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I've been receiving their email updates ever since I was diagnosed in 1999 – for years it was one of very few sources of news about research and developments in ME.

The data from these studies are incredibly valuable, but I'm not sure we know enough yet to recommend repeating them, specially given the potential for patient harm. I'd welcome it if researchers saw specific phenomena occurring in ex vivo experiments, though, and there was a need for...

"Further research is needed to better understand the role of pacing in ME/CFS and potential adverse responses to CBT and GET." I don't understand why we should use precious resources for the latter (my bolding). Doctors often prescribe or recommend therapies that don't work or cause unwanted...

Just tried that; the article loads momentarily, and then is replaced by the sign-in screen. Pressing 'reader view' on Safari (which often gets around article sign-ins, especially those where there is no payment required) results in a screen showing the title of the article but no text. I think...

I guess it depends how you look at it. This phenomenon affects me (and probably most ME patients) all of the time, so the 50% rule automatically applies anyway. The rule may be irrelevant in any case, I was just trying to think of what general principles are required. I made a huge batch of...

Interesting – I tried pasting the link into a private browsing window in Safari, and got this: Then repeated exactly the same process (literally pasting the same copied link into a new window), and it worked. Too brain-fogged to think about why, but it's worth trying it more than once!

I've just checked again, and the link in @Helene's original post now works differently. I'd have to create a free account or log in via Facebook or Google to read the article; when I first looked at it earlier today, I was able to access it directly. :confused:

More thoughts – or, more accurately, questions. We've established that it's fiendishly difficult to assess our level of function due to the fact that it varies from hour to hour and day to day, and over longer cycles such as months and years. Plus, of course, our success or otherwise in...

Couple of thoughts. 1) Should we use 'impairment' as well as – or instead of – 'disability'? Without getting into a long and technical discussion about usage, 'disability' is usually taken to mean socially-imposed barriers, and 'impairment' to indicate an individual's physical, sensory, and...

I too got my first ever result direct from the study today! The previous system was that if you tested positive, you would be contacted by your GP; if you didn't hear anything, you could assume it was negative. It seemed a bit slack to me, so after the first few tests I rang the surgery to...

Interesting! My perception of usage in the UK is that 'peeps' often means members of an identifiable group, without implying that they necessarily know or are in direct contact with each another. The ME community's a good example.

It's interesting they appear to suggest that increased circulating levels of kynurenine could be linked to central fatigue, when the OMF trial is exploring the possibility of supplementing it...the objectives of the two studies may be different, though (I'm way out of my depth!)

This is quite common with mailing lists. Certain mail servers can be set to bounce incoming messages that are tagged as spam – and some users may not even be aware that the setting exists – so it's not always the case that people have actually changed their addresses. At some point, might it be...

"We want the satisfaction of closure." This really gets to the heart of attitudes towards people with ME. Lovely article by Nadine, thank you so much for posting.

To add to @Mike Dean's post, there's also one from the Grauniad: "Lasting symptoms may not be down to a single syndrome but several different ones" https://www.theguardian.com/world/2020/oct/15/long-covid-what-we-know-so-far

:rofl::rofl:

I think it's often just that they've tried it and found that it did nothing, or made them worse. Personally, the tricyclics I've tried (including amitriptyline at everything from 5mg to 30mg) caused significant depersonalisation, which led to feelings of depression. I never got past that stage...

The article above appears to have been translated through half a dozen languages before arriving at the English! :rofl: ...He added: “It’s not a title-tattle, it’s a baldardash and nonsense. I can tell you I’m less than a few butcher dogs."... ...Furthermore, young people tend to report taller...

Indeed. Instead, it's full of tin-hat conspiracy theories. Perhaps if we didn't have leaders whose actions and decision-making have left the satirists struggling for material, the rest of us might be able to behave more rationally...

Similar thing has happened where I live. Number of cases in my local area stands, as it has done for months, at 0 - 3 per week in a population of about 7,500. In one of the student areas, they're at 750+ per week within a similar-sized population. Some students* are refusing to stay in and...