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

OrganicChilli said:
thesicktimes.org

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 thesicktimes.org

Martin Rücker is an ally, but he's consistently perpetuating biobabble. Can someone invite him to S4ME?
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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.
 
V.R.T. said:
I really find it frustrating that Wirth is so confident in all of this, despite not having done a single study to confirm.
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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?
 
Dude said:
They gave serum from ME/CFS patients to rats, and it induced muscle weakness in them. The medication was able to reverse this effect.
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Has that been published? I don't remember anything credible along those lines,
Dude said:
I also don’t understand why everyone is shitting on him when he’s just trying to help.
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'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.
 
Jonathan Edwards said:
'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.
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V.R.T. said:
I vaguely remember him saying this at one point but did they publish it?
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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.
 
Dude said:
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.
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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.
 
Dude said:
Good studies are known to be expensive.
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So maybe it was not a good study?
Dude said:
In what way is he causing harm?
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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.

Dude said:
“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.
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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.

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