UK: Beth Dobbin -- BBC: The Olympic sprinter now bedbound for 22 hours a day

Beth said:
Wasn’t sure where to post this but saw other sports people in thread, I thought it was excellent at raising a lot of the current issues (only read it haven’t watched video) https://www.bbc.co.uk/sport/athletics/articles/crd6dj26v4e4o
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1200-word article with accompanying video.

The Olympic sprinter now bedbound for 22 hours a day
Beth Dobbin is so determined to raise awareness of the illness that has decimated her life that she is speaking out, despite knowing it could trigger a brutal deterioration in her health.

Five years ago, she ran for Great Britain at the Tokyo Olympics. Now, at 32, she spends more than 22 hours a day in bed.

"I've done little things like attend a blood test at the doctors and been in bed for months after. So doing this interview, chatting away for 30 minutes, that could have an impact on me in 2027," she says.

"But I felt like it was really important to do that to get the message out."

She now only gets out of bed to eat and use the bathroom.

Dobbin has been diagnosed with ME, or myalgic encephalomyelitis - a chronic, fluctuating disease, causing symptoms such as sleep problems, problems with thinking and memory, pain and severe, persistent fatigue that does not improve with rest, and more.

A conversation, or even something so simple as a light too bright or a sound too loud, can cause a "crash" that lasts 24, 48 hours, or in the worst cases, months on end.

This year, Dobbin has left the house on just five occasions.

"It's life-decimating like I can't even put into words," she says. "I feel like I've lost everything.

"I have still got my family, but I've lost my independence, my health, the ability to work, the ability to exercise."

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It is a good article. Thanks to Beth Dobbin and her family. I thought this bit was very compelling (also good the family are not pushing Beth through ineffective therapies):

"I'm just so desperate to help her but I can't because there is nothing. I'd take her anywhere, I'd take her to America if I had to, but there's nothing," says her father Jim, a former footballer who played for Barnsley, Grimsby and Doncaster Rovers.

Mum Jean adds: "You wake up every day and just feel sad. She should be building her life, living her best life.

"Every day you worry about how she's going to be that day. It's a worry about what our future life's going to be like, who's going look after her if we can't look after her.

"There is nothing out there. There is nowhere to go. You go to the GP and there's nowhere for them to send you to. It's really at the back of the queue as far as research, knowledge, expertise, funding."

There is no specialist service for ME within the NHS and Dobbin says she has found herself educating GPs about the condition.
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I don't know how anyone could read that and think that the current situation for people with ME/CFS is ok.
 
Beth spoke brilliantly. So sorry she is facing this…so grateful for her determination to get through that interview as thoroughly as possible.

Maybe “AthletesForME” or something better worded? A group of well informed athletes with and without the disease would be ideally placed to challenge the nonsense out there. Beth said as much in the interview that everyone believed her because of her background but she knows that’s not the case for most.
 
Fizzlou said:
Beth spoke brilliantly. So sorry she is facing this…so grateful for her determination to get through that interview as thoroughly as possible.

Maybe “AthletesForME” or something better worded? A group of well informed athletes with and without the disease would be ideally placed to challenge the nonsense out there. Beth said as much in the interview that everyone believed her because of her background but she knows that’s not the case for most.
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Athletes4ME :thumbsup:
 
Beth said:
Wasn’t sure where to post this but saw other sports people in thread, I thought it was excellent at raising a lot of the current issues (only read it haven’t watched video) https://www.bbc.co.uk/sport/athletics/articles/crd6dj26v4e4o
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Not often that I read this type of article and find nothing that I disagrees with. Huge thanks to Beth Dobbin for doing this. From the article it’s clear that Beth doesn’t want to be in the media because of her illness but that she is doing it out of a sense of necessity, which is how many of us feel.

Also thanks to Beth’s sister for running a marathon for ME Research UK, and to the BBC journalist, Katie Falkingham, for doing the interview. It’s notable that she is a sports correspondent not a health correspondent – which may explain why the article is as good as it is.

Reading it reminded me of the UK swimmer Archie Goodburn who managed to secure a meeting with the PM after a tearful TV appeal for more investment in brain cancer research that went viral: https://www.bbc.co.uk/news/articles/cm74pn052j2vo

“After the meeting, Burnham announced a new national brain cancer clinical lead and promised a review of brain cancer progress and action to get patients treatment sooner.”

In 2018 the UK government promised to double investment in brain cancer research following the death of Tessa Jowell MP (although I gather that much of that money has not been spent).

In an ideal world, I don’t think that health research policy should be determined by which celebrities happen to have particular diseases, or which videos happen to go viral. However, that is the world we live in, and if Beth Dobbin (or anyone else) can use their public profile to pressure the government to do more to help people with ME/CFS – to redress the injustices we have faced for decades – I would be exceedingly grateful.
 
It's a good article, and it's also a good example of the uncertainty involved in attributing ME/CFS onset to infections. It's not quite clear in the article, but it seems Beth became ill and only then did retrospective testing, which would, I presume, flag only past infections — covid and EBV in her case. There is of course currently no way to untangle the possible/probable roles of EBV and SARS-CoV-2 in causing and/or perpetuating her subsequent illness.
 
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Hutan said:
It is a good article. Thanks to Beth Dobbin and her family. I thought this bit was very compelling (also good the family are not pushing Beth through ineffective therapies):



I don't know how anyone could read that and think that the current situation for people with ME/CFS is ok.
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Definitely. It would be good if the authors of that report on ME/CFS situation in Belgium could read this to understand how inaccurate what they wrote about the UK situation is.
 
Chandelier said:
Awesome, there's also an article by the German Sport Bild about her!
Sport Bild | Google Translate
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What a world where (Sport) Bild publishes good articles while the FAZ runs feel-good stories about recovery through 30-second micro-workouts.

(Sport Bild belongs to Bild which is basically Germany's "The Sun" while FAZ is allegedly quality journalism)
 
Back to Beth - she’s cutting through a lot on socials, really positive reactions.

I do think it’s interesting that she says she was believed because she’s an athlete. I do worry that she will find over time that fades or changes to “doing too much training back then” etc. as time goes on you stop being seen as the person you were, instead you are the person now who hasn’t done anything or improved for years and years.
 
Back to Beth, 650-word article:
athleticsweekly.com

Beth Dobbin: ‘I feel like I’ve lost everything’ - Athletics Weekly

Former Olympic sprinter on the illness that has confined her to bed five years after Tokyo, and why she is speaking out despite the risk to her health. Beth ...
athleticsweekly.com athleticsweekly.com


BETH DOBBIN: ‘I FEEL LIKE I’VE LOST EVERYTHING’

Former Olympic sprinter on the illness that has confined her to bed five years after Tokyo, and why she is speaking out despite the risk to her health.​
 
Chandelier said:
Back to Beth, 650-word article:
athleticsweekly.com

Beth Dobbin: ‘I feel like I’ve lost everything’ - Athletics Weekly

Former Olympic sprinter on the illness that has confined her to bed five years after Tokyo, and why she is speaking out despite the risk to her health. Beth ...
athleticsweekly.com athleticsweekly.com


​
BETH DOBBIN: ‘I FEEL LIKE I’VE LOST EVERYTHING’​
​
Former Olympic sprinter on the illness that has confined her to bed five years after Tokyo, and why she is speaking out despite the risk to her health.​

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I like that she said there’s no NHS specialist service for ME because there isn’t.
The odd BACME clinic for diagnosis and online group pacing with an OT for mild to moderate cases is utterly meaningless.
 
"I'm just so desperate to help her but I can't because there is nothing. I'd take her anywhere, I'd take her to America if I had to, but there's nothing," says her father Jim, a former footballer who played for Barnsley, Grimsby and Doncaster Rovers.
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My mom is the same way. She wants to believe there’s somewhere I can go to get better, but I have to tell her there just isn’t.
 



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Full segment (7 mins)​
BBC Radio 5 Live: Olympic sprinter Beth Dobbin on living with ME/CFS and interview with Dr Binita Kane​
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Full interview with Dr Binita Kane on BBC Radio 5​
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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.
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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​
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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 no 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'.
 
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.
 
Hutan said:
but it is, in my view, giving the wrong impression about the gains that can be made from medication
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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.
 
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