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I'm afraid I haven't been able to read all of the above posts so forgive me if anything I write is repetitive or irrelevant. I wanted to note the mix of immediate/delayed, slow/fast in my own onset experience (2001-2003) and then exacerbation from moderate to severe (2020-2021). All this...

Done. That was very easy!

Phew! Done it! I'd been a bit scared of a complex signing process in German (which I do not speak). But following the instructions in English provided in the link above it was actually easy. I did make sure I set aside a generous chunk of time to do it, and had a pen and paper to hand as it...

I know much less about the structure of the MEA than others here, but I'd agree with Trish's analysis and concerns above.

I just wanted to second this opinion from Michelle. I'm new here, and barring major treatment breakthroughs, my cognitive dysfunction means I will never be able to contribute a great deal. I'm sure everyone like me feels an immense sense of gratitude and admiration for those who are able to do...

Thank you. Not sure how I missed that thread!

Hi. Where would be the best place for me to talk about experiences of having suspected Covid and Long Covid as a pwme? I am double-vaxxed - but that's not the main issue here. Thanks.

I very much enjoyed the podcast. I only listened to the first sixteen minutes. Thanks so much to everyone who is working on the DecodeME study. It's heartening to see expert effort put into something so valuable.

I'd be tempted to drop 'patient' from 'invalidation of patient symptoms' and say simply 'invalidation of symptoms' or, more colloquially, 'failure to take symptoms into account'. Surely 'patient' should be taken as read, as the patient must be the key source of information on symptoms.

I had my second dose of AZ three days ago. After my first dose I enjoyed a few days of increased energy and mental clarity - as some others have reported - as well as fairly minor negative side effects (raised temperature, neurological pain etc). Interestingly after this second dose there was...

What a great video @Adam pwme . Thank you for making it.

I'm fortunate in that I am usually well enough to cook a simple meal. But when I'm not I find the following useful (they're all things you can prepare/keep in stock for use in an emergency): Frozen individual packs of slices of the bread I find most digestible. I take them out of the freezer...

This isn't original, but when I want to describe my energy problems to a 'lay' person I say it feels like having the flu all the time. In other words your body is screaming at you to rest, and if for some reason you don't, you end up feeling ten times worse.

Just to echo what Kitty is saying here. The most valuable thing I could have had at the time I got sick, after a flu-like virus, 18 years ago, was a specialist who understood that a long convalescence was vital if I was ever going to get well. They would have had to vehemently insist upon it...

I experienced a week-long surge of energy and mental focus after my first AZ jab. I almost felt like I did prior to my suspected Covid infection in December, and the subsequent ongoing exacerbation of all my ME symptoms. This surge has now receded.

It's now five days since my first AZ jab and I have noticed increased energy and mental focus since having the jab. I had experienced a severe drop off in both of these things since mid December when I suspect I had Covid and then ongoing 'Long Covid' symptoms. I now feel as if I am close to...

I had my first AZ vaccine dose twenty six hours ago. A nurse came from my GP's surgery to give it as I've been housebound since a relapse/developing Long Covid in mid December. I didn't even have to ask, so was fortunate in that regard. Since the jab I have felt a little mentally sharper than...

Hi Wyva Just to say I experienced a sudden overall 'increase in volume' at the immediate onset of my ME which followed a virus - more than seventeen years ago. I went up two dress sizes in the space of a week. Over the years this has remained pretty constant, and only really reduced when I had a...