The Sick Times: A journalist-founded website chronicling the Long Covid crisis

[OrganicChilli]

Breaking the vicious cycle: How two German scientists seek to solve ME - The Sick Times

A “unifying” hypothesis of the mechanisms, triggers, and risk factors for myalgic encephalomyelitis (ME), is gaining support. Further evaluation and development of a potential drug depend on funding.

thesicktimes.org

Martin Rücker is an ally, but he's consistently perpetuating biobabble. Can someone invite him to S4ME?

 

[Jonathan Edwards]

Martin Rücker is an ally, but he's consistently perpetuating biobabble.

Agreed. I am not sure how he gets invited?

 

[V.R.T.]

Breaking the vicious cycle: How two German scientists seek to solve ME - The Sick Times

A “unifying” hypothesis of the mechanisms, triggers, and risk factors for myalgic encephalomyelitis (ME), is gaining support. Further evaluation and development of a potential drug depend on funding.

thesicktimes.org

Martin Rücker is an ally, but he's consistently perpetuating biobabble. Can someone invite him to S4ME?

I really find it frustrating that Wirth is so confident in all of this, despite not having done a single study to confirm.

He makes so.many confident pronouncements that are just pulled out of his rear end as far as I can tell. For example: for what reason would this drug not help severe patients on its own? What mechanistic difference between moderate and severe does he propose? What other drugs would they need? He says this over and over with no expansion or evidence, yet we have no indication his drug will help a single person. Why fearmonger among the sickest based on a bunch of confused hunches?

And so many patients lobby for his drug over this like SequenceME or Daratumumab, which actually stand a real chance of helping.

 

[OrganicChilli]

Agreed. I am not sure how he gets invited?

He can be contacted here: https://www.martin-ruecker.com/kontakt

 

[Dude]

I really find it frustrating that Wirth is so confident in all of this, despite not having done a single study to confirm.

I wouldn’t say that. They gave serum from ME/CFS patients to rats, and it induced muscle weakness in them. The medication was able to reverse this effect.

I also don’t understand why everyone is shitting on him when he’s just trying to help.

Many of the mechanisms he describes are supported by studies, even if they are still small. So far, there’s nothing that really contradicts the hypothesis, so why is everyone being so negative?

 

[Jonathan Edwards]

They gave serum from ME/CFS patients to rats, and it induced muscle weakness in them. The medication was able to reverse this effect.

Has that been published? I don't remember anything credible along those lines,

I also don’t understand why everyone is shitting on him when he’s just trying to help.

'Trying to help' is not enough if you are in reality doing harm. Medical research is for grown-ups not alms ladies with sweet trolleys. I think he is getting a hard time because his publications seem pretty incoherent and lacking in any credible evidence.

 

[MrMagoo]

Well it’s going viral on Social Media everyone is lapping it up. Sodium and Calcium are this weeks “inflammation” people are this close to stopping drinking milk now probably

 

[V.R.T.]

I wouldn’t say that. They gave serum from ME/CFS patients to rats, and it induced muscle weakness in them. The medication was able to reverse this effect.

I vaguely remember him saying this at one point but did they publish it?

 

[Dude]

'Trying to help' is not enough if you are in reality doing harm. Medical research is for grown-ups not alms ladies with sweet trolleys. I think he is getting a hard time because his publications seem pretty incoherent and lacking in any credible evidence.

I vaguely remember him saying this at one point but did they publish it?

Not yet, but there could be many reasons for that. Maybe it was only a small observational study to test the effectiveness of the medication under laboratory conditions. Good studies are known to be expensive. Maybe they are waiting for the toxicology tests. There could be many reasons.

In what way is he causing harm? By saying: “I have a medication based on a hypothesis that we technically cannot measure or fully capture with current methods, and therefore we need to test it”? A lack of evidence is not evidence against it.

What evidence did people have for Rituximab in the beginning, other than the fact that it seemed to work anecdotally?

I think it is a good thing when someone actively tries to help. And even if the final result turns out to be negative, you still learn something from it.

 

[Peter T]

I think it is a good thing when someone actively tries to help. And even if the final result turns out to be negative, you still learn something from it.

Surely it depends how any prospective treatment is marketed. The research is useful, but the need for a treatment is such that many people will rush out and try anything on the slightest provocation.

I can’t remember the publicity around this particular research, so this may not apply specifically here, but so many researchers allow over selling implying their research is on the cusp of solving ME/CFS for ever, when later the hype fades with nothing concrete emerging.

 

[Jonathan Edwards]

Good studies are known to be expensive.

So maybe it was not a good study?

In what way is he causing harm?

By encouraging a lot of potentially dangerous off-label treatment and feeding a pseudo-scientific folklore about ME/CFS. The point is more that he may be doing no good, just wasting people's time and money.

“I have a medication based on a hypothesis that we technically cannot measure or fully capture with current methods, and therefore we need to test it”? A lack of evidence is not evidence against it.

But there is a huge body of evidence against it. There are no clinical signs to go with what he is proposing and the past literature fails to support all sorts of predictions the theory will make. The theory is a disjointed collection of ideas that do not, as far as I can see, connect to form a plausible pathway. He is even bringing in hypermobility into the story now.

What evidence did people have for Rituximab in the beginning, other than the fact that it seemed to work anecdotally?

The situation there is quite different. No abstruse theory was claimed. There was simply an observation of apparent benefit with B cell directed therapies. Involvement of B cells was plausible. Doing well designed studies to confirm that was justifiable. Fluge and Mella did not attempt to sell their hypothesis. Oystein Fluge said to me in Bergen 'I hope we are not misleading you here'. They published everything meticulously.

There are easily read signs of good science and bad science. There is a stark difference here.

 

[ahimsa]

"International ME/CFS Conference roundup: Setbacks and new hopes for therapeutic research"

International ME/CFS Conference roundup: Setbacks and new hopes for therapeutic research - The Sick Times

More than 50 experts from around the world presented the latest findings in basic and therapeutic research on myalgic encephalomyelitis (ME) and Long COVID at a conference in Berlin.

thesicktimes.org

Key points you should know:

- More than 50 experts from around the world presented the latest findings in basic and therapeutic research on myalgic encephalomyelitis (ME) and Long COVID at a conference in Berlin.

- Researchers unveiled first preliminary results from several highly anticipated clinical trials, including studies on low-dose naltrexone (LDN) and immunoadsorption.

- While the randomized controlled trial treatments presented failed to meet their primary endpoints over placebos, smaller studies pointed to potentially promising therapies.

- One study found that even under optimized conditions, physical rehabilitation can worsen ME.

Conference discussion thread is here:

J

Thread '[ME/CFS Research Foundation] International ME/CFS Conference 2026 7–8 May'

Apr 21, 2026

ME/CFS Research Foundation

events.mecfs-research.org

A mix of great speakers and a couple of not-so-great ones.

• Jaybee00
• Replies: 256
• Forum: General ME/CFS news

• 

 

[Chandelier]

Research ethics boards need urgent training on Long COVID and myalgic encephalomyelitis​

Written by Simon Spichak
June 2, 2026

Despite being set up to protect vulnerable participants, these boards are ill-equipped to ensure research is safe, especially regarding post-exertional malaise (PEM).​

Research ethics boards need urgent training on Long COVID and myalgic encephalomyelitis - The Sick Times

Last year, researchers in Ontario, Canada started recruiting participants for a Long COVID trial testing the feasibility of exercise and rehabilitation. Like many other studies of exercise, it doesn’t use validated measures for post-exertional malaise (PEM). But the Pursuing Reduction in Fatigue...

thesicktimes.org

From the author‘s Bluesky account:

---

Simon Spichak
June 2 2026
What happens when you write a letter to an ethics board about concerns over a Long COVID trial?
The ethics committee sends a response to an entirely different group of people and tells you to contact them to get a response!
My commentary for @thesicktimes.org
1/n

Research ethics boards need urgent training on Long COVID and myalgic encephalomyelitis - The Sick Times

The PREFACER study tests exercise and rehab without properly accounting for PEM, and uses a Zelen deisign that I and other researchers and patient advocates believed violates informed consent and other research standards. 2/n

Participants are initially told that they are taking part in an observational study designed to follow Long COVID and assess the costs of standard care, but half will receive the exercise intervention. 3/n

The researchers justify this study design by claiming that people with Long COVID have a bias against exercise, and that concealing the initial study design would mask so-called “nocebo effects,” in which people experience side effects because they think they’re being harmed.4/n

So here's the fun part!
We wrote a letter to the ethics committee and were told that they'd do a post-approval review of the study protocol and get back to us.
They ended up writing a letter and sending it to a completely separate patient group that raised similar concerns. 5/n

They wouldn't send me a response and told me to get in touch with the other group to view what they wrote in response.
It turned out that there were three groups of journalists/researchers/advocates that lodged similar concerns. 6/n

But the ethical committee found nothing wrong and the study is continuing to recruit participants. 7/n

Thanks to those who signed the letter including @exceedhergrasp1.bsky.social, @longcovid-adri.bsky.social, @ace9801.bsky.social, @wanderingkayli.bsky.social and many others.8/nI argue that ethial committees need to do a better jo and ensure that researchers are designing trials that are safe and use actual validated measures. 9/n

When these studies proliferate and poison the medical literature, they become fodder for rehabilitation clinics and self-help gurus to sell unevidenced treatment plans. These multiply the harms for an already medically neglected group of people.
/end

---

Fyi @dave30th

 

[rvallee]

Despite being set up to protect vulnerable participants, these boards are ill-equipped to ensure research is safe, especially regarding post-exertional malaise (PEM)

The purpose of a system is what it does, there is no point in claiming that the purpose of a system is to do what it constantly fails to do.

 

[bobbler]

relates to the following article/thread: https://s4me.info/threads/wired-magazine-the-painful-truth-about-long-covid.50481/page-7#post-697370

But I've only pasted here for now - as I didn't know which way around was best for comments etc.

From the sick times on fb , mainly a video

copy paste of the test for those not on fb:

Earlier this week, WIRED published a 7,000 word essay titled “The Painful Truth About Long Covid.”
In it, they promoted the kind of “positive-think yourself back to good health” pseudoscience that has led to the gaslighting and dismissal of people with Long COVID by doctors, therapists, researchers, colleagues, and friends and family. The essay has received extensive criticism, including calls for retraction from Long COVID groups.
As someone who has been living with and reporting on Long COVID for six years, Sick Times’ co-founder and executive editor, Miles W. Griffis, responds.

Also on instagram:

 

[ahimsa]

[The Sick Times has reprinted an essay by Todd Davenport. A link to his essay on substack was posted in the thread about the WIRED article but I know some folks have muted or avoided that thread so I thought it was worth posting this new link here.]

"We must free Long COVID and the people living with it from the mind-body trap"

We must free Long COVID and the people living with it from the mind-body trap - The Sick Times

There is a recurring pattern in the history of medicine that still pops up from time to time. When our understanding of a disease lags far behind the need for explanations, biology becomes a matter of one’s own perception. This inevitably shifts the burden of proof back onto the people we should...

thesicktimes.org

There is a recurring pattern in the history of medicine that still pops up from time to time. When our understanding of a disease lags far behind the need for explanations, biology becomes a matter of one’s own perception. This inevitably shifts the burden of proof back onto the people we should be helping; those who suffer with the disease.

A recent essay on Long COVID published in WIRED magazine leans into this familiar trope, reframing the condition as a matter of unrealistic expectations. The essay suggested that perhaps Long COVID is less about the well-documented biological disruptions taking place and more about how the brain interprets them. That if we can just change the brain’s interpretation, then we might change the experience and fix the problem.

The premise seems powerful. But it puts the cart before the horse. It’s an oversimplification that confuses a complex multisystem pathophysiology with psychogenesis. This essay did a speed-run of one of medicine’s oldest mistakes within the span of a mere 7,000 words.

Given the ever-increasing number and quality of studies documenting what we have come to understand about the pathophysiology of Long COVID, it is very difficult to think Long COVID is principally a disorder of perception. Instead of a disorder of perception, the existing scientific literature describes a multi-system disease of bioenergetic failure, immune dysregulation, and vascular dysfunction.

 

[Jonathan Edwards]

The Sick Times has reprinted an essay by Todd Davenport.

Unfortunately, Davenport lists a whole lot of things as known when the evidence is limited or largely negative. In many ways he is making the case he is trying to refute.

The brain may need retraining. If all its microglia have acquired an epigenetic change that makes them go on sending out the wrong signals, that would merit 'retraining'. Just not the sort of retraining being sold at present.

It is such a pity that people with ME/CFs are stuck in the middle of this debate.

 

[Hutan]

I forgot to post this earlier.
I appreciate Todd's motives in consistently coming to our defence, but I don't think this:

Instead of a disorder of perception, the existing scientific literature describes a multi-system disease of bioenergetic failure, immune dysregulation, and vascular dysfunction.

is helping. The existing scientific literature does not yet paint a reliable picture about these things.