Woman 'with ME' won world kickboxing championship

[Revel]

I find it so difficult to imagine an individual with ME competing against and winning over athletes who do not have ME, especially at "elite" level. That is quite some disadvantage to overcome.

Even when I once achieved a remission so seemingly complete that I thought I was 100% healthy again, and returned to my favourite physical activities, there was a marked change in my ability to perform at any great level, compared to my pre-illness state. I felt absolutely fine, no PEM or other telltale symptoms but, try as I might, I was unable to improve and remained static at a relatively basic level. In fact, the more I tried to work on my technique and stamina, the worse I would become - I couldn't understand why I was not getting results for all the effort that I was putting in.

For me, it has always been the case that, regardless of whether my ME is waxing or waning, my initial muscle strength may be good but I cannot sustain it, I have a very low level of endurance. Is it possible that athletes like Ruqsana have been blessed with a different muscle structure that allows them to perform at elite level when in remission? How do they keep it at bay so that they can stick to a training and competition schedule? My experience of this illness is that it does as it pleases, no matter how much I plan ahead and take care of myself.

 

[Webdog]

it seems the wikipedia entry has been fixed, to remove the "rare form of CFS" error.

the news article (March 2016) still carries that quaint claim.
http://www.skysports.com/more-sport...-thinks-world-title-win-can-be-a-game-changer

Begum's Wikipedia entry has been updated again. Now it's a "rare form of neurological chronic fatigue syndrome known as myalgic encephalomyelitis". What a mess.

Begum suffers from a rare form of neurological chronic fatigue syndrome known as myalgic encephalomyelitis (ME),[26] which she was diagnosed after she won the British title in 2010. Begum has had to adapt her training to accommodate her condition[4] with a strict diet and training regime.[35][76]

 

[Webdog]

Now there are 2 references to ME on Begum's Wikipedia page. Apparently, Begum once lost a job because her employer, noticing she had just won a world kickboxing title, didn't believe she had ME.

From 2009, she worked part-time, two days a week, as a science technician at Swanlea School in Whitechapel, London.[5][6] But she lost her job after winning the WKA title in April 2017 as they could not understand how she could win a world title if she was suffering a bout of myalgic encephalomyelitis.[27]

Begum is a Muslim[2][45][74] and does not drink alcohol.[29] She is 5 feet 3 inches tall.[75] Begum suffers from a rare form of neurological chronic fatigue syndrome known as myalgic encephalomyelitis (ME),[26] which she was diagnosed after she won the British title in 2010. Begum has had to adapt her training to accommodate her condition[4] with a strict diet and training regime.[35][76]

 

[Sly Saint]

I'm not a doctor but wonder if she has been tested for Sjorgens syndrome (Venus Williams has it).

"Sjogren's is notoriously difficult to diagnose as it presents symptoms common with many other ailments. It is also incurable."
"Symptoms range from joint pain and dry mouth to having a burning sensation in the eyes, digestive problems and fatigue."

http://edition.cnn.com/2014/03/20/sport/tennis/venus-williams-sjogrens-syndrome/index.html

 

[petrichor]

It is fairly plausible that she has ME. Say she's at the level of severity of people with mild ME - ones that are just able to work full time, but are hardly able to do anything else. Nowhere near severe or moderate ME, but, as far as medical conditions go, still very disabling.

If she works two days per week, then that means she could train as much as three days equivalent full time work. She could be doing one equivalent training session per day when she isn't working, which might be split up in lots of ten minutes or so, and then isn't doing anything else for the rest of day. Still much more mild than moderate or severe ME, but still pretty disabling as far as medical conditions go. So I think it's plausible.

 

[arewenearlythereyet]

It is fairly plausible that she has ME. Say she's at the level of severity of people with mild ME - ones that are just able to work full time, but are hardly able to do anything else. Nowhere near severe or moderate ME, but, as far as medical conditions go, still very disabling.

If she works two days per week, then that means she could train as much as three days equivalent full time work. She could be doing one equivalent training session per day when she isn't working, which might be split up in lots of ten minutes or so, and then isn't doing anything else for the rest of day. Still much more mild than moderate or severe ME, but still pretty disabling as far as medical conditions go. So I think it's plausible.

I’m mild and work full time...even if I took 2 weeks off in preparation, 2 minutes of kick boxing would give me PEM...it’s about how strenuous the activity is and its affect on your heart rate...same for running and any other high impact exercise?

I keep seeing conversations on mild ME being different ...this is not the case for me. If I did days on end of training I would quickly deteriorate to housebound and back to not being able to walk etc. I think mild is an unhelpful word and is causing a lot of confusion in the community. Mild to me means that you can stay out of PEM more frequently (with pacing avoiding aerobic activity above your threshold) than someone more severe not that symptoms are milder. PEM for me makes me pretty much immobile for 24 hrs so the 2-5mins of kickboxing wouldn’t be worth it and the 24 hr setbacks followed by deterioration in my condition would make training impossible

 

[petrichor]

I’m mild and work full time...even if I took 2 weeks off in preparation, 2 minutes of kick boxing would give me PEM...it’s about how strenuous the activity is and its affect on your heart rate...same for running and any other high impact exercise?

I keep seeing conversations on mild ME being different ...this is not the case for me. If I did days on end of training I would quickly deteriorate to housebound and back to not being able to walk etc. I think mild is an unhelpful word and is causing a lot of confusion in the community. Mild to me means that you can stay out of PEM more frequently (with pacing avoiding aerobic activity above your threshold) than someone more severe not that symptoms are milder. PEM for me makes me pretty much immobile for 24 hrs so the 2-5mins of kickboxing wouldn’t be worth it and the 24 hr setbacks followed by deterioration in my condition would make training impossible

Well I think there's variation amongst people. Your experience (and mine) isn't the same as everyone else. Maybe she doesn't have ME, but I think it's plausible she could have a kind of ME which is still pretty disabling, but still allows her to do some training.

 

[arewenearlythereyet]

Well I think there's variation amongst people. Your experience (and mine) isn't the same as everyone else. Maybe she doesn't have ME, but I think it's plausible she could have a kind of ME which is still pretty disabling, but still allows her to do some training.

Possibly but highly unlikely given what she can do. The other problem I find disturbing is how being disabled nowadays means you have to do sport to show everyone “how you are beating it”. This is a popular storyline with the non disabled since it’s really about them finding an outlet to feeling uncomfortable about it. It’s the same with cancer..stand up to cancer, week beat this ...it’s all cringeworthy publicity nonsense.

If one were to manipulate the press about ME being cured by exercise..the general public would lap it up .simce they are given a near constant stream of this brainwashing day in day out ...it’s difgicult to avoid. It is a much more comfortable place to be to think that if you do ever suffer from being “disabled” you can wheel yourself fit playing basketball and the like and live your life as if you don’t have anything wrong.

People exercising their way out of ME is such a bullshit story it reeks I’m afraid. It’s a contradiction of the highest order.

The press don’t just happen upon stories like this...most of the time they are placed there. Perhaps it would be interesting to debate the motivations of someone wanting to publicise their story as oppose to getting on with their life and try and bury the fact that they ever had a stigmatising disease?

 

[unicorn7]

The press don’t just happen upon stories like this...most of the time they are placed there. Perhaps it would be interesting to debate the motivations of someone wanting to publicise their story as oppose to getting on with their life and try and bury the fact that they ever had a stigmatising disease?

I agree with this.

I don't want to dismiss people's personal stories or dismiss their suffering, but we really have to be careful about these kinds of stories. I've seen the backlash in the last few weeks in the Netherlands after the health counsel report and start to believe there might be a motivation behind these kind of stories.

In my perspective, with the disease I have, this story is absolutely impossible. I used to be very mild, working full time and the most obvious problem then for me, was that I suddenly couldn't do sports anymore. Or I could do it, but I remember then I described it that I suddenly had no normal training-effect. Normally you train, maybe you are sore the next day, but then the next training session, it's easier, you can push more weight, etc etc. That suddenly stopped happening. Suddenly I could do less the next time.
I can believe that you can and try to do a sport with mild ME.

There is absolutely no way you can get better at your sport and compete with healthy people. I am not saying you don't have problems or are not sick, but we don't have the same thing, that's for sure.

For now (without a biomarker), I am very skeptical about this disease anyway. I think there are a lot of different diseases under this me/cfs tag.

 

[petrichor]

Possibly but highly unlikely given what she can do. The other problem I find disturbing is how being disabled nowadays means you have to do sport to show everyone “how you are beating it”. This is a popular storyline with the non disabled since it’s really about them finding an outlet to feeling uncomfortable about it. It’s the same with cancer..stand up to cancer, week beat this ...it’s all cringeworthy publicity nonsense.

If one were to manipulate the press about ME being cured by exercise..the general public would lap it up .simce they are given a near constant stream of this brainwashing day in day out ...it’s difgicult to avoid. It is a much more comfortable place to be to think that if you do ever suffer from being “disabled” you can wheel yourself fit playing basketball and the like and live your life as if you don’t have anything wrong.

People exercising their way out of ME is such a bullshit story it reeks I’m afraid. It’s a contradiction of the highest order.

The press don’t just happen upon stories like this...most of the time they are placed there. Perhaps it would be interesting to debate the motivations of someone wanting to publicise their story as oppose to getting on with their life and try and bury the fact that they ever had a stigmatising disease?

Yeah, I totally agree with your concerns about the story. I just don't like disbelieving or disparaging people if it's fairly plausible that they do have a condition (which could be ME) and it affects their life significantly.

 

[Inara]

Everyone has another training status. Depending on it - and ME severity - I'd say training is possible or impossible with ME.

Kick-boxing is really a very strenuous sports, I'd say a bit more strenuous than boxing. The training is pretty hard. If you are a professional athlete, competing with others, you have to train on your maximum; of course there are regeneration phases. You most probably have to take certain substances, too ("doping"; I'd say any professional athlete has to dope if he/she wants to be successful; the art is to remain beneath the allowed limit). You always want and have to be a bit better than the others. Someone with ME has one big disadvantage: ME. I admit I cannot imagine how someone with (even mild) ME can be better than athletes without ME.

By definition, ME leads to a decrease in activity level of at least 50%. If you have to decrease your training level for 50%, there are all the others who can maintain their 100% level - and therefore will be better than you. I am absolutely sure of that. I don't think there is a human being with a genetic makeup that allows a 50% level which corresponds to others' 100%.

I agree with @arewenearlythereyet: You cannot train yourself out of ME. ME and professional sports are a contradiction, due to the metabolic specialties in ME. Just my opinion due to my experience and due to what is known about ME.

Apart from that I am very happy for her that she won such an important title. I wish I could train like that again...

Edit: I made the same experience as @unicorn7.

Edit 2: By the way, Venus Williams isn't No. 1 anymore, for a long time. I doubt she could be No. 1 with Sjögren's - although she can still play - for the same reasons mentioned above.

 

[arewenearlythereyet]

Yeah, I totally agree with your concerns about the story. I just don't like disbelieving or disparaging people if it's fairly plausible that they do have a condition (which could be ME) and it affects their life significantly.

I think perspectives on what is disparaging seems to vary.

I can’t see anything disparaging on this thread. If someone wants to ask me for instance detail about my diagnosis and my history and my limitations etc they are free to ask and form an opinion.

If after asking me they form an opinion and think I’m a gobby shite who probably has some mild form of depression then crack on...that isn’t disparaging that’s just their stupid opinion.

The fact that we are asking these questions and showing discretion and skepticism is not disparaging. We are discussing a news story that the subject has willingly put in the public domain. This discussion is also public and anyone can wade in if they want to.

 

[petrichor]

I think perspectives on what is disparaging seems to vary.

I can’t see anything disparaging on this thread. If someone wants to ask me for instance detail about my diagnosis and my history and my limitations etc they are free to ask and form an opinion.

If after asking me they form an opinion and think I’m a gobby shite who probably has some mild form of depression then crack on...that isn’t disparaging that’s just their stupid opinion.

The fact that we are asking these questions and showing discretion and skepticism is not disparaging. We are discussing a news story that the subject has willingly put in the public domain. This discussion is also public and anyone can wade in if they want to.

Whether something is disparaging is up for argument. I do think that some of the comments in this thread have had a disparaging tone (someone did say they hated her), but it doesn't matter. I don't think we should go about deciding that someone can't have ME if it's plausible that they might have it. It's a poor example, too, to everyone that we're trying to get to believe us.

 

[Sly Saint]

By the way, Venus Williams isn't No. 1 anymore, for a long time. I doubt she could be No. 1 with Sjögren's - although she can still play

yes indeed she can still play!
"She has reached 16 Grand Slam finals, most recently at Wimbledon in 2017. She has also won 14 Grand Slam Women's doubles titles, all with Serena; the pair are unbeaten in Grand Slam doubles finals.[19] Williams also has two Mixed Doubles titles."

 

[Inara]

Thanks @Sly Saint!

 

[Webdog]

I sent a message on the Ruqsana-Begum.com website politely asking if she would be willing to share her "strict diet and training regime", or give some tips on how to manage Myalgic Encephalomyelitis symptoms. I'll post if I get a response.

 

[Snowdrop]

Whether something is disparaging is up for argument. I do think that some of the comments in this thread have had a disparaging tone (someone did say they hated her), but it doesn't matter. I don't think we should go about deciding that someone can't have ME if it's plausible that they might have it. It's a poor example, too, to everyone that we're trying to get to believe us.

I don't see it that way. @petrichor every day in all kinds of situations we make judgments based on limited data. It's an important skill to teach our children how to function in life by helping them to take what data there is available and to use the mental tools available to decide whether the data is valid and should be believed or whether there is reason to consider the data suspect. There are even times when having this skill can prove to be a matter of life and death occasionally in the broader context of everyday life.

If a person puts their story out there then they have at least consented to having that story evaluated for it's veracity. While the woman herself may be unaware of ME and the difference between the perhaps not wholly pinned down set of symptoms and inabilities to do things without payback that we have come to know from experience I think it is still OK to opine on whether her story can be really true or not as having had ME.

In other words no judgment to her but judgment of the facts (or non facts) in the story is fair. As people we need to be able to use judgment to ascertain the truth or not of things all the time. Again, in the face of limited facts and decide where the likelihood of the facts lies.

Until there is a definitive test we can't know with a certainty but it's certainly possible to suss out the likeliness of the highly probable.

 

[Andy]

Ruqsana Begum: Muay Thai world champion's difficult journey to the top

Muay Thai world champion. Dutiful daughter. Fastest girl in school. ME sufferer. Wife. Architect. It is difficult to categorise Ruqsana Begum.
....
In 2010, Begum had a shot at becoming the first Muslim woman to hold the Muay Thai British title.

Preparations were intense, but she felt more fatigued after training than she expected to. In fact, she felt she was not recovering from training sessions at all.

For the second time in her life, Begum found she just could not get out of bed, for weeks on end.

"There were days when I was so sharp in the ring and on fire," she remembers. "Then other days I couldn't even walk to the gym. I would come out of the Tube and struggle. I had cold sweats on my forehead and all over my back."

Eventually, Begum was diagnosed with ME, myalgic encephalomyelitis, also known as chronic fatigue syndrome.

This meant the vigorous training Begum was doing was leaving her with no energy. But the British title was still her focus, so she had to adapt.

Begum and her coach put fitness training to one side and focussed on strategy and technique.

It meant she could not truly know what she was capable of until stepping into the ring on the night of the biggest fight of her life. She "just hoped for the best" and it worked.

https://www.bbc.co.uk/sport/mixed-martial-arts/56276628

 

[Helene]

Oh for a biomarker!

 

[Hutan]

Lots of people have been very critical of this woman and have suggested that she doesn't have ME. It's hard to know what we all have of course. But I am not so sure that it's a misdiagnosis.

My daughter dragged herself through national level karate competitions, captained her school rowing team, was a member of her school softball team, studied a language at university level and much more in her final two years of secondary school. But I know that she had the same weird collection of symptoms as my son and I had - it's just that the threshold where PEM would kick in was a good deal higher, even when we all first became sick.

I was there when she'd get in the car beyond exhaustion and would drop into bed unable to speak or eat or change her clothes. I remember the days when she could not get out of bed, or when she would look at her schoolwork and the words would be incomprehensible, or when she would go to school but then fall asleep in class. It was incredibly difficult and she showed enormous courage. I'd hate for someone to suggest to her that she wasn't really sick, or just had over-training syndrome.

(I remember too my GP saying to me how proud she was of my daughter for essentially recovering, and then me going home to cry, because of what that said about the GP's view of my son and I (we remained quite sick). I know my son and I were courageous too - it wasn't a lack of determination that kept us ill.)

For the second time in her life, Begum found she just could not get out of bed, for weeks on end.
"There were days when I was so sharp in the ring and on fire," she remembers. "Then other days I couldn't even walk to the gym. I would come out of the Tube and struggle. I had cold sweats on my forehead and all over my back."

Ruqsana's achievements are, I believe, compatible with having ME/CFS (or, if you like, with having one of a group of similar conditions that all need to be better understood and can't easily be separated with the knowledge we currently have). People like her can be important advocates for ME/CFS because they have a very good idea of how awful it is, but they have energy to advocate and a platform from which to be heard. Rather than rejecting people like Ruqsana, I believe that we should be congratulating them, thanking them for not hiding their ME/CFS diagnosis, and helping them to get the messages right.