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Ok but your initial comment talked about moving the field along which to me meant scientific progress. And SequenceME has much better chance of doing that than a replication study.

But surely that would clarify none of the uncertainty about what genes the SNPs point towards and miss all of the same stuff that all GWAS miss, the stuff that WGS picks up. Not that it wouldn't be important.

Above are the two exchanges I found earlier. Neither were conclusive If anyone knows whether UK labs are eligible for German Nationa Decade funding please help clarify the situation!

Not mixing it up with EU funding. I have only found a couple of exchanges where we discussed the possibility but it doesn't seem to have been concluded one way or the other, apart from one person quoting the national decade people as saying international collaboration was vital. I can't insert...

What could this mean? And would this effect be exclusive to lc or could this theoretically be possible in MECFS too. I know HLA DQ came up in DecodeME. I feel like we have heard about DR before too.

That's what I was told iirc. But I could be misremembering.

Funding is not exclusive to Germany. Yes, against common sense and whats best for patients! Best case would be they do this and contribute to SequenceME imo.

I really wish they would just give the money to SequenceME. Why waste time setting up their own inferior study when such a well designed study is ready to go in months and seeking funding?

Reminds me of when I was mild and undiagnosed

Follow up to this

Has a study like this been done in MECFS?

Where would you suggest they focus their investigations?

That delay makes me wonder what's going on with SequenceME funding we don't know about yet... What do we reckon of the chances of EU Horizon funding for Sequence? This project sounds interesting, I hope it covers more than just the usual microbiome stuff.

That is a lot of funding. Good to see that kind of money in the field. Have to say though, I haven't been that impressed with the work coming out of the UEA so far. As a totally irrelevant side note the UEA has (or at least had) a great music venue and I saw all kinds of bands there as a teenager.

I got a lecture about how children with ME with overprotective mothers come in with crutches and wheelchairs from the doctor who diagnosed me with 'CFS.' The implication was 'you don't want to be like that' which is a powerful tool of manipulation to a 30 year old man.

Well, that's another way to throw patients under the bus. Oh you see your symptoms are because you're so privileged, you're not in a war zone (as far as I'm aware there's no war in India or Nigeria? Maybe they should have studied Sudan or Gaza). They acknowledged that there were huge cultural...

A huge amount of what led to me worsening my condition was this sort of thing rather than any kind of structured 'treatment'.

Whether we call it MCAS or think its a part of MECFS that doesn't need to be attributed to another condition, this is a concern I have, because I know severe people with very bad allergic symtoms who rely on those meds. I personally wouldn't want my ivabradine taken away from me either. I don't...

Alas

It's actually quite enraging just how much better it is than anything we're actually offered.