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If only they had listened to their patients, then they would have known... I'm glad there is a change happening though.

Really interesting questions. I think i read that men appear to be more likely to get Covid 19 itself. I wonder if that affects the numbers for long-covid much? Edited to add: Sorry the quote thing didn't work, too tired to figure out where i went wrong. It was referring to Tia's post on page 1.

I filled it out. I think when they asked about "What health care and support (for ME) has made a difference to the quality of your life?" that they were meaning in the positive sense, but to be honest, other than my current gp who is fantastic, most of the other health care workers have made a...

For me, I always think if something doesn't stand up on it's own merit and you have to actually put a description next to it, saying it's "evidenced based medicine" for people to vaguely take it seriously, then that's not a good sign... It's like they know that their theories are ridiculous, but...

If the clinician you see is a counsellor in the uk then they should be a member of BACP or COSCA, both professional bodies for counsellors. You can complain to them as counsellors and psychotherapists under them agree to follow their ethics code. So if you feel like something unethical happened...

"oops, something not very scientific happened" This made me laugh. Probably the most honest thing they have published... ;)

This is fantastic, thanks so much, it must have taken so much work! Kx

I think, when you work for an organisation (any organisation) and people are critical of it, then it can feel like a personal attack, even if that wasn't the intention? Especially when you are working hard, in the face of limitations, to right past wrongs. The way that many of the ME charities...

My "specialist" (and i use that term loosely...) once actually said to me, "Well you must have depression without the depression." That's not a thing!

Thank you for going to the effort of doing this, it is appreciated. Filled it out and it felt good to have my say. Thank you. Kx

Thank you. My brain is not taking this in but I've saved your answers for next time I have a bit of concentration. Really appreciate you taking time to explain it to me. K

Hi, I've had the computer analogy used on me a few times. At the time it just struck me as a dumb platitude. But I'd like to understand more about why you said it's not even a good analogy? Forgive me, my computing knowledge is minimal! If it's all "hardware running hardware" then what is the...

This is stunningly good, thank you for putting it together. wow. Kx

Please don't feel bad asking for money. From my perspective, giving feels like i get to play my wee part in what's going on to try and change things for the better. Thank you for letting us be part of this. Plus you give us hope and often make me smile.

Be proactive about getting medical evidence from your doctors. In my experience they kept saying they would get the evidence, but never did because they don't have to with pip and i think they knew it would contradict what their assessors said. My gp is brilliant and i basically gave her a list...