Hi Annie,

I know you have had very bad experiences with doctors. I did too, but as a physician I can possibly see it a bit differently. And therefore be more hopeful about it.

Overall physicians are people, and most people find it hard to change what they think (be it political, religious or any other thoughts or beliefs they have, even in arts and music ). And obviously some more then others.

I think that the advantage of modern medicine (as opposed to other healing approaches) is that it constantly questions the "truth". Nothing is sacred in our textbooks or journal articles. We constantly write "letters to the editors" that question the validity of the conclusions of certain articles, or raise new questions etc. Yet, in medicine and also in science you do have to work hard to convince people to accept what doesn't fully fit with what they know and understand. Many times it takes more then one person or group to gradually gather the evidence. But, more times then not it will happen eventually.

An excellent teacher I had in medical school told us that half of what is written in our textbook is going to be incorrect 20 years from now. The problem is that he can't tell us which half. And he was quite right.
There are numerous examples I can give you-medications that were contraindicated in heart failure are now used to treat heart failure. the approach to peptic ulcer has changed 180 degrees, etc. etc. my field of practice-hematology, is one of the fields that evolved tremendously (and still is). On the other side of the spectrum is neurology, which has changed much less. And I think the main reason for that is that it is much less accessible for research. I can take my patients samples to the lab at the end of the day. they can't take a "slice" of the brain, or the nerve or the muscle.

Yet, as biological systems are very similar, what was learned in my field of practice, can be extrapolated to neurology. And in fact I am finding a few neurologists who are willing to understand that (albeit quite a few others that do not). My understanding of receptors and down-stream signaling comes from my own research. Why should muscle cells be different in their biological behavior from lymphocytes? The understanding of the complexity of antibodies and their interactions with their targets is my field of practice, so obviously I have a better understanding of that then they do.

To me (if I put aside my own personal emotions regarding the personal consequences of this for me) the "SFEMG axiom" is just another such misconception, that is gradually being realized as such. I can tell you that I have personally managed to convince 2 neurologists (one who was my treating neurologist for 3 years, and I nicknamed-my SFEMG neuro, because he put so much emphasis on this test), that this has to be questioned.

Angela Vincent recently presented in a conference, a few patients with MuSK MG and non-diagnostic SFEMGs. (diplomatically she didn't use the word "normal"). And you are right that people tend to accept such results more readily when they come from a place like Oxford. In fact the person who sent this abstract to me was my SFEMG neuro. who told me two years before that it is impossible to have myasthenia with a normal SFEMG in a weak muscle.

I recently sent a letter the editor of a neurology journal, in response to a paper that classified MG as either AchR positive, MuSK positive or SFEMG positive. (eg- if there are no antibodies and non-diagnostic EMG the patient does not have MG). This letter was accepted and published, and I even received a request for reprints. I recently gave it to my neurologist, who told me about two patients he saw in his clinic with non-questionable MG and a completely normal SFEMG.

So, I think there is hope.

You are perfectly right that a one time neurological examination in the office, gives you very little information regarding the patient's condition or the severity of his/her MG. And most neurologists know that. In fact my neurologist never examines me, because he thinks it will add nothing. He just asks me how I am doing and have been doing since he last saw me. And lets me use what ever is convenient for me to document it.
Yet, they have to cling to something, mostly if the patient can't describe his/her symptoms in a clear way . I think most patients in the early days of their illness can't, because it is so overwhelming and confusing. I know I couldn't. It didn't resemble anything that I knew as a person or as a physician, except for maybe "alice in wonderland", (but this is not a very useful description to give your physician).

Having or not having access to full text articles is only a matter of money. In fact many people are now ready to pay so that their paper will be on open-access, and many journals will give open access, because they know that if more people will read, more people will cite and this will increase their impact factor. ( a very important number that says how good the journal is, or how good the specific researcher is). Most students in universities (not only medical school) will have full access to most journals. Hospital or university libraries buy packages, that a single user can't afford.
the way papers are reviewed and accepted (or rejected) is another topic. Pharmaceutical companies have too much influence and power in this.
It is a very complex issue with many ethical, political etc. ramifications.
And you are right that sometimes excellent papers, that could add to our knowledge base and understanding are rejected, while others that add very little are readily accepted.

The good news is that more and more physicians realize the importance of internet forums and interactions with patients. They realize that when physician and patients join their knowledge and experience 1+1 becomes much more then 2. I do think that within the next decade we will witness a significant change in the way knowledge is disseminated. I think that joined physician-patient discussion groups will be the norm, and the peer review process will be done on-line. There is one such experimental journal like that, in which you can publish what ever you want (similar to this forum, but in a paper format) and then whoever wants to review it, and write comments does so. So far, there are only esoteric publications there, but possibly with time it will change.

So, yes there is hope.

Alice