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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.

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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.

I wouldn’t expect a heart surgeon to say they had perfected a technique based on their knowledge and the individual patients needs, but not share what it is, leaving other colleagues unable to learn from them, leaving patients unsure of what their operation involved. So I’m appalled that there...

Conversely - can we have evidence of the denial of the “human right to rehabilitation” which has sparked this unusual centre -ing of it? It’s just that, none of the patient communities I know have complained that rehabilitation has been withheld from them. I mean, even your Paul Garners...

Brava @Trish I’m sorry you’re having to do all this, but it’s appreciated. You’ve gone to town on them. It’s fascinating, it’s almost an ME/CFS Science blog!

In my minds eye I’m seeing a pie chart of how much of a document refers to “increase” of activity (say, 25%) vs how many pwME have “found” their established baseline (say, 10%) then increased beyond it by choice, without consequence (about 1%) The greatest work for pwME is getting used to...

Oh I’m sorry to break it to you, no they're not thinking about “patients”. The list of priorities are 1. Ensure my organisation looks good 2. Establish ourselves as experts 3. Get public sector cash 4. Sell product on basis of cost savings 5. Get accolades 6. My career/organisation improves off...

Yes and I hope they don’t try and do the Tyson Trap of quoting endless amounts of “how to validate questionnaires” and other non-relevant red herrings. Does this method work? Show workings. BACME - should try backing pwME instead.