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As someone who has gradual onset undiagnosed ME for a decade i wouldn’t be confident that I would have been picked up by this. How many of us had depression or anxiety diagnosis before getting diagnosed with MECFS . I suspect there are a number of undiagnosed, PWME whether completely...

Rx?

The announcement of this review was made early 2020 the timeframe given as 2 years to completion, so early 2022. The first step after the independent advisory group lead appointment was to be setting up the group. work on this to start March 2020 we have no information whatsoever since March...

One of my jobs was trying to get people in an organisation to do a better job on addressing complaints rather than ignoring and stonewalling. We used to get people to put together a timeline covering what had generated the complaint and also the steps involved in dealing with it. This would...

I find that I get far more snappy than I normally am if I have to over exert and drain my energy. But I don’t see that as a part of the illness it’s the impact of exacerbation of pain, cognitive challenges, sensory overload

Has anyone heard of Andrew Morris I couldn’t find an MP or Member of the Lords by that name

I suspect the ‘lack of confidence’ among healthcare providers in communicating this approach could be lack of confidence this is actually the way to be dealing with people

:thumbup: Subsequently noticed that Jennie had been unable to trace them, so they may not even be a journalist

Aarhus........

I had exactly the same experience ‘oh we don’t like to give that diagnosis, it’s better to focus on the symptoms...’ she wrote fatigue as the reason for signing me off work. I never went back to that surgery.

Dear Schneider et al your title gives away your bias

I think we’ve moved on from long grass to tumbleweed

Should be Caroline W and Tom

Why are neurological and psychiatric lumped together?

Hi I’m a reporter call me Wesley White my aunties neighbour has a cousin who has ME and they said they heard someone is just so angry they are ready to drop a coffee cup on the floor

Oh right no painkillers cos they are bad bad bad but amitryptiline is absolutely ok - that doesn’t make you feel like a zombie no problems whatsoever in the slightest

I wonder if the journalist who allegedly made the phone call is still around maybe he would speak to you @dave30th

I mean it might be very hopeful for someone coming new to an interest in the research But doesn’t chime with me unless there is something that’s actually a development he doesn’t realise we do remember not saying I don’t appreciate the work....

Most cost effective would be to not put people through this at all.

Nauseating