This is still an election issue

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

This is still an election issue

Postby 1eye » Tue Apr 26, 2011 3:04 pm

I went for a walk today. Walked with my walker, and with Nordic ski poles. Went farther than I have since before the procedure, to the west of my house. Yesterday, I walked with my walker, and went farther than I have since before the procedure, to the east of my house.

Are you Canadian? Do you have 'MS'? Does someone you love have 'MS'? Does a relative of yours have 'MS'? Does someone you take care of have 'MS'?

If so, this election may be a big issue for you. You will hear a lot of argument on both sides, but I think most people on this forum agree that no help is going to come from the Conservatives, majority or not. That means we are in for more years of misbehaviour from the opponents of the science behind the treatment for CCSVI.

There is no concerted opposition to the inhumane, unfair, discriminatory treatment of people labelled with a diagnosis of 'MS' by the Ministry of Health, various provincial colleges of physicians and surgeons, the 'MS' Society of Canada, and the neurologists of Canada.

The problem is there is no strong party which will take the place of the Conservatives, and Canadians cannot decide who is the best alternative. Divide and conquer seems to be the fate of Canada, and by extension, of people with 'MS'.

Democracy and the Internet being what it is, there is still a chance. Liberal MP Dr. Kirsty Duncan has been a most vocal hard-working proponent of this effort. Before the election was called, Liberal Leader Michael Ignatieff was calling for national trials. If you think you have a chance by word of mouth to help any Liberal win a riding, you may tip the scales. Your tweet, your email, your phone call, your conversation with the cashier at the corner store, might save a life. That's democracy, when it works.
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his master's voice

Postby 1eye » Wed Apr 27, 2011 4:49 pm

Thought I'd bump this with a present for anybody who still thinks Steven Harper has the best interests of Canada at heart: the best thing is -- it's in his own words.

http://www.ctv.ca/CTVNews/SpecialEvent7/20051213/elxn_harper_speech_text_051214/
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Re: This is still an election issue

Postby willowford » Fri Apr 29, 2011 6:26 am

1eye wrote:There is no concerted opposition to the inhumane, unfair, discriminatory treatment of people labelled with a diagnosis of 'MS' by the Ministry of Health, various provincial colleges of physicians and surgeons, the 'MS' Society of Canada, and the neurologists of Canada.


Motivating post!

I'm just wondering what you mean by "inhuman" treatment? (I've heard of patients in history being used inhumanely - e.g. testing new treatments on them without giving them complete knowledge just cause of the colour of their skin - see obs/gyn history). But what inhumane treatmentments are there today against MS patients?

Are you referring to funding for CCSVI research? Cause low funding would not fit into definition of inhumane - and MS Societies have already released funds for this to many labs - and for the first time, set NO cap on the total amount they will give (there is almost always a cap in other areas of study!) NO cap here - meaning, as many well-designed studies that come in, they will fund them.
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Postby Cece » Fri Apr 29, 2011 6:45 am

In Canada, people have access to venoplasty only if they do not have an MS diagnosis. It's not due to unwilling doctors, as there is a doctor, Dr. Sandy McDonald, who was willing to treat people for CCSVI; he was shut down last spring after only treating six patients.

If I was a Canadian and had a blockage in my jugular as a complication of dialysis, I would be treated for it. If I was Canadian and had the same size blockage (of unknown origin, suspected to be congenital) and had MS, I would not be treated.
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Re: This is still an election issue

Postby 1eye » Fri Apr 29, 2011 7:32 am

willowford wrote:
1eye wrote:There is no concerted opposition to the inhumane, unfair, discriminatory treatment of people labelled with a diagnosis of 'MS' by the Ministry of Health, various provincial colleges of physicians and surgeons, the 'MS' Society of Canada, and the neurologists of Canada.


Motivating post!

I'm just wondering what you mean by "inhuman" treatment? (I've heard of patients in history being used inhumanely - e.g. testing new treatments on them without giving them complete knowledge just cause of the colour of their skin - see obs/gyn history). But what inhumane treatmentments are there today against MS patients?

Are you referring to funding for CCSVI research? Cause low funding would not fit into definition of inhumane - and MS Societies have already released funds for this to many labs - and for the first time, set NO cap on the total amount they will give (there is almost always a cap in other areas of study!) NO cap here - meaning, as many well-designed studies that come in, they will fund them.


Anybody want to help me out here?

humane: 1 having or showing compassion or benevolence:regulations ensuring the humane treatment of animals
inflicting the minimum of pain:

Something about threatening licenses? Spinal irrigation?
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Re: This is still an election issue

Postby willowford » Fri Apr 29, 2011 7:42 am

1eye wrote:Something about threatening licenses? Spinal irrigation?


Spinal irrigation? Don't know the details of the procedure and didn't know it was/is being tested in MS. Being tested in fibromyalgia I believe. But I hope you at least agree that it is unfair to call experimental research for a cure/treatment inhumane if patients are given all available info and make the choice to participate (same thing in CCSVI!).
If someone came up with this technique, and it seemed to have been a potential therapy for MS, and the medical community didn't begin to test it out, then what do you think would be patients' reactions? WORST than reaction towards CCSVI, which is actually BEING tested, just not quickly enough for patients. Just imagine how angry patients would then be if they saw info on spinal irrigation and realized it's not being applied to MS. Hindsight is 20/20. Just cause we now know something doesn't work, doesn't mean it shouldn't be explored as a potential. Same argument can be made for CCSVI; if god-forbid it ends up not being the answer, will people look back and call the studies inhumane?

I'll agree that being treated inhumanely is truly tragic (I read about human rights violations in some countries everyday and it is heartbreaking). But scientists doing research on a topic of potential (not certain) worth is not an example of inhumane. Most treatments tested for any disease will end up not being the answer; we just need to keep doing research until one time we get the answer right. It would be inhumane to do otherwise.
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Postby Cece » Fri Apr 29, 2011 9:14 am

This struck me as inhumane:
www.thisisms.com/ftopict-15887.html

good discussion, willowford, you have a different perspective on this because of your background, it's refreshing even if I don't agree on everything.

Do you see it as at all ironic if I find benefit in what you shared about provigil here on a forum and use that info to help in my decision-making process? While you are meanwhile seeming to be cautioning us about the use of forum-gained knowledge in our decisions? :)
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Postby willowford » Fri Apr 29, 2011 12:40 pm

Cece wrote:This struck me as inhumane:
www.thisisms.com/ftopict-15887.html

good discussion, willowford, you have a different perspective on this because of your background, it's refreshing even if I don't agree on everything.

Do you see it as at all ironic if I find benefit in what you shared about provigil here on a forum and use that info to help in my decision-making process? While you are meanwhile seeming to be cautioning us about the use of forum-gained knowledge in our decisions? :)


Hi Cece,
I am actually a strong proponent of forums (member of many for other condition I myself have suffered from) - forums provide a sense of community, give hope, and helps us learn more about what we're experiencing. Where I start to get concerned (probably related to the fact that I have learned through training that the way the body works is WAY more complicated than the way most patients depict things) is when patients come to forums for medical advice from other patients - without consulting doctors who have spent years studying a particular topic and know the complexities. Some say, docs don't know everything. And that is true! BUT what little they know about the body (depending on their specialty of course) is FAR more than we can appreciate by spending even a few hours a day researching and googling. They spend years, FULL-TIME (most patients don't have that much time) and they also learn from other experts and get exposure to MANY patients throughout their training. They also learn how to interpret what they read so they are not mislead (my area). This is not true of the knowledge we can get as patients. It truly concerns me that patients rely on other people who they have never met to determine what drug/herb/procedure they are going to expose their body to. Knowledge is important and it gives us power, but if we don't know which knowledge is reliable and all the other aspects that posters don't take into consideration, we are prone to decisions that cause harm rather than good.
For example, on another thread there is a fascinating discussion of neurons, hypoglycemia and MS - some went even further to say that metformin can be considered as a POTENTIAL therapy (pending investigation of course). Then other patients, desperate for any solution, were posting things that suggested that they were ready to begin taking metformin now for MS! This is a problem because while the posts are fascinating (I love the complexity of the body), people don't seem to be aware that the threads are meant for discussion and learning, NOT to pose medical advice without any trials or evidence yet on the topic. If someone begins to take their diabetic family member's pills on their own because their doc is certainly not going to prescribe something without any evidence (not allowed to), that person doesn't realize that he/she has not been screened for the absolute and relative contraindications of metformin or other anti-hyperglycemic agents (docs must screen for these before prescribing). As patients, we just can't know how something acts on various organs in the body. It's not just what it does to the brain cells. Drugs can act on other organs and if there are certain contraindications that patients are not aware of, then they can add organ damage or other adverse effects to their MS as well.

You say you don't agree with what I say - when in fact, all I'm saying is patients have the right to make choices about their bodies - and it is patients' right to get facts, not just stories, in their decision making. It is docs' responsibility to give them the facts and show them resources where accurate facts can be found. I know some patients ignore the importance of factual evidence, and that some docs don't even bother providing this info all together. In the end, it is the patients' health that suffers as a result of both of these approaches.

If I ate a bucket of salt a day and felt better (I'm severely hypotensive and doc asked me to increase salt and water intake), and I go on a forum and tell everyone that this improved my life, my guess is that there may be someone out there who misinterprets my experience as evidence for the benefit of salt on lightheadedness of any cause. They would then do what I did, except, because their health/medical history is different than mine, they may become hypertensive (or exacerbate their hypertension) and have a stroke, heart attack, kidney damage, etc. I would never know this happened based on my post. But even not knowing, I don't think I can live with myself knowing there is a chance.
There is no doubt that patients must obtain knowledge and make choices based on these. But do you think that there is a line that needs to be not crossed by patients in terms of giving each other medical advice without knowing the other patient's medical/personal condition/history and without complete knowledge of the entire body not just related to MS? If so, where do you think that line is?
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Postby fernando » Fri Apr 29, 2011 1:03 pm

This is not true of the knowledge we can get as patients. It truly concerns me that patients rely on other people who they have never met to determine what drug/herb/procedure they are going to expose their body to. Knowledge is important and it gives us power, but if we don't know which knowledge is reliable and all the other aspects that posters don't take into consideration, we are prone to decisions that cause harm rather than good.


But forums only could multiply that effect. In fact it is the same when someone "advices" (tells about, etc) a patient to take or do something without being a doctor.

Forums multiply good advice too.

I think that people is more intelligent. They work with their doctors, under doctor's advice. Nobody is sticking a catheter into his/her own groin.

And, of course, there are people who likes to try anything despite all advise against it.
And for an illness like MS with no options (or very few) it is almost justifiable.
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Postby Cece » Fri Apr 29, 2011 1:30 pm

fernando wrote:Nobody is sticking a catheter into his/her own groin.

Not since Werner Forssmann....
www.thisisms.com/ftopicp-148965.html#148965
:)
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Postby willowford » Fri Apr 29, 2011 1:38 pm

[/quote]

But forums only could multiply that effect. In fact it is the same when someone "advices" (tells about, etc) a patient to take or do something without being a doctor.
[/quote]

Exactly... if we knew how to interpret information and had access only to reliable info, then we would just be spreading those in forums. My main point is that telling someone else what to do in ANY setting can have negative effects if we're not experts in that topic. If I was being sued by a hypothetical employee, and my hypothetical friend who is a doctor starts giving me detailed advice on how to handle my entire case based on his own minimal experience in law, I would be risking a lot if I just listened to him - because as a doc, he may know as much about the law on a particular issue as any other citizen with some legal trouble in the past - but he would not know ALL the relevant details and the ramifications of each action. Only someone trained in the law is in a position to give me that advice.

Some people take whatever their family/friends tell them to take (e.g., vitamins, supplements), without ever thinking, "I wonder what other effects this can have on ME with my particular medical history".

If I had an expensive car, I would only let the most knowledgeable mechanic go near it. If a woman sees a friend with a great hairstyle, they would never (rarely) ask their friend to cut their hair for them in that style! They'd go to the salon where a "hair expert" who has training and knows what to do will do it for them.
The same doesn't always hold for what we put into our bodies. Doesn't that concern anybody that we have are more careful about our cars or hair than our bodies?
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Postby Cece » Fri Apr 29, 2011 1:51 pm

What about asking our friends where they got their hair cut and then going to that salon ourselves?

(I got the name of my CCSVI doc from an online friend here. He came well recommended.)
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Postby willowford » Fri Apr 29, 2011 1:54 pm

Cece wrote:Not since Werner Forssmann....
www.thisisms.com/ftopicp-148965.html#148965
:)


Fascinating.
But hey, at least he did it on his own body and his choice and he knew his anatomy so wasn't going in totally blind. Risky still.

There are many stories in history of docs doing things to themselves (medically of course!) in order to get info on something. H. Pylori, cause of gastric ulcers was discovered this way! the doc actually drank a glass of it (btw, it's a pathogenic bacteria!) He won the nobel prize too for his discovery that this bacteria is the cause.
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Postby willowford » Fri Apr 29, 2011 2:00 pm

Cece wrote:What about asking our friends where they got their hair cut and then going to that salon ourselves?

(I got the name of my CCSVI doc from an online friend here. He came well recommended.)


Unfortunately, noone has advised me on a GOOD, CARING, PATIENT, LOGICAL family doc in my area so I just don't go to the doctor's unless absolutely necessary for now.

As long as we keep in mind that no two people will have similar experiences with something, even if the doc approves. False hope is the worst experience in my opinion (been there). Even if your friend had a positive experience, I'm sure you still looked into the doc to make sure he had the qualifications and talked to him to make sure you are aware of the risks and potential benefits.
I'm referring more to other things that don't need surgeons - like meds that other people take without prescription - or getting upset at docs for not prescribing a med that worked on someone else but hasn't been tested using objective means. Or supplements that don't require prescription.
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Postby willowford » Fri Apr 29, 2011 2:02 pm

Cece wrote:What about asking our friends where they got their hair cut and then going to that salon ourselves?

(I got the name of my CCSVI doc from an online friend here. He came well recommended.)


Unfortunately, noone has advised me on a GOOD, CARING, PATIENT, LOGICAL family doc in my area so I just don't go to the doctor's unless absolutely necessary for now.

But good point! As long as we keep in mind that no two people will have similar experiences with something, even if the doc approves. Even if your friend had a positive experience, I'm sure you still looked into the doc to make sure he had the qualifications and talked to him to make sure he gives you a realistic view of what to expect (I've heard some clinics tell patients that they will for sure be jumping out of their wheelchairs and will never need them again! How do they predict this with so few pubs on the topic? Are they fortune tellers?) False hope is the worst experience in my opinion (been there!).

I'm referring more to other things that don't need surgeons - like meds that other people take without prescription - or getting upset at docs for not prescribing a med that worked on someone else but hasn't been tested using objective means. Or supplements that don't require prescription.
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