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Impressive that a preprint of a scientific paper is getting the media coverage it is both in Scotland and nationally.

Currently watching, it is an excellent piece so far, with Chris explaining the study results to a person with ME/CFS

The UK MEA says on its Facebook page:

Decode ME is a headline item in Channel 4 main 7pm evening news. It looks like it will be the second item.

Though there are now criteria for diagnosing MS after just one episode, if and only if there is objective evidence such as an MRI, in general the diagnosis is only made after three or more neurological episodes. Also, because it can impact a range of neurological locations, in these very early...

I wonder if we should have a members only thread, given we will have all sorts of reactions brewing?

Here is the actual alert from the HSA, asking people to stay tick aware this summer. It has been picked up by a number of media outlets. Although useful information that people should be aware of, are we heading into the news Silly Season?

[each time I glance at the title on the new threads list I read it as ‘extraterrestrial symptoms’]

I must admit for several years, I interpreted Hilda’s apparent willingness to indulge or even seemingly cover for Cochrane’s delays and obfuscation as indicating that she regarded Cochrane’s game playing and internal politicking as more important than good science. However, her subsequent...

That makes sense, I guess we just got lucky with NICE, though even then the current ME/CFS guidelines involved a compromise in favour of the existing specialist services. We definitely need to be clear what we want rather than just asking for something else to happen.

The worry is that ‘they’ just ask the current service providers who advocate for more of the same.

Wasn’t she part of the Board (?) meeting that reportedly made the formal decision to backtrack on the new review and endorse the old Larun et al disaster?

I am concerned that by focusing on a small number of individual activities we introduce bias. I suspect it is a common response in individuals undertaking GET in a clinic setting, to reduce overall activity in order to focus on the specific clinician endorsed activities that they believe will...

If there was a list of preferred terms, would a voice activated recording device work. Then you could just say, things like ‘bed, feel very bad’, ‘chair, feel OK’, for later computer analysis, in conjunction with physical activity monitoring. This would mean the person recording would just have...

I was wondering if the Sussex and Kent group provided the patient input that BACME cite in their output. I seem to recollect that Prof Crawley, in addition to her own paediatric parents group, used this group to provide patient/carer input to her research in relation to adults, though I may be...

I was wondering if it was the right time to start a thread to establish if we have any consensus on what is our preferred model of service delivery until such time as there is an identified treatment. (I guess ignoring the fact that in the UK at least there are likely to be few if any staff...

If the effect was the same regardless of condition, does that suggest the change see was not any impact on the underlying condition but an artefact of the studies, eg experimental bias, etc.

Within traditional Buddhist meditation practice, the source of modern mindfulness techniques, using mindfulness practices to achieve personal growth might be seen as requiring years or even decades, not just a handful of sessions. Now funding for a ten year study would keep the researchers...

Looking at the article I don’t seem to find what criteria were used for diagnosing ME/CFS (or CFS/ME as the authors called it). I am a bit slow on the up take today, but were they just relying on treating doctors to use their own choice of criteria when diagnosing? I was wondering about the...

Why is the failure to elucidate/identify a physiological mechanism proof of a psychological mechanism, when failure to demonstrate a psychological mechanism is not proof of a physiological one?