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If based on reality of actual care received it would be a very quick task

team@medvidi.com

Yes I agree symptoms are difficult to unpick. For example I knew I had to lie down on the sofa after work 5 hours sat at my table at home but as I never had any lightheadedness or falling down I also was pretty sure I didn’t have POTS. it was a slow process of understanding that Orthostatic...

They should send a letter to every Integrated Care Board with the same question.

Thanks

GGZ?

Transdiagnostic is it me or is that their latest buzzword

No idea I wasn’t spoerty and until fitbits became a thing I didn’t even count steps. Possibly if fitbits had been a thing when I was in my 30s when I last was able to do any serious discretionary exercise as opposed to moving as part of a daily living or social activity I would have got one.

What country are you in? in the uk I can buy a frozen mix of peas broad beans and French beans which is quite good - sainsburys I also buy frozen leaf (not chopped) spinach and French beans, broccoli to avoid waste. Frozen peas are good, I prefer petits pois rather than garden peas. I can’t...

They always bring exercise into it. Pacing isn’t structured it’s about changing how you do normal stuff in a less demanding way, when you can manage to.

It’s an adjournment debate these are always short. The Hansard link shows the full thing it’s not just a speech from Bridgen there’s a response from the Minister. In this case it’s Maria Caulfield (a nurse who worked on Covid wards)

No evidence just some support

He must live in a glass house

Just tagging in @dave30th to make sure he knows about this

Prof Matthias Kohl looks a good collaborator to have - mathematics of biology and medicine

Similar data was in the UK ME Association report on their patient survey.

As we know the problem of patient groups being taken in by researchers with this agenda is pretty widespread internationally. And they have also gone as far as setting up ‘tame’ patient groups so they can guarantee compliance.

Agree @Andy we would all obviously ideally want to see more money it is absolutely a step in the right direction . It is a great achievement by Evelien and others involved and we definitely need to recognise that.

I’ve never been in the category of severe ME I have moderate ME. On days when I’m at home on my own schedule with no demands just pottering around I can almost forget that I have any cognitive difficulties. I can read short online posts ok for a few hours and write shortish posts. But even...

Great news. You have a good relationship with Healthwatch and I’m hoping that will influence them here to maybe have a meeting with me next year. It will be so useful to compare the ME desert here to the set up you have over in Sheffield. I really want to make a step beyond just being one...