Paralympics for people with ME?

[Purple]

How about a standing still competition? You know, along the lines of a POTS test. I just don't know if we should designate the winner as the person who passes out first, or the person who passes out last.

We could also do the Stevens Protocol discipline. Again, the question is who wins: the person with the lowest or the person with the highest VO2 max on the second day.

 

[alex3619]

We could also do the Stevens Protocol discipline. Again, the question is who wins: the person with the lowest or the person with the highest VO2 max on the second day.

How about the person with the biggest decline?

 

[urbantravels]

Ow, that hurts just thinking about it. (One thing they told me when I was at the Pacific Fatigue Lab is that when they do studies, they have a hard time getting the sedentary controls to work as hard toward maximum effort as the ME/CFS subjects do!)

I might medal if the event were the POTS Tachycardia Tilt Table Sprint - how fast can your heart rate go up within the first five minutes?

I would take home gold medals for the USA if there were events in Bitching, Grousing, Nitpicking, Bitterness and Pedantry.

 

[peggy-sue]

What about the ability to stay awake for days, despite being in a comfy bed, in the dark and quiet and having taken sleeping meds?

 

[Firestormm]

I think I agree with you !?

What I was trying to get at was that performance by people with chronic illnesses could (with a degree of imagination) be categorised in a comparable manner as currently used in the Paralympics - there's a simple listing here: London 2012 Paralympics: The complete Paralympic sport classification guide showing how the system works.

IVI

Morning,

This was really what I was trying to get at I think. If it were possible why shouldn't people with ME compete in such games alongside others with chronic (or otherwise) conditions? A hypothetical scenario.

Would there ever come a time when people with ME felt more confident to be more open about their abilities as well as their disabilities?

Esther I do remember that there was a young lady (can't recall what the programme/documentary was exactly) who had ME and who played Badminton. I think it was a documentary about benefits though I can't swear by it. Anyway, the reception this received in certain quarters from other patients was rather harsh I recall as here we had a young lady who did not surrender her passion for this sport but had accommodated her disability as best she could. If I recall she used a wheelchair to play/or at least to get from her car to the event. There was more I'm sure but the old grey cell is really not helping me this morning despite a few days break from internet

 

[Snow Leopard]

What will the rules be regarding performance enhancing drugs?

 

[ixchelkali]

Lying still with no stimulation, no lights or sound. Most people would crack pretty quickly, but I think that's one where people with ME/CFS could excel.

 

[ixchelkali]

Ooooh, I thought of another one we'd be good at: jumping through hoops set by the medical establishment. And how about interpretive red tape gymnastics?

 

[sianrecovery]

I've just read an article about a woman competing, name escapes me, no memory games for me, who says she has just recovered from chronic fatigue syndrome.

 

[duckndive]

It's Sarah Storey.

http://uk.lifestyle.yahoo.com/screaming-pain-sleep-163050535.html

 

[Firestormm]

I'm not sure what you are asking. People with "disabilities" that have missing limbs or physically challenged CAN compete since they are not ill.

Do people with illnessess also compete in the ParaOlympics?

I was watching/listening to the paralympics coverage yesterday again and cerebral palsy was again a feature in the horse competitions I believe where 'we' (UK) got another medal. Also I seem to remember that 'we' have a cerebral palsy football team competing also. Just thought I'd mention as I've been unconsciously listening out for 'neurological' and disease-related competitors.

 

[Firestormm]

I'm not sure what you are asking. People with "disabilities" that have missing limbs or physically challenged CAN compete since they are not ill.

Do people with illnessess also compete in the ParaOlympics?

I was watching/listening to the paralympics coverage yesterday again and cerebral palsy was again a feature in the horse competitions I believe where 'we' (UK) got another few medals. Also I seem to remember that 'we' have a cerebral palsy football team competing also. Just thought I'd mention as I've been unconsciously listening out for 'neurological' and disease-related competitors.

http://www.telegraph.co.uk/sport/ol...ld-and-standing-ovation-for-super-Sophie.html

Triple gold and standing ovation for super Sophie

She said she wanted to let the results speak for themselves and Sophie Christiansen did just that as she became the first British triple-gold medallist of the Paralympic Games.

 

[justy]

This is an interesting thread. The problem is that they dont seem to have people competing who have a chronic illness, as opposed to a disability with no chronic illness. They dont have categories for those with cancer, heart failure or diabetes and they are also disabling. I agree with the blogger linked to earlier on in the thread that there is a difference between having a chronic illnesss AND being disabled by it and having a disability.

I use a wheelchair part time, but couldnt compete in any wheelchair sports due to the fatigue and PEM brought on by using it in this way.

All the best, Justy x

 

[Firestormm]

Hi Justy,

As I said before - though my OP didn't really explain it very well I don't suppose - it was really a theoretical notion. Let's say though that someone with Multiple Sclerosis was able to compete - was at that ability level of an international Olympic athlete in the relevant class - I don't believe (haven't read but would be happy to hear) that paralympics or any competitive disabled sport generally excludes people with a disease rather than say an amputation. See my last post for example.

The thing is with this level of ability, there may not have been any (many) athletes that were disabled by disease who attained that level. Does that make sense? So generally speaking I don't believe that if - hypothetically speaking - someone with ME who had been able to adapt to their chosen sport and was able to attain that level would be excluded.

Of course there is an argument (perhaps) that one of the key symptoms of ME is the adverse reaction to exercise that we generally all experience - to differing levels and degrees - but (more hypothesis) what if the 'cause' of ME (exactly ME) was found and it did not automatically mean e.g. exercise = a 'no no' don't do it don't even think about it?

I mean we all I think agree that at present we are 'lumped' together by a similar set of reported symptoms. We don't know what effect exercise can have on every single one of us or if the effect of exercise is an inherent disease response. Anyway, it's all rather a moot conversation as we don't have any athletes of this standard whose primary diagnosis is ME (in whatever way shape or form we might think that it takes). Well unless you consider the British swimmer who appears to have had CFS (at least was diagnosed with it and who are we to argue).

It is an interesting discussion nonetheless

Perhaps I should have asked: Under what circumstances would a person with a primary diagnosis of ME become a Paralympic athlete?

 

[duckndive]

Well unless you consider the British swimmer who appears to have had CFS (at least was diagnosed with it and who are we to argue).

I'm not aware of any British swimmer who appears to have CFS. Sarah Storey is a cyclist and has been since 2005 when she switched from swimming.

http://uk.lifestyle.yahoo.com/screaming-pain-sleep-163050535.html

 

[duckndive]

Perhaps I should have asked: Under what circumstances would a person with a primary diagnosis of ME become a Paralympic athlete?

By meeting the qualifying standard for their particular sport and being selected for the team.

 

[urbantravels]

One wouldn't say that all chronic illnesses affect a person's physical capacity; but many of them do. A person with an incurable lung disease or a person with a heart defect, for instance, are in much the same boat that we are, in the sense that their aerobic capacity is permanently limited. In our case, the limitation is occurring on a cellular level; it's more obvious and easy to see in someone who can't breathe well enough to get sufficient oxygen to their muscles, or whose heart does not have the ability to circulate their blood at a normal capacity.

Another way to look at certain types of chronic illness is that the ill are being perpetually re-injured every moment. A Paralympic athlete who at one point lost limb(s) had a long, long recovery process before they could even be fitted for a prosthetic, and still longer to train as an athlete. But our injury process is unending, and is made more severe by more physical effort. A person can't heal from a broken bone if they're required to get up and dance on it all day. Now imagine a person with an incurable brittle bone disease who has broken their leg, and they have to get up and dance on it every day. Not only will the original injury not heal, it will become worse, and other injuries are very likely to occur.

The analogy with ME/CFS is that for us, "dancing" is the simple act of using energy in order to live and move. And as we all know, we cannot train ourselves out of that situation.

 

[currer]

Firestormm, you have started this thread following a false premise.

A person can have a severe physical impairment (such as loss of limbs) and be otherwise fit and healthy.

People with ME are sick. This is the basic distinction that has not been made, and needs to be clearly made.

This confusion also exists in the DWP benefit assessment forms for disability benefits.

They do not distinguish between those with a discrete physical impairment, but who are fit, and may benefit from, and want to work, or engage in sport, once adequate adjustments are made for their physical impairment, - and those claimants who are sick, and whose sickness will be exacerbated by activity.

In the case of the DWP I think the confusion of two separate categories of disability is a deliberate one, designed to make it harder for the sick to get disability benefits. Sickness and disabiluity are their business and they will be well aware of the distinction to be made between the two separate groups.

 

[currer]

Did anyone see that George Osborne (chancelor of the exchequer and party to the recent cuts in disability benefits) was booed by the paralympic crowd when he attempted to present a medal?

here it is if anyone wants to see it.http://www.guardian.co.uk/sport/vid...-booed-paralympics-video?INTCMP=ILCNETTXT3487

http://www.guardian.co.uk/politics/2012/sep/04/george-osborne-booed-paralympic-games?intcmp=239

 

[Firestormm]

Cerebral Palsy? How does that one compute then Currer? See previous post about Sophie Christiansen and I believe I have stated several times the hypothetical nature of this thread. Thanks.