SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

You have to use your real name that is registered with the Times in order to comment. On balance I think that is a good thing as it prevents trolls hiding behind aliases.

I’ve just read through the comments under the Times article. Sympathetic/helpful comments seems to be in the majority and have the most likes.

Neil Riley’s comment is shocking. I hope the MEA will distance itself from his ignorance.
 
Kitty said:
Must have your real name, or must have an email address in your made-up one?

I don't know because I've never read The Times in my life, but the latter applies in most cases. I know people with two or three Gmail addresses for the purpose.
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Yes it was like here for years where you always had to provide real details first the account but as the public username for comments then had a moniker of you wanted. But around end of 2021 they made it a big policy change that it was real names only / got rid of aliases /pen names etc . Lots of articles/emails about it with rationale in lead up and so on.

On that basis I don’t imagine it changed back as I haven’t heard anything but someone on it more might confirm?
 
Sean said:
Seems to be a disturbance in the force within the MEA.

:emoji_smiling_imp:

Riley's nonsense reminds of Edward Shorter's nonsense that there will never be any evidence that ME/CFS is biological.
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It’s a bit of a strange thing to say to me because he was a lawyer so obviously isn’t thick but you only have to have read the newspapers for the last 5yrs to know a lot of things seem to now be linked to ‘a bout if glandular fever’ you know like MS has links as do other diseases, so it’s not even ticking the clever sophistry box where I can see who it’s dog whistling to and on what message.

Anyone know what his real issue could be with it/ what he meant to say?
 
Ariel said:
Many people do read comments and are influenced by them immensely in various ways even if they do not recognize it, which is why companies and individuals run influence campaigns using internet comments by both humans and bots on various platforms.
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Exactly. If people didn't read comments in comment sections one could easily argue the world wouldn't have the kinds of politicians we now all have to suffer. Sadly, they do influence opinions greatly.
 
So the funding is enough for 6000 ME/CFS patients? Will it be split between ME/CFS and LC?

I'm not sure that including LC is a good idea because in my opinion ME/CFS seems to be sufficiently well defined to obtain useful results, as shown by DecodeME. Initially during the pandemic era, studying LC seemed like a way to make progress by selecting a more specific group of patients, but several years after the pandemic this doesn't seem to have delivered any results. In practice LC does not seem to be specific, due to difficulty verifying that the trigger actually was the coronavirus and the awfully broad case definition.
 
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Lou B Lou said:
Neil Riley still causing trouble, this time in the Comments to the Times article:

"I agree. The vast majority of people with ME get it after a viral illness with many having had glandular fever previously.
Genetic coding will do nothing to help find a form of treatment that benefits this terrible illness. The only benefit of this new study is that Government has finally recognised that research is needed...but not this one.

Neil Riley-former Chairman of The ME Association"


www.thetimes.com

Landmark ME study will map patients’ DNA in mission to find cure

The government will provide £4.75 million in funding to British scientists who aim to create a test to reliably identify chronic fatigue syndrome
www.thetimes.com www.thetimes.com

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showing himself up again
 
Massive congratulations to everyone involved. Wonderful news!

Is phase 2 sequencing only? More precisely, is assembling and annotating genomes a part of phase 2 or a part of the analysis phase? I didn't see anything in between those two phases on the AfME website.

Should EMBL-EBI be added to the title of this thread?
 
Lou B Lou said:
BPS supporters, many of them Drs, come out in numbers to comment on any ME article in the Times, the same names year after year. They systematically reinforce all the debunked psycho-behavioural dogma. I doubt they would bother if they thought no one was reading.

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I don’t care what they think, they think our illness is caused by thoughts, they think people are interested in their comments…bit grandiose of them.
 
Kitty said:
Congratulations to everyone, this is fantastic news. The government grant is important in itself, but hopefully it will also have a pump-priming effect.


"Mrs Trellis of north Wales"

Did DecodeME completely pass him by or something?
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Neil just wanted us all to know that his anecdotal knowledge of “glandular fever causes ME” is more important than further genetic investigation into Long Covid and ME.
As a comment, it’s not just lacking scientific rigour it’s also a failure of English language comprehension.
 
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