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While reading up on glutumate and a drug called Eglumetad I came across this useful list. There’s a number here which act on dopamine receptors https://en.wikipedia.org/wiki/List_of_investigational_antipsychotics I or someone else probably need to go through the list we already have and do a...

Interesting @fst and thanks @ScoutB I remember there have been various studies and around adrenergic receptors, with mixed evidence and mixed views of those studies, but I do wonder if when we eventually know what’s causing me/cfs some of these will make more sense, but perhaps in a different...

We have no evidence of any of this do we? The Wikipedia page on Clonidine has this to say And also There’s an extensive pharmacology section including this There’s more potentially useful detail on how it dies this on the linked page. So of it were to help people in some way it could be...

One that has cropped up in my reading is glutamate. @SNT Gatchaman covered some papers nicely in this thread and I’ll drop some others later. I decided to look at all glutamate receptor genes using my promoters snd enhancers script. It’s become a quick way of getting links to locations in...

I agree. I started a thread here, maybe a bit too specific but I shared there’s some tips. Is this the sort if thing people were thinking? If so it would be great if others did the same. Or if different maybe we need a new thread?

A thread on speculation and questions. To throw some ideas around and see if we can learn anything or find more questions. Could we be looking at/for a shared system within the immune and nervous systems? Something which is either known and clearly reused or perhaps somewhere where biology is...

I’m in a similar position to you I think @SugarSquared its something my views have changed on. I hadn’t seen that quote before (or had but forgot it!) but really like it. Thanks for sharing!

Absolutely agree. It’s a tricky balance I guess. You’ll hopefully be pleased to see this, I was, having the data as open as possible so people can check, interrogate and reuse is more important to me than sharing the idea in advance. At least in our current non utopian world :)

The document also makes it clear that token PPI will be seen negatively. Just to return to the point I made previously, I like that things are a bit loose here. If they’re too tight things could be a checkbox exercise or sanitised. The fact there is disagreement here, as there always is, shows...

If my identity were to be made public I wouldn’t get involved with any project in any capacity. The sort of targeting people get, either by other individuals who disagree with something or indeed the way in which governments use information to decide things like eligibility for benefits is well...

It’s really tricky. I know many of us find reviews useful to try to help learn things and they seem referenced a lot in other papers and by LLMs. But knowing if they’re a good review or not can be harder to judge for many of us. Some are and there do seem to be authors or journals ai ing to do a...

Another thought just occurred to me, throwing the question back a little, what do people here think patient participation could mean? What is your idea of good patient participation? There’s no right answer I think but maybe the community can help provide ideas that researchers may read and take...

I’d hope not. To me it seems like a nice mix of requiring some basics any project would need (a solid proposal from a researcher, ethics approval, etc) with other requirements we’d all want (good diagnostic criteria for me/cfs, inclusion of PEM, open data) and actual patients on the panel...

It’s a lot to manage, these things are tough for anyone, extra tough for those of us with me/cfs. Sending support and :hug: @Binkie4

Great news. Very cool to see and looking forward to seeing what projects get funded and hopefully some new faces and interesting discussions on the forum!

Interesting thoughts @Utsikt and good points Welcome to the forum @Jacob Deasy good to have you join us and look forward to your input and expertise.

Second paper for LC it’s popped up in (see the tag or here for the other) but nothing of significance showed up in DecodeME (here’s the locuszoom for the region with the genecards info on regulatory elements all in that area)

But they’ll do that anyway won’t they? We’ve seen them do so repeatedly. And if he said exercise doesn’t help anyone it would give them ammunition there and swathes of healthcare professionals may not listen to anything else he said. I agree that it would probably have been better not to touch...

Nice to see someone looking at the negative effects on outcomes of the beliefs of healthcare professionals rather than patients for a change!

Sure @Jonathan Edwards but we must look at the context of the article and audience. Should Chris be going out to change an entire model of healthcare dominant in the NHS (and more widely) and risk being dismissed as ‘anti exercise’ or focus on making a point important to me/cfs. Maybe it would...