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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.

404

Oh it was /s I did note that in EROS they acknowledges that some people will stop at the second part (aka some people want to stabilise not increase)

Bear in mind, when you increase activity you need to ensure you are stable at current levels. This consolidation period could be as long as a few……weeks!

No, where did it say that?

I already do heart rate monitoring via Fitbit and visible. They also measure HRV and the RHR daily average changes most days. I know when I’m exerting above normal, or resting below normal. I can measure my time upright through this. But not cognitive exertion, which tends to buildup then slow...

It is important to spell it out, and I’m sorry you have had to go through that.

There was a very long, boring explanation about questionnaire validation methods IIRC, which is fine if you’re the Head of Marketing for Halifax Bank doing a customer satisfaction survey, but clearly hasn't helped in this scenario. They have ME so you can’t say they don’t understand ME (blows...

Well AFAIK food and water are human rights, if anything that’s the human right denied to Very Severe patients and causes their death. If they're so concerned about human rights. Which they aren’t.

Well I’d never get out of bed if I followed physio advice

I know some NHS treatment clinics are just 12 week programmes. So in 3 months you can learn pacing, find your baseline and do graded pacing up therapy! Sounds great.

I feel like BACME need to see this.