Yes, this is sort of a loop.
If you agree with their notion that MG is such a nice illness, than obviously you are doing well and don't need any further treatment/ there is no reason to do any research to find better treatment options.
If you say that MG is not the "nice" illness they think it is, than obviously it is because something is wrong with the way you perceive your illness as a patient. So, obviously you do not need further treatment for that, nor is there need to find better treatment options for your disease.

Very true. I do not see MG as a simple, easy treatable and easy to live with disease. However, because most of the patients do react quite good on the treatments, it is not lucrative for farmaceuticals to look any further.
On the other hand: some of these "well-treated" patients I spoke with do indeed have normal lifes. They work fulltime, have family's, hobby's, even on the smallest dosage of mestinon and nothing else!
But...there are other patients, who I believe just cope very well, or accept easily (whichever way you want to see it). They say there MG is easy to live with, when you adjust to it. When I ask them, what is it you do in a normal week? "Work 3 half days a week, but no social life or hobby's. Because when I go out on an evening, I can't work 2 days afterwards."
Well, that aint normal to me! But they say it's easy to life with, because it was so much worse (MG crisis), or because they compare it to ALS or cancer or something.
So why would the farmaceutical industry do research on a disease, that isn't only a bit rare (not so much), but that also probably has no profitable outcome, because a very high percentage of the patients do live, or say they live, normal lifes?

It's a bit sad for us though

I think that one of the problems is that neurologists lump together those patients who truly have improvement in their symptoms and lead a normal life (by every definition) with those that have learned how to lead a productive life with significant limitations.

Those are two separate issues.

The severity of a disease is not determined by how a patient learns to live with it. By this definition Steven Hawking has a very mild illness.

I think the reason they lump it together is because it is very hard to truly evaluate the patient's condition because of the changing nature of this disease.
They know that their patient's ability to push their arm means very little. Even if they do more elaborate testing they may just be seeing them on a relatively good day.

I think there are solutions to this problem, but it is easier to just ask the patient how they are doing and expecting them to say they are fine.

Something else that has to be taken into consideration is how many doctors/researchers are curious enough to set up a study. After all, these things don't happen in a vacuum - it takes an awful lot of resources to set up and run a study, and funding is - like it or not - finite.

In order to get funding for a study, there has to be a set REASON for the study - what is it that the researchers are hoping to find? And if there isn't going to be a pay-off (for lack of a better term), many people who would fund a study aren't going to want to throw their money away. How many of us are willing to keep giving our kids quarters to put in the machine in hopes that they *might* win a prize? At some point, we have to tell them "no more"....

The only people who can fund research for research's sake are the very, very wealthy. Like it or not, it is their money, and it is also their right to spend it however they see fit. We do not have the right to forcibly take it from them to spend on things that we want (just like our kids are not allowed to keep demanding quarters from us).

As with many other diseases, when a loved one of someone who has the time and the money to spend gets a serious illness, studies will be funded.

I am sure that lots of research was done in decades gone by on MG - it's why there is so much knowledge out there already. But most people who have MG will never be in a "crisis" situation, and doctors have figured out how to maintain their patients such that they have a reasonable quality of life. By most measures, that is a considerable success.

It's kind of like your house or your car: there's always SOMETHING that can be done to improve them, but it's a matter of coming up with the time and the money to do what you would like to have done. You do what is necessary to keep them from falling apart, and you hope for the best.

Last time I checked, researchers still haven't found a cure for the common cold, either -

No, but they did show more interest than in MG.

I just looked it up

http://clinicaltrials.gov/ct2/result...&Search=Search

224 studies.

Seems like it is much more interesting to study than MG.

Let me make it more clear- I am talking about clinical trials and not basic research.

The gap between the amount of academic/basic research and clinical trials is enormous. Which means that there is a lot of funding for MG research and a lot of interest, but this does not translate into trying to find more effective treatment.

If you look at MuSK myasthenia specifically there have been 267 papers published since its discovery a decade ago, but there is not even one clinical trial that I am aware of any where in the world.

The situation is not much better for AchR MG.

Most of the research is not funded by wealthy people, but by governments and non-profit organizations. patient advocacy groups can effect funding.

I am a veterinarian. I have been semiretired (now teaching college) for 5 years. I practiced on most every commonly kept species of animal around. Horses are my favorite, but I did a LOT of dog work. In 25 years of active practice as well as 4 years of vet school and the 5 years that I am not actively practicing, I have never seen a dog with anything resembling MG. We studied about it in school. It seems strange to say it, but it seemed a bit boring at the time.

I have seen tons of neurological problem in dogs (as well as in cats and horses).

With dogs I saw brain tumors, strokes, injuries to the brain or spinal cord, canine distemper, and rabies.

Cats were about the same except you have to pull out canine distemper and insert feline leukemia.

Horses get a protozoal disease that causes neurological damage (EPM) as well as all the injuries, tumors, etc.

I was bitten by a rabid mule.

But I am the only creature that I have ever seen that has MG.

http://www.youtube.com/watch?v=k7YX9kuWrxA

Here you go, just one of many videos on dogs having a Tensilon Test to see if they have MG.

I haven't found one of a Leprechaun though.

Wow!! Amazing video! What a cool case!