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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.

So there has been PROMS questionnaires callers TIMES, PASS and now MEAQ one thing I will say is I believe Sarah Tyson does have ME, by the way these things are written it reminds me of my final working months. Disorganised thoughts. Hard to make a point clearly and concisely.

I was diagnosed with Fibromyalgia first, I have no idea whether I really have it though. I have pain it waxes and wanes. Who knows? I’d like to see more about “health fatigue” although, (again, one to hide from the Behavioursaurs in case they hijack it as being evidence of effort preference or...

So much info about pacing is minimising the importance of it , there’s always a bit about how it “helps you do more” or some success where someone can have a day out walking or something. None of it helps you manage your realistic factual responsibilities and ADLs I’d honestly like to see a...

Most of them think pacing will lead to allowing them to increase activity

Within one year, at least 50% of the women will sigh if you say “have you tried yoga/pilates/going vegan/keto/fasting”

A high % have been advised to start antidepressants and/or talking therapy

There’s a fair few complaints on the MEA Facebook post, Charles Shepherd has been replying, holding the line.

Don’t forget we have the emotional support thread that was started after Sarah Tysons comments upset people. I just keep thinking, only 1 year until Decode ME

DEID means dead if you’re Scottish!