update on chronic cerebrospinal insufficiency in MS February 10, 2010 4:15 PM Subscribe
Update to this thread on chronic cerebrospinal venous insufficiency in multiple sclerosis: the results of the first stage of a followup study of 500 participants at Buffalo Neuroimaging Analysis Center have been released.
The center has announced enrollment for a second study on the effects of balloon angioplasty for CCSVI and MS, and is now offering diagnostic testing for CCSVI. Additional studies are planned at other institutions.
The center has announced enrollment for a second study on the effects of balloon angioplasty for CCSVI and MS, and is now offering diagnostic testing for CCSVI. Additional studies are planned at other institutions.
I will be flabbergasted if these results hold up. I have a fairly detailed understanding of multiple sclerosis and the current state of the art with regard to it and I simply cannot fit Chronic Venous Insufficiency into the picture. That doesn't mean it isn't true since life is weird like that sometimes, but it just doesn't make any sense at all to me.
We know that MS is strongly correlated with latitude during adolescence and have fairly decent evidence this is related to vitamin D deficiency. We have some evidence that there is an infections disease aspect. We know with almost absolute certainty that suppressing the immune system also suppresses the demyelination which means that it is the immune system itself which is attacking the myelin sheath.
I do not know how to square these things with the idea that the problem is lack of sufficient blood flow from the brain. What is the mechanism by which this is related to latitude during adolescence? What is the mechanism by which infectious disease affects venous sufficiency? Why would venous insufficiency cause the immune system to go nuts?
I'll be the first guy doing the happy dance if this pans out but it makes about as much sense as the Chewbacca Defense.
posted by Justinian at 4:58 PM on February 10, 2010 [3 favorites]
We know that MS is strongly correlated with latitude during adolescence and have fairly decent evidence this is related to vitamin D deficiency. We have some evidence that there is an infections disease aspect. We know with almost absolute certainty that suppressing the immune system also suppresses the demyelination which means that it is the immune system itself which is attacking the myelin sheath.
I do not know how to square these things with the idea that the problem is lack of sufficient blood flow from the brain. What is the mechanism by which this is related to latitude during adolescence? What is the mechanism by which infectious disease affects venous sufficiency? Why would venous insufficiency cause the immune system to go nuts?
I'll be the first guy doing the happy dance if this pans out but it makes about as much sense as the Chewbacca Defense.
posted by Justinian at 4:58 PM on February 10, 2010 [3 favorites]
I hadn't heard of this research, and I missed the previous metafilter post that dilettante linked to (thanks for reposting the link).
I've just had a look on the UK MS society website. Yes it sounds interesting; I'm keeping fingers, toes and everything else crossed - I'm not a medical professional by any stretch though.
But, reading down, they do however have this to say:
"We are not convinced by the evidence that blockages to draining veins from the brain are specific to people with multiple sclerosis, or that this explains the cause of multiple sclerosis at any stage of the condition.
We are all agreed that people with multiple sclerosis are not likely to benefit by treatments that dilate blood vessels and consider these procedures to carry risks with no evidence for benefit.
The treatment for CCSVI is not available for patients with multiple sclerosis in the United Kingdom because there is no convincing evidence to suggest that it is safe or beneficial to people with MS."
posted by selton at 5:23 PM on February 10, 2010
I've just had a look on the UK MS society website. Yes it sounds interesting; I'm keeping fingers, toes and everything else crossed - I'm not a medical professional by any stretch though.
But, reading down, they do however have this to say:
"We are not convinced by the evidence that blockages to draining veins from the brain are specific to people with multiple sclerosis, or that this explains the cause of multiple sclerosis at any stage of the condition.
We are all agreed that people with multiple sclerosis are not likely to benefit by treatments that dilate blood vessels and consider these procedures to carry risks with no evidence for benefit.
The treatment for CCSVI is not available for patients with multiple sclerosis in the United Kingdom because there is no convincing evidence to suggest that it is safe or beneficial to people with MS."
posted by selton at 5:23 PM on February 10, 2010
Hey, neat, thanks for posting the update. I was actually in attendance at the CCSVI workshop on Sunday and was told there might be some interesting results to look forward to this week. The workshop went a long way to advancing some of the more theoretical and pathophysiological aspects behind the CCSVI-MS connection.
Justinian, the people behind CCSVI aren't suggesting that MS is _not_ an autoimmune condition, just that there may be an ultimate cause of it related to the venous insufficiency. They're hinting at the fact that there appear to be abnormal amounts of iron deposition in MS plaques. And, interestingly enough, if you look at the mouse model of MS (autoimmune encephalomyelitis), mice don't develop the disease if they're iron-deficient. Not a slam-dunk correlation, but an interesting one. What the connection is between infectious agents and vitamin D and latitude? I think that's something any theory of MS pathophysiology has to deal with, and hopefully we'll know all that in time...
posted by greatgefilte at 5:24 PM on February 10, 2010
Justinian, the people behind CCSVI aren't suggesting that MS is _not_ an autoimmune condition, just that there may be an ultimate cause of it related to the venous insufficiency. They're hinting at the fact that there appear to be abnormal amounts of iron deposition in MS plaques. And, interestingly enough, if you look at the mouse model of MS (autoimmune encephalomyelitis), mice don't develop the disease if they're iron-deficient. Not a slam-dunk correlation, but an interesting one. What the connection is between infectious agents and vitamin D and latitude? I think that's something any theory of MS pathophysiology has to deal with, and hopefully we'll know all that in time...
posted by greatgefilte at 5:24 PM on February 10, 2010
i posted about this on metatalk previously
once again, great news for all, brought to you by the blue
posted by Potomac Avenue at 5:32 PM on February 10, 2010
once again, great news for all, brought to you by the blue
posted by Potomac Avenue at 5:32 PM on February 10, 2010
Any MS research is the last parade I'd want to pee on. And sometimes I need a straw to cling to even if many people say it's probably a greasy straw.
But please if you send this to your friends or loved ones with MS: send it as 'some research claims to have shown, but other experts don't all agree' and not 'this research will cure you'.
posted by selton at 5:33 PM on February 10, 2010 [4 favorites]
But please if you send this to your friends or loved ones with MS: send it as 'some research claims to have shown, but other experts don't all agree' and not 'this research will cure you'.
posted by selton at 5:33 PM on February 10, 2010 [4 favorites]
Well, I like the fact that we take time to discuss what is a bizarre and frightening disease. Some days I feel like we are close to a breakthrough, and like Justinian I just cannot believe that we will not eventually connect it with some sort of 1 or 2 or 3-hit affair tied intimately to Vitamin D. In Oregon it's pretty common and always what people worry about, especially women, when they come in with a strange symptom. Few things are more wonderful in a medical career than to look back just 1 or 2 decades and realize how far we have come in the treatment of disease. I have watched MS go from something we would watch kill people when I was in medical school to a disease that most people can remain hopeful for a reasonably engaged and full life. Hopefully by the time I retire it will be like neural tube defects and folic acid.
posted by docpops at 7:01 PM on February 10, 2010 [2 favorites]
posted by docpops at 7:01 PM on February 10, 2010 [2 favorites]
docpops: when do you plan on retiring? I want to calibrate my hopeometer.
posted by boo_radley at 7:24 PM on February 10, 2010
posted by boo_radley at 7:24 PM on February 10, 2010
ok...now I know what I wanted to say... Thanks, metafilter people, for being intelligent, caring, and perceptive.... my wife has MS, whenever I see those two letters together online, I read the article... but, when I see something like this on the blue, I read it with the knowledge that you folks are GOOD at finding, vetting, and sharing....
I like this place...
posted by HuronBob at 7:25 PM on February 10, 2010 [1 favorite]
I like this place...
posted by HuronBob at 7:25 PM on February 10, 2010 [1 favorite]
I have multiple sclerosis and I'm very thankful for all the research that's going on.
That said, I have two problems with the way this research on chronic cerebrospinal venous insufficiency has been talked up on Metafilter.
1. There is a ton of research going on about MS. It is a relatively widespread disease in affluent countries, so the drug companies and research hospitals love it. There many many potential treatments in the early stages of testing. Most of these won't pan out and those that do will take years to come to market. Someone with MS could spend their entire life obsessing about these potential treatments, following them, hoping for them, etc. That would be as opposed to actually living their lives. It's not productive to obsess over early-stage research. If there's a cure for MS, believe me, people will find out. It'll make a great NYTimes FPP.
2. This particular line of research smells to me more like Laetrile or Bee Sting Therapy than legitimate research. I don't like the way the researchers are hyping it. It's out of proportion to what they've found and the stage of their research process. Hey, I'll be pleased as punch if it pans out. I have the disease and I'd love to knock off the daily injections of Copaxone. But I don't expect that to happen any time soon.
All in all, I rate this as unproductive hypefilter.
posted by alms at 7:30 PM on February 10, 2010 [1 favorite]
That said, I have two problems with the way this research on chronic cerebrospinal venous insufficiency has been talked up on Metafilter.
1. There is a ton of research going on about MS. It is a relatively widespread disease in affluent countries, so the drug companies and research hospitals love it. There many many potential treatments in the early stages of testing. Most of these won't pan out and those that do will take years to come to market. Someone with MS could spend their entire life obsessing about these potential treatments, following them, hoping for them, etc. That would be as opposed to actually living their lives. It's not productive to obsess over early-stage research. If there's a cure for MS, believe me, people will find out. It'll make a great NYTimes FPP.
2. This particular line of research smells to me more like Laetrile or Bee Sting Therapy than legitimate research. I don't like the way the researchers are hyping it. It's out of proportion to what they've found and the stage of their research process. Hey, I'll be pleased as punch if it pans out. I have the disease and I'd love to knock off the daily injections of Copaxone. But I don't expect that to happen any time soon.
All in all, I rate this as unproductive hypefilter.
posted by alms at 7:30 PM on February 10, 2010 [1 favorite]
There's always the possibility, of course, that what we call "Multiple Sclerosis" is not one thing but a collection of multiple syndromes with different causes that happen to have similar effects. For example, I'm not sure what the current state of the art on the differences (in cause) between primary progressive presentations and the more typical relapsing-remitting cases. It wouldn't surprise me if they weren't the same thing. It also wouldn't surprise me if they were.
But, yeah, if I was forced to guess I'd say that the most likely scenario for the development of MS in a human goes something like this:
1) A baby is born with (relatively common) risk factors such as a parent with an autoimmune problem. Even something as common as psoriasis would be such a factor. The baby is now at higher risk of autoimmune problems.
2) The baby turns into an adolescence and, during some critical phase of his or her childhood or early teenage years, is vitamin-D deficient and some kind of trigger gets flipped in the immune system. Since high latitudes get less sunlight than lower latitudes, this explains the distribution of MS geographically. It also explains, synergistically, why (for ex.) Swiss who grew up at high altitudes are less likely to develop MS than Swiss who grew up down in a valley despite those being at the same latitude.
3) Sometime during these teenage years or in the early 20s the person in question contracts an infectious disease. Whether this has to be a particular infectious disease (Epstein-Barr is a popular choice) or a wide range of diseases with some particular characteristic is not clear. But something about the now-wonky immune system's reaction to this disease causes the myelin sheaths surrounding the axons of the nervous system to be attacked by the immune system.
4) For some reason, for the rest of the person's life the immune system has decided that the myelin sheath is now something to be attacked. Why it appears to attack the sheath in a relapsing fashion and not constantly and continuously is not clear.
5) Damage to the myelin sheath occurs more quickly than the myelin can be repaired and replaced by the body. How much more quickly determines the course of the disease. Eventually a threshold is reached where the myelin is sufficiently damaged that the oligodendrocytes are completely overwhelmed and fail. The axons themselves now start suffering increasingly as they are constantly exposed to the hostile environment of the body with no myelin to protect them.
6) Profit!
I don't see how venous sufficiency or insufficiency fits into this picture.
But docpops undoubtedly knows more than I about this.
posted by Justinian at 7:37 PM on February 10, 2010
But, yeah, if I was forced to guess I'd say that the most likely scenario for the development of MS in a human goes something like this:
1) A baby is born with (relatively common) risk factors such as a parent with an autoimmune problem. Even something as common as psoriasis would be such a factor. The baby is now at higher risk of autoimmune problems.
2) The baby turns into an adolescence and, during some critical phase of his or her childhood or early teenage years, is vitamin-D deficient and some kind of trigger gets flipped in the immune system. Since high latitudes get less sunlight than lower latitudes, this explains the distribution of MS geographically. It also explains, synergistically, why (for ex.) Swiss who grew up at high altitudes are less likely to develop MS than Swiss who grew up down in a valley despite those being at the same latitude.
3) Sometime during these teenage years or in the early 20s the person in question contracts an infectious disease. Whether this has to be a particular infectious disease (Epstein-Barr is a popular choice) or a wide range of diseases with some particular characteristic is not clear. But something about the now-wonky immune system's reaction to this disease causes the myelin sheaths surrounding the axons of the nervous system to be attacked by the immune system.
4) For some reason, for the rest of the person's life the immune system has decided that the myelin sheath is now something to be attacked. Why it appears to attack the sheath in a relapsing fashion and not constantly and continuously is not clear.
5) Damage to the myelin sheath occurs more quickly than the myelin can be repaired and replaced by the body. How much more quickly determines the course of the disease. Eventually a threshold is reached where the myelin is sufficiently damaged that the oligodendrocytes are completely overwhelmed and fail. The axons themselves now start suffering increasingly as they are constantly exposed to the hostile environment of the body with no myelin to protect them.
6) Profit!
I don't see how venous sufficiency or insufficiency fits into this picture.
But docpops undoubtedly knows more than I about this.
posted by Justinian at 7:37 PM on February 10, 2010
Oh, my own opinion? Something like Tysabri probably has a very good chance of slowing the disease to a crawl if not halting it. Shame about the whole 1% of KILLING YOU BY EATING YOUR BRAIN thing.
I'd like to see a bit more focus on remyelination. If it's hard to stop the disease without a good chance of killing the patient, being able to repair the damage as fast or almost as fast as it happens is an excellent alternative.
posted by Justinian at 7:39 PM on February 10, 2010
I'd like to see a bit more focus on remyelination. If it's hard to stop the disease without a good chance of killing the patient, being able to repair the damage as fast or almost as fast as it happens is an excellent alternative.
posted by Justinian at 7:39 PM on February 10, 2010
About a year ago I met someone at a party who was doing research on remyelinization for a local pharma giant. It was nice being able to thank him personally. Of course, we're talking years and years (decades?) from product. If I remember correctly, he was working on aspects of the basic biochemistry, not even anything close to therapeutic.
Still, it was a great positive random encounter. "Hi, what do you do for work?" "I try to cure your disease."
posted by alms at 8:09 PM on February 10, 2010 [1 favorite]
Still, it was a great positive random encounter. "Hi, what do you do for work?" "I try to cure your disease."
posted by alms at 8:09 PM on February 10, 2010 [1 favorite]
A buddy of mine (high latitudes, bookish and not outside much as a kid, ADEM-like viral infection immediately prior to first symptomatic episode-- ie, kinda textbook) is working on getting into the Buffalo study. He's had a lot of challenges with his treatment, being in a rural and economically severely depressed area, and all I can really hope is that science advances faster than his illness does.
posted by fairytale of los angeles at 10:39 PM on February 10, 2010
posted by fairytale of los angeles at 10:39 PM on February 10, 2010
I think the reason we see chronic cerebrospinal venous insufficiency in multiple sclerosis is fairly simple.
Venous insufficiency means that blood pumped into the brain is abnormally slow to drain out.
The body does this 'on purpose' because it gives the immune cells in the bloodstream a better opportunity to get out of the blood, pass through the blood-brain barrier and make their way into the brain than they would have if the blood were whizzing by at the normal rate.
In short, it's a way of enhancing the auto-immune attack on the brain.
However, if blood flow through the brain slows down significantly, there is a terrible risk of clotting.
Just near the end of the original thread, ohyouknow provided a link to a page which, without reference to venous insufficiency, offers some evidence that people with multiple sclerosis have blood that resists clotting, and may even have managed to somehow reduce their populations of the ordinarily beneficial intestinal bacteria which produce vitamin K, which is vital for blood clotting:
MS and Blood Clotting
What other conditions are mutually exclusive with MS? Interestingly it is pulmonary embolism or deep venous thrombophlebitis. I believe this may be a clue that people with MS do not have blood that clots easily. The main nutrient responsible for blood clotting is vitamin K. (The "K" comes from the Danish word for coagulation.)
We get vitamin K from food and and much of it is synthesized by beneficial intestinal bacteria. These are the same bacteria that are helpful in preventing bladder infections...
I think this places venous insufficiency firmly in the symptoms category instead of causes, but that doesn't mean treatments that reduce it couldn't help prevent the immune system from producing the brain damage which is the hallmark of MS.
posted by jamjam at 12:28 AM on February 11, 2010
Venous insufficiency means that blood pumped into the brain is abnormally slow to drain out.
The body does this 'on purpose' because it gives the immune cells in the bloodstream a better opportunity to get out of the blood, pass through the blood-brain barrier and make their way into the brain than they would have if the blood were whizzing by at the normal rate.
In short, it's a way of enhancing the auto-immune attack on the brain.
However, if blood flow through the brain slows down significantly, there is a terrible risk of clotting.
Just near the end of the original thread, ohyouknow provided a link to a page which, without reference to venous insufficiency, offers some evidence that people with multiple sclerosis have blood that resists clotting, and may even have managed to somehow reduce their populations of the ordinarily beneficial intestinal bacteria which produce vitamin K, which is vital for blood clotting:
MS and Blood Clotting
What other conditions are mutually exclusive with MS? Interestingly it is pulmonary embolism or deep venous thrombophlebitis. I believe this may be a clue that people with MS do not have blood that clots easily. The main nutrient responsible for blood clotting is vitamin K. (The "K" comes from the Danish word for coagulation.)
We get vitamin K from food and and much of it is synthesized by beneficial intestinal bacteria. These are the same bacteria that are helpful in preventing bladder infections...
I think this places venous insufficiency firmly in the symptoms category instead of causes, but that doesn't mean treatments that reduce it couldn't help prevent the immune system from producing the brain damage which is the hallmark of MS.
posted by jamjam at 12:28 AM on February 11, 2010
My daughter's live-in partner of five years, & father of my granddaughter (who is 4 years old) has MS. At best, he may only be able to work for a few more years and has already developed more lesions, has balance issues, and trouble using his hands. Memory lapses, etc. Fortunately, his employer is very supportive as there is someone else there who also has MS so they have prior experience in supporting employees with this horrible affliction (yes, it's in the N. Hemisphere).
It's truly a frightening experience for both of them and he does his best to keep going. I did send this on to her, whether or not it pans out, as he was an EMT before he had to stop due to his medical conditions (Cushings, diabetes, some heart issues, and sleep apnea, he's only 40, egads), and can at least ask his doc about it on his next visit. My daughter does fundraising for the MS society, works, takes care of her 4 year old, and makes sure he takes his meds on schedule (as it's a shot so she gives it to him, one time he was traveling and they confiscated his meds, so he had to get an emergency prescription in Newark, thanks TSA).
She goes to the doctor with him because he can't always remember what the doctor said, or perhaps tries to hide the severity of his symptoms. He can't even walk the dog anymore. So if this has any hope of helping, I'm all for it. While MS in and of itself is not fatal, the complications, along with his other conditions, are pretty worrying to us all.
posted by Marie Mon Dieu at 3:06 AM on February 11, 2010
It's truly a frightening experience for both of them and he does his best to keep going. I did send this on to her, whether or not it pans out, as he was an EMT before he had to stop due to his medical conditions (Cushings, diabetes, some heart issues, and sleep apnea, he's only 40, egads), and can at least ask his doc about it on his next visit. My daughter does fundraising for the MS society, works, takes care of her 4 year old, and makes sure he takes his meds on schedule (as it's a shot so she gives it to him, one time he was traveling and they confiscated his meds, so he had to get an emergency prescription in Newark, thanks TSA).
She goes to the doctor with him because he can't always remember what the doctor said, or perhaps tries to hide the severity of his symptoms. He can't even walk the dog anymore. So if this has any hope of helping, I'm all for it. While MS in and of itself is not fatal, the complications, along with his other conditions, are pretty worrying to us all.
posted by Marie Mon Dieu at 3:06 AM on February 11, 2010
I am another mefite with MS and have been living with it for almost a decade, having been told in September 2000 that the Optic Neuritis I had was often the first sign of MS (bingo).
I'm a self employed single mother of a teenage girl. My MS flares up every now & then. When it does, I try to reduce my workload. I've never actually lost a day of work due to MS.
MS can be a scary beast and coming to terms with it and what it may bring has given me a lot to think about to deal with. Thankfully it's been very slow moving for me, and the fear of the worst case scenario stuff has been more damaging to me mentally than the MS itself.
In the 10 years I've had MS in my life, I've read a lot of stuff. Every few years new stuff like thi pops up, whether it be a somewhat plausible theory liek this one, the recent stem cell treatment that can allegedly reverse all symptoms, the theory it's a sexually transmitted disease, the vitamin B12 & diet coke cure a woman in London came up with .... new theories pop up all the time. Most of them fade away as further examination shows they are not as promising as first thought or perhaps it's just the extensive testing needed.
Sometimes there is controversy such as what happened with Tysabri: it got pulled due to fatal side effects, but was brought back due to popular demand because it really was the only relief for some people.
I took Avonex for 14 months before deciding I'd rather go without because that medication was a much more negative impact on my lifestyle than MS ever was. (I cope quite well with Copaxone though, no side effects, whooo!). But both Avonex & Copaxone only have about a 33% efficacy, which really, is not particularly great. What would you think if your contraception had a 33% success rate?
Some friends have passed these new findings on to me. I always appreciate that someone cares enough to be reminded of me & to pass news on. I kind of feel I'm letting them down a bit by saying, well, yes, it's an interesting theory but more research & studies need to be done and this will take years. News like this interests me, but I don't get exited because mostly it all just fizzles out (disclaimer: I cried with joy when I saw one of the patients of this ) study on TV.
I'm not holding my breath on this one, I am pleased that people are talking about MS. Like Cancer, it's name can strike fear into people. Education and awareness is key. I'd really like to see something done about MS patients in their 30s who are stuck in old age homes as there is no where else to put them.
Oh, and with regards to both the stem cell & the cervical venous options: my MS would have to get a lot worse for me to even consider such treatments.
posted by goshling at 6:56 AM on February 11, 2010 [2 favorites]
I'm a self employed single mother of a teenage girl. My MS flares up every now & then. When it does, I try to reduce my workload. I've never actually lost a day of work due to MS.
MS can be a scary beast and coming to terms with it and what it may bring has given me a lot to think about to deal with. Thankfully it's been very slow moving for me, and the fear of the worst case scenario stuff has been more damaging to me mentally than the MS itself.
In the 10 years I've had MS in my life, I've read a lot of stuff. Every few years new stuff like thi pops up, whether it be a somewhat plausible theory liek this one, the recent stem cell treatment that can allegedly reverse all symptoms, the theory it's a sexually transmitted disease, the vitamin B12 & diet coke cure a woman in London came up with .... new theories pop up all the time. Most of them fade away as further examination shows they are not as promising as first thought or perhaps it's just the extensive testing needed.
Sometimes there is controversy such as what happened with Tysabri: it got pulled due to fatal side effects, but was brought back due to popular demand because it really was the only relief for some people.
I took Avonex for 14 months before deciding I'd rather go without because that medication was a much more negative impact on my lifestyle than MS ever was. (I cope quite well with Copaxone though, no side effects, whooo!). But both Avonex & Copaxone only have about a 33% efficacy, which really, is not particularly great. What would you think if your contraception had a 33% success rate?
Some friends have passed these new findings on to me. I always appreciate that someone cares enough to be reminded of me & to pass news on. I kind of feel I'm letting them down a bit by saying, well, yes, it's an interesting theory but more research & studies need to be done and this will take years. News like this interests me, but I don't get exited because mostly it all just fizzles out (disclaimer: I cried with joy when I saw one of the patients of this ) study on TV.
I'm not holding my breath on this one, I am pleased that people are talking about MS. Like Cancer, it's name can strike fear into people. Education and awareness is key. I'd really like to see something done about MS patients in their 30s who are stuck in old age homes as there is no where else to put them.
Oh, and with regards to both the stem cell & the cervical venous options: my MS would have to get a lot worse for me to even consider such treatments.
posted by goshling at 6:56 AM on February 11, 2010 [2 favorites]
Sent this to a friend. We're close enough to Buffalo to make going to UB feasible.
posted by tommasz at 9:10 AM on February 11, 2010
posted by tommasz at 9:10 AM on February 11, 2010
follow-up from a MeFite who would prefer to remain anonymous
I'm asking the mods to post this for me anonymously because I'm an owner of a vendor to several MS treatment companies, and it could get my company fired from one or more of them for commenting publicly and positively about their competitor's products. What I say below, however, is all publicly available information.posted by jessamyn (staff) at 9:04 PM on February 12, 2010 [2 favorites]
Justinian writes:
Shame about the whole 1% of KILLING YOU BY EATING YOUR BRAIN thing.
I initially read this as dramatic exaggeration, but the number is so far off, it's really not helpful.
1% is orders of magnitude larger than the risk of presenting with PML on Tysabri, let alone dying from it.
The likelihood of suffering from from PML on Tysabri is around 1.2 in 10000 in the first year on drug, and is around 1 in 1000 after 2 years on drug.
There are currently over 48k patients taking Tysabri, and have been 31 total reported PML cases, with a total of four deaths.
31/48000 is .00065 or .065%
4/48000 is .00008, or .008%.
PML is terrible, but Biogen Idec maintains something they call the TOUCH program, which follows patients on drug extremely closely. Since it's an infusion and can only be administered in infusion centers, TOUCH is pretty effective in finding PML, and when they do, they immediately get these patients off drug and get as much of the drug out of them as they can with treatments like Plasmapheresis
If anyone asks me any follow up questions, I'll make a sockpuppet account, but I felt that Justinian's statistic was so far off the mark that it had to be spoken to immediately.
It is disturbing how a new discovery (correlative or causitive or whatever) brings up so much sarcasm. My admittedly light readings on the subject don't see any OMG Cure!! kinds of stuff. Simply the fascinating discovery that a great percentage of sufferers have this marker, and the wonder and excitement that this might lead to a cure, or at least a path toward prevention. Why the sour grapes?
posted by gjc at 7:28 AM on February 15, 2010
posted by gjc at 7:28 AM on February 15, 2010
The most egregious OMG Cure stuff was in the original fpp on the subject, which began by saying "A quiet revolution is taking place in the multiple sclerosis community.".
When I saw that fpp last July, my heart leapt. As someone with MS, I was very excited about the prospect of a breakthrough in the understanding and treatment of the disease. I trust MeFi posters of, well, filtering. As HuronBob said, "when I see something like this on the blue, I read it with the knowledge that you folks are GOOD at finding, vetting, and sharing."
Unfortunately, that wasn't done in this case. Last July I spent a bunch of time trying to see what the big deal was. What I found was some early stage research, and some BBS postings by desperate people sharing anecdotes about undergoing a serious surgical procedure with unproven results.
Maybe I just didn't dig deeply enough, but as far as I could tell, the links from that FPP just utterly failed to back up the hype of the post text. After getting my hopes up, I was left deflated and angry.
I don't think I commented at the time. But when I say the talking-up of this non-story continue on MetaTalk, my anger came out. This thread links to a story in a local paper about a researcher discussing some unpublished results of a study that hasn't yet been completed. This is a disservice to people who have MS. It is worse than a waste of time.
MetaFilter is about filtering, and sometimes that means heaping sarcasm and disdain on topics that deserve it.
posted by alms at 10:54 AM on February 15, 2010
When I saw that fpp last July, my heart leapt. As someone with MS, I was very excited about the prospect of a breakthrough in the understanding and treatment of the disease. I trust MeFi posters of, well, filtering. As HuronBob said, "when I see something like this on the blue, I read it with the knowledge that you folks are GOOD at finding, vetting, and sharing."
Unfortunately, that wasn't done in this case. Last July I spent a bunch of time trying to see what the big deal was. What I found was some early stage research, and some BBS postings by desperate people sharing anecdotes about undergoing a serious surgical procedure with unproven results.
Maybe I just didn't dig deeply enough, but as far as I could tell, the links from that FPP just utterly failed to back up the hype of the post text. After getting my hopes up, I was left deflated and angry.
I don't think I commented at the time. But when I say the talking-up of this non-story continue on MetaTalk, my anger came out. This thread links to a story in a local paper about a researcher discussing some unpublished results of a study that hasn't yet been completed. This is a disservice to people who have MS. It is worse than a waste of time.
MetaFilter is about filtering, and sometimes that means heaping sarcasm and disdain on topics that deserve it.
posted by alms at 10:54 AM on February 15, 2010
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posted by boo_radley at 4:51 PM on February 10, 2010