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Nope. I’m grumpily disengaged

Sigh From inside it might look and feel very busy, from the outside it just looks like one web page published 14 months ago. Just a bit of communication would have avoided that disconnect. Sorry if that seems grumpy but soon has a very elastic timescale.

Maybe @Hilda Bastian will take the opportunity of this event about evidence and uncertainty to give headlines from the much awaited progress report on the plans for the independent advisory group to engage with stakeholders on exercise in ME/CFS.

Yes last summer one of my relatives mentioned doing the covid symptom app I said I would be saying yes to a lot of them every day anyway so I still wouldn’t know if I had it or not

:hug: I think unless they are around you in the same house for several days they aren’t going to get much insight some people haven’t got much empathy anyway sometimes if people are too blunt in expressing their opinions but are able to take feedback you can tell them how it made you feel...

Brilliant work :thumbup:

It is a very convoluted sentence - the passive at the start avoids making it explicit that he’s saying that PWME ‘felt’ that psychologists/therapists implied that ME/CFS involves irrational thoughts...... whereas he only has to look at what the proponents of CBT/GET say to see it is out there...

It’s a miracle!

First thing I look for on a website is the about us page. You can’t take anything seriously that isn’t transparent

I had Pfizer I didn’t have any issues other than sore arm and normal level of PEM from an early start

There doesn’t seem to be any information on that website about the organisation, how it is funded

I did CFS management course only 5 years ago. It had much content that on the face of itseems to be compatible with pacing. When I was going through it I though I was avoiding GET elements. On reflection there was an underlying assumption of increasing activity. Not taking account of the fact...

A progress report allegedly - see the Twitter exchange between Hilda B and Robert posted further up this thread

Spot on George. Back of the net.

Will be interesting to eventually see progress report and whether there is actually any credible reason other than politics for this palaver

Ah ok couldn’t work it out

@joycemartino what is OA

You can unsubscribe though so you don’t have to receive anything at all.

In the absence of communication people naturally start to draw their own conclusions about Cochrane’s position. Based on the little we know and the approach taken so far it appears to me that engagement with people with ME is not considered to be of any importance in this process. i retain...

Hi Robert given it is now nearly 2 weeks since you asked this question maybe it would be worth asking on Twitter because other questions asked to @Hilda Bastian there are getting replies.