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

[Chandelier]

It seems like if there was ever a case with as much detailed data as you could want, this would be it. .. I realize it would only be N=1 case study, and that she would have to want to provide that data and participate.

Well, there's Oonagh Cousins and I know of at least one more former top athlete that had her career destroyed by Long Covid:
When the whole Marlen Reusser story (explained here) was in the news, there were also stories about Selina Büchel who hasn't recovered.
Büchel is a former European champion in the 800 metres.
From articles from 2024, machine translated:

Walking instead of pushing herself to the limit: How Long Covid has changed the life of a former elite athlete

Former European 800-metre champion Selina Rutz-Büchel has been living with Long Covid for three and a half years. The illness has changed the daily life of the 33-year-old—and her perspective on a society that values performance. src (paywall)

Long Covid robbed her of her Olympic dream

Selina Rutz-Büchel was a two-time European indoor 800-metre champion. But after contracting Covid in 2021, every attempt to return to competition set her back. Her story shows the damage the virus can do to an athlete’s career. src (paywall)

 

[BrokenBeaktheBrave]

Well, there's Oonagh Cousins and I know of at least one more former top athlete that had her career destroyed by Long Covid:

Oonagh has said in interviews that it was precisely because of the stark contrast in her data that her team (coaches, doctors, physios, performance analysts etc) insisted she stop training. Her team doctors and exercise physiologists etc said that there's clearly something wrong with her and she needs to rest.

 

[Trish]

I wonder whether it's feasible for a scientist to gather some of these athletes' data, analyse it, and write it up as a paper to be published in a medical science journal.

 

[V.R.T.]

I wonder whether it's feasible for a scientist to gather some of these athletes' data, analyse it, and write it up as a paper to be published in a medical science journal.

If it is people on here might know the right person for the job

 

[Mij]

I wasn't an elite athlete, but I've been a long distance runner up to my ME days. I continued running during my sudden viral onset, PVFS, but didn't experience PEM or delayed PEM. I just felt flat after my run for over a year. It was odd. My stamina started dropping after Hep B vaccines. I didn't start getting delayed PEM or cognitive issues until 6-7 years later after ART.

I was dx by an ME doctor as "atypical".

 

[hotblack]

I was never athletic. I mainly used to walk, like a lot. And as I’ve mentioned before I also lived in the tropics as well as more temperate places. So 15k through a jungle or a day marshalling at the Singapore GP in overalls was as fine as a walk along an English seaside or country path. I walked to and from work everyday pretty much wherever I lived.

But I had got into running in the years before I got ill and went from being able to do 5k no problem and feel invigorated after to doing so less and then being broken after 500 then 50 and then 5m in a matter of months.

I think things like that, the time in hospital I had, the fact I was a young man and a few other things meant I wasn’t immediately dismissed as some are. And with the usual pushing you need to navigate the NHS along with some private payments I did get things like cardiac and infectious diseases investigations. Ending up on the floor in waiting rooms gets people’s attention too.

But as soon as things turn up all clear and you get the ‘post viral’ or ‘cfs’ label that’s it. You’re done for. Being so ill you can no longer push yourself to get in front of a doctors face to make a point also helps the out of sight out of mind mentality. It looks as if Beth and everyone else no matter their profile seems to have experienced that side of things.

That we see it so often with people with ME/CFS in comparison to other conditions is another reason to me it seems clear where the problem here lies.

 

[hotblack]

That is one thing.It highlights the variability of the impact. She was affected by a disease but some of the time she could still perform competitively. Sometimes not. Whatever prevents activity is central and fluctuating: not blood vessel pathology in muscles for instance. Not autoantibodies in the blood, I think.

The ups and downs of sorts in the year(s) leading up to everything finally giving up is an interesting one. I had a clear ‘nail in the coffin’ event but also a fluctuating period beforehand in a way. And I didn’t have what I’d call ME/CFS or PEM in that preceding period. But I did have periods I could do stuff fine and periods I couldn’t.

It’s why I have had difficulty always being clear on when my illness started and what triggered it. I can definitely set a latest point when it started and what may have triggered it, but I am not against the idea it started some time earlier and was triggered by something else. If that makes sense.

I wonder how much that’s the case and the infectious onset we see is more that final thing that tips people over the edge vs the thing that starts the downwards oscillation? Perhaps we have and see both?

 

[Robert 1973]

That is one thing.It highlights the variability of the impact. She was affected by a disease but some of the time she could still perform competitively. Sometimes not. Whatever prevents activity is central and fluctuating: not blood vessel pathology in muscles for instance. Not autoantibodies in the blood, I think.

I wonder if that initial fluctuation was only noticeable because she was an elite athlete. As far as I understand, the course of her illness has been initial fluctuations followed by a decline to being consistently severe.

Other people describe ongoing fluctuations where they have good days or parts of days where they feel well and bad days. That has never been my experience. I have days when I can do a bit more than others but since the onset of my ME/CFS symptoms I have never had a moment when I’ve felt well or been able to do anything like a normal amount of activity.

I’ve always wondered whether people who describe marked fluctuations which include feeling well at times, have a different mechanism or whether that is determined by quantitative variations of the same mechanism.

As I’ve said elsewhere, I suspect I may have had a prodromal phase before the sudden onset of my severe ME/CFS symptoms and I wonder if that might have been picked up at the time if I had been an elite athlete with all the monitoring that involves.

Reading Jonathan’s responses to patients’ descriptions of their histories emphasises to me the need for expert physicians involved with research to be seeing patients and listening to them to try to figure out what might be going wrong. The clues are there.

 

[Tom Hill]

Whatever prevents activity is central and fluctuating

 

[neophyte32]

That is one thing.It highlights the variability of the impact. She was affected by a disease but some of the time she could still perform competitively. Sometimes not. Whatever prevents activity is central and fluctuating: not blood vessel pathology in muscles for instance. Not autoantibodies in the blood, I think.

Yes, exactly the same thing happened to me.

Before I became ill, I used to run regularly. I had already experienced a very strange episode in January 2022, which I now consider to be the real starting point of my illness. I developed paresthesias all over my body, along with temporary paralysis of my right quadriceps. It felt as though my nervous system had suddenly suffered some kind of shock.

A year later, after two COVID infections and discovering that I had Lyme disease, I experienced another particularly significant episode. In March 2023, while I was out running, I suddenly felt something switch inside my body. As if someone had flipped a switch. A few hours later, I experienced my very first panic attack.

For more than a year afterwards, my condition fluctuated in ways I simply couldn't understand. Some days I could still run, other days I couldn't. And when I did run, I would sometimes experience extremely strange symptoms: dizziness, a feeling of heaviness in my head, overwhelming panic, and an unusual tightness in my chest. Looking back, I suspect these were probably manifestations of dysautonomia.

In the evenings, after these episodes, I often had enormous difficulty falling asleep, with extreme nervousness, as though my nervous system had become stuck in a constant state of alert. This went on for over a year.

However, weight training had become completely impossible. I could no longer push, lift weights, or perform any movement that caused even the slightest sensation of pressure inside my head. The smallest increase in that pressure would immediately trigger a reaction resembling PEM, almost instantaneously. It was incredibly confusing, especially since I could sometimes still go running.

Then, when my illness became severe, everything changed. Running or weight training was obviously no longer an option. At that stage, you no longer experience those fluctuations associated with exercise, simply because you're no longer capable of making that kind of effort. You remain ill, even at rest.

 

[Rick Sanchez]

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.

 

[Tom Hill]

I wonder whether it's feasible for a scientist to gather some of these athletes' data, analyse it, and write it up as a paper to be published in a medical science journal.

Given one of the biggest things holding back me/CFs research — if we’re being real and fully honest — is very clear and pervasive prejudice, this would be a great study designed to present data impervious to said prejudice.

 

[Jonathan Edwards]

Not trying to derail the thread. But isn't this the experience of many?

What I find interesting is the record we have of someone already ill having times when muscle function is so normal she could run a competitive race at international level. And other times not.

 

[V.R.T.]

I have had difficulty always being clear on when my illness started and what triggered it. I can definitely set a latest point when it started and what may have triggered it, but I am not against the idea it started some time earlier and was triggered by something else. If that makes sense.

I wonder how much that’s the case and the infectious onset we see is more that final thing that tips people over the edge vs the thing that starts the downwards oscillation?

I feel this way too, I think it's quite common from talking to other pwME.

Would do sports 3-4 times a week 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.

During my prodromal phase and especially when mild it was a toss up when jamming with others or playing live whether I would play well or whether I would play sluggishly and without the dexterity/fluidity I was capable of back then. Some of that will have been nerves or being a bit rusty, but it was pronounced, especially after definite onset.

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.

This was my experience. 3-4 months where it felt like it was helping overall even if it wiped me out (but looking back things were getting worse, I attitbuted the signs to other stuff) and I was gaining strength slowly, before the catastrophic crash that took me to moderate and deteriorating toward severe.

 

[Jonathan Edwards]

I wonder whether it's feasible for a scientist to gather some of these athletes' data, analyse it, and write it up as a paper to be published in a medical science journal.

I can see that being a tough and frustrating exercise, trying to gather data that mostly may no longer be on record, although these days almost everything gets logged on a computer. I agree that it would be valuable if someone had the energy to undertake it. I can think of one or two people who might take up the challenge. I wonder if Oonagh Cousins has any data kept?

 

[Jonathan Edwards]

How many elite athletes likely to have VO2 max data or equivalent do we know of?

 

[Tom Hill]

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.

What I find interesting is the record we have of someone already ill having times when muscle function is so normal she could run a competitive race at international level. And other times not.

In my experience this was the great curse of mild ME/CFS. I was well enough to be back at work and even able to perform at a high level. And then I suddenly couldn’t. I would have no sense of when or why those drops in ability to function would happen. It turned me into a very unreliable colleague in a field where team work and reliably following up are essential. Worse, I was leading the work, so me showing up and being on my A game was often vital to the work progressing. As someone who is conscientious and careful about sustaining my professional reputation this was quite devastating.

Very different situation to an athlete in the Olympics, and yet, sort of the same pattern.

And, yes, I kept using my ability to work out on a bike or in a swimming pool as a benchmark of how I was doing, in a GET style philosophy. Like everybody, I got that completely wrong. This is because ability to exercise was not, I now think, the central mechanism at fault.

 

[Robert 1973]

I wonder if Oonagh Cousins has any data kept?

I’ve reached out to Oonagh to bring this discussion to her attention.

 

[Mortal Machinery]

How many elite athletes likely to have VO2 max data or equivalent do we know of?

All of them.

Edit: I think I may have misunderstood the question. They would all have the data. You were maybe asking for a list of how many former athletes have ME?
There have been 3 mentioned in this thread.

 

[Mortal Machinery]

What I find interesting is the record we have of someone already ill having times when muscle function is so normal she could run a competitive race at international level. And other times not.

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.