Researcher's labour of love leads to MS breakthrough | Hacker News Reader

Researcher's labour of love leads to MS breakthrough

theglobeandmail.com

40 pointsbenzim21 comments

MS being multiple sclerosis. I went through thinking it was something to do with Microsoft.. so if you're reading here first, don't make that mistake :-)

That's what I thought at first. Then I saw the word "breakthrough" and I knew it wasn't Microsoft.

The U.S. society goes further, discouraging patients from getting tested or seeking surgical treatment. Rather, it continues to promote drug treatments used to alleviate symptoms...

Statements like this make me wonder how much influence the drug industry had in this decision. Clearly it's not in their best interest for MS sufferers to get surgery and be done with it. I'm sure they rather MS sufferers take a Rx for the rest of their life.

"The initial studies done in Italy were small but the outcomes were dramatic. In a group of 65 patients with relapsing-remitting MS (the most common form) who underwent surgery, the number of active lesions in the brain fell sharply, to 12 per cent from 50 per cent; in the two years after surgery, 73 per cent of patients had no symptoms."

Although these are big falls 65 patients is not a large group. I'm not surprised the MS Society is cautious at this stage.

I can understand being cautious about surgery, but what would be the problem with getting tested? Surely donating data to the research would be a good thing?

I've had a look on the MS Society website and the only commentary on this research I can find is this: http://www.nationalmssociety.org/news/news-detail/index.aspx...

At the time that article was posted the only peer reviewed article showed a correlation between MS and reduced blood flow but no details on treatment. To my reading it seems fairly balanced in that context.

To some extent I'm playing devils advocate but here goes . . .

Why shouldn't people be tested? Tested by who? Are there sufficient qualified people? How would it be paid for? Would it take resources away from other treatments which we know, even if not very well, do work? What would be the value? How long would people be waiting before they could be treated? Would people be a little more lax in taking other treatments during this time? If the treatment proved not to work as advertised what would be the effect on those who had hoped it would?

Donating data is a good thing? What would be the selection criteria? Those rich enough to pay for the scan themselves? Are they representative? What would be the administrative overhead? Just as adding a new developer to a project behind schedule can slow things down further would an avalanche of volunteered data slow down the overall process? To what standards would this data be collected?

The article from the MS Society sounds very reasonable.

If 95% of the patients would have MS symptoms continue for two years at least, then having only 27% of the patients show symptoms 2 year on, is insanely significant statistically.

Similarly, if the average number of active lesions stayed at 50% for a control group, and fell to 12% for the test group, that's statistically significant.

Even if the group is small if the observed deviation is high then the observation is significant! Sample size is only half the story.

I appreciate that the effect is medically significant but the intervention was conducted at just one centre. Can it be repeated or is it particular to this centre? There are many, highly statistically significant, results published which faded into obscurity because nobody was able to repeat the results. I hope this isn't the case here but until it is repeated we can't know for sure.

The other point to note is that this article has been written for mass consumption and as such highlights the good but perhaps also misses the problems. I've had a quick look for a peer-reviewed article. I've found this (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2647682/?tool=pu...) which I think talks about the initial part of this study but it doesn't include the 2 year follow up.

I really do hope this is as positive as it initially sounds but there is still some way to go yet.

Is it indeed a "small" group? Here the sample size was 65. Isn't a sample size > 30 usually enough for most studies?

That aside, given the dramatic results, wouldn't this demand immediate further investigation? Certainly first to determine how common these blockages are in MS patient?

Should blockages prove commonplace in MS patients then, since the surgical procedure's risks are known and the alternative outcome is very poor, shouldn't surgery be considered immediately in many, if not most, cases?

A small sample with no control and a (so far) very short followup period, all at the same facility, for a disease which is known to be strongly episodic and to stay in remission naturally for years at a time, and you wonder why people are approaching it cautiously?

Assuming that the treatment is proved to be successful -- and despite promising early results, that's still a ways off -- what happens to the various "find a cure for MS" organizations? Would they go away quietly? Is there a precedent for such an event?

The closest thing that came to mine was March of Dimes. Originally it targeted Polio, but now it's "mission is to improve the health of babies by preventing birth defects, premature birth, and infant mortality" (http://en.wikipedia.org/wiki/March_of_Dimes). So, maybe they move on to fight another fight.

Maybe they could join up with the ALS charities?

More radical still, the experimental surgery he performed on his wife offers hope that MS, which afflicts 2.5 million people worldwide, can be cured and even largely prevented.

Isn't that considered a breach of medical ethics, and generally just a bad idea?

Maybe, but consider it from his perspective.

It seems a stretch that he would refuse the treatment from his wife whilst treating 64 other sufferers. The study would have gone through the local ethics committees, probably with second opinions etc. I would be curious as to whether the ethics committee knew his wife would be amongst the trial group but I would find it difficult to condemn him if they didn't.

The surgery may be experimental as a treatment for MS. But the procedure itself for unclogging the veins sounds fairly straightforward for vascular surgeons, Zamboni included.

I was thinking that operating on family / friends was considered a bad thing. As an example

"physicians generally should not treat themselves or members of their immediate families" because their professional objectivity may be compromised in those situations. Exceptions are allowed for "short-term, minor problems" or "in emergency or isolated settings."

http://www.aafp.org/fpm/20050300/41shou.html

Experimental surgery is performed all the time, perhaps every day. Sometimes surgeons just do new shit because they find themselves in a novel situation and they have to improvise but more often it's a more calculated decision: weighing the risks and urgency, informing the patient, consulting with other surgeons.

If the numbers mentioned in the article are valid, it sounds like he's found a cure for at least one cause of M.S. Whether it's the sole possible cause is another question...

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