Olympic Swimmer

[Megan]

We have had a number of athletes in Australia who have had CFS, the most well known is Alistair Lynch the footballer who wrote a book about it. I think this has done much to help improve awarenwss of CFS in Australia. There is a perception that he recovered because he went on to play football for many years after that. But I read his book and it was quite clear that he was greatly improved but not fully recovered (eg. he could never do the full training the rest of the team did, and I think he mentioned having to sleep for two days after a game).

It seems to me that athletes have the greatest chance at 'getting over' this because when they get it they are generally young, very fit and have access to expert medical advice, amazing treatments (eg oxygen chambers) and their condition is detected very early.

One thing I have noticed is how they are immediately ordered to 'stop everything' and allow themselves to recover. I once remember hearing a politician here who had it too and he said that he was initially given advice, I think via a health Minister, to go straight to be for many weeks or he will never get over it. It seems if you are in the right place with better resource or have the right connections you will get much better advice than the rest of us. I know I was told I was fit to go back to work because my doctor was simply too ignorant about the condition to know any better. I was still really sick after EBV. I often wonder if I had taken time out then whether I would have suffered as I have now.

It also seems to me that CFS is like a game of limbo. I have to live my life below a certain level of activity and if I stick my head too high I will get payback. Some people seems too have their limbo bars much higher or lower than others eg. those beddridden or housbound have very low bars while those able to work have their bars set higher. My guess is that for some athletes their 'limbo bar' might be quite high, so if they stop their sport they might have a greater chance at a normal life.

 

[heapsreal]

I have also read alistair lynch's book which is a good read. I think he had geniune cfs where i think some athletes get overtraining syndrome. Alistair actually replied to an email i sent him about 2 years ago, he's seems like a great guy and i think cfs has helped him to be a humble person as i think other athletes wouldnt even reply to an email. He said to me he has improved quite alot but still has to be careful not to over do things and still has some sleep problems, but i think he's also in a financial position to pace himself properly without having to worry about all the bills coming in. During his football career with cfs he had to make alot of adjustments, i think he even changed positions to one that required less running, he avoided games that involved long air travel as this caused him to 'crash' and was also able to take time off from the game when feeling exceptionally ill. I think because he was exceptionally fit prior to cfs, even a 50% reduction in his fitness would put him above most mortals. He found a way with the help of alot of medical staff from the football club which most of us wouldnt ever get access to.

 

[BEG]

One thing I have noticed is how they are immediately ordered to 'stop everything' and allow themselves to recover. I once remember hearing a politician here who had it too and he said that he was initially given advice, I think via a health Minister, to go straight to be for many weeks or he will never get over it. It seems if you are in the right place with better resource or have the right connections you will get much better advice than the rest of us. I know I was told I was fit to go back to work because my doctor was simply too ignorant about the condition to know any better. I was still really sick after EBV. I often wonder if I had taken time out then whether I would have suffered as I have now.

Many good points made here. I was URGED to cut back when I became ill. That would have been career suicide. I moved a chaise lounge into my office and used it during lunch hours. I came in a little later and left a little early. I worked until my colleagues thought they'd have to drive me home. Why did I do it? The paycheck. Eventually, I left on short term disability. How many of us had the opportunity to go straight to bed for months?

"I often wonder if I had taken time out then whether I would have suffered as I have now." Me. too, Meghan.

 

[Victoria]

I agree with you, BEG,

How many of us have had to continue working because of the paycheck?

(I just kept up the strong black coffee each morning & prescription strength painkillers).

I don't know how many times I arrived late & left early in 2004-2006. There were also the emergency dashes to the local Hospital ER over the years.

I knew over 3 years ago that my working life was coming to an end.

I (literally) worked out how many days before I could quit & access my retirement fund (even though I didn't have enough money in my retirement fund to last more than about 3 years. I have been very lucky to have been awarded a Disability Support Pension a few months ago, which means I can survive financially, with the back up from my retirement fund for any major purchases).

But I may still run out of money in about 8-10 years time & can no longer afford regular treatment (like acupuncture & daily B12 injections).

In the end, I quite literally couldn't do my work at all, & HAD to quit (this year).

I also think many of us invisible chronic illness sufferers (in general, not just ME/CFS/FM), keep/kept working because no one would believe we were ill.

No one understands or believes how one day you can do your job & the next day you can't think straight, walk straight, remember how to spell properly. I've been using "notes", spellcheck, "reminder" messages & so forth at work for years.

I'm so glad to NOT be working now.

I don't have to push myself beyond my limits now.

 

[shiso]

I hope for this young woman's sake that she does not have ME.

Last year, a professional soccer player in his early 20s where I am living was announced in the press as having the disease with no projected return date. But the media later reported he had had over-training syndrome; he was back playing with his team after about 6 months off. I thought to myself - good for him, he didn't have ME after all.

But I agree that it's impossible to say what's going on for a given person with anyone who is diagnosed with this "syndrome," especially in the beginning and especially if they have mild symptoms.

 

[Melodie]

It also seems to me that CFS is like a game of limbo. I have to live my life below a certain level of activity and if I stick my head too high I will get payback. Some people seems too have their limbo bars much higher or lower than others eg. those beddridden or housbound have very low bars while those able to work have their bars set higher. My guess is that for some athletes their 'limbo bar' might be quite high, so if they stop their sport they might have a greater chance at a normal life.

That is such a great way of explaining it. Thankyou!

 

[RustyJ]

I came down with ME in my mid-30s and am very thankful of the full life I led up to that point. It is very distressing to see children and teenagers struck down with the disease before they have had a real chance at life. I think more should be done to highlight ME in children, especially if it is going unrecognised.

 

[*GG*]

Let's help people struggling for disability with info!

The 2 days in a row exercise test should show how disabled we are, correct?

[http://aboutmecfs.org/News/PRJan09Pacific.aspx

 

[SOC]

I came down with ME in my mid-30s and am very thankful of the full life I led up to that point. It is very distressing to see children and teenagers struck down with the disease before they have had a real chance at life. I think more should be done to highlight ME in children, especially if it is going unrecognised.

My daughter is a teen with ME/CFS. It hurts far more than my own illness does. When she was hit with the flare from which she hasn't recovered, she was a kid about to graduate from high school a year early, was accepted at a top 5 engineering school, and had finished all the math (Calc 1,2,3 and Differential Eqns) and chemistry for an engineering degree before she finished high school. A bright and charming girl (if I do say so myself) who had a big future ahead of her. Now what?

She is going to college, but even with all the credits she had before she started, we're not sure she'll be able to finish on time -- or if she'll be able to work as an engineer when she does. She had no life outside her classes because she came home after class and crashed for hours.

We have to believe there's a decent treatment on the horizon for her. Valcyte is helping. We're hoping for the best. But it's heartbreaking to watch....

 

[Victoria]

I am really sorry to hear about your daughter, Sickofcfs.

Young ones like your daughter deserve our sympathy. It must be heartbreaking to see teenagers struck down before they've even had a chance to finish their education (let alone a job or career).

One can only hope that greater research & medical breakthroughs will lead to treatment & cure in the near future to give them some chance at Life & Living.

 

[cfssufferer]

Cate Campbell was one of Australias brightest swimming prospects. Cate and Emily Seebohm were the two Australian youngsters at the Beijing Olympics (both 16 at the time, from memory) who had the most promising swimming futures. It is devastating that Cate may have CFS.

If I was to bet on whether Cate would have CFS in 2 or 3 years time I would predict, no. This is based on the Dubbo study following patients who had EBV and resultant post viral fatigue. Within 4 years almost all of the patients with post viral fatigue had recovered. Hopefully this is the case for Cate.

I was a middle distance runner in high school when I contracted CFS. Every week I ran over 60kilometres and I represented my state on many occasions. Running was my life until I got CFS. Originally I diagnosed myself with overtraining syndrome however it became soon evident that I had CFS and I was diagnosed with CCC CFS. This was 5 years ago and I have now progressed to having severe CFS and am bed bound 24 hours a day. I had a friend at high school who was a state swimmer and he also got CFS.

Many Australian athletes have had their stories in the media regarding their CFS. The most famous one (as mentioned earlier in this thread) is the AFL player Alastair Lynch who had adrenal fatigue. Layne Beachley, the World Champion surfer was also diagnosed with CFS however not CCC. Casey Stoner, the World Champion Moto GP rider was diagnosed with CFS however he was ill for less than a year and returned to Motorcycle racing. A teenager from Perth (I think) was diagnosed with mild CFS and continued to play high level Australian Rules (he hoped to be an AFL player.) A few years ago the former 50m and 100m world record holder in freestyle swimming, Eamon Sullivan was suspected of have CFS however he did not.

The media tend to throw the term Chronic Fatigue Syndrome around haphazardly. They tend to classify those who have CFS as those who have EBV, overtraining syndrome and general fatigue (for less than 6 months.) I cannot think of any famous Australian athletes that have had CCC CFS.

I wish Cate good luck and hope she does not have CFS. I also hope she soon recovers from her post viral fatigue and can then continue swimming.

 

[Victoria]

Layne Beachly, the world champion surfer, was the person whose story I read 2-3 years ago.

Higher achievers & stress seem to come into the news as being a significant trigger or personality type for FM (& CFS?). I wonder how many more athletes (who are not public figures) have come down with this syndrome.

 

[taniaaust1]

The media tend to throw the term ‘Chronic Fatigue Syndrome’ around haphazardly. They tend to classify those who have CFS as those who have EBV, overtraining syndrome and general fatigue (for less than 6 months.) I cannot think of any famous Australian athletes that have had CCC CFS.

My cousin was a very promising Australian Athlete, she at the Western Australia Institute of Sport and had won a scholorship to be there. She was hoping to be part of the Olympic team. She got CCC CFS at 17 or 18 yrs thou, so its destroyed her career at 18 yrs old she was on a Disability Support Pension.

(my cousins case is one of the unrecognised ones of CFS.... her doctors and herself do not believe in CFS and hence she remains with a "undiagnosed illness".. which is the same as my illness).