This Is MS Multiple Sclerosis Community: Knowledge & Support

I mentioned on the CCSVI forum regarding Dr. Zamboni's statement that MS patients undergoing CCSVI treatments often experienced improvements in fatigue, etc., that this could well be a placebo effect and it would take some time to really tell what the results of opening up the veins did for a person's health.

This comment about the placebo effect seemed to have been met with some derision, as though I was suggesting that treated MSer's were thinking they were feeling better just because they wanted the treatment to work.

But what I was talking about was not a subjective belief of vague health improvements as a result of believing the treatment would help, but instead what I believe is the profound ability of the body to physiologically alter itself as a result of the mind's power to influence the body's state of health to some degree. In other words, I believe that our minds DO have some power to heal us, and the placebo effect demonstrates this by resulting in fundamental and physical changes in our body that are measurable.

A new review seems to support this proposition that the placebo effect is not just our subjective interpretation of a substance's effect on us, but an actual physical change in our body as a result of our mind's belief in the ability of the substance to improve our health. In other words, by our belief in the substance, we actually experience an impact on our health.

I just wanted to open this topic up for discussion because I don't believe a "placebo effect" is a negative, I think it's just our body's amazing trigger that allows us to heal ourself to some degree. Unfortunately, those improvements cannot be distinguished from the benefits from the actual treatment itself, which complicates our ability to figure out what the treatment is responsible for versus what our innate healing ability is responsible for. But it isn't (in my view) that the person is "making up" improvements because they really want the treatment to work when we see a placebo effect, but instead it is the mind's connection to the body that actually results in real physiological improvements.

http://www.msnbc.msn.com/id/35469335/ns ... alth_news/

Just to add as well that I think this is why clinical trials are so important in MS treatment research because of the profound ability of our bodies and minds to alter our health. As we've seen in clinical trials (ABC's for example), placebo effect can be as high as 30% reduction in disease activity. So this makes it that much more critical for us to have double blinded trials so that we have clear evidence of the actual treatment's effect on us.

Hi Eric,

This is a fascinating topic and I hope more people join in. In the meantime, I'm going to add links to a couple of relatively recent threads about it in the General Forum (I excluded all the posts in the CCSVI Forum )
http://www.thisisms.com/ftopict-9424.html

...including my own thread on "The Nocebo Effect - Placebo's Evil Twin."
http://www.thisisms.com/ftopict-8567.html

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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

That's awesome euphoniaa, thanks. I hadn't read those posts before.

I agree with the nocebo effect too.

We are fascinating creatures, aren't we?

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All the variations of placebo are fascinating, thanks for the article Lyon.

Maybe that's why the DMD's are priced so high, because the higher the price of drugs the better the placebo effect and result.

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Although some people think it is only a placebo effect, it might not. Placebo effects are transient and temporary usually. They can not stop a deteriorating mechanism (such as the progress of MS).

Even if CCSVI is a placebo effect (but I doubt it is), it is a good one. Look at the drugs and how they were not able to get any positive sense to the patients for few decades. At least, this one is letting people feel much better for a year or so.

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http://www.badscience.net/2008/08/part- ... bo-effect/

BBC Radio4 on Placebo effect

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Doctor Mark Freedman says in his comments to CCSVI that the placebo effect is stronger with ms-patients than with other patients. He says: "We were flabbergasted by the studies in the 80's and 90's were you almost just signed a consentform and half the patients became better over night."

This is news to me. Anyone know anything about this?

Freedmans comment on CCSVI (April 14, part 2, comments on placebo effect approx 2.15 min in):
http://bit.ly/11jwy

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Sorry - I meant does anyone know more about the claim that pwms have stronger placebo response than other patients? I find it strange that I haven't heard about this before. Is it true? What does it mean?

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well the disease itself starts out as relapsing remitting, the disease itself is up and down. even if moving on to progressive state you can still have attacs. you can still have periods with loads of leftover symptoms, and periods where it is relativly clear. it must be a very hard thing to monitor.
what is make us feel better, is it the treatment, is it the placebo, or is it just a good period with little ms activety.

That's a very good point, sofia. I know I ask myself all the time weather things I'm doing are helping, or weather it's just the way it would have happened regardless. I know today I can feel my shin better, but I honestly can't tell you why it's getting better. Of course, I really really want to believe that it's the helminthic treatment that I just went on The only way to know that your benefiting from a treatment, due to the placebo effect or otherwise, is to know how well it works over time.