Search results

This makes the Cochrane 2019 review much better than it is. It's seriously flawed. This in particular is seriously harmful misinformation. GET is bad for everyone regardless of severity levels. We all get PEM and can detriorate long term with GET.

This whole scam of resilience training for employees is a dreadful way of companies putting the blame on victims of workplace bullying and unreasonable work demands. It's the employers and bosses who need to behave better towards their employees and provide good working conditions and environments.

I'll ask in the committee and PM you.

If I need to rest after doing an activity and delay doing other activities until rested, but I can still manage to do it once or a few times a day, I would score that as 4, or as a 3 if it significantly reduces what else I can do that day.

I have just done it online. I think it's a really excellent way of assessing functional capacity. My scores for each section reflect my own assessment of where my greatest difficulties lie, and it's interesting to see how closely or not I fit with the graph at the end showing ranges of scores...

In creating Cochrane, they have somehow managed to create a beaurocratic monster that swallows up anything important in endless meetings, and red tape rule books that don't allow them to actually make sensible decisions for the good of people's health. It appears that somewhere in their...

We're in a bit of a lull with this at the moment, but work on it hasn't stopped altogether. From my point of view, we're waiting for a long list of things to happen: The IAG (Independent Advisory Group to the new review process) 1. Hilda's next update on progress of the IAG and review. IAG...

In response to the question of whether the public will believe our side when it's told as patients against eminent doctors, I think that's why it would need to be told as equally and more eminent doctors and scientists against a small cabal of pseudo-eminent doctors in collusion with government...

I have been thinking again about this. You would be able to avoid defamation issues by quoting their own words. They were quite open about their views of what causes ME/CFS and their letters to the DWP persuading them to treat us as non deserving of benefits etc are all documented as revealed to...

I do realise that. I'm aware my suggestion is wishful thinking and fantasy. But then this whole discussion is wishful thinking and fantasy. It's not going to happen just because we wish it to.

I think that is the sort of thing that could be a good hook for a drama. Also the fact that Peter White and others knew from their own research that people with ME/CFS that had a post viral genesis and PEM were made sicker by exercise, yet they deliberately lumped us in with people with...

A naturally occurring variant of SHLP2 is a protective factor in Parkinson’s disease Su-Jeong Kim et al. https://www.nature.com/articles/s41380-023-02344-0 Abstract Mitochondrial DNA single nucleotide polymorphisms (mtSNPs) have been associated with a reduced risk of developing Parkinson’s...

I took it to mean the gender roles commonly occurring in couples meaning that people with the female gender role in the household had more demands on them such as child care and housekeeping tasks, and therefore less ability to rest properly when they had Covid.

Maybe not being able to rest sufficiently contributes to the differences seen. In hospital the sexes get the same amount of rest.

That's tough to deal with in a group, Wyva. I guess the person sincerely believes what they are saying, having been misled by therapists or people who want to believe they have cured themselves rather than being lucky. That shows once again how important it is that trials of this sort of stuff...

A very good article telling it like it is for so many with Long Covid and ME/CFS. It's important that records are being made of what life is really like for many so sick, and she acknowledges that she is not in the worst situation as she has a husband who cares for her and a home. The reality of...

Idiotic.

Good article, well done.

I have just watched Ron Davis's talk. The section about ME/CFS and MS is from 3.06.39 to 3.09.35. The first slide in this 3 minute section does indeed say at the bottom "It appears that about 50% patients have both MS and ME/CFS". He then goes on with a couple more slides and explanation of the...

Can you clarify what you mean by 'this stuff'?