What is wrong with MS research?

[frodo]

We all have seen CCSVI prevalence in MS patients oscillating from 0% to 100% according to who the researcher was. Most of us have supposed dark interests or weak skills as explanation for the discrepancies.

Recently the same has happened in other field. Kir4.1, once thought as a MS specific autoantibody, is now a theory nearly dead. (http://www.ncbi.nlm.nih.gov/pubmed/25008547, http://www.ncbi.nlm.nih.gov/pubmed/25008548)

But the situation is similar to what happened with CCSVI. Some researchers find prevalences close to 50% and others close to 0%.

In this case, there are no dark interests (autoantibodies are the preferred explanation of neurologists), and there is also no possibility for weak skills (autoantibodies testing is a chemical procedure, little sensible to human failures)

What does the forum think? What can the explanation be for these wide discrepancies in unrelated tests?

[Kronk]

Perhaps certain MS conditions are specific to particular regions... or the original studies are flawed by the test group. CCSVI testing was originally done in Italy, maybe Italians dont drink enough water so CCVSI appeared to be more prevalent?

Kir4.1 in MS patients is still double that of controls but still only 10% vs. 5%. Maybe it was a "bad batch" they had for the original study. I think the fact they are eliminating potential links is a good thing. Eventually they may narrow it down enough to find some truly effective treatment. Until then I see the fact they are able to test, eliminate a theory, and move onto the next is a good thing.

[1eye]

Why are so many research dollars going towards research on an unproven theory? When the revenue stream is upwards of $10 billion p.a. you gotta look like you're spending some of it on something besides injection kits, carry-bags and tele-nurses.

If enough is spent proving that one of the billions of possible auto-antibodies is not the one we're looking for, we'll be that much closer to finding the possible needle in that haystack.

It's sheer economic momentum which will never be overcome unless patients themselves refuse so-called DMDs. If the only things in existence that 'help' "MS" are so potentially harmful, can we really be on any semblance of a right track? Keeps those graduates graduating, though.

Yes, Dr. Zamboni is being conservative and saying 'stay on your DMDs'. In that avoidance of the wrath of the DMD manufacturers, a self-defeating possibility remains. Are those people the procedure has helped just a DMD coincidence?

Health systems don't always help. Sometimes the big machine remains fed by prolonging brain-death. I think my mother-in-law used to call those dead people she used to give treatments to "gorks". If DMDs are not helping you in particular, remember all the 'research' and 'jobs' they help maintain.

[1eye]

A billion dollars looks like:

6.14 in x 2.61 in x 0.0043 in
one billion one-dollar bills would occupy a volume of
68,909,220 cubic inches
= 39878 cubic feet

This could fit in a cube of dimensions 34.16 feet on a side. In other words, it would take the space of a large house filled floor-to-ceiling with bills.

So, ten or fifteen of these large houses filled with one-dollar bills. Per year.

[cheerleader]

Not every disease has a cure, yet everyone expects absolutes. No one wants to cooperate across specialties. And all researchers work in the dark. To broadly use the fable of the six blind men and the elephant----Immunologists look at the head, vascular doctors study the trunk, nutritionists research the belly, all believe they are describing the animal in its entirety. Yet each only has a partial piece.
http://www.uiowa.edu/~cyberlaw/csl03/blindmen.html
Put it all together, and maybe we'll find healing. Which is why the ISNVD is so important. www.isnvd.org
This is my stab in the dark...http://ccsviinms.blogspot.com/2013/09/m ... perfu.html

cheer

[Kronk]

Not every disease has a cure, yet everyone expects absolutes. No one wants to cooperate across specialties. And all researchers work in the dark.

Well said. The other issue is researchers and patients are unwilling to let go of a theory. When the UBC research is released on CCSVI hopefully there is a definitive answer on the benefits. But will people be willing to accept it? Or will they shoot holes in the study for the sole purpose of protecting their theory.

[misslux]

Not every disease has a cure, yet everyone expects absolutes. No one wants to cooperate across specialties. And all researchers work in the dark.

Well said. The other issue is researchers and patients are unwilling to let go of a theory. When the UBC research is released on CCSVI hopefully there is a definitive answer on the benefits. But will people be willing to accept it? Or will they shoot holes in the study for the sole purpose of protecting their theory.

Agreed! People (researchers, patients, the whole lot) tend to be very unwilling to accept when things are disproven.

[cheerleader]

Why should the UBC study be the last word on the vascular connection to MS, when international researchers are still finding links to cerebral perfusion and venous problems? There are many parts to the equation. And there will be many more years of research ahead. As Dr. Cooke told us in 2009 when Jeff was treated for CCSVI at Stanford---we are at the beginning. EDRF and nitric oxide was only discovered in the 1980s, and it won its discoverers the Nobel prize for medicine.

It's not about patients "unwilling to let go"...it's the researchers. The ISNVD isn't "unwilling to let go." They are still finding evidence, and the group is growing. http://www.isnvd.org That's why NASA is working with Dr. Zamboni on neurodegenerative disease and MS in astronauts, why altitude scientists are measuring venous return at altitude, why Alzheimer's researchers are studying the endothelium and blood flow, why Columbia University is looking at the vascular endothelium and neurodegeneration. We've only just begun to understand the elephant....it's a lot larger than anyone first thought.
cheer

[Kronk]

Why should the UBC study be the last word on the vascular connection to MS.

You are correct, it may not be the last word on the vascular connection to MS. But the effectiveness of the surgery as it is currently performed should be determined.

[PointsNorth]

Wasn't the UBC study being directed by a neurologist?? I'm not holding my breath! Like I already stated they will find precisely what they are looking for.

PN

[Kronk]

Thanks for proving my point...

UBC is a University in Canada they aren't tied to a pharmaceutical company. Lets not forget these are the same researchers that found DMD's do not affect long term progression in MS. Or that the berry extract Valproic Acid can block the plaques caused by Alzheimer's. They will find what they find, its up to the readers to determine if its what they are looking for.

[cheerleader]

You didn't use my whole quote, Kronk. I said, why should UBC have the last word on CCSVI studies, when international researchers are still finding links to cerebral perfusion and venous problems. Since Dr. Zamboni first began his exploration-- at which time he encouraged other researchers to explore his theory and learn more--we've found out that there are mechanical issues, like muscle impingement of veins, blockage by bones, inverted valves and truncular venous malformations that can only be treated with open surgery. This research is evolving as more specialties become involved. Angioplasty may not be the answer for many. Treatment may include surgery, or stents, or spinal manipulation, or lifestyle, nutrition and exercise modifications. It's impossible to say at this point whether CCSVI exploration is over or not....because there are new discoveries being made every day. The UBC study of effectiveness of PTA should not be the deciding factor, nor should any one study.

(BTW- I love Dr. Tremlett at UBC. She looks outside the EAE paradigm...was because of her I learned about high liver enzymes in those w/MS NOT on medications. One of my connections to endothelial dysfunction I made for Jeff. http://www.neurology.org/content/67/7/1291.short)
cheer

[Cece]

We are much closer to the first word than to the last word on CCSVI research. So much yet to be explored. Angioplasty itself was proven 25+ years ago as being effective at opening blocked blood vessels. I value all the research, including the UBC study, but give more weight to angioplasty studies carried out by interventional radiologists, especially studies of techniques, with the measurements being whether or not the IJV is successfully opened with durability. Angioplasty of the IJV has to be mastered before angioplasty's effect on CCSVI symptoms can be studied. Whether angioplasty has an effect on MS symptoms or disease course is a different question than whether angioplasty has an effect on CCSVI symptoms, and it too should be studied.

[1eye]

We are much closer to the first word than to the last word on CCSVI research. So much yet to be explored. Angioplasty itself was proven 25+ years ago as being effective at opening blocked blood vessels. I value all the research, including the UBC study, but give more weight to angioplasty studies carried out by interventional radiologists, especially studies of techniques, with the measurements being whether or not the IJV is successfully opened with durability. Angioplasty of the IJV has to be mastered before angioplasty's effect on CCSVI symptoms can be studied. Whether angioplasty has an effect on MS symptoms or disease course is a different question than whether angioplasty has an effect on CCSVI symptoms, and it too should be studied.

Scientists in Canada seem to ignore large studies by qualified practitioners, as easily as they ignored Dr. Zamboni, because they are not Canadian researchers or neurologists.

The last word on CCSVI and "MS" will not be spoken or heard in our lifetimes. It will probably be in some standard textbook used by doctors everywhere.

I would have an easier time accepting results of research on "MS" if it did not waste so many peoples' time on the unproven auto-immune hypothesis. That research will not stop as long as "MS" patients can be convinced to spend $20K or so per year each, on so-called DMDs. If they don't know what causes it, how han they claim to have "modified" that unknown something?

Of course I would also have an easier time accepting negative results, if I had not experienced positive ones myself, and had not seen them happen to so many other people.

[Kronk]

Of course I would also have an easier time accepting negative results, if I had not experienced positive ones myself, and had not seen them happen to so many other people.

That's all that matters right? personal experience, I am glad that you have benefited and many others have as well. But even more haven't...

If you think MS has nothing to do with immunity then how do you explain myelin damage? unless you think blood flow to the brain affects lesions the spine? There is more to the illness then extra blood in the brain just as there is more to it then T Cells attacking nerve fibers. We learn a little more about MS every year, why abandon hope that a cure or at least effective treatment will not be found in our lifetimes? In your own experience you have found an effective treatment for it.

I prefer not to jump on the conspiracy bandwagon and believe the majority of neurologists and researchers are trying to help people not line there pockets.