Woman 'with ME' won world kickboxing championship

...while suffering a bad bout of ME...
Click to expand...
Clearest indication it was not ME. How many people here would ever describe their condition as "a bad bout" of ME. It was no doubt a nasty case of chronic fatigue of some kind, but it was not ME/CFS.

As I said on PR some time back (and bearing in mind it is my wife who has ME not me), I went through a quite long period of what I used to describe as being "flaked out" and "fuzzy headed" quite a few years ago now, and used to wake up feeling like I'd never been to bed. But I never felt it to be ME, and no one ever suggested it was. As a completely unrelated activity, I started cycle commuting to work, and suddenly realised 6 months down the line I was much better. But like I say, I'm sure I never had ME - never had real physical exhaustion; never had PEM. But, if I'd been asked to describe my feeling of "fatigue" (a.k.a. feeling knackered as I used to say I felt), I would probably have scored it quite high, even though my physical capabilities were unimpaired - apart from being unfit prior to cycle commuting.

When I look back to how I was then, compared to how my wife is now, there is a crucial difference. I still had my physical capabilities; otherwise I could never have taken on a hilly cycle commute of 14 miles a day in the first place. My wife wouldn't have a cat in hell's chance, the physical capability is not there; it used to be though, we used to walk all over Dartmoor, The Lake District, South Downs, etc, and my wife had her own gardening business ... until she was struck down with ME.

But, and this is very pertinent, I think it highly likely EC and Co would have readily swept me up into their "chronic fatigue" net, conflated it with with ME/CFS, and then triumphantly proclaimed how my exercise regime had cured my ME :rolleyes:. I really don't think they realise how profound the distinction is! And as a consequence I suspect they really do believe they are fixing people with ME ... "It's all the same thing" I'm sure they think, and "these agitators just think it's something different". They really just don't get it.

As a slightly amusing aside, and gives a clue I suppose to how unused to exercise I was, on my first day of cycle commuting (having car shared for many years previously), I decided I'd better stoke up on fuel well, before embarking on my new energetic activity. So I did myself a good fry up, in grand English breakfast style. Later, halfway up one of the hills, I had to stop and came perilously close to throwing up at the roadside! Rapidly learned my lesson that that was not the right way to prepare for my cycle commute :p.

Edit: Re-reading this, makes me realise what a desperately misleading name, as so many others have already said, Chronic Fatigue Syndrome is! Because in citing my own experiences above, I would have described myself as feeling very fatigued, even though my physical capabilities were still fine. No wonder it's such a b*lls up!
 
Last edited:
I'm concerned about people trying to diagnose someone else's illness - we can't possibly know the full story. It's not the fault of the young woman in this article that she may have been misdiagnosed. We need to be careful about judging people.

It's a great pity, however, that articles like this perpetuate the misconception that ME is something that can be treated successfully with determination and diet.
 
Trish said:
I'm concerned about people trying to diagnose someone else's illness - we can't possibly know the full story. It's not the fault of the young woman in this article that she may have been misdiagnosed. We need to be careful about judging people..
Click to expand...
I agree 100%, and I should have clarified in my post above, but thought I'd written enough. I don't apply any judgement whatsoever on the lady who is the subject of this article, and it's a pity if I give that impression. I'm sure she really does believe she had ME, along with other people involved. I was really meaning to say simply that I do not believe she had ME, and in no way meaning to imply she was deliberately misleading people; I think it far more likely she has also been misled, in turn very likely by people who also have genuinely confused the diagnosis. It's a diagnostic minefield.
 
@Trish you’re right and I didn’t intend to give the impression I was (or even have the competence to) giving her a diagnosis. I absolutely do not blame that poor woman for being sick and tired, and I agree we don’t know the full story.

Like many others I felt the need to vent when once again it becomes so very apparent that neither doctors, journalists or anyone else know anything, and won’t make the effort to know anything, about ME as opposed to fatigue. It’s not even something I can really blame them for, I didn’t have a clue until I got sick myself.

It’s still aggravating and I appreciate that we have somewhere to share that feeling with others who get it. It contributes to the perception that you can just “fix” yourself, like when my sister called me yesterday to tell me of her friend’s mother who had “cured” lots of people with ME at her acupuncture clinic.
 
Trish said:
I'm concerned about people trying to diagnose someone else's illness - we can't possibly know the full story. It's not the fault of the young woman in this article that she may have been misdiagnosed. We need to be careful about judging people.

It's a great pity, however, that articles like this perpetuate the misconception that ME is something that can be treated successfully with determination and diet.
Click to expand...

I agree. I thought @erin 's post was not at all fair.

Lots of people with a range of different levels and types of health problems end up with a diagnosis of ME, and it's good to try to be supportive of all. It's good to challenge misinformation, but that should also be done cautiously and with an awareness of how much uncertainty there is around ME/CFS. When there is so much misinformation out there, I expect that at some point or other we've all been responsible for some spread of misinformation ourselves.
 
I don't believe she has ME. I still have high respect for her.

She says all she needed was a strong will. Well, every training person has this. I daresay me, too. That doesn't change that I feel like crap during training/going for walks; it just means I bear the pain longer, often too long; before my diagnosis far too long and far too often, ignoring all the signs.

Wonko said:
Boxing - much, much less ME friendly than strength training, even when no one's trying to hit you
Click to expand...

That's my experience, too. Endurance training is very hard for me now. :(
 
just to add my 10 cents ... she might have gradual onset ME ...

- - - - -

i had POTS at age 19-23; caught mononucleosis / glandular fever / epstein barr virus at age 21; for the next decade i had intermittent problems with my health, that included episodes of *severe exhaustion* that required bedrest.

then at age 32 i caught a virus (enterovirus ? coxsackie ? arbovirus ?) that knocked me sideways, took nearly 18 months to recover, and thereafter i had more frequent episodes of *severe exhaustion* that left me bedbound for 1-4 weeks. despite these episodes of *severe exhaustion* (identical to severe PEM), i was able to be very physically active - doing the equivalent of 2 triathlons a week.

eventually i became too sick to work, and was diagnosed with ME/cfs, Canadian Consensus Criteria, meeting ALL of the criteria. i was severely harmed by GET, and still stuck at about 20-30% of 'normal' function.

- - - - -

my point is this - after my last big virus, and before my ME became severe, i was still able to do a lot of vigorous activity - despite lots of obvious neurological problems, that i didn't recognise until much later. if i had been this woman, competing in her sport, my comments might be identical - congratulating myself for 'pushing through', not realising i was setting myself up for a future health disaster. she mentioned 'anxiety' that kept her bedbound - perhaps she had POTS, which most doctors would misdiagnose as anxiety, because of the high HR.

so maybe she does have ME. or a mild early stage of ME.

some people with MS can compete in marathons. they still have MS.

- - - - -

for responsible journalism, i think the article should have clearly specified where she is on the ME scale, and clarified that most people with ME are much more severely affected, and that exercise is severely harmful for them.

[edited to add] to be honest, when i was in that intermediate stage, exercise seemed to help me, and definitely left me euphoric - i suspect my strong leg muscles helped pump more blood, which lessened the impact of POTS & OI.
 
Last edited:
Moderator note: This post and the post below have been merged from a similar thread

"A British Bangladeshi woman who tackled a strict religious upbringing, escaped a disastrous arranged marriage, and was then diagnosed with a debilitating health condition - all before becoming a kickboxing world champion."

"
Her fighting career suffered a further setback in 2010 when she was diagnosed with ME (Myalgic Encephalomyelitis), an illness she says she has been able to manage with a strict diet and training regime.

"My coach told me to see a specialist when we realised after one good training session I'd be in bed for a month," she said. "I knew I was not a lazy person, so something had to be wrong."

full article here:
http://www.bbc.co.uk/sport/boxing/43431693
 
Last edited by a moderator:
Sounds like a rehash of last year's interview (see below). She's hoping that Hollywood will pick up the story if she gets enough publicity. Would love to hear in greater detail about the "strict diet and training regime" that allowed her to manage her ME but, alas, all articles so far gloss over this aspect:

https://www.s4me.info/threads/woman-with-me-won-world-kickboxing-championship.1340/

My current level of fitness is such that I was defeated by an A4 envelope this morning, so there is clearly some way to go before I am able to emulate her lycra-clad example ("Can't fight her way out of a paper bag" and all that . . . :rolleyes:).
 
Last edited:
Superwoman overcoming ME (at least that's the narrative of the story) back in the news again. I wonder what her "strict diet and training regime" consists of?

http://www.bbc.com/sport/boxing/43431693
BBC Sport said:
Her fighting career suffered a further setback in 2010 when she was diagnosed with ME (Myalgic Encephalomyelitis), an illness she says she has been able to manage with a strict diet and training regime.
Click to expand...

BBC Sport said:
"My coach told me to see a specialist when we realised after one good training session I'd be in bed for a month," she said. "I knew I was not a lazy person, so something had to be wrong."
Click to expand...

BBC Sport said:
Barriers that my have stopped many in their tracks were smashed to pieces by the determined fighter who dreamed of world honours.
Click to expand...
 
Last edited:
This is difficult because it often kicks off a cycle that ends up being bad for everyone.

I have no idea what illness this young woman had / has. It is certainly different from my experience of ME.

For arguments sake let’s say she doesn’t have ME, and was poorly diagnosed. Well...this isn’t her fault. Most people until experience proves otherwise wants to put their faith in doctors and trust them. It’s still my default stance, even after all the rubbish experiences I’ve had.

So a doctor tells you, you have ME, and when you look up the symptoms they seem to broadly fit. If you don’t have ME, but some kind of self-resolving burnout or fatigue, this isn’t your fault. The problem comes that when with the best will in the world you offer words of encouragement about ‘overcoming’ ME in the press, the knock-on effect is that onlookers may think that all patients can just overcome the illness, and patients read the comments with dismay and may feel hurt by it. And again, this is rarely done with intent by the patient.

I had a similar experience recently when a friend of a friend was said to ‘have ME’ for 2 months but was ‘just coming out of it now’. We know so little about this illness that I was unable to comment, but instantly thoughts turn to “well if she was just in bed for 2 months and now recovering then why have you been in bed for over a year?

My point is that poor diagnosis and knowledge about the illness = everyone loses.
 
The face of M.E. (managed with a strict diet and training regime). :unsure:



Edit: Replaced with better youtube video of the match.
 
Last edited:
JohnTheJack said:
In Times this morning. Posted for information. It is a sympathetic article by Broadbent.
Click to expand...

JohnTheJack said:
I agree with all these comments. Definitely a case of a retweet but not an endorsement.
Click to expand...
Sorry I don’t understand what you mean by a sympathetic article. Usually that means something is written about ME that shows how life limiting it is or the stigma patients face or lack of research and treatment options.
 
Begum's Wikipedia page has info from a Sky News article:
Wikipedia said:
Begum suffers from a rare form of chronic fatigue syndrome known as myalgic encephalomyelitis (ME).

https://en.wikipedia.org/wiki/Ruqsana_Begum
Click to expand...

The orginal quote was:
Sky News said:
Begum has overcome the odds to get to this stage in her career, winning two World Championship medals despite battling a rare form of chronic fatigue syndrome known as ME.

http://www.skysports.com/more-sport...-thinks-world-title-win-can-be-a-game-changer
Click to expand...
 
I am confused by the statement that she suffers from a rare form of ME/CFS. Given the fact that no one has managed to clarify subgroups which are clearly distinguishable from each other, let alone identify 'rare forms', I find this puzzling.

Given also the amount of physical training and employment she sustains, I can only assume it must be mild. I hope for her sake all this activity doesn't push her into severe relapse.

I would never question someone else's level of disability or diagnosis, but I do worry that this will mislead readers, just as I used to worry about telling people I had ME when I was still able to work part time and people didn't see the bad times or how much I was pushing through pain and debility.
 
You must log in or register to reply here.
Back
Top Bottom