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We are not asking for naratives to be used or quantified though. As per usual with ME/CFS, it doesn’t follow a neat pattern, it doesn’t fit into any of the boxes we have. If the existing framework of methodology, IRB guidelines, peer-reviewed publications are making it impossible to research...

Exactly Reminds me of a post recently where another forum member explained that Long Covid has a severity scale of its own, but Severe in Long Covid is only similar to mild ME. These concepts are already well-established.

I want to know why they are funding it and how come their comms officer is a part of the research team.

I appreciate you coming back and what you’ve written. I myself am not a scientist, but I can name off the top of my head two other researchers in the past two years who complained about one way or another about the attitude from patients and implied they won’t keep helping or we are “known”...

Sadly, we get a lot of help we didn’t ask for, don't value, didn’t want and then are blamed by the people who cannot take any criticism. You can’t please all of the people all of the time. That’s part of life. Just as you are not “just” a researcher and scientist - you also have ME, in this...

Controversial take - towards the end of my time working I was following ADHD coaching advice, because my executive functioning, verbal/listening/organisational skills were trash. I also might have ADHD and was just unable to mask due to being exhausted. Who knows? I would have benefitted from...

It’s cognitive dissonance but squared? Cubed?

Same for me - top Google result and I didn’t search or click it previously

At least green feet would have the benefit of being amusing!

You were there to receive medical advice and I’m sorry you didn’t. You aren’t there to grade their performance or correct errors. I’m really glad you contributed your experience here though. Very worrying they are operating in this way. The advice not making it into the GP letter just shows...

It’s scarily low - and what the heck is the reasoning behind it?

That’s against NICE guidelines NG206. It’s probably against NHS healthy eating guidelines. It’s really disturbing. Did they say why so low calorie?

My guess would be you’d be asked to do the “cure-all” online healthy eating course to lose weight before you can be assessed. I had to agree to do that for different reasons (pre-diabetic) it was utterly unsuitable for someone who can’t shop or cook. And the classic “just ignore the exercise...

I argued and fought for a dietician appointment, and I got one. The advice was to eat what I can and not worry about losing any weight, I should keep it on to keep me going for when I lose the ability to eat. So why are people being denied healthcare on the basis of BMI? That’s the more...

What a short, brief “to the point” intro.

I’d be up for a dull admin task which requires very low skills like categorising papers by type and number of participants (I am famously not at all scientific).

And yet, he does. It’s fascinating.

I dunno what about ME searches compared to education, income etc. The lower states are warmer aren’t they? Rainfall vs ME? The southern states have the Lyme ticks I think.

He says that he was told he met the Canadian Consensus Criteia for ME. He wasn’t diagnosed. He really should have got himself referred if he was concerned, but then he recovered so I guess there wasn’t time.

Well that doesn’t pay the salaries!