Famous (and sort of famous) ME/CFS sufferers

[heapsreal]

Supposedly chronic mono doesn't exist which is why cfs was invented ? ???????

 

[mango]

Update on Robin Söderling.

According to this open letter that was published earlier today, he's no longer hoping to make a comeback but considers his pro tennis career to be over.

ME/CFS is not mentioned, he only writes about mono/glandular fever and overtraining syndrome. ("I've had to rest after all physical exertion", "Certain periods of time I've been so ill that I've been completely bedridden", "Unfortunately, my recovery after exercise is still not working like I would like it to").

In Swedish:
http://tennis.se/2015/12/23/R2gCPw-soederling-avslutar-karriaeren-laes-avskedet-haer

 

[BurnA]

Update on Robin Söderling.

According to this open letter that was published earlier today, he's no longer hoping to make a comeback but considers his pro tennis career to be over.

ME/CFS is not mentioned, he only writes about mono/glandular fever and overtraining syndrome. ("I've had to rest after all physical exertion", "Certain periods of time I've been so ill that I've been completely bedridden", "Unfortunately, my recovery after exercise is still not working like I would like it to").

In Swedish:
http://tennis.se/2015/12/23/R2gCPw-soederling-avslutar-karriaeren-laes-avskedet-haer

Yes - I find it hard to understand exactly what his diagnosis was /is. He seems to be able to exercise to some extent which is a big improvement from bed ridden. But no mention of me/cfs.
Mono induced fatigue combined with over training ?

 

[mango]

Yes - I find it hard to understand exactly what his diagnosis was /is.

In an earlier interview, October 2014, the reporter is saying that the doctors are calling it "post-viral fatigue or chronic fatigue syndrome" ("kroniskt trötthetssyndrom" in Swedish), and Söderling doesn't object.

 

[heapsreal]

Yes - I find it hard to understand exactly what his diagnosis was /is. He seems to be able to exercise to some extent which is a big improvement from bed ridden. But no mention of me/cfs.
Mono induced fatigue combined with over training ?

He's had it a few years now, well past a normal mono case.

I think many pro athletes can exercise when they have cfsme although not to pre cfs levels. A 50% decrease in fitness for some professionals is still greater than an average healthy person .

Not much is said about his treatment but these pro athletes have drs around them all the time. Early treatment even if just supportive may have helped.

 

[snowathlete]

He's almost certainly got ME from the sounds of things, but is wary of saying it. Probably being advised not to say it in fact. We do need well known ppl to come out though so if it is ME I hope he comes out about it. Celebs with the disease are in a position to do something to change things in a way most patients can't.

 

[Biarritz13]

I am so sad, he was like a model of recovering for me...

I can imagine when you are at that level you deal with a lot of pressure from fans, sponsors, maybe from investors since he found a company. From being top 4 in the world to being out because of a stupid mono, it's so hard to swallow.

I really hope he will do a difference and help the ME/CFS community at his level.

 

[BurnA]

He's had it a few years now, well past a normal mono case.

I think many pro athletes can exercise when they have cfsme although not to pre cfs levels. A 50% decrease in fitness for some professionals is still greater than an average healthy person .

Not much is said about his treatment but these pro athletes have drs around them all the time. Early treatment even if just supportive may have helped.

A 50% decrease in fitness does not define me/cfs. A lot of sporty people in the off season would experience a 50% decrease in fitness.

He didn't have early treatment - he said he continued to train and play.
And while support may make you feel better it won't have any impact on a virus or disease in you body.

 

[heapsreal]

A 50% decrease in fitness does not define me/cfs. A lot of sporty people in the off season would experience a 50% decrease in fitness.

He didn't have early treatment - he said he continued to train and play.
And while support may make you feel better it won't have any impact on a virus or disease in you body.

Im not sure of his full story. But early treatment for cfsme could easily be a couple of years. Support and rest has to help, if one doesnt with cfsme than their condition can greatly worsen , its added stress to the body as a whole.

In australia we had a top class australian rules football player come down with cfsme. He was very high profile and one of the best in his era, probably better if he didnt have cfs. His training was highly restricted and basically paced himself were he may walk a couple of laps at training and some weeks no training at all. If i recall correctly he changed positions to reduce the amout of running he had to do but it still would have been a very active position. Occassionally missed games but he still played quite alot of football, games which last 2 hrs. He would crash the rest of the week most times . I know he used ice baths alot, before it was popular and electrolyte supplements and occasionally iv infusions.

He (alister lynch) wrote a book about his experience and he stated he was lucky generically to be so fit. Even without training he could play australian rules football for upto 2 hrs. Most top pros in any sport are genetically gifted to be fitter and probably more resistant than most , probably have a better pain tolerance especially after playing football for so many years, not soccer type football but body contact football.

I have no doubts he had cfs. He was disgnosed by dr whiting, the cfs guru dr in australia at the time as well as seeing cfs specialists in america.

He did have a special set out plan to cope with cfs. One i recall was he didnt play if it required over a certain time period of flying to get to a certain destination . He mentions how being financially secure made it much easier to rest and probably had most of his needs taken care of etc. Very different to most of us. But he was that good that he didnt need to train and his club kept him on as even when he was 50% he was better than most.

I made contact with him several years ago after he had retired . He says since he has stopped he has improved but still has to be careful not to overdo things and still as sleep issues and requires sedating tricyclics to help sleep.

I'm just saying genetics can help one function better with cfs then others even if cfs was equal, if something like that could be measured. I also think alot of sportsmen wouldnt know what treatments drs gave them but just trust the dr and take what he's told.

 

[BurnA]

Im not sure of his full story. But early treatment for cfsme could easily be a couple of years. Support and rest has to help, if one doesnt with cfsme than their condition can greatly worsen , its added stress to the body as a whole.

In australia we had a top class australian rules football player come down with cfsme. He was very high profile and one of the best in his era, probably better if he didnt have cfs. His training was highly restricted and basically paced himself were he may walk a couple of laps at training and some weeks no training at all. If i recall correctly he changed positions to reduce the amout of running he had to do but it still would have been a very active position. Occassionally missed games but he still played quite alot of football, games which last 2 hrs. He would crash the rest of the week most times . I know he used ice baths alot, before it was popular and electrolyte supplements and occasionally iv infusions.

He (alister lynch) wrote a book about his experience and he stated he was lucky generically to be so fit. Even without training he could play australian rules football for upto 2 hrs. Most top pros in any sport are genetically gifted to be fitter and probably more resistant than most , probably have a better pain tolerance especially after playing football for so many years, not soccer type football but body contact football.

I have no doubts he had cfs. He was disgnosed by dr whiting, the cfs guru dr in australia at the time as well as seeing cfs specialists in america.

He did have a special set out plan to cope with cfs. One i recall was he didnt play if it required over a certain time period of flying to get to a certain destination . He mentions how being financially secure made it much easier to rest and probably had most of his needs taken care of etc. Very different to most of us. But he was that good that he didnt need to train and his club kept him on as even when he was 50% he was better than most.

I made contact with him several years ago after he had retired . He says since he has stopped he has improved but still has to be careful not to overdo things and still as sleep issues and requires sedating tricyclics to help sleep.

I'm just saying genetics can help one function better with cfs then others even if cfs was equal, if something like that could be measured. I also think alot of sportsmen wouldnt know what treatments drs gave them but just trust the dr and take what he's told.

I am not sure exactly what you are saying. You say support and rest has to help yet you then say this person continued playing sport at a high level. Doesn't sound like rest to me.
There will always be exceptions and outliers so we shouldn't get too hung up about one or two individual cases.

I believe some people can function differently than others with me/cfs but to imply this has to do with Dr.s administering unknown drugs or even fitness level or support is a very big stretch. Some people get hit worse than others and no doubt being physically fit may help, but we dont know if that has any factor in severity.

 

[digital dog]

Most of these people seem to get better. This doesn't correlate with ME statistics.
I don't understand...its not like they rested as they all seem to be dong very demanding jobs.

 

[Aurator]

I'm just saying genetics can help one function better with cfs then others even if cfs was equal, if something like that could be measured. I also think alot of sportsmen wouldnt know what treatments drs gave them but just trust the dr and take what he's told.

The sport you play, as well as how seriously ill you are, has something to do with whether you can continue participating at some meaningful level.

If you are involved in a game-type sport, whether as an individual or as part of a team, the only critical test of your performance is whether you win the match or not. In other sports such as athletics, where your performance is measurable in terms of the time it takes you to travel a certain distance, it is simply not possible to be physically compromised and for it not to have an effect on your placings compared with before you became ill. It's not just a question of not being up to it on the day of a race; you can't skip training as Lynch did and hope you'll get away with it. If you can't train at the usual intensity, and, more importantly, recover with the usual ease, you will be dead meat on race day.

 

[heapsreal]

I am not sure exactly what you are saying. You say support and rest has to help yet you then say this person continued playing sport at a high level. Doesn't sound like rest to me.
There will always be exceptions and outliers so we shouldn't get too hung up about one or two individual cases.

I believe some people can function differently than others with me/cfs but to imply this has to do with Dr.s administering unknown drugs or even fitness level or support is a very big stretch. Some people get hit worse than others and no doubt being physically fit may help, but we dont know if that has any factor in severity.

You sound great at taking things out of context.

As u said people function differently, im saying genetics can play a part in this and most athletes have better genes than normal type people.

As for unknown drugs, unknown name of the drug to the patient. Im sure it would be much easier for a high level sportsman on some multi million dollar contract to get prescribed an antiviral or immunoglobulin than it would be some normal type person. Also easier for a sports pro to get iv fluids for orthostatic issues than normal people, how many here have hit a brick wall just to get a bag of salty water intravenously . He wouldn't be asking for the above treatments like we would have to but he would be either told or advised to take certain treatments .

I guess im saying the multi million dollar contracted player has medical staff come after him as the club has put a big investment in him. For us normals, we are chasing medical staff to treat us and while going through all this sort of bs we educate ourselves and learn about these treatments we can only wish for.

In reguards to playing high level sport doesnt sound like rest, no it doesnt, thats why he would be crashed out all week alot of the time. He was going through massive push crash issues like most that continue to try and work. But he was resting way more than any footballer would be. Its comparing apples, not apples to oranges.

I cant exactly recall the criteria but it mentioned a loss of greater than 50% of their normal function. He would have lost more than 50% easily as was only out of his bed or off his lounge for a few hrs a week, althpugh at a very physical level.

If he was made to train like other football players than he would have been retired due to cfs. I think the way they helped Lynch manage and pace himself got him through his career. If you ever read his book you will see they went out of their way to help him. Most players would have been sacked but he was able to function and push himself for 2hrs a week.

 

[heapsreal]

The sport you play, as well as how seriously ill you are, has something to do with whether you can continue participating at some meaningful level.

If you are involved in a game-type sport, whether as an individual or as part of a team, the only critical test of your performance is whether you win the match or not. In other sports such as athletics, where your performance is measurable in terms of the time it takes you to travel a certain distance, it is simply not possible to be physically compromised and for it not to have an effect on your placings compared with before you became ill. It's not just a question of not being up to it on the day of a race; you can't skip training as Lynch did and hope you'll get away with it. If you can't train at the usual intensity, and, more importantly, recover with the usual ease, you will be dead meat on race day.

Lucky he was playing a team sport i guess . As the story goes he couldn't train and recover but on game day his genetics/skill got him through, theres nothing else to get him through. And they won 3 grand finals , so he must have been pulling his weight on game day.

 

[meadowlark]

She's not famous, but she's a notable person--Freida Hughes, daughter of poets Ted Hughes and Sylvia Plath, has M.E. A friend of mine in Britain told me there was a piece about her in The Sunday Times last week. She's been living in the Australian outback.

 

[Sing]

I would like to see that piece in The Sunday Times if you could get a link. Thanks--

 

[meadowlark]

I would like to see that piece in The Sunday Times if you could get a link. Thanks--

It's behind a paywall, unfortunately. My UK friend says she doesn't talk about the illness itself, but about her feelings for Australia and how the solitude M.E. brought her (well, living in the outback also brought solitude, I suppose) helped her to find peace. That's all I know. But I was just intrigued that she spoke freely about having M.E. to the Sunday Times, which has published some appalling stuff about us.

You can see the top of it here: http://www.thetimes.co.uk/article/f...ife-in-a-remote-australian-bungalow-q8ppql08n

 

[Sing]

@meadowlark Thank you so much. Just reading that much and knowing of the lives and poetry of her parents, the sense of torment each of them felt and expressed in life, I am feeling that their daughter, also faced with a very difficult and isolating condition of a different sort, is having the courage to live well, authentically and honestly, within its terms.

Our lives are placed within a great mystery--which a wilderness expresses. The context for life is so much bigger than anything we can ever know or control. The culture we live in, however, promotes a different expectation, that we can control life and do not have to be subject to overwhelming events and real suffering. If something very bad happens, I think we tend to believe it ishouldn't have happened, it s someone's fault, someone should be able to fix it. Maybe we are taught to think the problem will fix itself, go away, or it isn't even real.

But to be able to say, this is my life, these are the conditions I have been dealt, how can I live authentically, as well as I can, within it? That takes an independence, humility and courage that we often have not been taught or supported to have. We in America are supposed to be the avatars of the other point of view--supposed to be narcissistic powerhouses, living to public acclaim, brought to us by tv and mass media. But is that the best response to the vastness, unpredictability and diffiiculties of life? The courage of someone, anyone, finding her way and living in some way well, even within limitating and painful conditions, is something I celebrate.

 

[Mrs Sowester]

@Sing there was an article in the Guardian about Freida Hughes this weekend, here's a link if you haven't come across it yet...
http://www.theguardian.com/lifeandstyle/2016/may/28/frieda-hughes-i-felt-my-parents-were-stolen

 

[panckage]

I tried tweeting the lead singer from Belle & Sebastian about the #MillionsMissing thing but he never posted about it.... Maybe he didn't read the message who knows?

Anyways if a bunch of us alert these celebrities to the #MillionsMissing campaign they can help us spread the word!