Jackson Riso
@jacksonriso.bsky.social
Former Business Process Consultant.
Current Long Covid Sufferer waiting for treatments.
Current Long Covid Sufferer waiting for treatments.
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. :-/
Almost as if they are intentionally trying to cover it up. :-/
November 10, 2025 at 5:14 PM
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. :-/
Almost as if they are intentionally trying to cover it up. :-/
Reposted by Jackson Riso
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.
October 30, 2025 at 4:04 AM
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.
Reposted by Jackson Riso
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.
A step at a time. A day at a time.
Some days let herself collapse.
October 30, 2025 at 3:39 AM
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.
A step at a time. A day at a time.
Some days let herself collapse.
Reposted by Jackson Riso
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.
October 30, 2025 at 2:52 AM
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.
Reposted by Jackson Riso
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.
October 30, 2025 at 2:22 AM
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.
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.
October 29, 2025 at 5:15 AM
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.
Reposted by Jackson Riso
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."
"What I have learned is that most of the patients that I have seen with ME are so much sicker than my cancer patients."
#IIMEC17 11 Clinicians' Panel Discussion
Open Panel Discussion
Chaired by Professor Andrew Wilson, UEA, UK
More at https://investinme.org/iimec17-andrewwilson.shtml
youtu.be
October 16, 2025 at 4:51 PM
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."
"What I have learned is that most of the patients that I have seen with ME are so much sicker than my cancer patients."
Reposted by Jackson Riso
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)
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)
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."
"What I have learned is that most of the patients that I have seen with ME are so much sicker than my cancer patients."
#IIMEC17 11 Clinicians' Panel Discussion
Open Panel Discussion
Chaired by Professor Andrew Wilson, UEA, UK
More at https://investinme.org/iimec17-andrewwilson.shtml
youtu.be
October 16, 2025 at 5:49 PM
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)
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)
Reposted by Jackson Riso
“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.”
“The Trump administration is not only failing to achieve those goals, but actively taking us in the wrong direction.”
Long Covid Is Real -- And It's Changing an Entire Generation
bit.ly
October 16, 2025 at 6:00 PM
“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.”
“The Trump administration is not only failing to achieve those goals, but actively taking us in the wrong direction.”
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.
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.
October 14, 2025 at 8:35 AM
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.
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.
Reposted by Jackson Riso
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.
If ME/CFS were a war, it seems that the brain would be its main battlefield.
October 4, 2025 at 8:28 AM
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.
If ME/CFS were a war, it seems that the brain would be its main battlefield.
Reposted by Jackson Riso
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.
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.
October 1, 2025 at 7:56 AM
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.
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.
Reposted by Jackson Riso
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.
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.
September 28, 2025 at 8:01 AM
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.
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.
Reposted by Jackson Riso
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!
Healthy indoor air is a key tool for preventing pandemics, building climate resilience, and increasing health equity. We need it everywhere!
September 24, 2025 at 10:53 PM
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!
Healthy indoor air is a key tool for preventing pandemics, building climate resilience, and increasing health equity. We need it everywhere!
What are the odds we get real Long Covid treatments that get us anywhere close to normal in the next 30 years?
September 23, 2025 at 6:06 AM
What are the odds we get real Long Covid treatments that get us anywhere close to normal in the next 30 years?
Crazy that the NIH's #LongCovid RECOVER program is maybe the worst that a group of scientists have ever done at anything ever.
September 20, 2025 at 9:55 PM
Crazy that the NIH's #LongCovid RECOVER program is maybe the worst that a group of scientists have ever done at anything ever.
Reposted by Jackson Riso
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”.
September 19, 2025 at 3:42 PM
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”.
Reposted by Jackson Riso
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.
September 18, 2025 at 8:29 PM
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.
Reposted by Jackson Riso
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
September 17, 2025 at 10:03 PM
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
Reposted by Jackson Riso
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...
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...
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...
link.springer.com
September 16, 2025 at 7:55 PM
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...
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...
Reposted by Jackson Riso
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...
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...
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...
youtube.com
September 14, 2025 at 7:45 PM
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...
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...
Reposted by Jackson Riso
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
New CDC-funded multi-centre study:
Autonomic Dysfunction in ME/CFS
www.mdpi.com/2077-0383/14...
"ME/CFS patients exhibit a substantial autonomic symptom burden that correlates with greater illness severity"
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Autonomic Dysfunction in ME/CFS
www.mdpi.com/2077-0383/14...
"ME/CFS patients exhibit a substantial autonomic symptom burden that correlates with greater illness severity"
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
![Abstract
Background/Objectives: Symptoms of autonomic dysfunction are common in infection-associated chronic conditions and illnesses (IACCIs), including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This study aimed to evaluate autonomic symptoms and their impact on ME/CFS illness severity. Methods: Data came from a multi-site study conducted in seven ME/CFS specialty clinics during 2012–2020. Autonomic dysfunction was assessed using the Composite Autonomic Symptom Scale 31 (COMPASS-31), medical history, and a lean test originally described by the National Aeronautics and Space Administration (NASA). Illness severity was assessed using Patient-Reported Outcomes Measurement Information System measures, the 36-item short-form, as well as the CDC Symptom Inventory. This analysis included 442 participants who completed the baseline COMPASS-31 assessment, comprising 301 individuals with ME/CFS and 141 healthy controls (HC). Results: ME/CFS participants reported higher autonomic symptom burden than HC across three assessment tools (all p < 0.0001), including the COMPASS-31 total score (34.1 vs. 6.8) and medical history indicators [dizziness or vertigo (42.6% vs. 2.8%), cold extremities (38.6% vs. 5.7%), and orthostatic intolerance (OI, 33.9% vs. 0.7%)]. Among ME/CFS participants, 97% had at least one autonomic symptom. Those with symptoms in the OI, gastrointestinal, and pupillomotor domains had significantly higher illness severity than those without these symptoms. Conclusions: ME/CFS patients exhibit a substantial autonomic symptom burden that correlates with greater illness severity. Individualized care strategies targeting dysautonomia assessment and intervention may offer meaningful improvements in symptom management and quality of life for those with ME/CFS and similar chronic conditions.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:43rudsv62fuwsmnk7oppgtdy/bafkreiepoqjixgqdpo5rhxqw6vvf6isna5kdlogv2w46wshsunt47essme@jpeg)
September 8, 2025 at 1:34 PM
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
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".
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".
September 9, 2025 at 5:46 PM
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".
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".
Reposted by Jackson Riso
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
- 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
August 24, 2025 at 8:16 AM
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
- 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
Reposted by Jackson Riso
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
August 20, 2025 at 11:17 PM
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