http://www.ottawacitizen.com/health/Ottawa+doctors+behind+breakthrough+multiple+sclerosis+study/8189161/story.html
OTTAWA — A team of Ottawa doctors is preparing to publish a full report on its breakthrough multiple sclerosis treatment study that has so far eliminated the disease in those treated.
The experimental study began about 13 years ago as a last resort for patients who fail to improve on drug therapy and who suffer severe symptoms of MS. Snippets of the results have been published "here and there," said, neurologist Dr. Mark Freedman, one of the leads of the program at The Ottawa Hospital, but its never been published in its entirety.
No specific date has been set for its release, but the team's findings are far from secret. With MS not returning in any of the 24 participants, patient success stories appear in news media across the country. Since the original study's completion, about another dozen patients have been treated with all of them showing the same results.
Eliminating MS completely and watching patients improve surprised both Freedman and Dr. Harold Atkins, a bone-marrow transplant expert, who started the study. The two originally set out to monitor the development of the disease and find a way to treat it. Their theory was this: Wipe out the entire immune system, reboot it with a transplant of the patient's own bone marrow and wait for MS to regenerate.
"We thought we might be able to intercept one of the signals that initiates the disease and that would then give us a clue on how to treat it," Freedman said. He jokes that they "had, in effect, failed because the disease never came back. No one expected to see zero disease activity after the transplant."
Patients from Vancouver to Newfoundland, who had given up hope, became part of the original 24, including third-year medical student Alex Normandin from Montreal.
The aspiring doctor noticed alarming symptoms of fatigue, numbness and problems with balance and co-ordination. Researchers at the Montreal Neurological Institute confirmed he has a particularly aggressive form of MS, an unpredictable and degenerative disease that affects the central nervous system.
Most patients do not become severely disabled because the illness moves slowly. But in Normandin's case, the destruction was so fast that doctors expected him to need a wheelchair within months.
Normandin, however, learned of the cutting-edge treatment run by Freedman and Atkins. He became patient No. 19 in the experiment and had his transplant in Ottawa in December 2008.
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The procedure has its risks. One patient died in an earlier phase of the trial. It was in 2001 or 2002, Freedman recalled, saying the death was due to the pill form of the drug Busulphan. Used early on in the experiment, the drug attacks the liver twice, both when it enters the body and again when it leaves. But within a year, the team had found that a new intravenous version of the drug improved patient safety tremendously.
Freedman had the task of trying to scare patients by telling them the risks.
"My job was to talk everybody out of it," he said. "It really is the hardest thing they'll have to do in their lives. It is a bit of a gamble, but with the fantastic team we have in Ottawa, it's less of a gamble."
All participants showed dramatic improvement, and none reported relapses, according to a study on the Freedman-Atkins treatment by a team of MS researchers at the Neuro and the Université de Montréal.
Plus, magnetic resonance imaging (MRI) showed no new lesions in the brain, "no new MS disease activity," according to findings published in the latest issue of Annals of Neurology.
For Normandin, he's now a family physician in private practice on the West Island and no longer takes medication for the illness. His fatigue and balance problems continue to diminish daily.
But despite such dramatic results, none of the MS researchers in this study is calling the procedure a cure.
For one thing, it is not known whether the treatment is good at stopping other kinds of MS, explained neurologist Amit Bar-Or of the Montreal Neurological Institute and McGill University and the study's principal investigator.
Also, bone-marrow stem-cell transplants to treat MS are not approved outside of clinical trials because while the disease itself is not deadly, the procedure is fatal in as much as five per cent of patients.
But Freedman questions the risk rate. He says the five-per-cent figure was from data collected in the 1990s as the team prepared for the experiment. That number has since dropped to about one per cent, he said.
In addition to medical advancements, by comparing the immune responses in patients before and after the treatment, researchers discovered a key biological target for new therapies that might be able to provide similar benefits without the risks associated with knocking out someone's immune system to facilitate a bone-marrow transplant.
Several studies have already noted that in MS patients, the body's immune system attacks its own cells. Overactive T cells (a type of white blood cells called lymphocytes) — that are responsible for defending the body against bacteria, viruses and other parasites — can also damage myelin, the protective insulation covering nerves.
The concept is straightforward, Bar-Or explained. To fight an infection, different types of T cells mount a quick response, then other T cells quickly ratchet back that response, he said. But in auto-immune conditions, including MS, this regulation goes awry and the body attacks itself.
Researchers have zeroed in on a particular subset of T cells, called TH17 cells, that have a substantially diminished function following the experimental transplant. The discovery could help researchers target treatment in MS patients generally.
"We are cautious in not claiming we have figured out all cells responsible for all relapses in all MS patients," Bar-Or noted. "Keep in mind these patients have very aggressive MS, so maybe TH17 are particularly important in these patients."
Emerging treatments, however, are already attempting to target TH17 cells, but the story is even more complicated, Bar-Or said.
"We don't know everything about them (TH17 cells) even in terms of basic immunology. It's likely that within the TH17 subset there may be particular bad guys ... It would be nice to know which because we need to have these cells some of the time. Getting rid of all of them all of the time, may not be completely safe."
Both the clinical study at the Ottawa Hospital Multiple Sclerosis Research Unit and biological study in Montreal were funded by the Research Foundation of the Multiple Sclerosis Society of Canada.
Canada has one of the highest rates of MS in the world — affecting about 55,000 to 75,000 people.
Normandin says his illness has been a blessing in disguise, giving him a unique perspective not found in medical text books.
"It changed my whole outlook on life. It definitely affects the way I see patients. I'm more sensitive in how to talk to them and more empathetic dealing with chronic diseases."
He was once on a career track where the focus was work, but now "life balance" is everything and he is grateful for the treatment that gave him his life back and allowed him to work in a clinic where he can spend as much time as necessary talking to patients.
"Life is great," he said. "I love to say it."
Can this be real? Wouldn't that be awesome?
It would be for one of our tribe!!!!
The first thing I thought of was that RW can be cured! I'm very excited for her and I hope they get this out there to all MS patients.
Quote from: "GrAnnie"
I heard that Canada has one of the highest high rates of MS for some reason..
This is would be wonderful if this disease could be cured.
I believe its more prevalent in colder climes...not so much in hotter environments.
Thank you Annie for your thoughtfulness. They are still in very early stages of testing but hopefully it will continue with these great results.
Quote from: "SPECTRE"
ac_dunno
That's the theory. It's also more prevalent on the prairies. (Fertilizer?)
They don't know much about how you get it so....
Quote from: "GrAnnie"
Sounds promising. :thumbup:
Yeah if it doesn't kill you :)
Quote from: "RW"
What;....You want everything? ac_biggrin
I really, truly, hope this leads to a cure but you are right; at this stage the treatment sounds awfully scary. ac_crying
Destroy the patient's immune system, then a bone marrow transplant and then hope and pray the patient's immune system regenerates. ac_unsure That's a tough roll of the dice but at least it's a positive start for a some real hope. :thumbup:
I'm currently part of a drug trial that takes down my immune system. I have to be very careful about what I eat because a case of food poisoning can cause serious problems (like death).
Stem cells seem to offer the best option so far but these things need to go through extensive testing before they are approved.
Immune systems are quite picky when there's an underlying problem. I really hope there's a cure for this and not just false hope.
Quote from: "RW"
Stem cells seem to offer the best option so far but these things need to go through extensive testing before they are approved.
Well then I recommend that you stay away from KFC. :beurk:
Quote from: "Renee"
Quote from: "RW"
Stem cells seem to offer the best option so far but these things need to go through extensive testing before they are approved.
Well then I recommend that you stay away from KFC. :beurk:
No problem there! I tried it once like 15 years ago and haven't touched it ever again.
Quote from: "GrAnnie"
It's all trial. The depressing part is when they find something that works, it takes like 20 years after everything is said and done to get it to market.
Well....fuuuuuckkkkkk acc_angry
Yeah trials take a long time.
Ask OJ Simpson!!!
Hahaga
Would it appear in the states faster? The states have lower standards than Canada ... Wouldn't that be wonderful? Scary to do something that isn't approved in Canada - but wonderful if after a few years it seems to be successful.
Yes. It would be wonderful :)
You could go THERE for your drugs!!!
How's THAT for irony???
What's ironic about that?
Quote from: "RW"
Quote from: "GrAnnie"
It's all trial. The depressing part is when they find something that works, it takes like 20 years after everything is said and done to get it to market.
Why does it take so long RW?
Quote from: "Fashionista"
Quote from: "RW"
Quote from: "GrAnnie"
It's all trial. The depressing part is when they find something that works, it takes like 20 years after everything is said and done to get it to market.
Why does it take so long RW?
They start with a small pilot trial - like the one you see above. Then they have to compile and review all the data which takes a while. Then they have to get approved for a bigger trial. Then they have to find researchers to carry it out. They need to then find people to do it, do the trial which usually takes years itself. It's also usually done in more than one location across the country. They do the trial, then they have to compile all the data and there is TONS of it. Every time you so much as stub your toe, you have to report it to the trials group. So after that's all compiled (years later) it gets reviewed. Then they apply to be able to do it or use a drug on the general populace which means an agency like Health Canada has to review the study findings. Then it's either approved or not.
Well at least they have something to go on and try. It's too bad it takes so long.
Quote from: "RW"
Quote from: "Fashionista"
Quote from: "RW"
Quote from: "GrAnnie"
It's all trial. The depressing part is when they find something that works, it takes like 20 years after everything is said and done to get it to market.
Why does it take so long RW?
They start with a small pilot trial - like the one you see above. Then they have to compile and review all the data which takes a while. Then they have to get approved for a bigger trial. Then they have to find researchers to carry it out. They need to then find people to do it, do the trial which usually takes years itself. It's also usually done in more than one location across the country. They do the trial, then they have to compile all the data and there is TONS of it. Every time you so much as stub your toe, you have to report it to the trials group. So after that's all compiled (years later) it gets reviewed. Then they apply to be able to do it or use a drug on the general populace which means an agency like Health Canada has to review the study findings. Then it's either approved or not.
That's a lot of steps.
I have heard,Read,investigated,researched cures like this for over 15 years. You would think by now they would have a working cure, so sad
That's true Keeper. There have been a lot of "cures" out there that haven't panned out.
I think it's very difficult when you don't know the cause to find the cure.
Quote from: "RW"
I think it's very difficult when you don't know the cause to find the cure.
Something in the modern diet or environment (possibly a combination of both). Celiacs disease, Crohn's disease and a number of other possible afflictions such as Alzheimer's and even perhaps ADD and many of the mental illnesses may be interrelated. Gluten on its own might not be too damaging but consumed in environments with other biological or metallurgical dietary variants, who knows still.
I always find it interesting to hear about the family members who didn't or don't have MS and what illnesses they've suffered from or eventually expired from. There seems to be a correlation in many cases.
They should be doing more studies into family illnesses and MS. I'm thinking they should be looking into fertilizers as well.
The strange thing is that no one else in my family has had MS.
Quote from: "RW"
The strange thing is that no one else in my family has had MS.
It's definitely environmental.
Why do certain locations in the world have greater incidences of it than others?
Yes but what is in that environment? There are also higher instances in specific areas like the prairies. Agricultural link?
Quote from: "RW"
Or geological, including the water table? I've seen a number of rankings where agriculture wouldn't have conceivably played a part in it although a lot of them do tend to point that way.
They just don't know. Climate plays a roll I'm betting as well.
I was told from day one from the best doctors/specialists that MS was hereditary and that it skips generations..
No one in my family has it but me so there goes that theory.
Quote from: "RW"
As in exposure to sunlight and vitamin D?
Some studies indicate that moving to an area where the prevalence of the disease is less and experiences longer hours of sunlight, before you reach early puberty, reduces your chances of contracting the disease. But I don't think there is a conclusive link it,......as you say,.......they just don't know. ac_unsure