The Sick Times: A journalist-founded website chronicling the Long Covid crisis
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Chandelier
Senior Member (Voting Rights)
What can professional athletes teach us about Long COVID and rest? - The Sick Times
Oonagh Cousins was preselected for the Tokyo Olympics as a professional rower on the British team — until Long COVID derailed everything.In this episode of Still Here, co-hosts Miles Griffis and Betsy Ladyzhets talk to Cousins about developing severe Long COVID at the start of the pandemic, her...
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Chandelier
Senior Member (Voting Rights)
Abandoned by our governments, people with severe ME and Long COVID are supported by severely ill peers - The Sick Times
Mari, a Black Canadian woman with severe myalgic encephalomyelitis (ME), is supported by fellow people with ME in the absence of institutional care.
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Abandoned by our governments, people with severe ME and Long COVID are supported by severely ill peers
Written by Whitney FoxJuly 20, 2026
Mari, a Black Canadian woman with severe myalgic encephalomyelitis (ME), is supported by fellow people with ME in the absence of institutional care.
Chandelier
Senior Member (Voting Rights)
How to interpret clinical trial results for Long COVID - The Sick Times
With no proven treatments or cures, many people with Long COVID are turning to off-label medications, supplements, and medical devices to treat their symptoms. There are numerous options — and some of them even have clinical trials underway or are reporting results. But even if one study...
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How to interpret clinical trial results for Long COVID
Written by Simon SpichakJuly 21, 2026
Even when results are “statistically significant,” the treatment might not actually work.
Key points you should know:
- There are currently no approved treatments for Long COVID. Experts say that the diversity of symptoms and severity makes it more difficult to run clinical trials.
- Trials of new drugs and devices are stratified by phases. Only phase 3 trials are designed to prove that a treatment is effective.
- When reading a study, experts say it’s important to note whether the primary outcome, which determines whether a trial succeeds, is both statistically significant and clinically meaningful. A statistically significant outcome does not necessarily mean an intervention will meaningfully improve one’s daily life.
- To understand whether an off-label medication may benefit you, experts say it’s important to understand whether the studied population has similar symptoms and clinical presentation to you, and to work with a medical provider to ensure a treatment is trialed safely.
Chandelier
Senior Member (Voting Rights)
Dysautonomia conference centers biomarkers and post-exertional malaise - The Sick Times
The 14th annual Dysautonomia International conference outside Houston included presentations on the role of autoimmunity in dysautonomia and a biobank initiative for POTS research.
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ahimsa
Senior Member (Voting Rights)
“This exhaustion is cellular”: Excerpts from the new book ‘What Is Myalgic Encephalomyelitis Like?’
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“This exhaustion is cellular”: Excerpts from the new book ‘What Is Myalgic Encephalomyelitis Like?’ - The Sick Times
Essays focusing on Severe Myalgic Encephalomyelitis (ME), from a new book by an international group of writers documenting their ME experiences.
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Chandelier
Senior Member (Voting Rights)
VIPER aims to fast track Long COVID biomarkers. Here’s how it works. - The Sick Times
Led by researchers at UCSF, the research program plans to validate promising candidates for noninvasive tests that can be used to advance clinical trials.
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Jonathan Edwards
Senior Member (Voting Rights)
It is interesting to see that about the VIPER study. But Long Covid is not like AIDS. AIDS was the clinical presentation of a new epidemic virus. We knew how to produce tests for viruses. It actually took a bit longer than usual to get a test for that virus. Long Covid probably isn't even a disease. It is more like back pain or dizziness. To me, the idea of a 'biomarker for back pain' or a 'biomarker for dizziness' doesn't make a lot of sense.
No doubt Peluso and Polybio, both of whom are selling the idea of viral persistence, like the bimarker jargon but to me it isn't a word that a serious scientist would use in the context. If someone has a test showing persistent virus and it correlates clinically (which it seems to be spectacularly failing at so far) then there is a test for a virus, not a biomarker.
I get grumpy like this from time to time.
No doubt Peluso and Polybio, both of whom are selling the idea of viral persistence, like the bimarker jargon but to me it isn't a word that a serious scientist would use in the context. If someone has a test showing persistent virus and it correlates clinically (which it seems to be spectacularly failing at so far) then there is a test for a virus, not a biomarker.
I get grumpy like this from time to time.
Jonathan Edwards
Senior Member (Voting Rights)
I guess I am in a groove of thinking that includes writing my speech for Jo's funeral. It focused on her ability to identify real immunology, perhaps fuelled by learning at a young age what to do with horse manure.
I guess it will become clearer whether searching for tests that correlate with clinical status, which is of course the goal, will be successful. If they are found, I don't think it matters much whether those are called biomarkers or "tests for a virus." As you say, HIV is a different matter, as the story also makes clear. I have zero idea whether this search will fall flat or not, but I'm glad they're giving it a thorough look.
I understand. I'm not sure the word "biomarker" is the most optimal target for a grumpiness stand, but I understand fully the grumpy impulse as I approach the end of my 70th year.
I am often confounded by the faith in contemporary virus diagnostics. For example, how do you test for Bourbon Virus? In the US, Bourbon virus is a big deal.
Perhaps just as important, if a pathogen is behind things like ME/CFS and LC, how do we know it's a virus and not a parasite or bacteria or mold?
We don't know what agent is at play, be it genetic or acquired , or a twisted tandem of the two.
Any research that is competent and unbiased, that is receptive to what the science reveals, is ok by me.
Snake oil pedlers have a way of coming out in the wash.
Perhaps just as important, if a pathogen is behind things like ME/CFS and LC, how do we know it's a virus and not a parasite or bacteria or mold?
We don't know what agent is at play, be it genetic or acquired , or a twisted tandem of the two.
Any research that is competent and unbiased, that is receptive to what the science reveals, is ok by me.
Snake oil pedlers have a way of coming out in the wash.
You and I and my wife are the same age. To truly date her, at least, she saw the Greatful Dead 10 times and Grand Funk and The Eagles and The Rolling Stones and...
I never wanted to see any of them. I never did. I wanted Pat Conroy's signed edition, or Herman Wouk's, or James Clavell's, or Norman Mailer's before he died even though he was such an American dick..
But you're CA now and I'm a "somewhere east of the Mississippi', and there is a vast biosphere full of biosphere lore in between.
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I'm sorry, I'm not sure what any of this signifies, It merely smacks of someone who dislikes the idea of persistence, at least to me. I am inclined toward persistence - not convinced - but inclined, and I assure you that I am serious.
I saw Peter, Paul & Mary. My family were folkies. I didn’t rebel or break away thru music but used other strategies. A few years ago I saw Diana Ross and Barbra Streisand. Both were great and I never need to see either again.
Jonathan Edwards
Senior Member (Voting Rights)
Oh it is, it is a word that I have heard a thousand times from the mouths of people who thin they are doing science but aren't. I never hear it from real scientists. It nearly always indicates a lack of understanding of the question in hand. It gets things backwards, assuming that the 'disease' exists first and that you just need a marker. The marker is the disease when you find it and the assumed 'disease' fades away.
Ha! We all have our breaking points!!!
Chandelier
Senior Member (Voting Rights)
Breast cancer exposed the lack of care I receive for Long COVID - The Sick Times
Cancer has a sadly well-worn path. It showed me that I deserve dignity and support for Long COVID.
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Breast cancer exposed the lack of care I receive for Long COVID
Written by Kara YorioAugust 14, 2026
Cancer has a sadly well-worn path. It showed me that I deserve dignity and support for Long COVID.
Chandelier
Senior Member (Voting Rights)
Congress’s 2027 budget could include new funding for Long COVID and ME - The Sick Times
Advocates are calling on senators and representatives to include the ME/CFS Research Roadmap and new Long COVID funding in the fiscal year 2027 budget as legislators debate appropriations bills in the coming weeks.
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Congress’s 2027 budget could include new funding for Long COVID and ME
Written by Betsy LadyzhetsAugust 18, 2026
Advocates are calling on senators and representatives to include the ME/CFS Research Roadmap and new Long COVID funding in the fiscal year 2027 budget as legislators debate appropriations bills in the coming weeks.
Key points you should know:
- Congress is legally required to pass a federal budget every year. The budget process, called appropriations, can be an opportunity to secure new research funding more quickly than specific, standalone bills.
- Advocates are pushing for the fiscal year 2027 budget to include $50 million for the ME/CFS Research Roadmap, a detailed plan to advance ME research from the National Institutes of Health (NIH).
- Some 2027 budget proposals include opportunities for new Long COVID and infection-associated chronic condition (IACC) funding across the NIH, other health agencies, and the Department of Defense.
- Advocates are focusing on contacting senators, as Senate offices are still drafting appropriations bills in the next few weeks while the House versions of these bills are already written.
Arnie Pye
Senior Member (Voting Rights)
Breast cancer exposed the lack of care I receive for Long COVID - The Sick Times
Cancer has a sadly well-worn path. It showed me that I deserve dignity and support for Long COVID.
Breast cancer exposed the lack of care I receive for Long COVID
Written by Kara Yorio
August 14, 2026
Cancer has a sadly well-worn path. It showed me that I deserve dignity and support for Long COVID.
In that article about breast cancer, is the comment "No doctor suggested the cancer was “in my head.”"
My mother and my mother-in-law were not so lucky. They both died of cancer.
In my mother's case she had what to me (with no medical training) was the clearest case of lung cancer anyone could have. She coughed and coughed and coughed and coughed, and lost lots and lots of weight over a period of six months (about 70 pounds as far as I remember), by which time she was emaciated, but was treated by her GPs as a waste of time and space who had decided to be annoying in her old age, and didn't get a diagnosis until she was eventually admitted to hospital for her increasing frailty. It was only then that an MRI scan showed her already advanced lung cancer. By that time her cough was so bad that she could barely speak.
My mother-in-law had extremely severe abdominal pain which I suspected (correctly) was ovarian cancer but she was dismissed over and over again because the CA125 test never showed positive. At one stage before finally getting diagnosed she was prescribed anti-depressants because clearly (sarcasm) her pain was in her head and she was drug-seeking and attention-seeking. I don't think her pain was treated until her condition metastasised.
In this article " https://thesicktimes.org/2026/07/10/stop-telling-women-their-long-covid-is-menopause/ " I'm of the opinion that in many cases if doctors couldn't blame something gynaecological for women's invisible health problems they would have no other ideas at all.