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My early days were the “good news, your test results are fine - it’s not cancer!” And the “so, what is it you expect to get out of this appointment” days. I doubt anything “else” was really checked out, and since then nothing has needed to be checked out because it was already checked.

I think narcolepsy was ruled out because I only had hypnagogic hallucinations however I didn’t know narcolepsy was being considered. If I had, I would have spoken about the times I thought I was getting narcolepsy and falling asleep, or unable to move… Although that was Peter White, who...

I definitely have other stuff going on. I also have no idea how to answer the question “how do you know they ruled out MS”

It’s just this sort of anti-recovery activism we’d expect from the likes of you, @Trish :laugh:

Are you familiar with the tv comedy writer Graham Linehan? His “journey” is fascinating. And very upsetting. Whether you dislike or like his viewpoint/opinion it’s a really interesting progression - the effect it’s had on his life.

I suspect it’s all ego. I’m no psychoanalyst/head dr/Fraser Crane/Freud fan but I did attend the school of life and there’s just a lot which fits.

He can say what he wants, nobody particularly respects him on the subject, or wants to hear it. There are people out there just now on the internet who are swearing that Prince Harry doesn’t have kids and the children you see are actors, doesn’t make it believable.

It’s really bugging me that they can say they're not recommending GET on the basis that GET is fixed increments, irrespective of pain/deterioration. But they are normalising increasing your activity when it just isn’t possible a lot of the time.

#manifesting

The secret ingredient is ~* magical thinking *~

Honestly he needs no “community notes” the absolute dismissal/silence/grey rock is enough.

He just can’t see it, can he?

I don’t think we are to put personal comments but what I will say is that now I have a lot more “tick” on my list of assumptions. Bet we have the same GP.

It would be better to ask people to think of their last PEM, grade how “bad” it was then try to think what caused it. The causes could then be grouped. That would erase the ridiculous “oops we forgot about severe ME…just add in “does chewing and swallowing cause PEM, after where it asks whether...

I feel like questionnaires about PEM need to get in the bin until someone comes up with a really new, unique, different way of looking at it. It feels like a constant churn of “if you climb a stepladder on a Friday whilst the clouds hide the sun, do you get sick?” It’s just endless lists of...

I remember an absolute incident once after some people had “unconscious bias” training. Basically they were confronted with the world-altering news that because everyone has some kind of unconscious bias, they did. They were so angry at being accused of something so awful. I mean furious...

People run out of patience. I’ve seen it a million times. Managers start getting all “right this has gone on long enough, this sickness needs to be resolved” ok Jim, sorry it’s adding to your mental load that Bob got run over then they discovered he had cancer, I think you’ll find losing your...

I was very open, and wasn’t the only person with ME, a much longer term worker who was very vocal had it, and yet everybody claimed they didn’t know what I had or that I “got tired a lot”. And didn’t appreciate that I was allowed special treatment which others would have loved to have <sigh>...

Beautifully written, and also bleak. When I was sliding downhill into moderate and desperately trying to hang on to my job, I faced the same choice. And I don’t think I would have chosen differently because how do you explain quitting working to stop yourself getting more ill?

How much does it cost? I would actually like to see an ally (e.g. someone who cares for a pwME) work through this mountain and quantify how long it took them, how long it would have taken the pwME and how useless it is. It would make a good reel.