ill from #ME/CFS or #LongCovid or some other extremely debilitating illness, you never know how bad it will be or how long it will last. You feel like you’re dying & maybe you are, but there’s no test to know, so you just suffer more.

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Wail of a Tale Productions @wailofatale.bsky.social · 07/03/2026

A recent study from Open Forum Infectious Diseases journal sheds light on the realities of Long COVID. Key Insights: Only 5% report full recovery 59% have not experienced a single symptom-free day 59% reporting negative effects to mental health 61% say their work has been adversely impacted.

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Jackson Riso @jacksonriso.bsky.social · 13/02/2026

For all my #LongCovid and #MECFS crew out there: Low-dose Abilify has recently improved my capacity 10-15%. Do with that what you will.

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Jackson Riso @jacksonriso.bsky.social · 04/02/2026

Celebrating 5 years of no progress from the NIH on #LongCovid. "The initiative looks forward to continuing the next phases of observational studies" recovercovid.org/news/5-years...

5 Years in, RECOVER continues to advance its patient-centered mission

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Jackson Riso @jacksonriso.bsky.social · 03/02/2026

Scroll down to search for "Long Covid" in NIH Director Bhattacharya's Senate testimony today: www.c-span.org/program/sena...

c-span.org

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Jackson Riso @jacksonriso.bsky.social · 10/11/2025

This is a really weird way for the NIH to say that their "mind-body" trials for Long Covid failed. Almost as if they are intentionally trying to cover it up. :-/

Results from one of the first federally funded clinical trials for Long COVID showed that three active non-drug treatments had similar impacts on symptoms of cognitive dysfunction, but no one treatment outperformed other groups, including the comparison groups.

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Emerge Australia @emergeaustralia.bsky.social · 30/10/2025

I used to think that if I was unwell doctors would help me. Now I know how common medical gaslighting is. Multiple levels of marginalisation makes it even harder.

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Emerge Australia @emergeaustralia.bsky.social · 30/10/2025

Leanne: They would take on different roles - when she could't cope, Pete could. Then they would swap. A step at a time. A day at a time. Some days let herself collapse.

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Emerge Australia @emergeaustralia.bsky.social · 30/10/2025

Senator Jordon Steele-John: In preparing for today, revisited the timeline for the development of new clinical guidelines. What struck him, that a draft is still two years away. Also recognises how much effort it took to get this process underway.

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Emerge Australia @emergeaustralia.bsky.social · 30/10/2025

Professor Michael Kidd: Acknowledges that 25% of people with ME/CFS are bedbound or housebound and there is a high economic burden to the disease, though says the true cost is lives constrained, opportunities lost and voices unheard.

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Jackson Riso @jacksonriso.bsky.social · 29/10/2025

It’s so heavy to hold the excruciatingly slow pace of progress on Long Covid and the devastating impact this neglect has on my life and the lives of millions of others.

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ME/CFS Science @mecfsscience.org · 16/10/2025

Dr. Fridbjörn Sigurdsson was a medical oncologist before focusing on ME/CFS. During the 2025 Invest in ME conference, he said: "What I have learned is that most of the patients that I have seen with ME are so much sicker than my cancer patients."

youtu.be

#IIMEC17 11 Clinicians' Panel Discussion

Open Panel Discussion Chaired by Professor Andrew Wilson, UEA, UK More at https://investinme.org/iimec17-andrewwilson.shtml

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The Real McCoy @rippermd41.bsky.social · 16/10/2025

Myalgic Encephalomyelitis (ME), an illness you likely know nothing about, is one of the many things you risk with Covid. 1 in 22 infections develop ME. Is this what you want an oncologist saying about you? 👇 #MECFS #LongCovid (PS there’s no FDA approved treatment yet)

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Rolling Stone @rollingstone.com · 16/10/2025

“Millions of Americans are impacted by long Covid, and they deserve a federal government that will have their back,” Virginia Sen. Tim Kaine told Rolling Stone. “The Trump administration is not only failing to achieve those goals, but actively taking us in the wrong direction.”

bit.ly

Long Covid Is Real -- And It's Changing an Entire Generation

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Jackson Riso @jacksonriso.bsky.social · 14/10/2025

Has there ever been any research into what percentage of people with ME believe in brain retraining or the biosocial model? I feel like every day I see content from people who claim to have ME and say they have read a a book are excited to try it.

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ME/CFS Science @mecfsscience.org · 04/10/2025

6) We plan to delve deeper into the implicated genes and pathways in a second blog post, but zooming out, it is already clear that the genetic data of ME/CFS patients mostly point to the brain. If ME/CFS were a war, it seems that the brain would be its main battlefield.

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ME/CFS Science @mecfsscience.org · 01/10/2025

1) Watched the EU workshop on Long Covid yesterday. Prof. Evelina Tacconelli gave a useful overview of clinical trials. A striking figure was that 80% of randomised trials thus far were for non-pharmacological interventions, not for testing medications.

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ME/CFS Science @mecfsscience.org · 28/09/2025

1) A major genetic study on fibromyalgia just came out with DNA samples from 50.000 patients and 2.5 million controls. Most of the hits point to the brain and several implicated genes (RABGAP1L, OLFM4, DCC) were also found in the DecodeME study on ME/CFS.

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Dr. Lucky Tran @luckytran.com · 24/09/2025

Yesterday, history happened at the UN: For the first time hundreds of orgs signed a global pledge declaring that healthy indoor air is a human right. Healthy indoor air is a key tool for preventing pandemics, building climate resilience, and increasing health equity. We need it everywhere!

People signing the Global Pledge for Healthy Indoor Air at the UN

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Jackson Riso @jacksonriso.bsky.social · 23/09/2025

What are the odds we get real Long Covid treatments that get us anywhere close to normal in the next 30 years?

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Jackson Riso @jacksonriso.bsky.social · 20/09/2025

Crazy that the NIH's #LongCovid RECOVER program is maybe the worst that a group of scientists have ever done at anything ever.

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James Andrew Smith @drsmith.bsky.social · 19/09/2025

When Public Health officials and infectious disease experts complain that the public has taken an anti-Science position because of low vaccine uptake, they fail to acknowledge their role in fueling the anti-Science movement by telling people to wash their hands for COVID but not saying “airborne”.

Covid “wash your hands” sign in Orillia.

WASH YOUR HANDS
(FOR A MINIMUM OF 15 SECONDS)
WET HANDS
APPLY SOAP and lather
SCRUB
hands, wrists and under nails

RINSE
DRY HANDS with paper towel
CLOSE TAP with paper towel

simcoe
muskoka
DISTRICT HEALTH UNIT
Tel: 705-721-7520
Toll free: 1-877-721-7520
simcoemuskokahealth.org
The stuation is charging rapidly. Vest our wetste for regiar updates www.smdhu.org/COVID19

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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 18/09/2025

Roos from ARPA-H said the agency will soon take action on Long COVID. "In short order, after this forum, we can come up with a plan, work that through the secretary’s office, get that out..." in a timeframe of weeks, not months or years, he said.

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COVID Chronicles @covidchronicles.bsky.social · 17/09/2025

Science is broken & peer review is doing a shit job at quality control. You can't have one study saying one thing and anther saying the opposite. And yet this is FAR too common. Inflated by sensationalistic (scientifically illiterate) journalism. #Paxlovid #LongCOVID #MedSky

cidrap.umn.edu

Studies show mostly poor long-COVID protection for Paxlovid

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Jon Douglas @atranscendedman.bsky.social · 16/09/2025

Noida International University shows AI can flag heart risks, read scans better, and monitor patients after COVID. The review finds AI can sharpen diagnosis, personalize treatment, and guide public health to cut long COVID related heart problems. link.springer.com/article/10.1...

link.springer.com

Artificial Intelligence in Cardiovascular Health: Insights into Post-COVID Public Health Challenges - High Blood Pressure & Cardiovascular Prevention

Abstract Cardiovascular diseases (CVDs) continue to be the topmost cause of the worldwide morbidity and mortality. Risk factors such as diabetes, hypertension, obesity and smoking are significantly wo...

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Jon Douglas @atranscendedman.bsky.social · 14/09/2025

The RECOVER-TLC second annual workshop videos are now online. I only joined on day 2 and left discouraged. No adaptive trials, no combinations, no antivirals or mAbs. The agent choices feel so far from what’s needed for a functional cure. youtube.com/playlist?lis...

youtube.com

Pathways to Treatments, second annual RECOVER-TLC workshop - YouTube

This workshop updated the community on the progress made so far through RECOVER-TLC and solicited feedback on key aspects that will be essential for successf...

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Post-Viral Trials @postviraltrials.bsky.social · 08/09/2025

Data collected in 2012-2020, just published now, showing…people with ME/CFS often have dysautonomia. I know everybody is rallying around the federal government’s health initiatives since they’re under so much attack, but maybe this kind of ineptitude is why they were so vulnerable in the first place

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Jackson Riso @jacksonriso.bsky.social · 09/09/2025

Really struggling to find any sense of excitement from any of the presenters at #LongCovid RECOVER today. Are any of them actually excited about the drugs they are trialing? They seem to have this air of "I guess we'll try this".

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ME/CFS Science @mecfsscience.org · 24/08/2025

5) Lastly, the researchers are exploring three treatment: - immune adsorption: taking out the antibodies - Sonlicromanol: a drug that boost mitochondrial activity - An inhibitor of the enzyme IDO-2, which seems activated in LC

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Morgan Leigh Davies @mldavies.bsky.social · 21/08/2025

Through 4 episodes of THE PITT today… entranced by this fantasy of a world in which doctors have ethics and care deeply about their patients’ needs

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The Real McCoy @rippermd41.bsky.social · 16/08/2025

Thinking about how #pwME educate the “experts" sometimes to the detriment of their own health. Is it worth it? Do the experts learn?

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Jackson Riso @jacksonriso.bsky.social · 16/08/2025

Five years in, and these are the latest recommendations from my "Long Covid specialist" at OHSU: box breathing; guided imagery; progressive muscle relaxation (tensing and relaxing one muscle group at a time from feet to face) Tell me this isn't just brain retraining phrased differently?

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Jackson Riso @jacksonriso.bsky.social · 15/08/2025

What questions about Long Covid did we have in 2020, that we have answered in 2025? Treatments? Clearly not. Causes? Lots of ideas, but no clear answers. Prevalence? Surprisingly, no. Why some get it and others don't? Nope. What do we know today that we didn't know before?

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Jackson Riso @jacksonriso.bsky.social · 15/08/2025

Unpopular opinion: Every time we have a Long Covid or ME/CFS research conference, I feel more depressed than I did before. The gap between where we are and where we need to be feels so enormous. For me, these conferences highlight how little we really know, and how little funding we have.

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Jackson Riso @jacksonriso.bsky.social · 02/06/2025

Two weeks ago, the 2025 PolyBio Spring Symposium was released on YouTube. Shoutout to the researchers & the PolyBio team! Here’s a summary thread focused on what we learned about Long Covid & ME/CFS. 🧵👇 #LongCovid #MECFS

youtube.com

PolyBio Spring 2025 Symposium

YouTube video by PolyBio Research Foundation

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Tania J. Spencer @taniaspencer.bsky.social · 07/05/2025

3/ And then those "more tailored and effective treatments" never materialize. Not really. Ask anyone who has had Long COVID since March 2020. Ask them if they are still going back to their maskless (aka clueless) family doctors, for help with Long COVID symptoms.

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Jackson Riso @jacksonriso.bsky.social · 03/05/2025

Looks like results from several trials, including AER002 will be presented at PolyBio's #LongCovid Symposium on May 16th: polybio.org/spring-2025-...

SARS-CoV-2 monoclonal antibodies in long COVID: Key findings and future directions

Dr. Peluso will discuss the results of a recently completed long COVID monoclonal antibody clinical trial. This includes interpretation of the response to treatment, and ongoing work to determine specific biological characteristics of patients who responded to the intervention.

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Billy Hanlon @bhanlon15.bsky.social · 30/04/2025

For MN LC patients: See below regarding details on a clinical trial for Long COVID at the Univ. of Minnesota that has just begun patient enrollment & are looking for more participants. Further details if interested in applying to or participating ⬇️ www.reversinglongcovid.org

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Jackson Riso @jacksonriso.bsky.social · 30/04/2025

I find it very frustrating that our #LongCovid and #MECFS research organizations aren't articulating a strategy to get from where we are currently to where we want to go. I think clearly stating "We want to do this study and if it succeeds, here is what comes next" would raise a lot of funding.

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Jackson Riso @jacksonriso.bsky.social · 27/04/2025

It has been 7 months since the #LongCovid NIH RECOVER meeting back in September . . .has any progress been made AT ALL?

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