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Nobody is perfect I don’t agree with his take all the time but I agree CS has done a hell of a lot.

I’m sorry you feel powerless @Lou B Lou I certainly think there are issues with this project and MEA hasn’t handled it well. They need to do better I think they have done a lot of positive stuff in the past and they deserve credit for that but certainly the leadership from the trustees needs...

I just use the physio gel pack that I put in the freezer wrap it ina cotton scarf and put that on the back of my neck. Works really well for me and it isn’t wet just a bit damp. Also if very very hot a large size one on the torso helps cool down body core simultaneously. Usually at night but...

Thank you to Long Covid Switzerland and Long Covid Kids Switzerland for becoming our latest signatories to the Open Letter to Cochrane. Thanks to @Yann04 for making contact

I always find such articles stressful and worrying for the person engaging in the strenuous activity People are entitled to do what they choose with their reduced capacity though. I guess doing this is the equivalent of me pushing myself to go to a big family get together or something like...

Just even going by the name - inspiritol - makes it sound like snake oil

It’s Hannah Sharland

Ugh

And also included in the visible app

Not helping much as I don’t have specific link but this is ringing some bells that AFME or MEA had done some work on this a couple of years back so best to see what’s already available.

Yes even the NHS and Department of Heath use ME/CFS officially.

Well the election is 4 July so this all remains to be seen

Now only 100 signatures from 11,000

Good to see them addressing this it is so important

Agreed @Andy at least do it as a collaboration the Drs need to understand there are UK organisations and researchers they can seek information and advice from

:thumbup: Great news you can message me :thumbup:

Made me spit out my tea :laugh:

That was my thought at the start of the project- yay let’s get rid of the Chalder questionnaire. But “hey it’s not as bad as Chalder” isn’t the standard we should be accepting when 90k of PWME money and a hell of a lot of hours input on filling in the proposed replacements is being spent on this.

I think it was mentioned a few months ago that the project is taking longer than anticipated.

Thanks @RaviHVJ this is why it’s good to discuss. Your take has reassured me.