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Menopause is one of “those” things that seems to get the GP’s back up. Nothing worse than going to a GP with a suggestion of what maybe wrong, you’ll end up in a battle of wills where they need to prove you wrong. Also I think I read that when they send you for bloods, the test needs to be...

I wrote that quote, not Bobbler. They may have quoted me when replying. Malaise should never be used interchangeably with fatigue, however people do. Which circles back to my dislike of the word, it’s got negative connotations, it’s got mental ill health connotations, it’s got fatigue...

Can’t wait to see the video when it’s released in a few days

It makes them look paranoid

It is. They decided what they wanted to do, then asked some pwME for feedback. They also engaged here and chose to disregard all feedback. That’s not PPI that’s doing a focus group.

Much better to let them put their silly disclaimer then experience *absolutely zero abuse*

It’s sad when my friends start getting brain fog and poor sleep. It’s like an unspoken dread that they’ll end up like me

I’m happy with the reports which visible spits out, and I can request further CSV symptom data extracts if I wish. I could do that and crunch the data. Absolutely no GP or Consultant would be interested. I think Tyson, Gladwell, want to do what they’ve always done, and we’ll get what we’ve...

I’ve used free trackers like Bearable in the past to track symptoms. I often can’t speak so an app is preferable. There’s an issue with your idea regarding “advice given” as what advice would the NHS give to me?!Manage your symptoms? Try pacing?

We certainly could, but it falls on deaf ears!

A lot of definitions of malaise are “a feeling of unease” which can be read more than one way. Certainly if you feel ill, you are not at ease. But it can be read as “feeling uncomfortable” or “feeling something is wrong” which all feeds easily into BSP/its depression/all in the mind

I agree, I don’t think it’s used “medically” and in general parlance Ithink it’s used interchangeably with fatigue

Oh they reiterated that they had a duty to deliver the information “to everyone” and this was the best way to do it. In fact they repeated that every time I said “you need to accommodate my disability, I can’t take part, you need to find an alternative for my disability”

Each of the 100 people will have a different understanding of PEM. More than 80 will be in boom and bust.

It’s me!

My friend was tired after a night out, she asked me if I ever feel so tired my bones hurt. I had no idea non-ME people could get that tired! I prefer PESE as it’s a precise title. Post-Exertion Symptom Exacerbation. Does what it says on the packet. Malaise is just an old-timey insult frankly...

I do wonder if mine weren’t whipped out (as was usual back then) because they weren’t “really” getting tonsillitis. As in, any sore throat used to be deemed tonsillitis, mine was clearly sore, bit red perhaps, have some banana antibiotic suspension anyway. Maybe it was fake ME non-swollen glands.

I had a medical appointment today. I’d tried to ask in advance how long, no info. I travelled a long way there, early. They wanted me to be there an hour. I said no. Then we had a lot of negotiations (you need to listen to a lecture!) I asked for books or websites to learn at leisure. They did...

This was exactly how I was. Always getting a “virus” until I was able to differentiate a real one from PEM. In rolling PEM - boom and bust cycle. I say PEM but I mean PESE I’d also like to discuss my history with a knowledgeable consultant (as opposed to Prof PD White) he did note some...

Has anyone very studied PEM (PESE) or done actual research on it? It does seem to suffer from a lack of definition. Interesting that other people get different symptoms. I’m a flu-like symptoms & swollen glands (that aren’t swollen) myself.