Paralympics for people with ME?

[currer]

I used to work (when I was well enough to work) with a young man who had cerebral palsy. He was a good worker, but lost his balance sometimes which meant that he fell over at work. We were doing landscape gardening and maintenance - a physically hard job when done outdoors all day.

He was fine, and able to keep up. He was not sick, but quite fit and strong with plenty of stamina, and he was a friendly and popular worker..
He did not use machinery, though as his balance and coordination problems meant that he was not safe to use dangerous tools.

 

[Firestormm]

Do people with ME work Currer? Could someone with e.g. MS (hypothetically) compete at this level in the paralympics? As I said before - the lack of participation in the e.g. UK team of people with a disease as opposed to physical disability - could also be due to their not being of that level or simply that there aren't any willing to engage at a competitive level in any of the events.

I would be interested to learn if athletic competitions for the disabled make any restrictions to who might/might not compete as I would sport in general. I wonder what the requirements are generally and more specifically for each event at the Paralympics.

Anyway, as I said, it was a theoretical proposition. I wasn't suggesting that someone with severe ME or that you or I for example, would be able to participate because that would be silly. Equally, that the most severely affected with Cerebral Palsy or Multiple Sclerosis or any other disablement in the most severely affected category could (or should).​

 

[justy]

Hi Firestormm - firstly i just want to say i agree with you about the hypothetical nature of this thread, but i think the distinction between sickness and disability is a very important one. Sarah Storey was perhaps already an athlete before coming down with M.E - she was then able to continue to compete at the paralympics due to the limitations of the disease (if you read the story about her linked to above it is a little confusing as to wether she ever competed as a non disabled athlete) I believe it is possible for an athlete who has already reached an international standard and then contracted M.E to go on at some point to compete in the paralympics - of course i have no idea how they would adjust for loss of stamina occuring over days etc.

There is some evidence to suggest that some athletes have come down with M.E and that they are able to atain a higher level of functioning due to their high levels of fitness before falling ill.

As far as Cerebral Palsy goes i would like to say that it is not an illness or a disease but a disability brought on by brain trauma or damage - usually during pregnancy, birth or in the first three years of life.

http://en.wikipedia.org/wiki/Cerebral_palsy

I do not believe it is possible for the vast majority of PWME to take part in sports even with special allowances. I have racked my brains to think of a sport that most of us could compete in and cant see one - perhaps something static in a wheelchair like shooting? even then my arms would tire easily - but i could probably do it. Of course the one major impediment for me would be a lack of desire to shoot things (unless its certain Govt ministers etc!)

All the best, Justy x

 

[duckndive]

Sarah Storey was perhaps already an athlete before coming down with M.E - she was then able to continue to compete at the paralympics due to the limitations of the disease (if you read the story about her linked to above it is a little confusing as to wether she ever competed as a non disabled athlete)

Sarah Storey is a disabled athlete. She has a non-functioning left hand - it became tangled in the umbilical cord in the womb and failed to develop properly. She competes primarily in disabled sport as a swimmer and cyclist but has competed against non-disabled cyclists in the Commonwealth Games in 2010 and narrowly missed out on selection for the 2012 Olympic cycling team.

 

[peggy-sue]

I was incredibly fit when I got ill. I was solid muscle!
Not an "athelete" (I detest competition), but stamina and enjoyment.
I got ill very suddenly (over the space of a few seconds, while in the middle of a great long walk) and have been completely unable to "exercise" since.
Anything involving raising my arms is a no-no.
I ran for a bus once, about 30 yards. It put me out for 3 weeks.

Being really fit may have helped me be less ill than I am, I don't know.
But it certainly hasn't facilitated allowing me to try to get fit again, no matter how well I get!

 

[currer]

Are there any paralympics athletes with Parkinsons disease, multiple sclerosis, cancer, or heart disease?

I used to work for a disability charity. There was sometimes a clear divide between the goals of those members who were wheelchair bound but fit, who had assured benefit entitlement because they were obviously deformed (if I can use such a word, - no-one could have denied that they were disabled) - and who wanted greater access to work and the normal world, from which they were excluded by being wheelchair bound, to their great frustration, -- and those members who were sick, with MS or ME, who needed to have their disability acknowleged and who needed adequate benefit entitlements.

The fit disabled often worked full-time and did not want to be labelled as disabled but to live normally and be treated normally.
The members with ME could not work, and were trying hard to get their disability acknowleged. A full third of our applicants who had benefit problems and who had to appeal against disallowal of benefit had ME and were refused solely because of their diagnosis ofME.

One group looked obviously disabled, were fit enough to work, and resented being treated as "a disabled minority" and were fighting hard for wheelchair access to the workplace and social activities. They could work and get DLA (a disability benefit)

The other group appeared quite healthy, but were fearful of not getting adequate acknowlegement of their (genune) needs and lived in fear of the next benefit assessment.
The group with ME were very limited in what they could do and mostly had given up work.

 

[duckndive]

Parkinson’s Disease

http://www.guardian.co.uk/sport/2012/sep/01/paralympics-2012-great-britain-brazil

MS
http://www.simonlaurens.co.uk/

http://www.mstrust.org.uk/news/article.jsp?id=5514
http://www.nbcolympics.com/wptv/news-blogs/2012/dressage-rider-with-multiple-sclerosis-qualifies-for-2012-paralympics.html

Cancer
http://seattletimes.com/html/localnews/2008587805_morrisonobit04m0.html

http://www.executivespeakers.com/speaker/Josh_Sundquist
http://www.foot.com/site/sports-center/nancy-burpee-paralympic-swimming?content=ai_interview033

Heart Disease
http://www.dystonia.org.uk/index.php/component/content/article/7-about-us/218-paralympics-dressage-champion-diagnosed-with-dystonia

+ lots more easily found.

 

[currer]

I guess we' re all OK then. Just malingering!

No- maybe the distinction is - that these other diseases are medically treatable - in other words the competitors are fortunate in that their diseases are recognised and the effect of the disease can be limited or reversed by successful medical treatment.

This is where the distinction lies, then, - that people with ME are living with an untreated (because unrecognised,) illness.

 

[justy]

And most importantly of all they are living with an illness that precludes physical activity because it exacerbates their disease process. You would really need to be in a remission to be able to compete - but we dont even have the general medical understanding that PWME can have remissions and that for some the illness is realpsing and remitting much like some M.S

 

[peggy-sue]

I was always under the impression that it was boom and bust.
I don't know of anybody who has "remissions" with ME.

 

[Firestormm]

Parkinson’s Disease

http://www.guardian.co.uk/sport/2012/sep/01/paralympics-2012-great-britain-brazil

MS
http://www.simonlaurens.co.uk/

http://www.mstrust.org.uk/news/article.jsp?id=5514
http://www.nbcolympics.com/wptv/news-blogs/2012/dressage-rider-with-multiple-sclerosis-qualifies-for-2012-paralympics.html

Cancer
http://seattletimes.com/html/localnews/2008587805_morrisonobit04m0.html

http://www.executivespeakers.com/speaker/Josh_Sundquist
http://www.foot.com/site/sports-center/nancy-burpee-paralympic-swimming?content=ai_interview033

Heart Disease
http://www.dystonia.org.uk/index.php/component/content/article/7-about-us/218-paralympics-dressage-champion-diagnosed-with-dystonia

+ lots more easily found.

Thanks Duck

I'm wondering if 'something' were to be found and accepted, something that could be seen as 'abnormal' and a justification for our debilitation, something 'more' than what is known at present, that would allow (as Currer said) ME to be 'recognised' for what it is; that even if there was to be no treatment specifically forthcoming - if that knowledge, that visibility - would be enough for some people to fight against? For me to fight against?

I don't know. I guess (or like to think) that if my scans had showed say an inoperable tumour or whatever it was they were looking for way back when - and they'd found 'it' - I would either crumble completely or dig even deeper and fight to make the best that I could from my life.

Not saying that I could have made the grade as a competitive athlete - I'm not the type - but I wonder if such evidence would provide a 'spur' to other people who are/were capable of donning the training shoes in an appropriately catered-for sports discipline?

Some of these Paralympians were - as has been said - born with their disability and others have had to adjust to disability that occurred suddenly or progressively in later life either due to loss of limbs or to disease. What makes us any different? Well there's this whole intolerance of exercise of course - but could that be catered for in any discipline? Sport of course implies use of energy and energy is perceived as the one thing we don't have in ready supply - is that the same for everyone of us all of the time?

And I guess it depends also on further research determining if someone with a biomedical diagnosis of ME (whatever that proves to be) has it for life - i.e. it is incurable but perhaps manageable with treatment/interventions. I think that this might also be a requirement for athletic competition. At present ME (or CFS whatever your preference) is 'sold' as being something you might recover from.

If though research does find 'something' we can point to and say 'Right. I know what it is now. I can fight against it.' and maybe if it is something that does indeed demonstrate ME is a fluctuating condition (similar perhaps to MS) and manifests differently in different people at different severities - perhaps some folk so inclined might well use it as a springboard to 'go for it'.

Unless of course, said research, concludes that exercise should be avoided [period]. But even if it did - even if the risks were known and underlined by the medics - I doubt that it would prevent some from fighting against it as much as they do now. Human nature.

Anyway, thanks. It's been an interesting conversation.

 

[duckndive]

Thanks Duck

I'm wondering if 'something' were to be found and accepted, something that could be seen as 'abnormal' and a justification for our debilitation, something 'more' than what is known at present, that would allow (as Currer said) ME to be 'recognised' for what it is; that even if there was to be no treatment specifically forthcoming - if that knowledge, that visibility - would be enough for some people to fight against? For me to fight against?

I don't know. I guess (or like to think) that if my scans had showed say an inoperable tumour or whatever it was they were looking for way back when - and they'd found 'it' - I would either crumble completely or dig even deeper and fight to make the best that I could from my life.

Not saying that I could have made the grade as a competitive athlete - I'm not the type - but I wonder if such evidence would provide a 'spur' to other people who are/were capable of donning the training shoes in an appropriately catered-for sports discipline?

Some of these Paralympians were - as has been said - born with their disability and others have had to adjust to disability that occurred suddenly or progressively in later life either due to loss of limbs or to disease. What makes us any different? Well there's this whole intolerance of exercise of course - but could that be catered for in any discipline? Sport of course implies use of energy and energy is perceived as the one thing we don't have in ready supply - is that the same for everyone of us all of the time?

And I guess it depends also on further research determining if someone with a biomedical diagnosis of ME (whatever that proves to be) has it for life - i.e. it is incurable but perhaps manageable with treatment/interventions. I think that this might also be a requirement for athletic competition. At present ME (or CFS whatever your preference) is 'sold' as being something you might recover from.

If though research does find 'something' we can point to and say 'Right. I know what it is now. I can fight against it.' and maybe if it is something that does indeed demonstrate ME is a fluctuating condition (similar perhaps to MS) and manifests differently in different people at different severities - perhaps some folk so inclined might well use it as a springboard to 'go for it'.

Unless of course, said research, concludes that exercise should be avoided [period]. But even if it did - even if the risks were known and underlined by the medics - I doubt that it would prevent some from fighting against it as much as they do now. Human nature.

Anyway, thanks. It's been an interesting conversation.

Great post Firestormm! I think there is a small number of people (like Sarah Storey) who will overcome pretty much anything chucked at them. But maybe more people with ME would give sport (competitive or not) a go if there was the validation you talk about.

When I was digging out the links above, on the health forums for the various conditions, there are threads just like this with people discussing whether someone with xyz condition could compete in the Paralympics, when actually they already are. Maybe ME isn't that different after all?

 

[currer]

I think people with ME would be able to compete in sporting activity if their illness were researched and treated.

It appears that the effects of sickness can be limited and retarded sufficiently by medical treatment for "normal" health to reestablish in some people such that they can engage in sport.

So why not in us?

The perversity of our current governments in insisting that ME patients uniquely of all the sick in society should be able to recover without medical treatment.

 

[duckndive]

It appears that the effects of sickness can be limited and retarded sufficiently by medical treatment for "normal" health to reestablish in some people such that they can engage in sport.

I'm not sure that's universally so. For example, Sophie Christiansen competes in the dressage in the most severely disabled category. She suffers from constant involuntary muscle spasms which don't appear to be limited or retarded by medical treatment. It looks painful, exhausting and frustrating and it's all the more remarkable that she takes part in a sport which is all about control when she has so little over her own body.

 

[SOC]

I was always under the impression that it was boom and bust.
I don't know of anybody who has "remissions" with ME.

Depends on what you mean by "remission". This is from Wikipedia and fits the common definition of remission I've heard used.

Remission (medicine), the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity

The push-crash cycle, or the up and down nature of ME/CFS is a different thing, IMO. There probably are people who vary between fully functional and impaired on a timescale of weeks or months, but those of us with moderate to severe ME/CFS aren't usually fully functional even at our best times.

There are several people here at PR that have reported long remissions. My uncle is currently in a ~5 year remission. My daughter has been in remission for a year. Both of them are able to do everything they could before they came down with ME/CFS. My daughter isn't swimming as fast as she used to, but we think she's just de-trained from several years of continuous illness. We are very aware that they could become ill again and my daughter, at least, is still cautious about her health.

Perhaps what most of us mean by "remission" with ME/CFS is an extended period of being fully functional, with the awareness that one could become less functional at some point in the future.

 

[currer]

I'm not sure that's universally so. For example, Sophie Christiansen competes in the dressage in the most severely disabled category. She suffers from constant involuntary muscle spasms which don't appear to be limited or retarded by medical treatment. It looks painful, exhausting and frustrating and it's all the more remarkable that she takes part in a sport which is all about control when she has so little over her own body.

Sophie Christiansen does not appear to be sick, but disabled and otherwise healthy.She was born with cerebral palsy.

It is a very common fallacy to believe that if you try hard enough you can succeed in solving the most impossible problem.
e.g. curing yourself of a broken leg, by simply trying hard enough to walk on it. And keep on trying to walk on it until you succeed.
This is ridiculous.

Similarly a sickness whose main characteristic is that making efforts to do things,(any things) - makes the disease worse, cannot be fought against by making greater efforts.

The concept that effort will always overcome disadvantage is a fallacy that can be encompassed in the phrase "the triumph of the will" which is also the title of a film by Leni Riefenstahl, illustrating Nazi philosophy.
http://en.wikipedia.org/wiki/Triumph_of_the_Will

 

[currer]

This is also the fallacy at the heart of the British Tory government and is the justification for removal of welfare benefits from the sick and disabled.

 

[currer]

It is no coincidence that George Osborne turned up at the paralympics to associate himself and
his party with "heroic" disabled athletes and got booed by the audience which understands better than he what disability really means.

 

[currer]

This has been a very useful thread in that it has exposed some fallacious thinking about disability which goes uninvestigated and unquestioned.

1. There needs to be a clear distinction drawn between the fit and healthy disabled, and the sick, who are unfit.
This distinction is not made as part of the disability benefits assessment process. It needs to be made, as it is relevant to what a claimant can realistically achieve.

2. The point is never clearly enough made that people with ME, uniquely among the sick disabled category, are medically untreated.
No wonder that when they try to return to work thay risk worsening their illness and relapsing.

I was present at an enthusiastic talk given by a member of Ian Duncan Smith's staff. She was most eager to say how much better off we would all be if we all returned to work as soon as possible. She utterly disregarded or was totally ignorant of the fact that ME patients are medically untreated.

Other patients with illnesses who do suceeed in returning to work are receiving medical treatment from their doctors. If these other diseases were left untreated too, these people would be no more successful than we are in making a useful recovery.

It cannot be emphasised enough that the untreated sick cannot be expected to recover.

3. The assumption that if you try hard enough you will succeed, and that success should be rewarded and failure punished, lies behind all the current right wing ideologies.

Rather than empowering the disabled, events like the paralympics can be used to change public opinion to imply that the sick and disabled who do not succeed are not making enough effort hence there is political justification in destroying the welfare benefit system for both fit and sick disabled.

4. Our current right wing politicians' ideology is too simplistic to deal with reality.

Some individuals, at some points in their illnesses may be able to make striking achievements.
That cannot be extrapolated to include everybody and all cases. Illness is complex, and complexity is what our current politicians have no patience with.

 

[duckndive]

Oh dear. Godwin time.

The psychology of sport interests me whether able-bodied or disabled and this discussion was thought-provoking for me and others.

Thanks to all the other contributors for your insights.