Remember the add "because you're worth it" well, this is the opposite. Alternately - because they couldn't care enough to do a good job -- or other words!
Think Jonathan's highlighted before that the NHS needs more money & I think it's underfunded compared to e.g. Germany & France. Also, that he (Jonathan) retired when they wouldn't come up with the resources to do the job.
Looks like this may be an example of an alterative strategy* --- makes it...
Read by 38 people -- so yes, no chance of a "viral spiral!!" Plus there's a link to your post on Science 4 ME* & thereby the further posts.
Apologies again.
*[Jonathan Edwards] "A trial of anti-CD8might be the simplest option. If it did nothing with CD8 depletion the idea would be refuted...
Apologies - perhaps it would help to clarify if I posted this* --- don't think you can delete tweets?
*"to say that I suggested a trial is potentially misleading. I suggested that a trial might be good idea. I am not suggesting anyone does one without very careful analysis of the available...
EDIT - I recall e.g. Vicky Whittemore (NIH) in one of the recent ME/CFS Roadmap talks responding to a question re drug trial - from memory the response was roughly "insufficient evidence" - which I agreed with. However, this looks like a situation where a drug trial could reasonably be done now...
snow leopard posted on Twitter/X-
"I'm not so sure about this for ME. I would like to see a trial of anti-CD8 in the AIDP subset of GBS patients though."
So if this was a common cause of ME/CFS the would you expect to see a signal in DecodeME (GWAS study*) and would it be?
Also, re study of families with more than 1 member affected* - looking for rare variants - would you expect to see a signal and would it be?
EDIT - any news re Ron Davis's NIH...
Forgot to add this to my post -still waiting for the data from Ron Davis's study on HLA genes - not sure if they're related to this?
https://www.s4me.info/threads/ron-davis%E2%80%99s-big-immune-study-is-looking-at-hla-genes-hla-wtf-here%E2%80%99s-the-story-simon-m-blog.4798/#post-86574
Re AIRE*, if that was relevant in ME/CFS then would you expect that (fact) to be identified via:
GWAS [DecodeME] - looking for common variants which contribute to disease risk/protection from disease?
genetic study [using whole genome sequences] looking for rare variants which increase risk to...
Couple of links below - presumably posts by the institutions which were part of the successful bid.
MedUni Vienna coordinating EU project to unravel the interplay between infectious diseases and noncommunicable diseases
Funding totaling €8.4 million as part of "Horizon Health"...
noticed =AZXAr6IgHLkcsMTcELUEyZ5yL6Vg0h8HRZLkaeij_6zbDuTZCh9-QuMp6VCJIECZBvWYXxyaxh-iVYiPhYgw4sdVpGdkkyLXm0I3wU1uut1u5TxgYtPfg44n_vmdVqEfJXA&__tn__=-UC%2CP-R']Fereshteh Jahanbani posted a link to the above on Facebook -...
Precisely and thanks.
Genetic studies like:
DecodeME (GWAS) - which you (Jonathan) identified as a potential way to make progress; and
studies to find rare genetic variants via family studies (e.g. with multiple members affected). Hopefully NIH will fund this - see webinar;
may help to...
Yea, lets request parity - would you license a drug on that basis - hearsay? If not, then why is it acceptable for a non-pharmaceutical intervention - especially when objective indicators can be incorporated into trials [of a non-pharmaceutical intervention] i.e. to test for long term (real...
Decided to post this on Twitter i.e. and tag NIH -
@SimonMcGrath @Wilhelmina Jenkins
"
Replying to
@LauraAPace
@NIH
@NIH_NINDS
Genetic studies on families with more than 1 member affected by ME/CFS (preferably with at least 1 member severe) - looking for rare variants. This offers potential to...
Thanks Wilhelmina - do you know if we can make suggestions re research NIH should fund (following these webinars)? E.g. the genomics/genetics talk had references to studies of families with multiple members affected - as a way to find rare alleles which cause disease in those individuals &...
Wot with him being an expert & all that I'd expect him to be aware of Brian Hughes [University of Galway] publications re need to ensure objective outcomes --- i.e. to objectively claim improvement e.g. ability to return to work ---. OK there'll be none of that objective stuff!
See he's on...
I think one of the lessons we can learn from the Post Office scandal is the fact that the post office were told by their lawyers not to defend a claim for
compensation:
reason why they chose not to defend that case i.e. they had requested a review of the IT system and the specialist employed...
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