Rosetta Stone Study: £1.1m awarded to investigate links between ME/CFS and Long Covid
- Thread starter Chandelier
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hotblack
Senior Member (Voting Rights)
Thanks @Adam pwme
Here’s the YouTube link (for those not on twitter, I also had problems with the piped.video site not loading so not sure if others will too)
If people don’t like YouTube just go to BBC Sounds and skip forwards to 2h 23m in to this programme
www.bbc.co.uk
Here’s the YouTube link (for those not on twitter, I also had problems with the piped.video site not loading so not sure if others will too)
If people don’t like YouTube just go to BBC Sounds and skip forwards to 2h 23m in to this programme
Andy Collins - Your Weekend in Three Words! - BBC Sounds
Andy is here with trusted local news, information and advice, plus Make a Difference.
www.bbc.co.uk
Nightsong
Senior Member (Voting Rights)
Jonathan Edwards
Senior Member (Voting Rights)
I wish I was more confident in the methodology. Asking for patients and controls on the internet is likely to be fraught with problems for studies like this. Healthy controls are likely to be 'superhealthy' individuals. If large numbers are gathered systematic confounders are very likely to arise at statistically significant levels.
bicentennial
Senior Member (Voting Rights)
What is the new industry standard to be .... followed .... in planning recruitments of volunteers?
1. Planned recruitment of volunteer patient advisors to help plan:
2. Planned recruitment of volunteer research subjects.
- that cant be preplanned without patient advisors in the planning stage.
In all sorts of local hospitals one can see invites posted in corridors seeking research subjects
For the blood tests, Imperial College wants local volunteers who can come into clinic
This research clinic is now being set up by Professor Altmann.
When researching menstrual associations, he gave out an email address for subjects to volunteer directly by email.
Today, I can't find any research recruitment pages on the Imperial College website. Not one page recruiting for any of its very many research operations. Maybe all ops recruit elsewhere.
Also, there is nothing to be found about the Rosetta Stone research on its website .
It looks a lot like the business terms of an MEA subsidy are:
- take it or leave it. For example, lease the admin back to our instituition-support service
- do all comms and recruitment only through the MEA, be that for patient advisors or remote research subjects, maybe even for local blood samples. And only release what the MEA agrees to when it agrees. So the MEA will relieve Imperial by conducting the support service
Only a few months ago, somewhere in middle Europe a researcher enlisted a 3rd party at arms length to provide the research support service, and was then bewildered when the patient advisors got very upset at being ignored. It upset him so much he almost pulled the plug.
I do not want to see this research being tainted by the terms and conditions of undue financial influence at the planning stage and throughout. IF the MEA provided communication support and patient advisors, recruitment, and other support service - then why on earth not say so.
If this is the case that cannot be disclosed, then my amateur impression is that such a highly selective trial has a controlled narrative, but it is not a controlled trial.
I tend to think like this because the MEA has form. It already endorsed Tyson validations reliant on blatantly unrepresentative patient advisors. It seems to be transferring that tactic to Scotland. And now it appeared, turning a Rosetta Stone into another MEA showcase.
I look forward to Professor Altmann, a seasoned international researcher, turning the MEA-branded Elaros app into a viable research tool with no strings attached. He can also evaluate Tysons toolkit with its patient feedback tool. And evaluate its medical device registration.
Meanwhile, as usual, a mysterious inaccessible selection of volunteer patient advisors is underway behind the scenes. But given his track record, I expect to hear otherwise from Professor Altmann.
1. Planned recruitment of volunteer patient advisors to help plan:
2. Planned recruitment of volunteer research subjects.
- that cant be preplanned without patient advisors in the planning stage.
In all sorts of local hospitals one can see invites posted in corridors seeking research subjects
For the blood tests, Imperial College wants local volunteers who can come into clinic
This research clinic is now being set up by Professor Altmann.
When researching menstrual associations, he gave out an email address for subjects to volunteer directly by email.
Today, I can't find any research recruitment pages on the Imperial College website. Not one page recruiting for any of its very many research operations. Maybe all ops recruit elsewhere.
Also, there is nothing to be found about the Rosetta Stone research on its website .
It looks a lot like the business terms of an MEA subsidy are:
- take it or leave it. For example, lease the admin back to our instituition-support service
- do all comms and recruitment only through the MEA, be that for patient advisors or remote research subjects, maybe even for local blood samples. And only release what the MEA agrees to when it agrees. So the MEA will relieve Imperial by conducting the support service
Only a few months ago, somewhere in middle Europe a researcher enlisted a 3rd party at arms length to provide the research support service, and was then bewildered when the patient advisors got very upset at being ignored. It upset him so much he almost pulled the plug.
I do not want to see this research being tainted by the terms and conditions of undue financial influence at the planning stage and throughout. IF the MEA provided communication support and patient advisors, recruitment, and other support service - then why on earth not say so.
If this is the case that cannot be disclosed, then my amateur impression is that such a highly selective trial has a controlled narrative, but it is not a controlled trial.
I tend to think like this because the MEA has form. It already endorsed Tyson validations reliant on blatantly unrepresentative patient advisors. It seems to be transferring that tactic to Scotland. And now it appeared, turning a Rosetta Stone into another MEA showcase.
I look forward to Professor Altmann, a seasoned international researcher, turning the MEA-branded Elaros app into a viable research tool with no strings attached. He can also evaluate Tysons toolkit with its patient feedback tool. And evaluate its medical device registration.
Meanwhile, as usual, a mysterious inaccessible selection of volunteer patient advisors is underway behind the scenes. But given his track record, I expect to hear otherwise from Professor Altmann.