Identification of CD8 T-cell dysfunction associated with symptoms in [ME/CFS] and Long COVID and treatment with a nebulized ... 2023 Gil et al
- Thread starter Andy
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Good critical threads on Twitter. https://twitter.com/user/status/1742533890923692121
https://twitter.com/user/status/1742517498442907939
https://twitter.com/user/status/1742517498442907939
Dolphin
Senior Member (Voting Rights)
A press release for this study has now been released:
"UMass Chan advances research into #longCOVID, #chronicfatiguesyndrome"
https://www.eurekalert.org/news-releases/1032868
"UMass Chan advances research into #longCOVID, #chronicfatiguesyndrome"
https://www.eurekalert.org/news-releases/1032868
I'm not sure if this 2025 Solve ME webinar has been discussed on the forum already, but it's directly relevant to this paper, so I'll put a copy here:
I find it all quite puzzling. The paper is so very bad, with its basically irrelevant anecdotes about inspiritol. And inspiritol also gets a number of mentions in the webinar too.
It does not seem that things have moved on enormously between the paper and the webinar. There are some interesting results shown in the webinar, but the numbers of patients are still very small, and the data is acknowledged to be heterogeneous.
In the webinar, there is a lot of talk about how they need money to commercialise a test for exhausted T cells. But there still isn't great proof that this is what is happening in people with ME/CFS.
I can totally see the genuine commitment of everyone on that webinar, but when there is hand-wringing about the stigma of ME/CFS and how money is needed to make this commercial test, I want to yell at them 'get more data, get more convincing data! And, for goodness sake, stop mentioning Inspiritol (and the other dubious treatments that one of the patient representatives is promoting), unless you are prepared to do a blinded study on them.'
These people have had a lot of funding. Why have they got so little data? There's no point making a test until we really know what we are looking for. I wonder if the idea of a biomarker test is just to excite donors, selling the idea in the hope that it can be made a reality.
I'm interested in people's thoughts about the webinar.
I find it all quite puzzling. The paper is so very bad, with its basically irrelevant anecdotes about inspiritol. And inspiritol also gets a number of mentions in the webinar too.
It does not seem that things have moved on enormously between the paper and the webinar. There are some interesting results shown in the webinar, but the numbers of patients are still very small, and the data is acknowledged to be heterogeneous.
In the webinar, there is a lot of talk about how they need money to commercialise a test for exhausted T cells. But there still isn't great proof that this is what is happening in people with ME/CFS.
I can totally see the genuine commitment of everyone on that webinar, but when there is hand-wringing about the stigma of ME/CFS and how money is needed to make this commercial test, I want to yell at them 'get more data, get more convincing data! And, for goodness sake, stop mentioning Inspiritol (and the other dubious treatments that one of the patient representatives is promoting), unless you are prepared to do a blinded study on them.'
These people have had a lot of funding. Why have they got so little data? There's no point making a test until we really know what we are looking for. I wonder if the idea of a biomarker test is just to excite donors, selling the idea in the hope that it can be made a reality.
I'm interested in people's thoughts about the webinar.
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Jonathan Edwards
Senior Member (Voting Rights)
I think I have seen this before and tried to dip in. It is rambling, tedious and uninformative as far as I can see.