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A lot of his reminds me of the papers for ME/CFS showing changes in T cell populations, but me not really understanding what that means. And it possibly just not being very clear what it means. But this stood out A bit more from the discussion section

Indeed. I’d be very interested in what sort of trial design they think would be appropriate. If you don’t think you understand or have a clearly defined treatment group, okay, you need to do a better job there. Just hoping ‘some people get better’ when you give them something but you don’t...

As well as here being no statistically significant change from the intervention it’s unclear exactly what they were trying to measure in the first place… So no control group and no varied involvement in the intervention. The relationship between symptoms and covid-19 let alone long covid...

I think I mentioned this in the thread on the paper on awe. I believe there to be positive aspects or experiencing awe and wonder. I meditate and practice mindfulness. I enjoy all these things. But neither are cures or treatments for illness. They will not cure depression or ME/CFS. When I was...

I obviously understand the point but agree with @Utsikt and have seen exactly the same resistance to hearing about problems in the software industry in my time working in it. It’s common in companies with poor cultures and tbh I think that’s the same in academia, there are good and bad examples...

This discussion and talk of variety and severity of infection at onset brings me back to thinking about variety and severity of ME/CFS, how much noise there would be in milder cases vs more severe and if we have enough severe cases (a few thousand in DecodeME) to usefully get information in...

I’m psychologically flexible to new ideas. Less so of the old tired ones. I would like to understand their questionnaire and methodology more though to be able to better assess what they’ve actually done (paywalls seem a great way to avoid scrutiny). But it does seem to be a well trodden path...

“In this study we find people with broken legs walk less, perhaps we should look at encouraging walking as a novel treatment avenue for broken bones?”

Or run one! What is to stop us doing it ourselves? Data protection/privacy is the main hurdle I think. But designing and even analysing anonymised data are all skills we posses. Patients/we could do some of it ourselves for now? If we agree on something and start tracking our own data. Funcap...

Sure, they’re commonly used. But there is little evidence we understand what long covid is or that animal models are particular useful for transferring these ideas between humans and animals. I’m not discounting their use in understanding disease but I am extremely sceptical of the way in which...

Hamsters… These hamsters may well have something but how do we know they have long covid if we can’t even define what long covid is in humans?

Oh yeah, the comms is awful. But political operations are gonna spin, they can’t help themselves. We’re speaking about a whole group of people here, there’s going to be a range from the wanting to improve things end to the wanting to wash their hands (or at least being completely inept) end.

Could be. I’m confident there are at least some involved, including in government, who want to improve things. I’m less confident that they are up to the scale of the task, but in my mind that is different from wanting to wash their hands of a problem. And I’m very glad we have someone as...

Thanks Adrian. This is all a very useful perspective.

I wonder if there is a good regional distribution of people, if questions outside of our health would be possible. Like experiences of health and social care support. If that could be geographically mapped then we could measure performance of ICBs and local authorities. Assess how good any...

I have mixed feelings on what I’ve seen so far Positive take If this is the start of something there are positive signs. Recognition that there are problems and lack of understanding and talk of foundations shows a desire to improve things and seems to indicate this is only the start of a...

Quite impressive levels of administrative sloppiness. Hardly the most important part of this but it does seem indicative Source

I think that gets too complicated and difficult to measure. That’s one problem with these questionnaires, complexity as a result of trying to design for every possible ‘what if’. How would you measure activity? Most methods seem equally subjective and open to issues. Open to suggestions though...

Yes, very much that. Is there a statistically significant benefit to patients of the intervention. All the other complexities in these questionnaires seem to try to get fine grained or subtle detail or discern if changes are present in different areas or in different groups of people occur or...

Lots of really useful and insightful feedback. Thank you everyone. So maybe something like… - Pick 3 activity descriptors that you feel best describe your current limitations and level of activity, you can choose from FUNCAP55 or write your own. Try to pick a range which represents you best...