Although this is concerning given their desire not to have criticisim on a forum. We in part exist an independant organization so that patients...
I don't think patient members are representing patients rather they are individuals or groups that are bringing the patient experience to the...
The PAG is a patient advisory group for the MERC (renamed from the CMRC). I am a member of the group and that is how I got an invite to the round...
Some have no role but cover specialities that may be of interest. I think that is part of the point in terms of getting research going we need to...
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...
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...
Helping scientists communicate effectively with the media is done through media training. Things like how to give effective sound bites that...
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...
I really think that patients should be consulted in service specifications. What are patients looking for from a service, what would be most...
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...
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...
This looks like an interesting graph from the ONS (I think the labour survery) showing a massive increase in people who are economically inactive...
That sounds concerning. The ONS are a reliable organization in terms of producing stats. The figures for children are smaller (but from the...
Interesting comments on the latest data here [MEDIA] A worrying number of children as well. 31,000 children being ill for more than a year and a...
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...
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...
Talking to one academic who was pre-recording his lectures during lockdown he said prerecording took much more time as he would keep recording...
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...
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...
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