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

Thanks for the reply, Jill! Glad to hear abilify is also helping others. see my latest here: bsky.app/profile/jack...

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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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Jackson Riso @jacksonriso.bsky.social · 17/03/2026

I'm sorry you went through that :(

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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 · 18/02/2026

That's what Jarred Younger's is! He is testing different doses to answer this question and to prep for the development of a new drug that will allow for higher dosing.

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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 · 05/02/2026

Thanks for reporting on this.

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Jackson Riso @jacksonriso.bsky.social · 05/02/2026

Thank you for expressing this eloquently. Sorry you’re going through it :-/

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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

And that's it. No other mentions :-/

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

Sen. Kaine: - has mild LC - happy to hear about RFK's roundtables - Trump admin pulled down websites on LC, terminated HHS advisory committee and AHRQ coordinating center. Director: "NIH is committed to finding an answer for Long Covid patients" --> What does this mean in practice? Doesn't say.

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

So far, light on details. Claim RECOVER has shifted away from biomarkers towards treatments. "We need to get answers". "Absolutely have" started those treatment studies. This is false. RECOVER-TLC has not started their studies yet.

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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 · 27/12/2025

Amazing! I do not. I guess I just wouldn't feel clean? I have also heard you can. I know people who do with the Apple Watch, with no problems. I assume similar tech.

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Jackson Riso @jacksonriso.bsky.social · 27/12/2025

Okay, let me know how it goes with turning phone off/on. Confirm that the Visible app has Bluetooth permissions enabled in your phone’s settings (Privacy/Security -> Bluetooth). And double check battery/charging of Visible band (I remember this being an issue for me).

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Jackson Riso @jacksonriso.bsky.social · 27/12/2025

What phone type & model are you using? Success pairing other bluetooth tech? Tried standard turning it on and off again?

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Jackson Riso @jacksonriso.bsky.social · 10/12/2025

I did an at home sleep study as a Hail Mary. No issues.

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Jackson Riso @jacksonriso.bsky.social · 04/12/2025

This is just bias, right? The people who fully recover and can do everything again are called "cured", and those who can't aren't. For the people who take a drug and only see a little benefit or no benefit . . .it could be b/c it's not a cure for them or because those people have tissue damage.

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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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Jackson Riso @jacksonriso.bsky.social · 30/10/2025

Thanks for doing this. No funding commitments from the government?

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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 · 30/10/2025

What caused the all-cause mortality to increase?

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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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Jackson Riso @jacksonriso.bsky.social · 18/10/2025

What would make you more confident that the model does fit? What experiment or study would you need to see?

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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

I would argue that another limitation is that chronically ill people tend to hang out with each other. If you are chronically ill, your spouse is likely(?) to be chronically ill too, hence, an increase in doctor's visits & disability pensions for them.

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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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