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There wasn't a full round of intros as time was tight (there was a start whilst waiting for Javid) so I'm not sure exactly who was there. What I can say is everyone who spoke was engaged and positive in looking for ways to improve things. In terms of the form of the meeting it was a round...

I think change will come. I get the impression that Javid is committed to this and understands the problem and also people in the funding bodies are picking up the issues and it is clear that something needs to be done. And in that they understand the importance of listening to patients as well...

Helping scientists communicate effectively with the media is done through media training. Things like how to give effective sound bites that journalists will pick up on and how to explain things in a succinct and understandable way. Sometimes its useful to have a PR person explain what issues...

I think even what people want to get out of a service can be really important and putting some of the different things that could be offered and asking what is most important (and are there other things that would be good). The basic service and what can be offered is defined by the NICE...

I really think that patients should be consulted in service specifications. What are patients looking for from a service, what would be most helpful etc. A survey of patients would be good. I have a suspicion that one of the most important things a service could do is help with benefits - but...

The figures could just suggest that but with the numbers going up for those who have been ill for more than a year I was wondering what that would say about ME (assuming the symptoms are the same). I think the economic inactivity does suggest an expectation of long term illness. The figures...

Thanks Andy - I got the picture from the Guardian The number growth is massive. One thing I wonder is if this is a massive rise in Long Covid and that a large number of people with long covid basically have ME what does that say about different triggers, genetics etc. Does it indicate something...

This looks like an interesting graph from the ONS (I think the labour survery) showing a massive increase in people who are economically inactive I would assume largely due to long covid

That sounds concerning. The ONS are a reliable organization in terms of producing stats. The figures for children are smaller (but from the tweets seem to be rising quicker than adults) of course it is also a function of those who get covid. These are from a table which does seem to have an...

Interesting comments on the latest data here A worrying number of children as well. 31,000 children being ill for more than a year and a disproportionate rise in the number of children with long covid

I think you have forgotten an option 5) keep claiming they are doing a new review whilst keeping the old one up. Publish an update in 2081 saying it is almost complete.

Something I've wondered is if fatigue is a possible early sign of cancer then could people get diagnosed with CFS (due to too little investigation) and then only a cancer diagnosis when things get worse. This could skew figures. I could imagine that happening in the UK (especially with the push...

Talking to one academic who was pre-recording his lectures during lockdown he said prerecording took much more time as he would keep recording pieces to get it right rather then simply correct himself in a way he would with a live lecture/webinar. I do wonder if webinars and recordings of them...

I suspect there is something in fatigue but that fatigue is not fatigue but a range of different symptoms that are harder to express including PEM, brain fog etc (and also the energy use it requires to cause these symptoms. I wonder if comparing 'fatigue' in more detail across multiple diseases...

I suspect that an approach that looks at variation over time will be one of the ways that ME may become understood. Its interesting that Jason is taking this approach. I suspect there is also value in looking at patient changes over time and seeing what corrolates with severity (I think there...

With the criteria it is important that papers are clear in what they are studying (and which groups the research applies to). At times this information needs to be dug out from a paper rather than being obvious. It would also be good to have justifications for choosing different criteria in the...

If I understand correctly they have sent it for comment to those who attended the round table and i believe (but not sure) that they have been getting input from some of the charities in terms of the implementation statement.

I wasn't even thinking about a biomarker but something that could help test if there is evidence that something could be wrong in this area.

I'm not sure I understand what tubulin is doing but if something is going wrong in production (or log jam in tubulin servicing) as you put it then would there be any signals that could be measured. For example, are there particular proteins produced during the process that would change. Or...

There is something I don't get here. The effort is to raise 25 or 35k (not sure which) but this is to cover part time salary and an RA (or help cover) so has funding from another source been found for the rest of the money?