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I agree it's a lot of money. But individuals often raise hundreds of thousands on GoFundMe. A series of coordinated campaigns may raise this amount within a relevant timeframe with all the patients that are ill and their relatives/etc.

Re: SequenceME funding, if it is not funded by various people such as NIHR, it seems the funds could be raised by crowdfunding if the community understands how important it is (including people with long covid). People regularly raise large sums of money this way pretty quickly. I realize this...

Is what you are saying here that there needs to be more evidence to persuade people? What would the strategy be at that point? Would we be having the same conversation? I am having trouble understanding what it would take to move interest or opinion from medics, and although I agree with it...

The team are making their data available for further study to other teams who would like to use it (this may already be happening, I don't know)

Even if this approach was followed (and someone has pointed out that this has been happening with no success), why not do both? Additionally, seems unwise not to do our best to uncover the mechanism of the disease to narrow down what treatments to trial?

Why do you say that in particular? The team have laid out what they hope to achieve and why.

Are these real people or just people with vested interests in the situation? I can't decide if these comments should be moderated or left up so people can see what we are up against.

I mean I guess if people are determined they can just say the parent caused the initial illness that the child has not recovered from? But I don't understand why they are acknowledging that the child is ill in the second case and not the first, really. If they are determined not to "believe in"...

Anecdotally I know of more than one case where a person with ME/CFS partially "recovered" from that and their illness turned into fibromyalgia with a pain presentation basically. Interestingly the one case I am thinking of in particular involves a person where pain medication eg opiates...

Yes, I was thinking the same thing. I was quite taken aback at all the genetic research for "chronic pain" compared to what we have been getting research-wise. I imagine this research looked at quite different cohorts but I am not well enough to read about it right now. Maybe someone who...

Re: chronic pain, how is this defined? What does it mean in the context of genetics results? I see there have been multiple GWAS papers on chronic pain, but it's surprising to me that people with pain of various kinds might have a common signal genetically? There are so many conditions and...

Does anyone have an idea of how long these things usually take? Hopefully this will happen, it seems like such a great project. These results seem. to make it more likely to be funded?

I mean, how do they ascertain that the problem is persisting in a way they couldn't have ascertained before? If you can deny it before it seems you can just continue to deny it somehow.

Is there any update on that GWAS of Long Covid that was not funded iirc? Is that project dead now, or did someone else take it up?

Thank-you. I have been worrying about this all day. I hope we get more info at some point. I wonder what kind of analysis they are doing. (Also I still don't get what is meant by European ancestry vs "more diverse DNA" in this context as don't we all have DNA from all kinds of regions? What is...

I don't remember what I put on the form. It seems it's separated out by objective analysis though according to the figure above? It wouldn't really make sense to rely on what people have put on forms (I never know how to answer these forms)

Thank-you, this makes more sense. I guess it's about removing samples not relevantly similar to the control group after analysing them? Do you (or does anyone) know if this means having one parent who is not "white"/European and one who is basically means you'd be too dissimilar?

Thanks; I would be curious about this because I am a participant and one of my parents did immigrate but one did not. Presumably this means I would be included but I cannot remember what questions I answered. :( I don't remember the questions being asked or what I wrote. I am not sure in...

Sorry, can someone explain the "European ancestry" thing? I am not even sure what this means. Thank-you.

Need to point out these people are conflating self-reports of diagnosis of ME/CFS by a health professional with self-diagnosis of ME/CFS. The impression given is that the patients are claiming self-diagnosis whereas this is not the inclusion criteria. Claims to the contrary are claims that the...