'Why You Should Consult Your Doctor, Not Facebook...'

[Cece]

Unfortunately, some people no longer trust these resources because of an early misunderstanding about their views on CCSVI.

I don't think there was a misunderstanding, I think their views were maybe a little too clear!

A patient advocacy issue that I see as important is getting the word out about CCSVI. Here in the US, it has not been on the media or on anyone's radar. It's the opposite sitution from how it is in Canada.

Raising money for CCSVI research also falls into patient advocacy. The CCSVI Walk n Roll in FL was one example.

I think it is a terrible burden for patients to be attempting to become experts and sort through all the CCSVI information and research articles and anecdotes and everything in Dr. Sclafani's thread and at ccsvi.org. If patients were willing to wait, they would not be caught up in this burden, because eventually there will be more of a consensus about this procedure and how it should be done and what the risks are.

I was not willing to wait, I was capable of understanding all that was available to be understood (and there was less then, back in winter of 2010 when I made the decision to go for treatment, than there is now).

You mentioned reading about a clinic that told its patients they would not need the wheelchair when they left. We can all agree that this was unethical and unkind and raising hopes too much. I remember reading an article about a patient who thought, when she restenosed, that the balloons that had been implanted into her veins must have popped. This was a patient who had not been fully informed. As patient advocates, we would have all patients be as fully informed as possible.

[willowford]

Unfortunately, some people no longer trust these resources because of an early misunderstanding about their views on CCSVI.

I don't think there was a misunderstanding, I think their views were maybe a little too clear!

A patient advocacy issue that I see as important is getting the word out about CCSVI. Here in the US, it has not been on the media or on anyone's radar. It's the opposite sitution from how it is in Canada.

Raising money for CCSVI research also falls into patient advocacy. The CCSVI Walk n Roll in FL was one example.

I think it is a terrible burden for patients to be attempting to become experts and sort through all the CCSVI information and research articles and anecdotes and everything in Dr. Sclafani's thread and at ccsvi.org. If patients were willing to wait, they would not be caught up in this burden, because eventually there will be more of a consensus about this procedure and how it should be done and what the risks are.

I was not willing to wait, I was capable of understanding all that was available to be understood (and there was less then, back in winter of 2010 when I made the decision to go for treatment, than there is now).

You mentioned reading about a clinic that told its patients they would not need the wheelchair when they left. We can all agree that this was unethical and unkind and raising hopes too much. I remember reading an article about a patient who thought, when she restenosed, that the balloons that had been implanted into her veins must have popped. This was a patient who had not been fully informed. As patient advocates, we would have all patients be as fully informed as possible.

I agree with most of the above. I think you and I have very similar views in fact in general, just from different ends of the issue.

One thing however that I cannot agree with is the idea that the views of MS Societies have been correctly interpreted by the general public (those not involved with the societies).

Here in Canada, the public was OUTRAGED when they "learned" that the MS Society had ONLY allocated 200,000 dollars for CCSVI research - they were spreading this "news" like it was fact to their fellow patients! I was surprised to read this - but of course did not believe individual's views until I verified it myself - in fact, these people were way off!

The news bulletin CLEARLY stated that the MS Society was accepting grant proposals for up to 200,000 per study (reasonable given that we don't want one group receiving all the funds), with no maximum number of studies! They set NO CAP! (this is NOT something any other society has done - they usually have a cap - the max they can spend on a particular topic like CCSVI - in THIS case, they did not set a max! Any number of well-designed studies would be funded! This level of financial committment is very rare).

People had clearly misunderstood and were spreading rumors and angering fellow patients. This was unfair to both those patients reading this misinformation, and to those working hard at the MS Society.

There are over two-three dozen misconceptions about the approach of MS Societies on CCSVI. the view that the MS Society gets "paid" by pharma and does whatever they want! Rumor, not fact. The view that MS Societies are refusing to fund CCSVI research! BIG rumor! not fact. They fund CCSVI research. Ask the scientists doing the research now. But do we really expect them to withdraw the funds for other avenues of study? That would be irresponsible!

(I can keep going with examples if you don't believe me). It is their obligation to support any research that could be of promise in MS... however, are people actually reading any of the committments they announce and interpreting it correctly?

As a patient advocate, I need to ask, what if (god-forbid) CCSVI ends up not being the "final answer" (hypothetically of course, let's hope it is). If all patient advocates did for several years is encourage more funds to CCSVI but did not support any other avenue of study, wouldn't that be tragic? The amount of time gone when other discoveries could have been made had we advocated a more balanced approach?

I'm certainly not suggesting that your approach individually is not balanced (you may support many other areas of research in MS as well). But the over-emphasis on only one area of study - only CCSVI - can have severe consequences. I have learned that some people now only want to donate money to CCSVI/MS research. This is exactly what I mean by an unbalanced approach. If I donate to the MS Society, I want it to go to the best studies, with the most promise of finding a cure - I don't care if that cure comes from vascular surgery or toe surgery for that matter

This over-emphasis on one avenue of research that is still in its infancy takes away focus and funds from non-vascular researchers who may have to stop working on the MS question and move on to other fields if they can't afford to run their studies.

We can't be guaranteed that CCSVI will or will not be the final answer. (let's hope it is). Which is why we need lots of research on it. But can we guarantee that those other folks taking another avenue to a cure wouldn't have been able to come up with a treatment/cure if given the chance? No. This is precisely why it makes more sense for MS societies everywhere to take a "diversification of funds" approach (giving money to various areas rather than just one or two) that some patients do not seem to like.

[NHE]

In MS, the MS societies are meant to serve that function - they have both patients with MS, physicians knowledgeable about MS, as well as others, who work there to impart important and accurate interpretations of the literature to us. And because there is more than one person, it is less likely that the view of these organizations will be overly influenced by ONE physician's or patient's view. Unfortunately, some people no longer trust these resources because of an early misunderstanding about their views on CCSVI.

I wonder if it is at this point even possible to get that trust back.

Good question, since 2007 the NMSS through its Fast Forward program is now partnering directly with the drug companies.

Fast Forward will be sustained by ongoing philanthropic support, collaborative funding partnerships with industry leaders as well as potential financial returns from its funding portfolio. With success comes reinvestment. Fast Forward will simultaneously fund multiple projects and may receive funding in the form of royalties or equity. Earnings will be reinvested to fund future Fast Forward initiatives.

I'm not saying it's an all-together bad thing. Certainly, if there's a potential drug out there that could help, then PwMS would be interested in seeing it funded. Surely their involvement with small biotechs and universtity researchers, e.g., their partnership with Oregon Health & Science University (see their progress summary), is in the spirit of their prospectus. However, it might be possible for a little of the "fox gaurding the henhouse" paradigm to sneak its way past their good motives especially when Merk has given them $19 million.

Their Fact Sheet states...

Funding Criteria
• Innovative therapies, diagnostics, or medical devices
• A compelling scientific/clinical case with a reasonable path to approval
• Intellectual property secured
• Additional capital on hand or committed
• A strong management team

Perhaps this could be a good source of funding for folks like Dr. Sclafani once he is ready to conduct a trial? It is difficult to imagine that his work could not qualify under these parameters.

At the very least, it's food for thought.

NHE

[Lyon]

.

[griff]

I consulted with an interventional radiologist who was confident he could repair my impaired venous outflow.
Paging Dr. Facebook

(also goes by Dr. Internet)

I like confident doctors, but nowadays I am having second thoughts about it. It reminds me of the horse that went into the wall. The guy who tried to sell it said that horse is not blind, but brave.

The general responses I get from IRs (the ones who are financially involved) that they can fix our veins and no major risks related to the operation. It seems to me that one operation might lead to another and then to another, etc. and our veins are still not fixed and might be in a worse condition then before. Scarring, collapse of veins, etc. No one talkes about these issues.

[Lyon]

.

[willowford]

In MS, the MS societies are meant to serve that function - they have both patients with MS, physicians knowledgeable about MS, as well as others, who work there to impart important and accurate interpretations of the literature to us. And because there is more than one person, it is less likely that the view of these organizations will be overly influenced by ONE physician's or patient's view. Unfortunately, some people no longer trust these resources because of an early misunderstanding about their views on CCSVI.

I wonder if it is at this point even possible to get that trust back.

Good question, since 2007 the NMSS through its Fast Forward program is now partnering directly with the drug companies.

Fast Forward will be sustained by ongoing philanthropic support, collaborative funding partnerships with industry leaders as well as potential financial returns from its funding portfolio. With success comes reinvestment. Fast Forward will simultaneously fund multiple projects and may receive funding in the form of royalties or equity. Earnings will be reinvested to fund future Fast Forward initiatives.

I'm not saying it's an all-together bad thing. Certainly, if there's a potential drug out there that could help, then PwMS would be interested in seeing it funded. Surely their involvement with small biotechs and universtity researchers, e.g., their partnership with Oregon Health & Science University (see their progress summary), is in the spirit of their prospectus. However, it might be possible for a little of the "fox gaurding the henhouse" paradigm to sneak its way past their good motives especially when Merk has given them $19 million.

Their Fact Sheet states...

Funding Criteria
• Innovative therapies, diagnostics, or medical devices
• A compelling scientific/clinical case with a reasonable path to approval
• Intellectual property secured
• Additional capital on hand or committed
• A strong management team

Perhaps this could be a good source of funding for folks like Dr. Sclafani once he is ready to conduct a trial? It is difficult to imagine that his work could not qualify under these parameters.

At the very least, it's food for thought.

NHE

Great summary. I don't know the situation in US, but in Canada, the MS Society is funded partially by pharma companies (2% of their TOTAL funding). Keep in mind however, this funding is NOT attached to any particular study. It goes primarily to non-drug related research (an example below).

Phama companies fund research into their own drugs as well. But they also dispense funds to research NOT related at all to their drugs. Presumably, having their name on other research projects is like an advertising effect (I assume).

There are many studies that were funded by pharma companies. Some would argue that those studies are not "valid". However, these pharma companies only review the study design (PRIOR to starting the study) and make sure it is well-designed. They give the money and then are not involved in any stage after that. (this is only for outside studies, not those that pharma companies run themselves on their own drugs).

For instance, one doc conducted a study to validate a test of cognition for those with MS (nothing to do with treatment as you can see! not even treatment of cognition was involved here!). The pharma company gave them the funds, then after the results were published, the company funded the grad student (not me on that project to go to a conference to present the findings. That was the end of it.

Bottom line, if they are willing to fund studies and step aside and not be involved in the actual implementation or analysis of the results, then why not take advantage of their immense resources to further our knowledge!

[1eye]

http://openparliament.ca/search/?q=CCSV ... +Sclerosis

[Jugular]

I consulted with an interventional radiologist who was confident he could repair my impaired venous outflow.
Paging Dr. Facebook

(also goes by Dr. Internet)

I like confident doctors, but nowadays I am having second thoughts about it. It reminds me of the horse that went into the wall. The guy who tried to sell it said that horse is not blind, but brave.

The general responses I get from IRs (the ones who are financially involved) that they can fix our veins and no major risks related to the operation. It seems to me that one operation might lead to another and then to another, etc. and our veins are still not fixed and might be in a worse condition then before. Scarring, collapse of veins, etc. No one talkes about these issues.

At least in my case (so far), it's been the IR who was 'on the money'. I'm going on 5 months post venoplasty with steady improvements and no restenosis monster. Indeed, the other day, after 13 years of constantly wearing an AFO of on kind or another to work (to conteract my bad ole footie drop), I was able to get through an entire day without one. As Miley Cyrus likes to say - "I guess that's pretty cool."

[cheerleader]

Dear MS specialists, bloggers and pharma reps---

We read Dr. Zamboni's peer-reviewed medical research on PubMed. Patients, caregivers and regular, ordinary people have access to medical literature. I simply found other university doctors who thought Dr. Zamboni's research was interesting, and they offered to test my husband from extracranial stenosis. When he was shown to have severe bilateral jugular vein occlusion, I shared the picture of his veins online, and explained what Dr. Dake found.

There were over 30 patients treated at Stanford, and we wrote about the diagnosis and treatment of CCSVI online, to share with other pwMS. We did not do this to create a social group or to go around doctors. We did this with the permission of our vascular doctor who understood the importance of venous return to the health of the brain and spine.

You can portray this dissemination of published medical research as a Facebook phenomena, and try to paint us as uneducated and gullible fools, but the truth is---we are not. We are educated and intelligent self-advocates who understand the history of MS as a vascular condition. We understand that your research is purely based on the EAE/autoimmune model and that it does not answer many of the questions regarding MS. We understand that many alternative treatments- such as exercise, smoking cessation and a low fat diet-work to help relieve MS symptoms, just as they do in other cardiovascular diseases. We are taking care of our own bodies.

We will not be content to sit back and be good, quiet children and not question you. Too many of us have seen the proof of CCSVI for ourselves. We have seen malformed veins, upsidedown valves, missing veins, closed veins, curly collaterals. We know, from our vascular doctors and IRS, that this is not good, nor is it normal. We have seen symptom relief and MS remission when once closed veins and refluxive flow are corrected.

So, good luck with your new campaign--MS advocates as Facebook wackos---but honestly, it's not going to work. Yes, we use Facebook to communicate, but we are sharing peer-reviewed medical research.

I've included a pic of my husband's malformed veins shown on MRV. They are now open and flowing and those curly collaterals are gone He is 2 years out from his first angio, no MS progression, relapses or new lesions on MRI. He is working full days, biking, hiking and skiing again. He never made a YouTube video, but he speaks about how angioplasty has helped him. Not because he needs more friends on Facebook, but because he knows that if he can help one more person with MS achieve symptom relief and remission, he has done a good thing.

my public response on the Facebook page I started in August 2009 to get the research out.
cheer