It's M.E. Linda
Senior Member (Voting Rights)
Looks like they deleted it, I'll edit my post to remove it.
The link was broken. A further tweet was posted.
Looks like they deleted it, I'll edit my post to remove it.
No, I think her son does, though.Does Sonya Chowdhury have ME?
I don't know where this incorrect impression has come from as I've seen it quoted elsewhere. I obviously can not guarantee a precise date, not least because it will depend on how quickly recruitment and receipt of samples goes, but we are hoping for sometime around mid 2024.which won't likely report findings for a number of years (if I recall correctly, I think they said c.5 years?)
I’m almost certain it was a timeline mentioned on one of the Decode webinars, but I could obviously be wrong.I don't know where this incorrect impression has come from as I've seen it quoted elsewhere. I obviously can not guarantee a precise date, not least because it will depend on how quickly recruitment and receipt of samples goes, but we are hoping for sometime around mid 2024.
The latest I have heard is that results (not final, published results) might be seen before 2024.To my simple mind though, 2 years, 5 years, it doesn’t fundamentally change that there’s no guarantee that Decode will find anything of any use, yet, everything seems to be pinned on this one study. I struggle to get past that..
Where’s the parallel UK research into what’s actually going on in our bodies? There isn’t any to the best of my knowledge - perhaps I have unrealistic expectations?
understandably, the only thing that will change your mind on this is what the breakthrough strategy delivers. Personally, I'm optimistic.This ‘Breakthrough’ unfortunately strikes me as potentially a talking shop
The methods are fairly standard and combining results from several big DNA studies is routine (and papers doing this pay attention to any differences when drawing conclusions).The methods to extract data used by the DeCodeME team -- are they fairly standardised across the scientific community? Or to say it differently might other countries do things the same way or are their some variables?
At this point, it has to be accepted that ME/CFS is a very difficult problem. Even if resources hadn't been wasted on chasing down a mythological psychological cause, 20thC style biological investigation may not have advanced understanding of ME/CFS very far, or even at all. We can see from the circles that a number of US researchers are going in, that at best they are working slowly through a myriad of possibilities, driven by hunches rather than any clear science. That of course may eventually yield something helpful beyond a list of 'dead ends' but as things stand it is an approach that looks more like doing the lottery than a scheme of work with a focused end.Where’s the parallel UK research into what’s actually going on in our bodies? There isn’t any to the best of my knowledge - perhaps I have unrealistic expectations?
I haven’t seen a better explanation of why we are doing what we’re doing with DecodeME. Thanks.At this point, it has to be accepted that ME/CFS is a very difficult problem. Even if resources hadn't been wasted on chasing down a mythological psychological cause, 20thC style biological investigation may not have advanced understanding of ME/CFS very far, or even at all. We can see from the circles that a number of US researchers are going in, that at best they are working slowly through a myriad of possibilities, driven by hunches rather than any clear science. That of course may eventually yield something helpful beyond a list of 'dead ends' but as things stand it is an approach that looks more like doing the lottery than a scheme of work with a focused end.
There's no guarantee of course but genetic studies have the potential to cut through the large numbers and identify where all forms of investigation can usefully concentrate. With something as heterogeneous as ME/CFS we probably shouldn't expect DecodeME to give a single 'answer' but there's a good chance that it will identify where further resources should be applied, short cutting the test tube work by years, even decades.
At this point, it has to be accepted that ME/CFS is a very difficult problem. Even if resources hadn't been wasted on chasing down a mythological psychological cause, 20thC style biological investigation may not have advanced understanding of ME/CFS very far, or even at all. We can see from the circles that a number of US researchers are going in, that at best they are working slowly through a myriad of possibilities, driven by hunches rather than any clear science. That of course may eventually yield something helpful beyond a list of 'dead ends' but as things stand it is an approach that looks more like doing the lottery than a scheme of work with a focused end.
There's no guarantee of course but genetic studies have the potential to cut through the large numbers and identify where all forms of investigation can usefully concentrate. With something as heterogeneous as ME/CFS we probably shouldn't expect DecodeME to give a single 'answer' but there's a good chance that it will identify where further resources should be applied, short cutting the test tube work by years, even decades.
Costs have been falling rapidly and it's only in the last few years that a study of this size would have been affordable, even if the whole community came together. Most people probably remember that there was a proposal by Esther Crawely a few years ago. That was the right time, but it wasn't funded (and many PwME were relieved, given her track record on research methodology).I ask myself why ME/CFS researchers didnt do such a study already long time ago when there is a solid chance that it show us right direction. I know that it´s probably the question of money but I think if we put all our community together we could find money for such a study already long time ago.
https://register-of-charities.charitycommission.gov.uk/charity-search/-/charity-details/1036419AfME are advertising for a Research Director.
Research Director
Hours of work: Full-time, 35hrs a week
Location: Home-based or Keynsham office
Salary: £50,000
I'd rather ME organisations paid a fair wage and got the right people in for the job, people with qualifications and experience, and not relying on people who can afford to donate their time.https://register-of-charities.charitycommission.gov.uk/charity-search/-/charity-details/1036419
They make £1,192,127 but waste a lot in employees. I'd rather give my money to Invest In ME, which is run by volunteers.
If you mean a large scale GWAS project, in ME/CFS, then yes, these have been carried out in a number of other, higher profile, illnesses - which does beg the question why they weren't funded earlier ---- thankfully, the expert MRC group Jonathan sat on, identified the opportunity and Chris Ponting was keen to help --- Chis mentioned his long standing friendship with Simon, on something I listened to/read.Also begs the question, why hasn’t this been done sooner, if such a breakthrough was so desperately needed.