Discussion in 'Other Health News and Research' started by Firestormm, Oct 4, 2013.
Shouldn't this be in the 'other' research news section? It's got nothing to do with ME.
Mod Note -- thread has been moved to the 'Other Health News and Research' forum.
From a quick glance it looks like a media report on the study I cited in this thread.
There is no question that exercise is beneficial in a wide range of illnesses and problems. Exercise and good diet are key to health. Yet this message, particularly in its more simplistic form, is over-sold, as are dietary messages. Simplistic interpretations of these messages can create problems, as we well know for ME and exercise.
I'm well aware of the benefits of exercise.
I would love to be able to do any.
Lol peggy-sue, me too. I used to get running dreams long before Forrest Gump came on the seen. I miss exercise. If I could figure out a way to do it safely I would be exercising regularly. So many think we are exercise averse ... I dispute that, I think most of us are just averse to the bad consequences we get from exercise.
I get running dreams too. They're my favourite dreams.
Maybe not, but I think it does have a lot to say about the way in which medical advice is proceeding; and about the tsunami we are up against when it comes to advocating that ME is different or needs more personalised consideration.
The research itself may not be about ME, but if you were to do a similar analysis of what has been published, I wonder if the results would be any different? The exception being of course that there aren't any 'pills' for ME.
It was Mum that alerted me to this BBC report (it had been repeated on the TV) and they do love to sensationalise. Of course for Mum - with her Rheumatiod Arthritis - this was anathema. Just as I suspect it is to every single person living and struggling with a chronic (largely untreated) health condition that prevents them from doing what they want to do.
Her concern - and mine - was that when she sees her doctor this evening, not only will be try to reduce her medications, but that he will do so whilst trying to encourage her to exercise more to compensate.
She said how it the days before medications people would suffer and do even less, and now we have medications (for some things) to help with management, the powers that be are so focused on cost that they will as often as not 'negotiate' with the patient before prescribing - or before issuing a repeat.
'Just GET out and exercise' is now the mantra for all chronic complaints, not just ME, but we have an enormous battle and one that might need more than repeat exercise testing.
I've not read this paper, but perhaps it could be read as showing how ineffective a lot of drug treatments are. Over the last few years, I've come to suspect that a lot of the claims made about the efficacy of treatments are pretty exaggerated/spun/dishonest.
Recent research I read was saying the antidepressants should only be used in very severe cases - that that is the only situation where they do help a lot. They're not particularly effective in mild cases, for which counselling (I did not say CBT)
and exercise are better.
However, exercise is only fun when you are fit. Getting fit isn't much fun.
Not only that, but the mechanisms of antidepressants are not known, serotonin is not the "happy chemical" and they (all types) have vile side-effects.
despite a 90% reduction in what I could do, I actually found I could embrace the challenge of increasing that 10% ability I had.
I'm somewhere between 60% - 70% reduction from when I was well.
I can do slow stuff. I cannot do anything aerobic without serious consequences.
I once ran 25 yards to catch a bus. (early on, before I knew better)
It laid me out for three weeks.
I need "exercises" that get housework and laundry and cooking done....
If a short run like that had that effect on me I'd be saying I had a 99% reduction in my ability.
Oh..... I find even a 25m walk a problem later. Meh.
Edit - BUT I am grateful that I CAN still walk, that I CAN get out for coffee, and that I have an amazing MOBILITY SCOOTER so that I can "walk" my dogs!!
Artstu, if somebody is at 99% reduction, they are bed-bound and tube-fed in a dark silent room - if they are lucky enough to have somebody to care for them in that position.
I am, realistically, at somewhere between 60-70% reduction.
I don't see it like that at all, 25 yards multiplied by 100 is only 1.4 miles, so perhaps I should have said a 99.9% reduction in ability. That's more like it actually 0.1% ability at 25 yards is 14.2 miles if my maths is correct.
So how reduced would a bed-bound, tube-fed PWME be?
80% of all the food a normal-weight normally-active person eats, fuels keeping the body going.
Only 20% of that calorie load fuels everything they do.
So, most of humans' "activity" is involved in just the running of the body.
You need to take that into account when calculating % reductions.
Somebody at 99.9% reduction is probably already dead.
OK, a 99.9% reduction in walking ability. other living activities are not so easily measured are they.
I've never found percentages helpful, precisely because of the issues raised in the discussion here. I think it's impossible to define our disability by a percentage. And any percentage we use can be misleading.
I agree with Artstu that saying we have a 70% reduction in capacity can give a misleading picture of health, suggesting that we have full capacity for 30% of the day, or that we can do normal things but we can only walk 30% of the distance that we used to be able to.
I used to be able to do a 75 mile cycle in a day, and now I can't cycle any distance without experiencing symptom exacerbation, so what does that mean in terms of a percentage reduction in capacity?
Equally, I agree with peggy-sue, in that saying we have a 99% reduction does tend to suggest that we are bed bound.
Maybe we need to invent another system for defining disability?
The problem is if we are trying to pace we need to take ALL the effort our bodies struggle with, just to stay alive, into consideration.
I used to shower and wash my hair every morning.
Now, I can only manage once a week - it is a major activity.
I could do it every day, but I wouldn't be able to do other essential things - such as get a meal together.
That does not make me one 7th of what I used to be - just 6 times dirtier than I used to be.
Life is balancing this business of "robbing Peter to pay Paul."
You can also try a Google Site Search
Separate names with a comma.