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Will the DecodeME X chromosome analysis show us if this is the case?

That the pathology is in the bone marrow. Perhaps I'm misremembering.

Hasn't Prusty been thinking along these lines? Also of course Fluge and Mella must be because bone marrow is where LLPCs live.

I just feel quite worried because this may be a big opportunity to change things. If they are actually successful with this legal challenge and ask for 'specialist care' without being more specific then BACME will just fuck us all over again, and now none of us can complain because 'it's what we...

So much money and patient time and hope was put into this study. The NIH fobbed off patients for years because this study was going to move the field forward and provide answers. And it was such underhanded, patronising bullshit. A deliberate exercise in foot dragging, and then they scold us...

I haven't donated for this precise reason. It isn't that hard to say 'physician led services with specialist nurses and home visits' is it?

This is the thing! I have friends who are almost certainly autistic and struggling because of it who literally cannot get an assessment because there is basically no NHS provision. And being diagnosed later in life for me (late 20s) meant that by the time I was diagnosed I had already developed...

Presumably they will have to look for finding see if they are there replicable though. So I guess I'd like more transparency on what findings they are trying to replicate. It would be a shame for them not to look for a really important/interesting finding.

This woman is incredibly dangerous. I don't think its a coincidence that her and Wessely are being elevated as the naysayers of 'overdiagnosis' now. It's quite frightening as an autistic person that we seem to be in the crosshairs both from the far right (RFK, Farage) and centre (Wessely, S...

Are there any important findings we think they should try to replicate in this study? To me this seems like a very expensive fishing expedition but perhaps there is something positive that will come from it.

Yes I think Nath has essentially been played by Wallitt and the interroception crew into legitimising their bullshit. This seems to be a disturbingly common thing in research and academia. Take over a rival discipline and remodel it in your image like an academic cuckoo . Happened to my...

Wow that is absolutely meaningless obscurantist babble.

Wallitt:

So they received a critical response from experts in post viral illness a month after the intermural study came out and sat on it for a year and a half. Totally not suspicious at all...

Can you explain what you mean by common target in this context?

Do you mean this thread? That sounds like a good idea. Maybe this discussion should migrate over to that thread, where we could all discuss what the 'target' project(s) should be and how to facilitate this.

My understanding is that PRIME is partly about bringing in experts in the genes implicated in DecodeME. So they can investigate those areas. Of course we don't know for sure that the imputed genes are the ones involved but I don't think that means we need to sit around for two or three years...

Does there need to be a study that is 'proof of concept' in terms of this fundraising model? I.e. find an important/well designed proposal floating around that hasn't been funded and fundraise for it through a charity? Even better if its one by someone newer to the field in a way. Then we can...

Oh excellent I knew about the genetic and questionaire data but not about the contacting participants part (I thought that was just for future Edinburgh studies).

In terms of patient selection surely the best place for a researcher to start would be by contacting DecodeME participants local to their institution? And then screening them more thoroughly themselves? If they were somehow aligned with Edinburgh (e.g. through PRIME) then perhaps they could...