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

Rick Sanchez said:
The fluctuating nature of her decline in sports sound eerily familiar to many of the stories I've read over the years.

As a child I went through this experience except in slow motion as my illness progressed. Would do sports 3-4 times a week (outside of PE and footy during recess) where I would bizarrely go from being either the fastest runner in warm ups, to the absolute slowest runner sometimes. Just made absolute no sense to me at the time. Especially given how sickingly competitive I was. It was humiliating. But there was nothing I could do.

Not trying to derail the thread. But isn't this the experience of many? Also explains why some patients, including myself persisted with GET for some time. Because there were days where your body actually functioned somewhat. Giving hope that you could indeed just will and exercise your way back to health. A lot of the athlete stories are similar. They often persist for some time. It isn't like they just give up in a couple of weeks. Often there seems to be this false hope that recovery is possible, and this false hope isn't from some GET researcher, given that most athletes haven't even heard of MECFS at this point in their illness.

The random fluctuations also would make absolutely no sense at times. Boom and bust cycles has been used by both GET & CBT researchers but also by patients. And I have just not bought it. Of course PEM is central to the illness. And clearly a lot of patients have had their lives ruined by being pushed or pushing themselves. But there does seem to be this completely random fluctuations of symptoms that just isn't explained by overexertion at all and always explaining it by basically victim blaming the patient for pushing too hard doesn't give a correct picture of the illness. Avoid infections and pace as perfectly as you can and you still get hit by a truck out of nowhere.
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You describe this so perfectly

Before and after a period of acute or unrelenting illness, I've experienced such fluctuations as couldn't be accounted for. A transition into a phase where everything became possible, easy even. So naturally I'd thought that I was experiencing recovery, albeit unsteady and prolonged.

In the beginning my capacity in a good phase or on a good day wasn't much worse than before illness. Perhaps it's the same for athletes, even as they are at a much more advanced level of fitness. Maybe capacity doesn't have to go all at once.
 
Mortal Machinery said:
I wonder if the fact that her event was only a 10.5 second burst of anaerobic energy allowed her to continue to compete in a way that a distance runner, rower, or cyclist would not have been able to even early in their disease course. Would be interesting to compare her data to an endurance athlete.
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Thats possible.

Endurance capacity or stamina is fairly consistently found to fall short- in comparison to controls - in studies on pwME. Even though many of these studies probably aren't the best the volume of data would point strongly to a lack of stamina. Self reported experiences match this.

Following this avenue, someone running over a prolonged period - with an equivalent symptom burden - would likely be more likely to collapse than someone running over a shorter one.

Still, maintaining training in order to sprint competitively would involve great stamina with prolonged periods of exertion. Time hyped up, then poised and ready but not permitted to run, would add to the exertion clock.

So I am not sure.
 
NelliePledge said:
Whether the people in clinics dealing with those of us with ME/CFS or Long Covid are “lovely ” is irrelevant we don’t want lovely people in public or private health provision we want people who are capable of being professional and doing things actually in our interests.
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My thoughts

It’s a great piece of work that she’s said they are lovely, but can’t help. She’s very neatly knocked that idea that the NHS “does do something” on the head, with an iron fist inside a velvet glove. It’s actually brilliant.

Obviously, we know the full story. Also the people in LC clinics might be lovely, they’re not all the same as the ME clinics. And when you’re new to being ill you might think they’re very lovely and knowledgeable.

Secondly, the name debate. We are stuck with it as it is for now, and I doubt it will change unless there’s a scientific breakthrough. Actually lots of illnesses are stuck with stupid names, ours is just stupid to the power of 10 because of all our other issues.

Probably the same with our advocacy and charities. We’re stuck with them doing what they do until something comes along to disrupt the status quo.
 
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One of the things that struck me about Beth Dobbins’ own narrative of events, which I don’t think I’ve seen commented on yet, is that she clearly had excellent doctors, due to her position as an active Olympian, and they got her to the truth of her disease v quickly. It seems they were efficient at ruling out other things, and even as they were only circling towards ME/CFS they were warning her that this would be very bad news because there’s no known treatment or cure. How often do others get that kind of clear, prompt, knowledgeable and honest communication? It has significant implications (eg I had one doctor suggest I try hyperbaric oxygen therapy at massive cost - and if it had been vaguely affordable I would probably blown my money on it, because I had no half decent scientific advice at that point and I was desperate).

No one wants to be told they’re screwed, but if you’re screwed it’s far better to know. Being encouraged to join an advocacy and mutual support group lobbying for more science research would have been a far better use of my time the last 4 years than wallowing in the sea of quackery that I desperately dove into.
 
Tom Hill said:
It seems they were efficient at ruling out other things, and even as they were only circling towards ME/CFS they were warning her that this would be very bad news because there’s no known treatment or cure.
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I think there's one more thing going on - problematic behaviour of the NHS staff pushes people into the hands of quacks. Some of us didn't know ME, CFS, ME/CFS and other "problematic" diagnoses existed but were met with hostility, disrespect and gaslighting. When you experience that or when you realise that the "lovely staff" are just performatively lovely, the trust is broken and many patients probably question if anything they were told was true. Having doctors with good character at the time of diagnosis can make a huge difference in where and how you go on from there.

EDIT: typo
 
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Tom Hill said:
No one wants to be told they’re screwed, but if you’re screwed it’s far better to know. Being encouraged to join an advocacy and mutual support group lobbying for more science research would have been a far better use of my time the last 4 years than wallowing in the sea of quackery that I desperately dove into.
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You're right, I feel exactly the same way. I envy Beth, who was incredibly lucky to get an early diagnosis
My God, if I'd been diagnosed in time, I probably wouldn't be lying in bed like an idiot today. I'd probably be helping my wife with our children's homework instead.
But that's how it is. For more than three years, doctors completely missed my illness. They left me in the dark, with absolutely no idea what was happening to me. So I tried to figure things out on my own and find a way to recover. And I ended up doing absolutely everything I shouldn't have done.

Exercise-based rehabilitation, physiotherapy, acupuncture, yoga, psychologists, CBT based on physical exertion and deliberately triggering those supposed "panic attacks", which were probably episodes of severe dysautonomia all along. I even underwent exercise stress tests with a cardiologist. Not to mention all the books about the sympathetic nervous system and the brain retraining methods that were supposed to fix everything.
I tried everything. Absolutely everything. And I now wonder just how much all these approaches contributed to my deterioration.

I also took antidepressants, which made me dramatically worse. By the way, couldn't this be an interesting avenue for research? I find it strange that so many of us report such extreme intolerance to antidepressants that act on serotonin. I'm not drawing any conclusions, but I really think this deserves proper scientific investigation.

Meanwhile, here in France, we have Ranque and Lemoine, whom you're probably getting quite familiar with by now. I find their influence on how this illness is approached deeply worrying. Just a few days ago, they published yet another paper based on a biopsychosocial approach, supposedly aimed at reconnecting general practitioners with Long Covid patients.

And yes, in France, ME/CFS is still barely recognised as a genuine disease, even though the French national health insurance system acknowledged the harmful effects of certain practices in its recommendations, which were then modified just a few days later by Lemogne. The term Long Covid is preferred, even for patients who were never infected with Covid...

In France, these people are effectively the ones calling the shots. Everything is blocked. The AP-HP controls everything, and the whole system is centralised. I honestly don't see any meaningful biomedical research happening in France under these conditions. Instead, we'll just keep getting more bullshit social science research that won't cure any of us.
 
New blog: Andy Burnham and the ME/CFS scandal

Two letters to seventeen years apart.

One from Criona Wilson, whose daughter Sophia was sectioned and later died of severe ME. Another from Olympic sprinter Beth Dobbin, now bedbound with the same illness and raising many of the same concerns.

 
Tom Hill said:
One of the things that struck me about Beth Dobbins’ own narrative of events, which I don’t think I’ve seen commented on yet, is that she clearly had excellent doctors, due to her position as an active Olympian, and they got her to the truth of her disease v quickly.
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I think this can be more down to pure luck than being an olympian. I have a family member on disability with severe ME, who was an athlete at olympian level, prior to becoming ill. She still got a lot of the misinformation the rest of us get. It's some years ago so athlete doctors may know more now, but still.
 
Another great article which is still getting the default response from government
We have published a plan, developed with the ME community, to boost research, raise awareness and support people living with the condition and we are committed to delivering on it.
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Cynical translation: We are committed to delivering nothing for the severely affected and are still not facing the scale of the problem that exists.

What we are asking for in terms of research funding is absolutely insignificant in terms of the amounts just announced in the budget. Setting aside the personal and moral case, funding research is the one thing that has a realistic chance of achieving the thing they say they want, reducing the benefits bill and getting people back to work. That they don’t see this is so incredibly shortsighted and small minded.
 


Post from Beth Dobbin

Hi everyone, I’m new to Bluesky but we’ve been working on something I’ve written a second letter to Andy Burnham, alongside 360 sports people, to urge him to meet with me and fund research into my much neglected health issue which impacts millions of others.

I can’t believe 360 people signed in just 1 week, so many amazing names and messages still coming in of people wanting to add theirs (so feel free to message to add yours, we’re keeping on the pressure!!!)

The list includes 114 Olympians, with 77 medals between them (and that’s not even including Worlds and Europeans ). Also some huge names from football and many other sports!!

Thank you SO much to everyone that signed, I can’t tell you how much it means to me when I’m truly at rock bottom ❤️❤️❤️

I know everyone wants their issues taken seriously, but this has been neglected like nothing else. WE HAVE 0 APPROVED TREATMENTS!!! Please listen @andyburnham.bsky.social @uklabour.bsky.social @10dowingstreet.bsky.social
Post contains signatures on screenshots but I am short on time to add here
 
Axel said:
It seems obvious to me that you cannot study a disease by looking at cases of recovery if you have no data on those who are ill, because you cannot compare nothing with nothing.
As their view is that there is nothing, they have not recovered from anything. I don’t even understand why they insist on commenting, speaking out and raising funds.
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:emoji_kiss:
 
Fizzlou said:


Post from Beth Dobbin

Hi everyone, I’m new to Bluesky but we’ve been working on something I’ve written a second letter to Andy Burnham, alongside 360 sports people, to urge him to meet with me and fund research into my much neglected health issue which impacts millions of others.

I can’t believe 360 people signed in just 1 week, so many amazing names and messages still coming in of people wanting to add theirs (so feel free to message to add yours, we’re keeping on the pressure!!!)

The list includes 114 Olympians, with 77 medals between them (and that’s not even including Worlds and Europeans ). Also some huge names from football and many other sports!!

Thank you SO much to everyone that signed, I can’t tell you how much it means to me when I’m truly at rock bottom ❤️❤️❤️

I know everyone wants their issues taken seriously, but this has been neglected like nothing else. WE HAVE 0 APPROVED TREATMENTS!!! Please listen @andyburnham.bsky.social @uklabour.bsky.social @10dowingstreet.bsky.social
Post contains signatures on screenshots but I am short on time to add here
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Wonderful.
Thank you Beth for starting & all participating in this effort

:emoji_four_leaf_clover:
 
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