: TV casting call for people living with ME/CFS

csinclair02 said:
Runners? What the hell. Even when my condition was very mild, I couldn't run.
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I was able to run during the earlier years of M.E and continued to do so even when I experienced severe PEM and recovered after 3-4 days. Perhaps they could include the before and after effects of exercising with M.E. Appearing normal/healthy before the run and completely ill/sick 14hrs later? Unable to talk or process information, stand upright, walk a straight line et

What a shocker eye opening thriller that would be for their show.
 
It's a bit like saying we're looking for a person with celiac disease to come on our programme about eating bread. There'll always be someone who says oh I can do a little bit and I'm ok. But if it's against the NICE guidelines it shouldn't be done.

I think the person who wrote the letter is probably well intentioned but needs to do a lot more research and speak to far more people before going ahead. This is people's health they're playing with.
 
Tia said:
It's a bit like saying we're looking for a person with celiac disease to come on our programme about eating bread. There'll always be someone who says oh I can do a little bit and I'm ok. But if it's against the NICE guidelines it shouldn't be done.

I think the person who wrote the letter is probably well intentioned but needs to do a lot more research and speak to far more people before going ahead. This is people's health they're playing with.
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I find in this situation using the term with these people of ‘you are out of date and working based on old and harmful guidelines and definitions’ is key

then pointing them to look at the ME/CFS guideline, because it is official evidence of this. And maybe saying something along the lines of 'you may have been pointed to/working based on the old, harmful ones - from 2007 - that you will note say 'CFS/ME' and have been found to be harmful and point to the parliamentary debates, academy of medicine'.

you could explain that whilst some previously fit and energetic people who get ME/CFS might try running (and some seem to be able to complete a run because they are 'very previously physically fit ME/CFS vs unfit people'), but the difference is that whilst everyone finds it hard initially [but progress for that blood, sweat, tears] those with the condition never get to the point where they 'get fitter', in fact it becomes harder and makes them more ill until often around the 6month mark they are markedly deteriorated from where they were.

And link to the WOrkwell video which has the lady marathon trainer. The presenters who are both athletes should particularly respond to those videos and information because training involves a diary of your running times and these days I suspect heart rate data and so on.

I think the response already noted that almost exactly what they seem to be trying to do is exactly what the illness / disability actually is. If you don't have this effect on 2 day CPET then it isn't ME/CFS but fatigue or another condition.

ANd breaching those limits by doing this is one way that people end up with such low thresholds they can't brush their teeth or shower (which I suspect people who do the runs are temporarily suffering after each run, but the number of days then extends as it becomes not just 'in PEM')

said person then can’t avoid trying to argue with you if you use the 'you are out of date and therefore harmful' and that opens door to allowing you to provide specific change and reason for it - which means referring to new guideline and how it involves underlining tighter definition and opposite treatment to the old stuff which had been proven to be harmful, and on which the original email seems to be assuming 'they know'.

And then you’ve the link to provide the impetus for why the old harmful guideline (her show is based on ) had to change eg workwell research, physiosforme, parliamentary debates in 2018, CDC changes snd academy of medicine report

I know that given how many years it has been it seems unacceptable to be so out of date. But remember that people even with ME don’t immediately realise that nhs info could be so wrong and there could be such untrustworthy individuals deliberately trying to undermine updates due to them putting their own job preferences or laziness over safety of patients. That’s why it is so hard to get it across. The bast***s stitch it up so that we look like mad conspiracy theorists just for telling the basic facts of our own body life and safety.

Noone suspects that those eg in the caring profession might be happy to keep things as they are and make it so that the old misinformation is still coming up over the new stuff they should have replaced it with.

But if they did get Workwell Foundation involved with the programme then they could either really help the person with ME/CFS and have a fascinating programme based on 2-day CPET etc or find that they pass the CPET and discuss the new definition of ME/CFS.

and someone who just wanted an easy job does the ‘I didn’t want to hear about these things’ as if they are getting dragged into ‘drama’ rather than they’d been themselves part of that harm like being part of post office scandal would be.

so you need that term strongly said of ‘out of date and harmful’ as the segue to force them to listen and feel obligation to be educated.
 
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MrMagoo said:
it’s absolutely possible to have a period of remission or improvement. I wish I’d known that’s all it was.
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At one point there was a stat often quoted that half of all CFS (don't think it was ME) patients who recovered relapse at some point, sometimes years later. Usually they are much worse the second time around. Its a story I hear quite often, but I am unsure about the claimed relapse rate, it does not seem to be based on decent epidemiology, but is rather a guesstimate.
 
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