Are patients distorting the science?~Marie Rhodes

[Liberation]

-------------------

[gauchito]

MarkW: I agree wih you. Now couple of questions since you have scientific background. 1) At least in my case, no official neuro mentioned potential vascular involvement when this was first postulated by Reinschfield in 1863 and Charcot in 1868 and recurrently studied in the past 150 years by many. They forgot to read? 2) They create an autoimmune animal model that supports current drug rationale and then they inject to human beings because they think: "it is similar to MS" 3) They postulate MS is multifactorial but they keep treating it as monofactorial 4) They postulate that there is an inappropriate immune response against myelin but they cannot find antibodies against the suppossed antigen 5) On the contrary, the immune system generates, in several cases, antibodies against the drugs 6) they postulate that immune system mistakes the lipoprotein named myelin , one of the most abundant substances in the human body, but "the attack" ALWAYS takes place in the supratentorial/periventricular area of the brain. Noone has so far reported an attack on myelin of his toes.
Not to extend the post: Would we call the picture portrayed by these incredible assertions; "SCIENCE"

[Johnson]

I'm bloody-minded enough (pun unintended) to have my own views on "MS", CCSVI, DMDs, etc., but I really appreciated the lucidity of both gauchito's and eric's positions. Perhaps there is too much specificity in ideas and beliefs.

Who cares what causes "MS"? Perhaps if we figure out what causes CCSVI, we will have a better answer.

What causes pregnancy? Is it the first come hither look? Holding hands? First kiss? Sexual congress? The sperm penetrating the egg's carapace? The fixation of the fertilized egg to the placenta? One can go tangential from any of those premises, and still be on the right track.

It is pretty much agreed that "MS" is an inflammatory disease (and CCSVI an inflammatory hypothesis), and there is talk about venous inflammation. What likely causes global inflammation? Invoking Occam's Razor (for the first time ever), I pick bacteria.

I'm experimenting on myself.

I'm feeling better.

Just to stay on topic, I like Marie's idea, and think that it is a good thing. "Doctor, heal thyself", and "I get by with a little help from my friends" (like Doc. Sclafani, and my Abx Doc.)

edited to add: Perhaps patients are not so much distorting science as shaping it, and that is a grand thing, in my view. I know that I know more about my conditions than most doctors that I see (because they are specific, generally. [Oxymoron observed]). I expect to be involved in my own process.

[Brainteaser]

I don't understand your blasting other people's hard work. If it weren't for Marie and I...well, I don't know....

For newcomers, it's worth reflecting on the fact that in late 2008, if it weren't for the energy of Marie, Cheer, Shayk, Cureorbust and one or two others, CCSVI wouldn't have happened at ThisIsMS or probably at all. As someone said, maybe we need to be a bit more relaxed rather than splitting hairs. It's a pity Marie doesn't frequent here any longer.

[1eye]

MarkW: I agree wih you. Now couple of questions since you have scientific background. 1) At least in my case, no official neuro mentioned potential vascular involvement when this was first postulated by Reinschfield in 1863 and Charcot in 1868 and recurrently studied in the past 150 years by many. They forgot to read? 2) They create an autoimmune animal model that supports current drug rationale and then they inject to human beings because they think: "it is similar to MS" 3) They postulate MS is multifactorial but they keep treating it as monofactorial 4) They postulate that there is an inappropriate immune response against myelin but they cannot find antibodies against the suppossed antigen 5) On the contrary, the immune system generates, in several cases, antibodies against the drugs 6) they postulate that immune system mistakes the lipoprotein named myelin , one of the most abundant substances in the human body, but "the attack" ALWAYS takes place in the supratentorial/periventricular area of the brain. Noone has so far reported an attack on myelin of his toes.
Not to extend the post: Would we call the picture portrayed by these incredible assertions; "SCIENCE"

Is it OK if I have this engraved in bronze?

[zap]

if this was Facebook I would Like gauchito's post.

[EJC]

Well having read the OP as best I can (I'm currently in Shanghai so links to Facebook are not accessible) I'm wondering if people here can't see the wood for the trees.

I read the OP as this:-

Communication has inexorably changed the world - specifically the internet - Tim Berners-Lee has a lot to answer for!

In my mind Marie means this -

Patients and sufferers have never been in the position where they are now, able to watch medical understanding of new and proposed new conditions unfold before their very eyes.

Being able to have the free choice to be able to elect to be part of this learning process by having cutting edge procedures,

Are patients distorting what is happening? Of course they are, how can they not be in this new age of communication.

I've never known a time when people such as Dr Sclafani were able to openly discuss theory on a world wide basis with patients the way he does now,

This leads to transparency, which sometimes is a good thing - sometimes not so good - we publicly see every blind alley found, something that previously would have been undertaken in the privacy of the consultation room with each pateint blissfully unaware of the results of the next.

This transparency can be a double edged sword, it can create false hope, but it can also accelerate positive findings, it's all happening in a very public way.

As human beings we strive for transparency, asking "why" is a fundamental insticnt in all of us.

For years it is clear that big Pharma chooses to surpress clinical studies that may not be what you'd call helpful tot he sale of their drug. That's business, but it's not transparent.

CCSVI and the theories that surround it have been born in a age of unprecedented openness and communication , it caonnt do anything other than shape the research - good and bad.

Personally I like the transparency, I don't see dead ends and blind alleys as failure, I see it as a learning curve.

A problem only occurs when people choose to elect to have a cutting edge treatement of this nature having not completely comprehended the fact they really are trial patients,

My partner undertook the procedure, from day one we've understood how unproven this all was - fortunately for Emma 4 months on so far so good. Be we still understand she is no more than a ginuea pig.

The internet has allowed us to make a reasonably informed choice, we read as much as we can, we process the information and we take from it what we can. We make what we believe is a balanced decision.

So in answer to the OP's question "Are patients distorting science?" yes, how can they be doing anything other than that.

A more pertinent question might be "Is tranparency and volume of information available to patients via the internet distorting the science?

[MarkW]

Neuros are simply wrong, Gauchito, when they say that the cause of MS is auto-immune only. You give some of the reasons why MS is not only caused by auto-immune issues. The evidence of vitamin D impact during gestation (before birth) and presence of 'MS genes' is sufficient to say the MS is multifactorial, without even mentioning the vascular evidence you cite.

My main point is:
Most MS neuros have tunnel vision on the cause and treatment of MS but this does not justify vascular specialists or patients having tunnel vision that CCSVI/vascular issues are the monofactor in the cause and treatment of MS. Both are incorrect and not good science.

If you read Prof Zamboni's papers/press release, you can see he understands that he is working on a multi-factorial disease.

Q: What is the cause of MS ?
A: We do not know. (very difficult for scientists and doctors to say).

I hope this explains my position and answers your questions.

MarkW

Gauchito posted:
MarkW: I agree wih you. Now couple of questions since you have scientific background. 1) At least in my case, no official neuro mentioned potential vascular involvement when this was first postulated by Reinschfield in 1863 and Charcot in 1868 and recurrently studied in the past 150 years by many. They forgot to read? 2) They create an autoimmune animal model that supports current drug rationale and then they inject to human beings because they think: "it is similar to MS" 3) They postulate MS is multifactorial but they keep treating it as monofactorial 4) They postulate that there is an inappropriate immune response against myelin but they cannot find antibodies against the suppossed antigen 5) On the contrary, the immune system generates, in several cases, antibodies against the drugs 6) they postulate that immune system mistakes the lipoprotein named myelin , one of the most abundant substances in the human body, but "the attack" ALWAYS takes place in the supratentorial/periventricular area of the brain. Noone has so far reported an attack on myelin of his toes.

[cheerleader]

Mark,
We agree. My husband still takes copaxone. There is some type of immune involvement (as there is in stroke and neurodegenerative disease), and he is dealing with his MS with diet, exercise, pharma, supplements and blood flow. So far, so good. No MS progression, no relapses, only symptom relief. Neither Marie nor I have ever said CCSVI angioplasty is a cure. Neither has Dr. Embry. Neither have any of the doctors researching venous blood flow. We just want to make sure the research continues without the "editorializing" displayed by Dr. Zivadinov last week. His comment that MS could be the cause of CCSVI seemed politically motivated, given the timing of that press release while he was at the neurology convention...he didn't say that in 2010, when the research was first released. And that press release got picked up around the globe, and will be used to squash further research.

Marie's note was about how patients are balancing out commercially sponsored research by speaking out. Her reference to veins was about the venocentric nature of MS lesions and the unanswered questions that continued vascular research may help answer. Obviously, MS is a multi-factorial disease.

I wanted to address the way you read all sorts of things into Marie's essay that simply weren't there, Mark. We're all working for the same thing, and it felt dismissive the way you responded. Marie's book is out, and I recommend it to all who wish to understand how the internet has impacted research into CCSVI--
link to Barnes and Noble
cheer

[mrhodes40]

Well put Cheer--thanks.

I am rarely here because I am busy and things like this thread are a time sink, but I do want to clarify a few things.

First, my op-ed was intended as a comment on how patient involvement has changed the current discussion. It wasn't a dissertation, nor do the rules for such a document apply. It was not written for this audience but for the CCSVI interested community re: a debate that we were having there. it was re-posted here by someone who thought it'd be interesting to some TIMS members.

Second the title of my book "CCSVI as the cause of Multiple sclerosis the science behind the controversial theory" is descriptive of what genre of material is evaluated in the book, it is not a scientific conclusion of course because my book isn't "research" but reference. THIS IS IMPORTANT: THE TITLE IS CHOSEN BY THE PUBLISHER.

I had no say in it at all. FYI Dr Zamboni liked it.

Third, The book was reviewed and multiple drafts were seen and commented on by Simka (did the most) Haacke (also wrote foreword) Zamboni, Dake Hubbard, Burks (neuro and MS researcher--reviewed 2 chapters on immunity and how CCSVI relates to MS research) and very glowingly reviewed when it was in galleys by Dr Schelling.

Will everyone like the book? No of course not. I am making the argument FOR CCSVI... what is the scientific basis for the CCSVI association with MS?---in other words, if you are Dr Schelling or Dr Zamboni what are the references you are looking at and what do they say?

I have an entire chapter on the patient activity to move CCSVI research forward, it is documentation of how the patient population became involved right here on TIMS (in fact, every chapter starts with an italicised quote from a TIMSer... )

also I address what is known what isn't at this point and what might it mean? what about treatment failure, and by the way if a person is thinking about looking for treatment what kinds of things should they be aware of so they can talk to their doctor and what questions do they need to ask to understand what they are getting into?

patients have a right to information so that they can have the discussion with their doctor. Treatment is available everywhere these days--people need to know what to ask

the book is published by the reference division of McFarland. My editor is an established science reference book editor with 10 of her own books still in print. I get a 10% royalty (3 dollars and I send 10% to CCSVI Alliance for research) and spent 5k writing it (research papers are expensive) A book of this type sells about 1k a year. Do the math. This was a two year labor for the benefit of CCSVI....it almost killed me physically...I typed it with dragon speak and one hand.

People here may not recognize that Cheer is president of the charity CCSVI Alliance a 501(3)C charity that raises funds for CCSVI research.

Let me also recognize that Sharon, also from TIMS, has volunteered her energy to be CEO of this charity. That Marc, Mitch Michele and others also gave more energy and life than than they could spare to make it work...

CCSVI Alliance has been recognized by the NMSS for reputable information re: CCSVI and they added a LINK to the CCSVI Alliance website on their CCSVI page so MSers can go to the Alliance for information.

That is a big deal... the NMSS can hardly be called a CCSVI proponent. What does that say about the quality of the work they are doing at CCSVI Alliance?

Not many people have devoted so much of their lives to advance CCSVI information/research as the people mentioned in this post. It is wrong to countenance vilification of people who've devoted so much to a cause that will benefit all of us.

How much of your time and money has been devoted to supporting CCSVI research so there is some legitimate stuff to point to? Almost all of Zivanidov's research money was raised by patients...I attended several fundraisers and gave a lot of money to help.

before you throw rocks at people who are putting everything they've got into that ask yourself if you are adding something positive to the discussion.

Let's lighten up and be part of the solution.

marie

http://www.ccsvibook.com
http://www.ccsvi.org

[Rose2]

It really is amazing to me how I believe I can pick out those in this group who are personally affected by MS. and those who are NOT.
When you are disabled by such a horrible malady with NO Hope, why would you want to argue every little point?
I am so grateful to Cheer for being the brilliant woman she is and now I have my life back with my family.
Say what you like. CCSVI is real and the diagnosis and treament for it has improved many lives.
I hope it will help someone you love.
Rose2

[Brightspot]

Congratulations Marie!

It seems your book is educational and is stimulating discussion and awareness.

I look forward to reading it.

[AMcG]

Well done Marie. I have ordered the book (will make a nice present for my neuro.) What I want to know is when is the film?

[Quest56]

It really is amazing to me how I believe I can pick out those in this group who are personally affected by MS. and those who are NOT.
When you are disabled by such a horrible malady with NO Hope, why would you want to argue every little point?

I think what is more amazing is how little focus seems to be given to those who have had the CCSVI treatment and have not experienced a symptomatic benefit.

Another point relates to bias or vested interest. It is often argued that neurologists and drug companies disfavor CCSVI treatment because they stand to lose money. I think there is another kind of bias shown by those who take such hope from what CCSVI represents (for themselves or for loved ones), that they seem to take an unbalanced view of it.

I'm off topic, I know. I haven't read "the book", and don't intend to. I'll instead wait for the final scientific consensus from the medical community (some of whom hopefully will read "the book").

--Tracy

Edit_05082011: Fixed poor wording

[Rose2]

i have not read the book either. just know from my own experience.