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Yeah, AFAIK you need to be an accredited/registered researcher https://www.ukbiobank.ac.uk/use-our-data/apply-for-access/ That’s why the FUMA team can’t share ot like the other datasets https://fuma.ctglab.nl/downloadPage

Agree. It’s disappointing to see and I fear that aspect is likely down to the two charities involved (edit, the 25% ME Group use the term PENE and their materials are cited) . Language more in keeping with DecodeME would be better. Hopefully they can be persuaded on changing this. Looks like...

Movers and Shakers is a podcast about Parkinson’s, this episode is about EJS ACT-PD which is a multi-arm, multi-stage (MAMS) trial platform aimed ay accelerating drug trials for Parkinson’s https://overcast.fm/+ABAG0BrE5so

I have mixed feelings about studies doing this. On the one hand it’s the sort of information I would of course love to have and am very interested in. On the other, it’s as yet unknown if this information is accurate let alone useful, these studies are part of a process to determine this...

Posting the unformatted text (with linebreaks added) from the above post here for those who use dark mode to view the forums (the html formatting means it ends up as black text on a black background)

:rofl: Thanks for that much needed laugh at this The point on cost and returns is definitely one that needs to be made to those commissioning services. And perhaps that it looks like people are trying to game the system with their own measurements of success as we’ve seen done before.

I seem to remember hearing about the idea of this ‘pulses’ at night before, but I forget where.

Yes. Overall it seems like they put a lot of work into trying to say “we do believe it’s a real thing now we’re just trying to help people” to give themselves cover for an approach which is based in rehabilitation and psychology, while lacking any evidence for this beyond their own ‘experience’...

Seeing the approach by BACME take in their recent guide I think reinforces what @Jonathan Edwards has been saying, I’m coming around more to the need to be a bit hardline in this BACME have no evidence for their rehabilitation approach. Their justification is based upon nothing more than their...

This from the section “Overview of the Therapy” sets out their stall. I’m pretty gobsmacked tbh. This is the sort of justification people turn to when they don’t have evidence. “It may not work but it is my right!”

Wow. That chart and defence is quite something. That they’ve gone to such lengths to me is a clear sign of bad faith. This is an ideological and political document not a clinical one. Nice to see them finally admit some of the problems with GET of course! They’re still slipping in early life...

I have a gazillion tabs open with papers and tbh I can’t remember if this was one @jnmaciuch mentioned or something I found while going down a rabbit hole when first getting into this topic. But I couldn’t find it posted so thought it worth sharing as an overview

An emerging role for calcium signalling in innate and autoimmunity via the cGAS-STING axis Mathavarajah, Sabateeshan; Salsman, Jayme; Dellaire, Graham Abstract Type I interferons are effector cytokines essential for the regulation of the innate immunity. A key effector of the type I interferon...

I wish people organising these would give more notice, a few days is not enough notice for most people to write to their MPs and far too short notice for MPs to arrange anyhing. At least it’s a Wednesday so some may be milling about in between sessions but you will just get those with nothing...

The webinar has been rescheduled to Dec 5th at 2pm. Just got an email update from the Zoom invite.

We don’t know if it is causal. I’d certainly not argue against be being so, as it did feel like that to me in some ways. But equally my decline could be explained by a general unrelated decline with those PEM periods as humps within it. So I’m not sure if’s a must have in any explanation...

Nice loop. Could this also end up being in a sort of background low level state and ramped up state too do you think? I’m really interested in potential shifts in GABA and glutamate receptors over time and in response to activity/medications or immune activity. Thanks for sharing the ideas and...

A bit sci-fi you may say, but there’s some interesting merging of ideas here. These things are tiny, but can still generate power They seem to piggyback on immune cells ability to cross the blood brain barrier And use something called click chemistry to (which won the Nobel Prize for...

Also discussed in this article https://arstechnica.com/science/2025/11/tiny-chips-hitch-a-ride-on-immune-cells-to-sites-of-inflammation

A nonsurgical brain implant enabled through a cell–electronics hybrid for focal neuromodulation Abstract Bioelectronic implants for brain stimulation are used to treat brain disorders but require invasive surgery. To provide a noninvasive alternative, we report nonsurgical implants consisting...