Why Medical Research Isn't The Answer
I follow many CFS groups on twitter, and the majority of them seem to advocate for medical research. Indeed, many sufferers are "waiting" for medical research breakthroughs and lobbying
for more funding for research. My suggestion to them was to study those that had recovered. What steps did they take to recover, what recovery looks like to them, (i.e. were they able to return to their previous life, levels of activity?), and how long they remained in remission. Of course, this was deeply unpopular.
My suggestion was, and is, to do your own research. Find people who have recovered, chase them down, and find out what worked for them. Find out if their recovery is complete. And then take those same steps that they did! Be persistent, and focus your attention on recovery, rather than symptoms.
By nature, CFS is very disempowering. The symptoms are debilitating, medically unexplainable, and unpredictable. It's easy to fall into a "victim mindset", because it causes people to feel they have no control over how they feel, and they are physically and inexplicably unable to function in their lives. It's like some unseen and inexplicable force has drained them of their energy and physical resources. Peoples lives become smaller and smaller. Indeed, feeling powerless is part of the disease itself. What I find so often with other bloggers and sufferers is this...I have (CFS/ME/FIBRO etc) so I can't do the things I want/need to do. They start to identify with the illness, and live with the label as victim or sufferer, which only perpetuates and reinforces symptoms, and the limiting lifestyle that comes with them. Creating an identity around an illness becomes one more hurdle to overcome on the road to recovery.
It's my own opinion that medical research is a very long ways away from finding a cause and cure. Medical research focuses primarily on symptoms, rather than causes of symptoms...for example, there was a recent research study that showed that gut bacteria in CFS patients was altered, but the focus was on the gut, not on why gut bacteria was altered. (could it be because the gut doesn't work properly in people who have CFS ...rather than they are missing certain microbes in the gut?) Another popular study suggests that people who have CFS have mitochondrial dysfunction...so the focus is on mitochondria...but not why there is such dysfunction. So if we are to follow medical research we could easily fall down the rabbit hole of gut microbe replacement, and mitochondrial functioning, without finding the true cause as to why these dysfunctions exist. In other words, medical research seems a long ways from finding a true cause for our illnesses.
If we can move forward with the theory that medically unexplained illnesses and symptoms are a disruption of the autonomic nervous system, and a disconnection between how the mind and body interact and communicate with each other, then we can empower ourselves by researching how mind and body work together, how the autonomic nervous system controls every aspect of our physiology,
(think gut function, pain response, mitochondria), and how we can reassert control over our symptoms, then we can empower ourselves with more knowledge about our own illness and well being than any outside medical source.
Which brings me back to why medical researchers should study those that have recovered. If they did, they could make huge research breakthroughs in how the mind and body interact to create disease and/or well being. But because medical research is so far behind in understanding the mind/body interactions, this could take decades. Those who are ill and suffering don't have decades to wait for the right research study to come along.
for more funding for research. My suggestion to them was to study those that had recovered. What steps did they take to recover, what recovery looks like to them, (i.e. were they able to return to their previous life, levels of activity?), and how long they remained in remission. Of course, this was deeply unpopular.
My suggestion was, and is, to do your own research. Find people who have recovered, chase them down, and find out what worked for them. Find out if their recovery is complete. And then take those same steps that they did! Be persistent, and focus your attention on recovery, rather than symptoms.
By nature, CFS is very disempowering. The symptoms are debilitating, medically unexplainable, and unpredictable. It's easy to fall into a "victim mindset", because it causes people to feel they have no control over how they feel, and they are physically and inexplicably unable to function in their lives. It's like some unseen and inexplicable force has drained them of their energy and physical resources. Peoples lives become smaller and smaller. Indeed, feeling powerless is part of the disease itself. What I find so often with other bloggers and sufferers is this...I have (CFS/ME/FIBRO etc) so I can't do the things I want/need to do. They start to identify with the illness, and live with the label as victim or sufferer, which only perpetuates and reinforces symptoms, and the limiting lifestyle that comes with them. Creating an identity around an illness becomes one more hurdle to overcome on the road to recovery.
It's my own opinion that medical research is a very long ways away from finding a cause and cure. Medical research focuses primarily on symptoms, rather than causes of symptoms...for example, there was a recent research study that showed that gut bacteria in CFS patients was altered, but the focus was on the gut, not on why gut bacteria was altered. (could it be because the gut doesn't work properly in people who have CFS ...rather than they are missing certain microbes in the gut?) Another popular study suggests that people who have CFS have mitochondrial dysfunction...so the focus is on mitochondria...but not why there is such dysfunction. So if we are to follow medical research we could easily fall down the rabbit hole of gut microbe replacement, and mitochondrial functioning, without finding the true cause as to why these dysfunctions exist. In other words, medical research seems a long ways from finding a true cause for our illnesses.
If we can move forward with the theory that medically unexplained illnesses and symptoms are a disruption of the autonomic nervous system, and a disconnection between how the mind and body interact and communicate with each other, then we can empower ourselves by researching how mind and body work together, how the autonomic nervous system controls every aspect of our physiology,
(think gut function, pain response, mitochondria), and how we can reassert control over our symptoms, then we can empower ourselves with more knowledge about our own illness and well being than any outside medical source.
Which brings me back to why medical researchers should study those that have recovered. If they did, they could make huge research breakthroughs in how the mind and body interact to create disease and/or well being. But because medical research is so far behind in understanding the mind/body interactions, this could take decades. Those who are ill and suffering don't have decades to wait for the right research study to come along.
if people done research the first thing they would discover is that cfs is not M.E once they realise this it becomes much clearer but a cure is no closer
ReplyDeleteCFS, ME and Fibromyalgia all fall under the umbrella of autonomic nervous system dysfunction, which means the treatment is the same for all three of these disorders.
Deletewhy medical research isnt the answer?
ReplyDeletethis is totally dangerous and irresponsible and it looks like you might just get what you wish as very little ME research has been budgeted for in the upcoming year by the nih
your views are really wacky and do the ME patient community a great disservice. finally because some cooky treatment has worked for you, doesnt mean that you can generalise to the patient community as a whole. please excuse me but i have to run to the bathroom to bring up my breakfast
Dear Jeremy, I hope you are feeling better after bringing up your breakfast.. make sure to rehydrate!
DeleteME CFS and fibro are all stress related autonomic nervous system disorders. It will take researchers forever to figure this out..
my treatment was far from " Cooky"... it brought my nervous system back into balance by employing simple mind/body techniques.. there is a book coming out this spring that further discusses this theory and treatment.. it's called The Intelligent Body.. perhaps you should read it.
great article, there are lots of support groups for those with these conditions but it would be great to also have groups where people can tell others about what they did to recover. What did you do to get well?
ReplyDeleteHi Jane, Thank you for your comment. Yes, I am always looking for recovery stories, and they seem to be few and far between. I think it would be very helpful to create a "clearing house" of recovery stories so we could study what worked for those that have recovered, and why. I found my treatment by reading a book called Recovery From CFS...it was a compilation of stories of people who had recovered, and what they did to get better. The only two people in the book that had fully recovered their health (i.e. were able to resume their previous levels of activity without limitations) had recovered using a mind/body therapy that is now called Energy Flow Therapy. I found the person who created this therapy, devoted myself to healing with the therapy, and I fully recovered my health. I now play tennis, practice and teach yoga, and cycle long distances. I share my story to give others hope, but also to tell them that medical science does not have an answer. I am always happy to answer questions about my recovery!
Delete