The Canadian MS Society is not happy...

[Catty1]

My sister died of MS just over 4 years ago. If there had been a snowball's chance in hell that this might have worked for her, we would have gone for it.

She was brilliant and fun, and then not much more than a breathing corpse the last 2 years of her life. She was 48 when she died.

Hence, I do react strongly to this.

ETA: It's not so much the question of research being suppressed - it's more the pharma companies that produce the very expensive meds for MS.

[pomtzu]

Didn't Farrah Fawcett go to Germany for treatment?

Yes - and didn't she die??? She didn't want conventional treatment because she didn't want to have to "wear a bag". The conventional treatment might well have saved her if she had started early enough.

A friend of mine was diagnosed with colon cancer when in her 30's, and she declined chemo and opted for a radical treatment consisting of coffee enemas and there was something with sea shells involved - can't remember what. Of course she died. She was a very tiny, petite girl,, but looked like a shriveled up 90 year old lady, in a semi fetal position, laid out in that coffin. She left behind a husband and 2 small children. Her husband told me later, that the doctors were certain she would have survived if she had taken the chemo and radiation.

So these experimental, unproven, radical and dangerous miracle treatments, are much of the time, a death sentence, or at best, of no permanent value. False hope that they offer, usually only benefits the people that peddle their wares.

[Catty1]

http://calgary.ctv.ca/servlet/an/loc...ub=CalgaryHome

Alta. woman returns home after undergoing controversial procedure for MS

Christine Engelhardt spent thousands of dollars on controversial MS treatment in Costa Rica.

Updated: Wed Sep. 01 2010 16:56:35

ctvedmonton.ca


A Stony Plain nurse is back home after receiving a controversial new treatment for multiple sclerosis in Costa Rica.

Christine Engelhardt has been living with MS for 10 years. She says one of her first symptoms was blindness in her left eye.

Engelhardt is now one of many MS sufferers who've chosen to travel out of the country to receive the liberation treatment, which involves the widening of the veins.

The procedure is based on research from an Italian doctor who found blocked veins in some MS patients could be reversed by a procedure similar to balloon angioplasty. Several countries are offering the treatment and have reported successful results but it is still not available in Canada.

Engelhardt spent $20,000 to obtain the treatment in Costa Rica. She says two weeks ago she couldn't pour coffee without spilling because her hands had no strength. Her symptoms also included headaches, loss of balance, and severe muscle spasms.

"My fatigue was insane. I couldn't make it through a whole day," she said.

She says after undergoing the treatment in Central America, she felt instant change.

"When I first woke up from the anesthesia I could feel my left foot, which I haven't been able to feel for about two years."

Engelhardt says she is disappointed the treatment hasn't been approved in Canada.

"I just wish everyone had this opportunity to feel better because we deserve it...we deserve the choice."

On Wednesday, officials announced the federal government would not fund clinical trials in Canada.

"There's no evidence that venous insufficiency is linked in any way to multiple sclerosis," said Dr. Alain Beaudet with the Canadian Institute of Health Research.

Health Minister Leona Aglukkaq said the federal government will assemble a working group to study data from seven studies of the treatment, which are now underway.

"To ensure that we have the evidence to support this procedure, we need to do the research," Aglukkaq said. "And once we have that, we will proceed -- if there is enough evidence from the seven research projects already underway around this subject -- we will proceed with pan-Canadian clinical trials. We will support that. At this point in time, we do not have the evidence to proceed."

Aglukkaq said the studies are expected to take two years to complete.

With files from Susan Amerongen and CTV.ca News Staff

**********************************************
Countries that are offering the procedure: Scotland, Germany, India, Poland, Costa Rica...that's all I know of. The first two, at least, aren't "third-world" countries.

[pomtzu]

I sincerely wish all the people who have had this treatment, lasting results, and that it proves to be positive, and not just a temporary fix - a very small bandaid if you will - on a very large wound.

I personally would be interested to see where they stand a year or two after the initial treatment, and if it has to be repeated.

[Catty1]

You and me both, Pomtzu.

My friend Neil is proceeding immediately to physiotherapy via his GP; guess he is striking while the iron is hot. Hope it works for him.

$20,000 (last reported cost in Scotland was $8,000+) is barely a year's salary for some ($20,000 would be a dream for me! ). Given what a patient and their family(ies) might spend on everything from meds to home care to losing wages being a caregiver, I suppose this price doesn't seem so bad. Neil had a companion fly with him to help him, and most if not all airlines allow a companion to fly at half price.

I hope the people that have benefitted from this have some sort of follow-up plan to try and move forward. It's like a heart attack, in a way - one doesn't go back to daily fatty fast foods and smoking and over-indulging in booze.

If this treatment even only gives people a break from this illness for 2 months...I wonder if the cost might be worth it?

And - if the results are often temporary, and the veins clog again - THAT might even provide a huge clue as to how to treat this disease in a more permanent way.

My sister's case was too advanced for trials of medications (many of which work well - have heard good things about Avonex). Also - the existing meds were not recommended for her. Reason? It's a dubious "benefit" of so-called "socialized medicine". Provincial governments cover the costs of these meds - some of them run $10,000 a month. Therefore MS specialists prescribe the medications for cases where they will do the most good - ie, less severe cases.

NB: Just as an example, for the drug trials, a person with MS has to be able to walk the length of a football field. And the first stage of the trial is done on healthy people to establish a safe dosage.

[pomtzu]

NB: Just as an example, for the drug trials, a person with MS has to be able to walk the length of a football field. And the first stage of the trial is done on healthy people to establish a safe dosage.

IMO - sounds pretty darned ridiculous - both counts.

If you can walk the length of a football field, then you can't be that bad - very early stages I would think, or a much less severe form.

And healthy people being used to establish safe levels???? How can levels of safety be measured if the person being tested, doesn't even have MS??? A person with MS, and one without, will respond differently I would think. Of course, I'm no doctor or researcher, so what do I know???

[Asiel]

You'd be surprised at how much you know Pom.
Canada and Britain are the two hot spots for MS. I don't think there are too many people who don't have a family member that isn't suffering from ms.
One of my closest friends is totally paralyzed from the head down, fed by tubes and can barely whisper, she's been like this for 7 yrs now. Most of the time she is sleeping but when she's awake she enjoys our company. We've not once heard her say she would rather be dead than living like this. And neither has her husband or daughter ever mentioned this.
There are so many people out there who have ms and all are at different stages.
The drug trials you find ridiculous are just that...ridiculous. We have a large center 8 hours away who conduct trials and this is just not so. It goes to show to what extent the media and gossip have people believing crap like this. A few people that I know took part in the trials, they discussed it in whole with our society and nothing like that takes place...ever...

Everyone would like to see a cure for this disease but so far because of the differences in just about every patient nothing that works for one will work for everyone. But that doesn't mean to say patients should be putting their lives in danger because of some hype.

[Medusa]

This is rather off topic but not really. Years ago I saw a report about MS patients getting bee stings and many of them claim that they went from a wheel chair to being able to walk again. I never did see any follow up programs and I just wonder how they're doing now. I also saw a story about a woman who sky dived and claims that she improved remarkably w/MS symptoms but again, I saw no follow up so I don't know how she's doing either. Has anyone else seen a similar story?

[Catty1]

http://www.theglobeandmail.com/news/...rticle1693372/

Caroline Alphonso and Gloria Galloway

Toronto and Ottawa — From Thursday's Globe and Mail Published on Wednesday, Sep. 01, 2010 10:30PM EDT Last updated on Thursday, Sep. 02, 2010 6:38AM EDT

Saskatchewan is not backing down from its plan to start clinical trials on a controversial new treatment for multiple sclerosis, even though the federal Health Minister, the Multiple Sclerosis Society of Canada and the health-research community insist it’s too risky and that the province lacks the capacity to forge ahead.

The province’s Health Minister, Don McMorris, said once Saskatchewan gets the green light from researchers conducting diagnostic tests on patients, it will move toward accepting clinical trial proposals for the so-called liberation therapy, which could be as early as the new year.

“We started down this road without needing the approval or disapproval of the federal government. Provinces do research in areas on a regular basis. We feel this is an area that we need to take the leadership role, and we’re not backing down from that position,” Mr. McMorris said in an interview on Wednesday.

Federal Health Minister Leona Aglukkaq has accepted the position of the Canadian Institutes of Health Research that it’s too soon to conduct clinical trials on the procedure pioneered by Italian doctor Paolo Zamboni. The MS Society added leverage to Ottawa’s position on Wednesday by saying Saskatchewan can’t conduct a meaningful clinical trial on its own.

Yves Savoie, president of the MS Society of Canada, said a true clinical trial must be conducted at more than one institution and in more than one province. Because MS is so variable, “it will require well over 1,000 participants that will be recruited through a number of centres,” he said. “A single province or a single site would simply not be a way to get to the definitive answers that we all want.”

Saskatchewan has the highest rate of MS in the country.

Officials in the province rejected the notion that their clinical trials, if approved by the necessary regulatory bodies, would be lacking in science or thorough research. A spokeswoman for Premier Brad Wall said the province is not opposed to a joint study with another province. Researchers in Saskatchewan are already about to start conducting diagnostic testing of Dr. Zamboni’s theory with their counterparts in British Columbia, one of the seven projects funded by MS Societies in Canada and the United States.

“We don’t accept the fact that a thousand individuals would be required for a clinical trial. There is a clinical trial right now in New York with a much smaller group – and have been for many other clinical trials for various medical research. We would take our lead from the specialists putting together proposals,” said Kathy Young, communications director for Mr. Wall.

Liberation therapy has not only pitted the federal government against one province, but it also has been hotly debated in the MS community since Dr. Zamboni published a study suggesting the disease is a vascular disorder caused by vein blockages that lead to a buildup of iron rather than an autoimmune disease. He said it could be treated with a simple surgical procedure – angioplasty.

Studies on his theory have had mixed results. Researchers in Germany and Sweden recently found no unusual blockages in the veins of multiple sclerosis patients compared with those of control groups.

What also remains unclear – and what the diagnostic studies in Canada and around the world may determine – is whether multiple sclerosis causes blocked veins or if blockage of the veins leading from the brain causes MS, as hypothesized by Dr. Zamboni. The CIHR recommended on Tuesday that therapeutic clinical trials be put on hold until the results come in from the seven research projects to determine if there is a link between vein blockages and the disease.

But the uncertainty hasn’t stopped multiple sclerosis patients from receiving treatment. While the procedure has yet to undergo clinical trials in Canada, many here have shelled out thousands of dollars for the unproven and experimental treatment in countries such as India and Poland.

Saskatchewan’s announcement in July that it would finance clinical trials put it at the forefront of Canadian efforts to introduce a treatment. Newfoundland and Labrador has told the CBC it is also willing to help fund clinical trials.

“When we look at the prevalency of MS within our population, when you look at the number of people that have gone overseas to have the procedure done and the anecdotal evidence that is coming back, it puts a strong case,” Mr. McMorris said. “What we want to do as a government is take a leadership role and either prove or dispel this so-called treatment.”

ETA: Comments section on this article: http://www.theglobeandmail.com/news/...rticle1693372/

[Asiel]

Medussa I was laughing so hard when I read your post I almost fell out of my chair. Yes, I can answer those questions for you. The bee sting hype was just that. A person well known to me was one of the foolish to try the bee sting treatment...and she did get results....an ambulance was called and she was lucky to make it through the bee stings. That's when she found out she had triggered a response that left her with a severe allergy to bee and wasp stings. Besides being chided by every doctor that saw her she now carries an Epi Pen and will for the rest of her life. And yes, she still has MS. Uses a wheelcahir most of the time for shopping and long walks but still has good days where she can navigate in her home. Will she fall for the "liberation" treatment...not on your life, her doctor explained it all in great and precise detail to her and she trusts him completely. Guess the bee stings taught her a lesson.
As for the sky diver that was a well done hoax and it was found out. A lot of people had actually donated money to help "the cause"...there was talk about charges but then everything died down so don't know what happened after that but I'm sure if she had been cured she would have made headlines.

[Medusa]

I can certainly see how bee stings could cause a reaction but there were several people involved and none had reactions but only good results. I wondered if they had to keep getting stung for the rest of their lives or if they were able to discontinue them and consider themselves in remission. I guess I could Google it, huh?

[Asiel]

Nobody seems to have heard of any great results from the bee stings. I know the "Enquirer" did go on a hype with stories about what a great cure it was for people but then the Enquirer isn't anything I take seriously, though the story did sell lots of papers.
Googling it is a great idea, I never thought of that. Guess that's what I'll be doing too, although I watch where the info comes from, could be from the 'Enquirer"

[Medusa]

I saw the story on TV on a show such as 60 Minutes but don't quote me. It was years ago, maybe 20 or so, and I don't remember what program it was on. The Enquirer does some fluff but they once in a while do break a true story. (The John Edwards' baby story comes to mind but that's a totally different type of reporting.) I guess even a blind squirrel can find a nut now and then.

[wombat2u2004]

Canada and Britain are the two hot spots for MS. I don't think there are too many people who don't have a family member that isn't suffering from ms.

I wonder why. It must be something enviromental that causes it do you think ???

[Asiel]

According to the numerous neurologists that have spoken about this , it seems that the damp and cold climate plays a huge part in it. According to some researchers if a person is born in Arizona or other tropical country and lived there till they were in their teens and then moved to Canada, the chances of them developing ms would be almost non existant. And if a person is born in the cold damp countries and live there till their teens and then move to the hot countries the chances of developping ms would remain high.
I haven't looked into this theory so I don't know if it's true or not but seeing it comes from leading researchers I don't discount it.
I know for a fact that Canada does have a high index of ms and Britain just as high if not more so.
I do know that teenagers in Canada often experience their first attack between 14-16.