the hare and the tortise
lebowski,
I like that statement you made that to avoid doing anything is to 'do no good'. So maybe this is a problem that goes back to the basics. If a physician sees something they do not know how to treat, should they do no harm by doing nothing, because if they do that they will also 'do no good.' The only doctor who has ever significantly helped me was a 'Functional Medicine' MD, who really tried to do some good while at the same time doing no harm. He really listened to me and while he never found the cure, he both did some good and did no harm.
The problem with many alternative therapies, even from MDs, is that they sacrifice the 'do no harm' part in order to 'do some good'. We are in a difficult position with CFS. For one thing I have noticed many PWC are type-A personalities (myself included) which means they want to 'do something always' and that does not work well with an illness like CFS.
So what can we do? I think CFS is a race between a hare and a tortoise. Be the tortoise and you will probably live longer. We can learn to manage symptoms, change what we must in our lives to allow us to have some quality of life. Probably that means reducing some expectations but also finding something positive we can contribute to society. Get out of denial about what CFS really means, accept it and then look for therapies that are likely to 'do no harm' as jenbooks suggests, as well as 'do some good' as you suggest. I believe there ARE therapies out there that meet both of those tests. I have found just a few that seem to help me and cause no problems, such as daily Vitamin C, positive self-talk, a few simple herbals, a little low-level activity daily (anaerobic only), etc. Probably even if we all have XMRV much of this will not change, maybe we will need to exchange ideas with AIDS patients who do not tolerate drugs well, what have they found both does some good and does no harm...
"Untried methods promoted by nonscientists should be viewed with extreme caution"
and what u suggest ?
wait for the official cure of cfs ? ten years maybe ? or if xmrv is not the cause people r looking for then what ? wait for , 20 years ? 30 years ? ..
what if fredds b12 protocol is a working one for example .. do u know any university making trials for it and shall get results in near future ?
or should ppl want fredd have an official research education first to try his protocol ?
untried mustnt mean unpromising .. and there r ppl who tried mms .. altough i have no idea if it can work for anyone , my intension is certainly not to defend mms or even fredds or rich vans .. i just want to say , discouraging ppl for alternative treatments , say it rife or herbs or anything , without a try , will do no good for pwc .. while the option is waiting for an official cure especially while there r so much conspiracy and speculation around about the cover ups by the governments which supposed to do that official work to uncover chronic fatigue syndrome
What I suggest is "first do no harm." A lot of people including me were seriously harmed by some of these protocols, which had a patina of science, were promoted by nonscientists, and were actually dangerous.
lebowski,
I like that statement you made that to avoid doing anything is to 'do no good'. So maybe this is a problem that goes back to the basics. If a physician sees something they do not know how to treat, should they do no harm by doing nothing, because if they do that they will also 'do no good.' The only doctor who has ever significantly helped me was a 'Functional Medicine' MD, who really tried to do some good while at the same time doing no harm. He really listened to me and while he never found the cure, he both did some good and did no harm.
The problem with many alternative therapies, even from MDs, is that they sacrifice the 'do no harm' part in order to 'do some good'. We are in a difficult position with CFS. For one thing I have noticed many PWC are type-A personalities (myself included) which means they want to 'do something always' and that does not work well with an illness like CFS.
So what can we do? I think CFS is a race between a hare and a tortoise. Be the tortoise and you will probably live longer. We can learn to manage symptoms, change what we must in our lives to allow us to have some quality of life. Probably that means reducing some expectations but also finding something positive we can contribute to society. Get out of denial about what CFS really means, accept it and then look for therapies that are likely to 'do no harm' as jenbooks suggests, as well as 'do some good' as you suggest. I believe there ARE therapies out there that meet both of those tests. I have found just a few that seem to help me and cause no problems, such as daily Vitamin C, positive self-talk, a few simple herbals, a little low-level activity daily (anaerobic only), etc. Probably even if we all have XMRV much of this will not change, maybe we will need to exchange ideas with AIDS patients who do not tolerate drugs well, what have they found both does some good and does no harm...