MrMagoo
Senior Member (Voting Rights)
I mean, who doesn’t want to believe that. It sounds lovely. That you could go somewhere and it would help.
That’s how all the Choo-choo brain trains make their cash, because people really want help.
Well-known, famous people with ME/CFS (public thread)
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That’s how all the Choo-choo brain trains make their cash, because people really want help.
Chandelier
Senior Member (Voting Rights)
Full segment (7 mins)
BBC Radio 5 Live: Olympic sprinter Beth Dobbin on living with ME/CFS and interview with Dr Binita Kane
Full interview with Dr Binita Kane on BBC Radio 5
Excellent discussion on ME & @BethDobbin that looks at:
- why ME has been dismissed
- why it's seen as psychological
- the sickest patients have no NHS care.
We've seen Beth's story do some serious breaking through. The major papers & sports sites have been covering it! Great to see such a well stated interview getting this coverage
Beth is doing so well. No doubt Phil Parker et al will be contacting her to offer her a free trial of their various mind over matter treatments.
Binita Kane is very articulate and could be a good spokesperson. But she goes way beyond the evidence when talking about the cause (mostly 'mitochondria not producing energy'). Also, on treatments, she does say there is not cure, but suggests that there are treatments that can help with symptoms. I guess that is true if you think about things like painkillers, but it is, in my view, giving the wrong impression about the gains that can be made from medication. I suppose though, someone operating a Long Covid clinic is not going to be saying, 'no, there really isn't much doctors can do apart from just helping these patients to get financial and practical support'.
Binita Kane is very articulate and could be a good spokesperson. But she goes way beyond the evidence when talking about the cause (mostly 'mitochondria not producing energy'). Also, on treatments, she does say there is not cure, but suggests that there are treatments that can help with symptoms. I guess that is true if you think about things like painkillers, but it is, in my view, giving the wrong impression about the gains that can be made from medication. I suppose though, someone operating a Long Covid clinic is not going to be saying, 'no, there really isn't much doctors can do apart from just helping these patients to get financial and practical support'.
Dr Carrot
Senior Member (Voting Rights)
I am trying not to pour cold water on this - obviously no negative sentiment towards Beth, i am glad her story has been shared and written up so respectfully and accurately.
But maybe it’s because I and no doubt we have seen this kind of thing many times over the years - what actually changes after these articles? If they’re used to apply pressure / educate legislators or the medical profession that’s good - but I do sometimes worry that there’s an echo chamber effect. Over on twitter a lot of the long covid / ME users are hailing it as a breakthrough…but if you look closer it’s just them / us talking about it, rather than a groundswell of public support.
But maybe it’s because I and no doubt we have seen this kind of thing many times over the years - what actually changes after these articles? If they’re used to apply pressure / educate legislators or the medical profession that’s good - but I do sometimes worry that there’s an echo chamber effect. Over on twitter a lot of the long covid / ME users are hailing it as a breakthrough…but if you look closer it’s just them / us talking about it, rather than a groundswell of public support.
hotblack
Senior Member (Voting Rights)
Agree. I understand why some people like the message and want to hear it but it’s unhelpful. The things that makes ME/CFS different from all the other conditions vying for attention and more support is (1) so many in healthcare and beyond don’t believe our condition is real and (2) the harms that are done to us by healthcare services not recognising our needs. That’s what the focus needs to be.
hotblack
Senior Member (Voting Rights)
Not at all. It’s an important point. It can be both I think. It is great to see someone articulate things and use what profile they have in a positive way. But it is also not the significant change needed to match the scale of what we all face.
Felis Catus
Senior Member (Voting Rights)
Given what she preaches in online webinars and what she sells through her clinic, I highly doubt she was talking about painkillers.
With friends like these...
This might be the first time I've seen a story break containment and getting outside voices to pitch in, so there's that. As annoying as it is, it's clear that the former athlete angle is especially convincing given the old lie about deconditioning and fear of activity.
Of course there is always the possibility of the usual chance recovery turning this into a poisoned pill that makes any particular story problematic to emphasize too much. It's happened too many times to be sure it won't happen here, or the next time. This is something that has really soured me on human nature, and upped my cynicism all the way to 11.
Initially I though that the people who would recover from LC would be so numerous and annoyed enough at what they endured that they'd be a positive force for change, but instead the recovered have, as far as I can tell, all moved on and shown no interest in helping out, while those who convinced themselves that they Jedi-ed through the illness have more than made up for the few recovered who have contributed to the effort by being the most annoying ass-hats in the world.
Makes me long for a post-singularity world where I don't have to interact with humans much, because damn do I just not like people anymore. And love them. It's a complicated relationship thing, the good and the bad are so damn chaotic. So much potential for good. So much potential for bad. Ugh.
MrMagoo
Senior Member (Voting Rights)
I think it’s good (but sad) that the story has traction precisely because it’s being handled as a “sport” story, not a news/health story.
It’s also just very plain in some ways, if you know what I’m getting at? I don’t think she or the interviewer is doing the standard “ ME/CFS is a complex, multi system disease…” I mean, even I switch off when that old chestnut comes out.
I also like how she described getting ill, she showed that she did actually go back to training and tried to race, contrary to the new nonsense rumour from some (ahem, brain loopers) that pwME are immediately banished to a dark room to lie down, possibly for 6 months if not years.
It’s a common description to all of us- thought you were getting better, got back into work/training, few weeks later you mess something up, you’ve had all these weird pains, your brain is mush, guess what? You weren’t well after all! Welcome to MEville, populations 440,000.
It comes over naturally and the story brings you on the path with Beth. It’s maybe that she’s got good media skills, but I think also the journos aren't trying to frame or shape the story a certain way.
Good stuff.
It’s also just very plain in some ways, if you know what I’m getting at? I don’t think she or the interviewer is doing the standard “ ME/CFS is a complex, multi system disease…” I mean, even I switch off when that old chestnut comes out.
I also like how she described getting ill, she showed that she did actually go back to training and tried to race, contrary to the new nonsense rumour from some (ahem, brain loopers) that pwME are immediately banished to a dark room to lie down, possibly for 6 months if not years.
It’s a common description to all of us- thought you were getting better, got back into work/training, few weeks later you mess something up, you’ve had all these weird pains, your brain is mush, guess what? You weren’t well after all! Welcome to MEville, populations 440,000.
It comes over naturally and the story brings you on the path with Beth. It’s maybe that she’s got good media skills, but I think also the journos aren't trying to frame or shape the story a certain way.
Good stuff.