Broken Battery Updates
- Thread starter Chandelier
- Start date
The classic curse of people with bad judgment, getting everything they wanted and hating it, but never having the good judgment to see it, so they never deviate from always choosing what they end up hating because they can't even perceive of their role in this, instead they are always the victim.
Personally I think we should rather listen to people with a good track record, and ignore those with a terrible one instead of putting them in charge, but I'm just weird like that.
Adam pwme
Senior Member (Voting Rights)
BBC Morning Live covered the new £4.75m UK government funded #MEcfs genetics study yesterday, which will sequence 6,000 DNA samples as part of the wider DecodeME project.
Unfortunately, Dr Oscar Duke @DrOscarDuke said Chronic Fatigue Syndrome is “probably the best way to describe” the illness.
Unfortunately, Dr Oscar Duke @DrOscarDuke said Chronic Fatigue Syndrome is “probably the best way to describe” the illness.
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V.R.T.
Senior Member (Voting Rights)
It's one of the worst possible ways to describe the illness!
It leads to so much stigma and confusion. I felt ill when I was mild. Like I always had a cold or was getting over one. And even when I was so exhausted I would have to rest in bed I primarily felt really f-king ill! So it took me much longer to understand I probably had 'cfs'. You could plausibly call dozens of other serious conditions chronic fatigue syndrome by their logic.
It's pathetic they still won't get the basics right.
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Well, then it's only reasonable to call this person-imitation Doctor Puke, and if he disagrees with that then he can stuff it because it's just how the world rolls, we can name things however we want, even if it's inaccurate, even if the people on the receiving end disagree on multiple grounds, including its inaccuracy.
What would person-imitation Doctor Puke think of Chronic Shaking Syndrome as "probably the best way to describe" the illness otherwise known as Parkinson's disease? Because it's every bit as wrong, and it turns out that words matter, and that experts should be concerned with accuracy.
Beth
Established Member (Voting Rights)
Wow, so much wrong/missing there I can’t put into coherent sentences, does anyone else get the sense that there running scared and this is a tactic, to downplay and omit? I also get the impression that ‘cure’ emphasis over treatment deliberately makes us come across as demanding more than ‘reasonable’ and omits the fact we have nothing and just want what other diseases get, not more, not to mention the disgusting way they get to boast about funding research deliberately omitting the fact the funding doesn’t ever cover analysis etc.
it's that thing where I watch him trying to use his body-language to express 'oh I haev so much sympathy for those with it, it really is terrible' whilst we sit here and don't know whether he's either completely been misled on the wording or actually believes it's 'just tiredness' but yet he is just some wonderfully caring person who is even so sympathetic to people who get really exhausted
people thinking as long as everyone seems to do the right body language all around it for a few minutes it negates the work in getting the words right. But that's paternalism. 'Good intentions' [with callous indifference] BS publicly emphasised as if that should deter someone from criticising 'because they mean well'.
We don't want the people on the sofa's 'sympathy', but to not be misrepresented in order that we can keep our/get some respect and be understood regarding what we have and live with, so have more space/room to live (without always having to explain ourselves then be ignored cos someone heard something different somewhere else).
That wrong description blocks good research and one day getting care and contributes to the next day and all the days after each pwme getting 'micro-aggressions' they have to just live with the harm to their illness from (because yes, PEM is a week of harm or maybe more or less from the impact of that person saying 'I'm tired too so do it yourself' or whatever the need being ignored is - each time it happens, so it cumulates very fast to big deterioration in illness - not just 'upset'). So it is a choice to avoid responsibility. And avoid hearing you have it, so you can carry on 'pretend oblivious' to the consequences to others.
That's the hell that we are trying to get out of. It's difficult to describe what a dystopia it is to live in that and not even know what someone in front of you is and if they are going to turn on you
I would however love to see someone, perhaps from a charity or as a group, managing to nail the best group and way to 'approach the conversation' that needs to be had with these people to finally nudge them into doing a professional job for us just as you'd hope is happenning/has probably happened for other things (I imagine there are lots of illnesses that also have this crap, but some who tackled it and got somewhere - and it does take a heck of a lot more work than those outside of the profession/work realise - just like a really good essay or paper ironically makes it seem like what it is saying is 'so obvious' because of how well-written its final draft ends up being)
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I randomly have a picture in my head of a man with each foot in a different boat trying to keep them from riding away from each other and ending up in the water.
and then think of the hilariousness/ironicness of a culture where we are supposed to play to being most sympathetic for them for 'being in that situation' (not the other way round) - the ironic bit being that 'why don't you just move one foot so you can stand straight and act normal' would be exactly what behaviourists would say to people in other situations without wanting to hear the whys or wherefors...
MrMagoo
Senior Member (Voting Rights)
All I keep imagining is calling other debilitating illnesses awful reductive cutesy names, to demonstrate how offensive it is. Then feeling bad for people who have those diseases because it’s not nice to hear, even in an example of bad behaviour.
I’m a bit over people telling me they “believe” me and know I am really ill. I get why they do it but it’s a bit meaningless, I mean people should default believe it’s real without saying it out loud. A bit like generic “you’ve got this” slogans everywhere. Just repeating a phrase isn’t the same as connecting or understanding, it becomes trite.
But then you see this on the BBC and think, actually…we need all the support we can get.