I responded to a post in a friend’s LiveJournal, in which she talked about a friend of hers who has just been diagnosed with chronic fatigue syndrome. Her friend was very upset that my friend didn’t believe there is a cure for fibromyalgia or CFS (at least, there isn’t one right now). This is part of my response.
I think that the fact that there’s finally acknowledgment from the CDC and the like that CFS is real, and research proving that FMS is real and showing a genetic link, is very promising. That greatly increases the probability of research being done that might find a cure or at least decent treatments.
But no, I don’t really look for a “cure” for either disease. I think the best we’re going to see for some time is better treatments for the symptoms. I’m fairly certain that both diseases will be found to be genetic weaknesses triggered by environmental conditions that damage the nervous and/or immune systems. Gene therapy may be able to repair some of that damage. Maybe. Germline therapy might offer our descendants the possibility of not passing the genetic weaknesses on to their children.
But—not expecting a cure doesn’t mean that I don’t pay attention to the research and the latest information available about treatments.
I think hoping for a cure, in some ways, can be a way of trying to shift responsibility for how we proceed to the medical establishment. If there isn’t one coming, the only improvement we’re going to experience is what we manage with what’s available now. The improvements we make in how we eat, move, sleep, interact, etc. are up to us, and they can make a huge difference. We can get some relief from currently available medications by working with our doctors. We can use various techniques to improve our cognitive functioning or prop ourselves up despite fibro fog. And if we aren’t sitting around waiting for somebody else to hand us a cure, we’re more likely to do those things.
At Last someone else with a positive attitude to having a ‘non-curable’ illness – so many people with Fibromyalgia spend their lives not only dominated by the illness but also wasting valuable living time searching for the elusive ‘cure’. Maybe my tips might help on my blog at
http://disabledwithfibromyalgia.blogspot.com
Of course there is no “cure” for a disease that is barely recognized, and certainly not understood by the medical profession. People do go into remission though, sometimes indefinitely. Are they cured? Until we know what is causing CFS and FMS, we won’t really know. I agree that having a positive and open attitude is a good idea, if you don’t want to be miserable all the time.
Our way of life is causing these “so called” diseases. Do not look for a bacteria or any genetic anomalies. The symptoms could be identified as causes in this case. So, do not make that mistake. We have to think again if CFS and FMS are diseases or just symptoms.
I is said that prevention is better then cure. The disease never attacks immediately but always first symptoms appear and this is the proper time when precautionary measures should be taken to save one self from the illness. The professionals can only differentiate whether CFS and FMS are diseases or mere symptoms.
Titus has his point. There is a lot of imaginary disease invented for the single purpose of making money. Take obesity, for instance, and you’d see every single drug for it (like xenical for an example) has a indication for diet and sports as a related treatment.
Stop and think a little. “People go into remission”; we’re not talking miracles here, aren’t we? I belong to the non believer side. I don’t really believe CFS is a disease. Well, not a common one you can buy online prescription for it. It is something about cause and effect. When the causes disappear people goes into remission. Unfortunately we don’t know the causes for sure.
If you’re a “non-believer,” Sylvy, why are you here? If, at least, you mean that you don’t believe CFS/ME exists.
Saying that CFS has a cause doesn’t mean that it isn’t a disease. Polio is a disease, and there’s certainly a cause for it!
When the cause of a disease “disappear,” though, the victims do not necessarily “go into remission” or immediately get well. Their bodies have been negatively affected by the disease, and in many cases the damage will be evident in some way, large or small, for the rest of the patient’s lifetime. They may have to be careful to monitor their energy, or avoid certain triggers, or wear braces on their legs, even after they are “well.” That doesn’t mean that their illness didn’t happen.
There is quite a lot of proof regarding the existence of CFS/ME now&mdashenough so that the Centers for Disease Control has finally acknowledged it, years after the reast of the world’s medical community did so. I suggest that you update your information regarding the search for a cause.
Is CFS deadly? It surely shortens your life..doesn’t it? And what are the symptoms?
I don’t know that CFS has been proven to shorten the length of most people’s lives, although I’ve heard of one death attributed to it. It certainly affects the quality of life, and I know of suicides caused by that fact.
Most people with CFS/ME will show some improvement over time, especially with treatment. Some people recover in less than two years, while others remain ill for many years. However, health and functioning rarely return completely to previous levels. Most people who recover stabilize at a lower level of functioning than that before their illness. In some cases the condition is severe and/or persists for many years. Those who have been affected for several years seem less likely to recover.
Hey Cynthia,
I came across your blog while researching information regarding fibromyalgia and CFS, more specifically the quaility of life patients experience on a day-to-day basis. I thought you might be interested to see this article from a company called Kingfisher since treatment of these diseases is rarely discussed and is a topic you have covered in the past.
Hope you find it interesting and worthy of discussion 🙂
-Scott
Hi Scott. I would have liked to have read the article, but the link didn’t work.
Thanks,
Cyn
oops sorry about that…here it is again. hopefully that works
CFS is deadly. But maybe we should concentrate more on the cause. Maybe the drug companies should tell us more about the adverse effects of some of their products.