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https://meassociation.org.uk/2024/09/job-opportunity-freelance-press-officer/ ME Association is advertising for a freelance press officer. Could be suited to someone with (milder) ME given the expected hours/month.

A 'traditional' model of disability has people needing a wheelchair, and those who are really ill needing a bed right away. I think we with dynamic disabilities and energy-limiting conditions once again fall between the cracks. There are innumerable ways in which healthcare settings could be...

benefitsandwork.co.uk has just published a new guide for those claiming PIP for ME/CFS. The full guide is only available to paid members, but the page below gives a flavour of what is in the guide. The linked page also includes some interesting stats on PIP claims by those with a primary...

Yeah, this is not good. It's about time we the community cut ties to these cranks.

It's great to see mathematicians getting involved, but it seems the first author, a post-doc, might only be tangentially involved with ME work at Edinburgh. On first look this seems like high-quality work. Also it's weird seeing a paper on ME typeset in LaTeX.

Monica Greco at Goldsmiths is a potential project lead. She has coauthored with Sharpe on BPS topics. It could be that she's supervising this summer project. Edit: Looks like she has moved to the University of Bath. So perhaps she's not the contact at Goldsmiths, although she's listed as a...

Raelan is in the states. What I assume has happened is someone has had an idea for this project and they've picked her channel because it's arguably the biggest. But major conflicts of interest. She herself has all sorts of ties to different programmes including at least a dozen brain retraining...

I don't have the energy to retype all this. So here's a thread about an undergraduate research internship project at Goldsmiths (University of London). Possible links to BPS researchers, Recovery Norge, etc—major red flags...

https://www.linkedin.com/in/miranda-dafoe-760b47184 Seems she was working at the Stanford lab for a year. Perhaps a family member? Now doing a nursing degree, according to LinkedIn.

Ron Davis still seems to be claiming that 50% of us have MS as well as ME. :banghead:

I get the impression the work on ME/CFS at Stanford is not particuarly well coordinated. I don't see research themes emerging. Are they trying to do to much at once? The abstract for this paper does not give me faith, and people here have rightly pointed out several errors already.

There are some websites that have multiple forums for different conditions. patient.info is one. The tinnitus forum I visit is based at https://healthunlocked.com/ so you could check there too.

This looks like complete overkill. You'd be better doing some basic stats—such as time series analysis—on activity data from apps like Visible or from activity trackers.

They've really done an excellent job of leaving the door ajar to a psychogenic interpretation of their findings/conclusions, haven't they? Particularly in the NIH press release. I actually don't mind the idea that the brain is stuck in some sort of loop / state due to the immune system going...

Why not also "Fatigue is the most significant predictor of depression". Am I missing something?

Well, at least it doesn't mention ME/CFS. We need to distance ourselves from fringe figures like Myhill.

I refused to complete these idiotic questionnaires on the grounds that (i) they can't distinguish between ME symptoms and symptoms of depression and/or anxiety, and (ii) I know they are useless and used carelessly as evidence of improvement. And yes, doing this at the start of every session was...

Dunno, just seems a bit Outlaw Medicine, Dallas Buyers Club, isn't it?

Imagine being well enough to even attempt to get to a spinning session.

Yep, possibly. I have read up on that. I do think I have some sort of fascial problem. I have some very small tender areas in particular muscles. But otherwise I don't have that much overall pain.