Search results

Anna Aschenbrenner I don't think we have seen a paper on the work that she presented the conference yet (?). That is one to look out for.

I don't think I really understand that. The people with Long Covid were required to go in. Presumably precautions were taken to ensure they didn't get infected with Covid-19 again? It's not as if they already had a disease and it didn't matter if they were exposed to it again - a Covid-19...

The protocol was changed from recruiting people within 6 months of illness onset to, I think, 12 months. I assumed that this was because they were having difficulty recruiting people. Not getting access to a whole lot of newly ill people would rather stymie any effort to prevent LC.

:D (My sentence was poorly written. I'll fix it.)

I'm finding it difficult to reconcile the attitudes to FND expressed here with the good letter written by David Tuller @dave30th and Sarah Tyson (@sarahtyson). https://www.s4me.info/threads/a-new...-saunders-et-al-2023.31323/page-2#post-458988 Some excerpts from that letter: I'm not...

Yes, me too. I rather liked the fibromyalgia mouse model paper. But there were concerns expressed on the forum about its reproducibility.

Yes, exactly. It's probably just a coincidence, but this reduction in the number of points in the scale will definitely help reduce the recognition of any harms caused by over-enthusiastic goal setting by clinicians. Possibly though, no matter how fine the scale, it is difficult for someone...

We have a number of threads on case studies where the proponents of FND did not have too little uncertainty, but way too much. The consequence was that people with debilitating neurological diseases were misdiagnosed and given completely inappropriate care. There was a poor woman who was found...

Authors are: Caroline Barnett 1, Rebecca Davis 2, Claire Mitchell 3, Sarah Tyson 4 Sarah, a member here @sarahtyson, has been given funds by the MEA to develop an assessment toolkit for ME/CFS clinics.

I started out with good intentions, listened to the first one and fell asleep (to be fair the time difference wasn't helpful). But I woke up in time for the afternoon session. I see that there are a few comments on Prusty's talk, which probably wouldn't have warranted a singling out for a...

Thanks MSEspe (I had missed the PEM section) As a brief definition of PEM, that's pretty good. On orthostatic intolerance: Those still seem to miss the boat - throughout most of my illness, I would have answered 'no' to both of those, but I certainly have orthostatic intolerance, and some...

It's a fact that there are wearables that can measure to a reasonable level of accuracy numbers of hours 'sleeping', 'awake but not moving' and 'awake and moving', and daily numbers of steps per day, along with a lot else. Hopefully someone will have the will and capability to do some research...

The chart on the differences in fibronectin in serum between healthy controls and ME/CFS was a bit underwhelming - there's an awful lot of overlap. As Trish says, it was all pretty rushed, so hard to know for sure. Perhaps it's part of the problem, at least for some people, or perhaps it's a...

There's a 'new and improved' version now: The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) patient-reported outcome measure for Long Covid or Post-COVID-19 syndrome, 2022, Sivan

Here's the paper on the original version of the questionnaire: The COVID-19 Yorkshire Rehabilitation Scale (C19-YRS): application and psychometric analysis in a post-COVID-19 syndrome cohort, 2021, O'Connor et al

This doesn't look too bad, as far as it goes. Why it's called the 'rehabilitation scale' when it's really an assessment scale, and we don't have any evidence that anything that the clinics do actually makes a blind bit of difference to illness trajectories, I don't know. I guess it makes the...

The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) patient-reported outcome measure for Long Covid or Post-COVID-19 syndrome, 2022, Sivan There's this one here @Trish, for Long Covid. It seems pretty much ok, as far as a survey of symptoms goes. They missed things like PEM and...

Yes. And all these years later, we have just reviewed a recent study on CBT in Long Covid that used actometers to allocate the participants into groups of low and higher activity, in order to provide them with more personalised instruction on how to reframe their thinking about fatigue and get...

We are past 100 posts in this thread, and I think we are still floundering around trying to understand what the project is aiming to do, and why. What has been described as 'psychometric tests' seems to be the main output and it sounds as though the researchers have already done some...

So, if I'm understanding correctly, a previous infection resulted in the body's recipe for fighting that infection (would that be in the long lived plasma cells in the bone marrow?) Then, when another infection comes along that is similar but different, the body is stuck on the old response and...