This Is MS Multiple Sclerosis Community: Knowledge & Support

gwa--I agree COMPLETELY with your statements:

I read that AIDS burst onto the scene in 1981; within TWO years scientists knew the cause was HIV. If no cause has been found for MS in these MANY DECADES, maybe it's time to go back to "Square 1" and throw out everything the experts think they know about it and start over!

Lynda, you are a girl after my own heart!

I've written before that researchers have given up on finding the cause and have locked themselves in their labs to find the "cure". Realistically the idea is that if you mix enough chemical concoctions and try them on enough rats, sooner or later you're going to find something which has an effect on MS.

The result is obvious although it's not obvious which is less desireable, the treatments or the disease.

I can't say that it's impossible to find the cure using only microscopes and test tubes without having any idea what MS is and possibly in another 150-200 years researchers might actually "cure" MS.

We have learned things along the way and we have much better technology now. Revisiting the past won't take nearly as long as it did the first time and we likely now have the technology to recognize the cause despite the fact that it wasn't recognized the first time around.

Bob

Definitely so, Bob. I look on it as re-examining the evidence of a crime many years later, using the latest forensic technology to spot clues that were previously missed -- to do this effectively you must bring fresh minds to bear uncluttered by preconceived notions or prejudiced by "current knowledge".

gwa:

I had a conversation years ago with a friend of mine who is a gay activist, and he was of the opinion that because HIV apparently tended to strike young men, and can be detected before they had any symptoms so that they still felt well enough to be angry, that explained why HIV was so much more high-profile and high pressure than MS. I think there is much more to it than that: HIV was a sudden, new disease which threatened everybody; MS has been lurking quietly in the corner for a long time, it has no media-friendly glamour attached to it, and there is no perceived threat to the main population. Also it is burdened with its history -- when the foundations of "currently accepted wisdom" were laid down when medical science was in its infancy, any misunderstandings or misreadings were built into the very fabric of what we think we know today.



We'll have to disagree on this one. Isn't the very existence of such a powerful sex bias one of the reasons that the hormonal effect is so "obvious"? I don't believe we should ignore any clues, especially one which appears so dramatically significant.



The history of scientific and medical knowledge is littered with chance discoveries and breakthroughs made by people going off on the wildest of tangents: only today I've read of the discovery that the active ingredients in dandruff shampoo may help to open potassium channels in the neurons of people with epilepsy, (okay, strictly speaking this wasn't a chance discovery: they were looking for it, but you get what I mean).

The only way we will ever know which were dead-ends and which were useful lines of enquiry will be after this is over and we can all heave a huge sigh of relief, sit back, and smile wryly as we look back with hindsight at all the hundreds of ideas which have been considered, when all along it was simply.........

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Dom

It is a lovely afternoon; but because I have nothing better to do and feel contrary right now, I'll play "Devil's advocate". (I don't think I actually believe what I propose here.)

Dom wrote:

Could the fact that MS research has been so unproductive in the past be a function of the fact that the disease affected women mostly and researchers have been mostly men? (Initially, AIDS was affecting just men!!!)

Lynda Carol wrote (not quite believing)

Unlike you Lynda Carol, I definitely believe it. I find it rather striking that it's primarily women who are pursuing the neuroprotective potential of hormones in the management of MS and who have an interest in gender and MS.

Sharon

Dom,

The fact that the percentage of women to men with MS has increased lately doesn't mean piddle to me. The fact remains that more women than men have it, so why bother to study what the EXACT % is??

Funding such a study is a waste of money in my opinion. Looking for a cause is fine, probing more stats is not going to help either of us.

gwa

It appears that the female:male ratio in MS is moving towards the ratio seen in lupus, which is typically cited as around 10:1.
It could be that there is a hormonal factor to these diseases but I would like to remind you that the X chromosome could be playing a big role in this. Women normally have 2 X chromosomes per cell while men have 1 X. Men with 2 X chromosomes, referred to as Klinefelter's syndrome, have an increased incidence of lupus versus men with 1 X.
Since women have 2 X chromosomes but only one is needed for the most part, one X is inactivated. It is this inactivation process, an epigenetic event, that I believe is prone to error and I believe lies at the heart of many cases of 'autoimmune' diseases. I see errors in epigenetics, and the expression of previously sequestered genes, as being a key feature that needs to be studied.

Wesley

Sharon, I would tend to agree with you too....perhaps the sex ratio has skewed the investment in research too.
It's like heart disease in women - a research and dx area nearly totally ignored in my country until recently....still hearing of women who present with typical heart attack symptoms in A&E - symptoms typical of women, and who are then sent home with "it's indigestion" or "stress" or "panic attack". Making a vast sweeping statement here, but women tend to have higher pain thresholds - perhaps bcoz we've to go through giving birth - so women tend not to present with dreadful pain if they are having a heart attack.

Gwa - perhaps the study of the % may in fact be very useful towards finding a cure, methinks? Once the exact ratio is known it can be used to map the incidence onto similar diseases, and maybe, just maybe that will tell the researchers something. Perhaps.

Did a huge amount of googling in the early days after dx (can't rem if google even existed then!), and rem seeing a paper in pubmed that said that the women with MS tended to have low levels of sex hormones and same for the men, low levels of testosterone. Sorry guys! But more frequent onset after puberty, lower levels of activity during pregnancy, 2:1 sex ratio, etc etc, makes me wonder how much is this to do with reproductive hormones/processes?

And then what about all the extra hormones in the water supply, as women are taking the pill more and more, feminising of fish? Could there be more pseudo-oestrogenic stuff in our foods/water? I know I've seen some material on soft-plastics being implicated in oestrogenic effects...