I guess I just wanted to say that doctors with such views aren't necessarily bad, although I did see other doctors that were less helpful and even dismissive because of assumptions that CFS was functional and biopsychosocial. I do despise how the biopsychosocial paradigm has abused CFS as a play thing, but doctors with a biomedical view of CFS aren't necessarily better either. While such doctors were more willing to try exotic tests and treatments, many such tests and treatments are very expensive and often quackery with significant adverse effects.
I think that a physician should use all his scientific and humane understanding in order to find the best way to help his/her patient have the best possible realistic outcome.
The fact that some physicians use a certain approach as a way to dismiss their patients, doesn't make this approach wrong. It makes
them wrong.
I do not think you can take good care of a patient without knowing him as a person and without knowing his social situation, support systems etc.
When one of my neurologists came to discuss with me the hardships of living with my illness, I was very glad and thought that he, like me, doesn't only treat the disease, but treats the patient.
After I realized that this was not because he was truly interested in me as a person, but trying to find justifications for his ignorance, I looked for someone who will just be interested in my disease and treat it.
This was a much worse disaster, because that neurologist didn't even bother to at least have some reasonable bed-side manners.
I then realized that I gave up what I thought was essential for a proper physician-patient relationship, just because someone abused it.
I now have a wonderful neurologist who does everything possible to make my life better. He has outstanding clinical and humanistic skills.
CFS has a reputation for being difficult to treat, because, well, it is difficult to treat. I still dream about being under the care of a highly competent physician with biomedical views on CFS who is well informed and up to date with access to effective treatments. But to be honest, I question whether such people even exist or at least accessible to me. I'm not interested anymore in seeing the supposed "super" doctors I read about online. Not only do I lack the money anyway, but I fear the further loss of function and none of them sound particularly impressive to me in terms of treatment (although extensive testing sounds rather nice).
I had the ability to reach the best "super" doctors. I have an illness with a reputation of being easy to treat.
They mostly caused more harm than good, because for them I was a challenge, not a person who came to them for help.
I've reached a point in my life where I'd rather continue to rot away with a relatively poor but manageable quality of life than risk life becoming literally intolerable due to some experimental treatment or therapy. The state of research funding is atrocious, there are good doctors working hard to help, but when one have been ill for nearly 20 years, notions of hope and improvement become abstract; replaced with acceptance, adaptation, making the most of it, safeguarding what remains.
[/QUOTE]
Some diseases are very hard to treat, some diseases may be easy to treat, but some patients with those diseases have refractory disease, which means they do not respond to those commonly used treatments.
Acceptance, adaptation, making the most of it and safeguarding what remains is an excellent and very realistic approach. It can even lead to some improvement in your ability to function on a daily basis with realistic goals.
At some point you realize that there are no "magic pills" and that with proper supportive treatment, tools and aids you can still lead a very reasonable life.
Most physicians, unfortunately, have very little interest in taking care of patients who do not respond to their "miracle cures" and don't give them the narcissistic satisfaction of being such amazing physicians.
I personally think that a true physician is seen by his/her ability to take care of such "frustrating" patients.