[alice md]

I thought we should be looking at this question seriously, as the rarity of MG constantly serves as an excuse for lack of research and the relatively limited knowledge and treatment options for this illness, (which for some patients can be very debilitating and even life threatening and many that do respond to treatment suffer from significant side-effects).

No doubt that it is a rare disease, but how rare is it compared to other diseases in which there is much more research?

And is this the major reason why the treatment for this disease has essentially remained the same for the last 30 years?

multiple myeloma has an incidence of 5/100,000 and the average age of the patients is more than 60. There are 1500 studies listed world-wide. (as compared to 30 in myasthenia).

myelodysplastic syndrome has an incidence of 3/100,000 and the average age is over 60. There are 1200 studies listed.

Chronic Lymphocytic Leukemia has an incidence of 5/100,000 and the average age is over 60. There are 1200 studies listed.

Chronic Myeloid leukemia has a similar incidence and there are 1200 studies listed.

Immune thrombocytopenia has an incidence of 10/100,000, there are 200 studies listed.

Thrombotic thrombocytopenic purpura has an incidence of 1/100,000 and there are 140 studies listed.

So, I don't think that there is such a simple explanation for why there is so little research done in this illness.
Maybe if we are able to figure out the true reasons we will also be able to do something about it.

[southblues]

It is probably either

1. Lack of money

2. Lack of interest

If scientists were interested, they would write up grants and try to do the research.

3. Lack of enough knowledge to even know where to start. If there were a good model such as a mouse that developed MG, then there might be something to work with.

[alice md]

Originally Posted by southblues

It is probably either

1. Lack of money

2. Lack of interest

If scientists were interested, they would write up grants and try to do the research.

3. Lack of enough knowledge to even know where to start. If there were a good model such as a mouse that developed MG, then there might be something to work with.

1. why would that be different in MG?

2. actually scientists are interested and they do get grants, but this is not translated (for some reason) into the clinic. There seems to be a total disconnect between the academic interest in this illness and the clinical interest.

3. there is a good model. In fact there are quite a few interesting studies published in the last few years in mice on MuSK. Yet, 0 clinical studies.
Maybe (hopefully?) there is just a lag period and we will start seeing some soon?

[StephC]

Is it possible that it is bcs the other illnesses have more extensive background, have been around longer so more for researchers to build on? Is it bcs so less is known, understood about the NMJ?

And what about dogs? They get it? Nt that I advocate making dogs test subjects but I realized my energy, activity seems more like dogs in that dogs also require frequent, lots of rest....especially say greyhounds who have bursts of energy then sleep.

[AnnieB3]

I personally think that whomever first said "MG is the most well understood AI disease" had a lot to do with the lack of further thought.

Dogs do get MG. There are videos on YouTube showing that.

I think MG is one of the most frustrating diseases out there. There is no "easy" solution to it. Because of that, it often frustrates doctors who treat it. The best solution would be if they could figure out what mechanisms are responsible for starting it in the first place.

Monarsen, a drug that showed great promise, has been dropped into the void. Now that situation is a matter of money/cost-benefit ratio.

There are researchers, like Dr. Angela Vincent at Oxford University, who are still doing the work to figure it out but, no, that doesn't translate into the clinical world very quickly or easily.

And the MGFA needs a spokesperson - and a plan - that doesn't mind admitting they have MG let alone talking about it! The squeaky PR wheel gets the grant grease.

MG is difficult and has no easy answers. Just look at MS in comparison. They just developed a very promising drug for it. However, it's only a drug and not a cure. Again, the mechanisms of AI's are not being researched.

I'm exhausted even thinking about all of this.

[alice md]

"MG is the most well understood AI disease"

Do you think they still seriously believe it?
I know my neurologist doesn't think so. He thinks it is the most "crazy" and least understood disease there is.

But, I think you are right that it is very convenient for everyone to repeat those "mantras" and just keeps things the way they are.

The fact that most patients do well with or without treatment is probably a factor as well.

And also the fact that neurologists have a very convenient way to deal with their lack of understanding and knowledge. In fact if the DSM-5 revisions are accepted it will be even more convenient. They will not even have to prove that the patients has "emotional problems". Their lack of knowledge and understanding will be enough.

[AnnieB3]

No, I don't think everyone believes that statement. But they "rely" on it.

Why not simply label everyone but those in "charge" of the world as crazy and then they can do with us as they please? And what's with all of the secrecy behind the new classification system/proceedings? That's really rhetorical - it's all about control.

So if someone has a day when they can't handle all the BS coming at them, doctors can say, "See, she doesn't have MG but a behavior disorder." As if women don't have enough BS about "feelings" to contend with. If you don't understand it, put a psychiatric label on it!



Uh, oh, I must have bulimia.

[alice md]

Why not simply label everyone but those in "charge" of the world as crazy and then they can do with us as they please?

Isn't that what they are already doing?

In fact if what they are doing is "normal", then we are probably crazy indeed.

This is one of the best anti-war movies I have ever encountered

http://www.fandango.com/kingofhearts_v27428/plotsummary

The French/Italian/British King of Hearts (Le Roi de Coeur) takes place during World War I.Overacting outrageously, Adolfo Celi plays British colonel Alexander MacBibenbrook, who orders mild-mannered Scotsman Pvt. Charles Plumpick (Alan Bates) to undertake a life-or-death mission in a tiny French village.

While evacuating the town, the Germans have left behind a time bomb that will explode at midnight; Plumpick must defuse that bomb. Upon his arrival in town, Plumpick discovers that it is far from deserted. A group of inmates from the local insane asylum, left behind during the evacuation, have claimed the village for their own.

Knocked unconscious, Plumpick awakens to learn that he has been crowned "King of Hearts" by the gentle lunatics. None of the inmates pay any heed to Plumpick's warnings about impending doom, and when he attempts to lead them out of town, they are terrified at the prospect and scurry back to the "safety" of the village.

Plumpick is finally able to render the bomb useless, whereupon the grateful inmates decide to stage a three-year celebration. When Plumpick tries to leave, he is kidnapped by the loonies at the behest of beautiful inmate Coquelicot (Geneviève Bujold), who has fallen in love with him. Bound and gagged, Plumpick watches helplessly as the Germans and the British troops kill each other off in comic-opera fashion.

Finally set free, Plumpick weighs the horrible insanity of war against the more benign brand of lunacy represented by the inmates. The final image -- of a nude Plumpick carrying a birdcage, knocking on the doors of the asylum, and demanding that he be "accepted" --

[robocar]

Alice,

As I was listening to the news yesterday a study was spoken of where they are doing intensive research in the role of neurotransmitters in the ability of children to learn. As someone who also is a medical professional I think back to the medical discoveries made by serendipity. I'm truly hoping that with this research and that in Alzheimer's, something important will be discovered that will help us find a near cure for MG - (maybe with all of the meds we take we all will turn into geniuses!!). I will be doing my homework and keeping you posted.

Here where I live, the neurologist who's considered to be the number 1 of my country in MG, sees MG as an easy disease. All the doctors here do, they just see it as: there are loads of medicine to try, there is no progression in the severity like in other diseases, and it probably gets better after a few years.
They even say, it's not like MS or something similar. No, duh, I know that but still!
I believe loads of doctors see MG as an easy disease, it's not life threathning and they even say you can live a normal life with it.
Here I am, happy to even be able to type this, lying on the couch, holding my head up with pillows, not even near the normal life I want.
I also have had other diseases and still have some others, but until now, I hate MG the most!

So, here there isnt much research done, because
A) its an easy disease to live with (hahaha)
B) they probably don't think there's financially something to gain, because there are already so many things to try