From a sociological point of view, I find it very interesting that on the one hand there are MG patients who are ready to receive extremely aggressive treatments, and on the other hand there are those who wouldn't even take a mestinon pill, because it is made by a pharma company.

I can understand both.

MG is "advertised" as a "nice" illness with which one can lead a completely normal life. The treatment for MG is "advertised" as very mild with minimal side effects. Patients with MG are told that they are "lucky" to have this illness.

There are very few clinical trials in MG, because why bother to find a better treatment, when the current treatments are so effective and have so little side-effects?

In the reality neither is true. MG is not a "nice" illness. It is an illness which effects every aspect of your life. Even those that have a good control of their disease (with the price of serious side effects) have to make adjustments in their life. MG is not well-understood, but very poorly understood.

I am constantly told that the patients I have met are not "representative" of the MG population. Because, most MG patients are doing so well and busy with their life that they don't come to support group meetings or internet forums.

I doubt this.

I think that much more likely, most MG patients are made to feel that they don't know how to cope with their illness. Most MG patients feel guilty for not being able to lead a normal life (like they should), most MG patients are made to feel guilty for not putting enough efforts, or not being "positive" enough, or not "wanting" enough to recover. Most MG patients are made to feel guilty for not being content with being "stable". Most MG patients are being told that because they can push their neurologist's arm, they are not as ill as they "think".

I once attended an MG support group meeting. I was very ill at the time and required respiratory support just from the effort of sitting in my wheelchair.
One of the patients came to me after the meeting. He looked the picture of health. he walked at a normal pace and there was not way you could guess he was ill.
"Don't worry" he said to me "I was like that a few years ago, but now I am doing great".
I was really glad to hear that as it gave me hope for my complete recovery and being able to lead a normal life.
"What kind of work do you do?" I asked as I was interested to know if it required significant physical strength.
"Work?!" he looked at me with disbelief "I don't work. I retired on disability. I have a few hobbies and I just enjoy life".

I think that some MG patients are not ready to have to adjust to this illness, suffer the side effects and potential risks of the currently available medications (that haven't changed much over the last 30 years, in the face of enormous advances in the treatment of numerous other diseases) and at the same time continue to have a "positive" approach.

Unfortunately, most physicians and MG patients do not want to be told that their emperor has no clothes.