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I'm noting the different responses from forum members to this questionnaire, which is a PROM, and the MEA-funded work of Sarah Tyson's team. The developers of FUNCAP consulted widely and meaningfully and with humility, and adapted their product as a result of the feedback. PEM is central, with...

I'm pretty sure though that the orthostatic intolerance in my children and I started at the same time as all the other symptoms. And so that was at a stage when we were continuing to try to function as normal, doing sport and being active. It's a long time ago now, and I guess there must have...

Some posts have been moved to a new thread: Annual reviews for ME/CFS

You can help here: Norwegian guidelines in development: help with a literature search

Welcome to the forum, it's great to have you here. That's exciting news and good that the user organisations have a seat at the table. Yes. Although, I worked with a regional health authority that made guidance to doctors when they were faced with a person complaining of exhaustion/tiredness...

I'm so sorry about your Dad's illnesses. They do seem like they might be a clue as to what happened to you. ITP - is that immune thrombocytopenia?

Thanks @Wyva, so we have a whole batch of papers on poorly conceived studies to look forward to. When no cognitive dysfunction shows up, I often wonder about the selection of the participants. I think we might have expected some worse performance on more of the named tests e.g. the trail making...

Click on the tag at the top left of the thread - 'Mastroianni' - for more content by Adam Mastroianni e.g. The Rise and Fall of Peer Review, 2022, Mastroianni [Preprint] Things could be better, 2022, Mastroianni and Ludwin-Peery

What then do they think are the problems? Society's belief that objectively measurable disorders are more real and worthy than other disorders. Negative stereotypes Actions to stigmatise - the things clinicians do and say Discriminatory outcomes So, rather than investigating if the...

And that's the end of that possible source of stigma as far as the authors are concerned - when actually power differences and the magnification of them by a 'functional' diagnosis are the heart of the problem. If the authors are reading this - maybe look again at what you so readily dismissed...

If only they put the same effort applied to acronyms to examining the evidence for the views they hold. Someone has been paying multiple PhD students to work on the problem of marketing psychosomatic medicine better. Oh, but it is very hard to keep all those acronyms straight. Just a paragraph...

1. Create the stigma 2. Categorise the stigma There's definitely a sense of hand-wringing from a number of these papers on FND stigma. "Here we are, trying to help these difficult patients that no one else wants, and they aren't appreciating just how insightful our help is. What can we tweak...

Hopefully they will consider the obvious issue with this, that activity correlates with the weather. A sunny day, especially in winter, is likely to have someone with mild or moderate ME/CFS being more active, getting outside. Then, they have the pay back of PEM, and, because weather reverts to...

The bit I have read has actually been pretty good, aside from a belief that CBT has a material impact on the disease itself. The conclusion in the abstract isn't bad. Here's some commentary on some of those sweet secondary benefits of ME/CFS:

Article about the findings Blue Light May Not Be Keeping You Awake After All A new study shows that the brightness of light matters more than its color. KEY POINTS Researchers exposed healthy subjects to blue, yellow, and white light for an hour before bed. The color of light made no...

https://www.nature.com/articles/s41562-023-01791-7 Abstract Evening exposure to short-wavelength light can affect the circadian clock, sleep and alertness. Intrinsically photosensitive retinal ganglion cells expressing melanopsin are thought to be the primary drivers of these effects. Whether...

A couple of days ago I heard on the radio someone promoting their book about how exercise was the solution to Long Concussion. Graded exercise and graded cognitive effort. Pushing through symptoms to get to recovery. Increased symptoms were ok and even desirable up to a two points on a 1 to...

I was wondering how on earth stupid conclusions like the one I discussed above get through peer review and the journal editorial controls and thought 'maybe it was published in one of those low quality journals'. But no, it was Nature...