The Drug/MRI Fallacy

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The Drug/MRI Fallacy

Postby vesta » Mon Jan 20, 2014 9:44 am

I believe we need to vastly transform current MS treatment. The Neurologist has determined one has MS. MS research has concluded one should begin DMD (Disease Modifying Drug) therapy as soon as possible. The condition of brain lesions monitored with the MRI will determine the effectiveness of drug therapy. Except the lesions aren’t related to MS disability. And the drugs won't prevent descent into Progressive MS and disability.

The first big breach in the drug fallacy came with a scientific study conducted by a University of British Columbia research team who published their paper in the JAMA (Journal of American Medical Association) in July 2012.

Their conclusion? Quoted from <http://www.nytimes.com/2012/07/18/healt ... html?_r=3&>

“ Using a well-validated scale, they found that those who took interferon beta were no less likely to suffer long-term disability than those who took none.” “But after controlling for sex, age at onset, disease duration, relapse rate and other factors, they could find no association between taking interferon beta and any reduction in progression to disability. Relapses and brain lesions do not, apparently, drive disability, Dr. Tremlett said.”(my emphasis)


Yes, the drugs did reduce relapses and MRI lesions which implies that the brain lesions are not in themselves adequate indicators of MS brain damage. If MRI’s are used to “monitor” effectiveness of MS drugs, they aren’t monitoring MS progression or effective treatment. This tends to discredit the entire treatment protocol over the past 25 years.

Then Dr. George Ebers published his study of MS drug outcomes over the past 25 years.

https://www.youtube.com/watch?v=OqY-_K1fYJY#t=859

On Thisisms.com (Cheerleader) Joan Beal comments:
“Please notice that Ebers shows that relapses have no bearing on time to reach SPMS or the 6,8 and 10 markers on EDSS.
And they do not prevent disability....there's no science behind that marketing claim.
The real biomarker is not white matter lesions, it's gray matter atrophy--that's the one thing tied to disability and MS progression.
Keep your gray matter healthy, your mitochondria healthy, keep moving—“

Dr Michael Flanagan (upright doc) also of Thisisms.com comments:

“The presentation was fast paced but interesting and enlightening...it questions the efficacy of many drugs which do nothing to change the long-term progress or outcome of the condition. It is far better to do nothing than to make someone sick while trying to cure their condition.

As far as the definition of MS is concerned, basically it's a neurodegenerative condition associated with remissions and exacerbations and somewhat characteristic signs and symptoms. The signs and symptoms were previously attributed to demyelination but we know now that they aren't necessarily related. Neurological function degenerates regardless of the state of demyelination. This indicates that there are other degenerative processes at work as well."


centenarian100 commented (Dec 23, 2013) that the statistical analysis reveals that the drugs may delay decline from RRMS to SPMS which means some MSers can live better, longer.
My comment: Maybe we can do much better than that.

Standard MS therapy: http://www.aafp.org/afp/2004/1115/p1935.html
Peter A. Calabresi, M.D. Nov 15, 2004 writes about standard MS therapy on the site American Family Physician “Diagnosis and Management of Multiple Sclerosis”. At the time 5 DMD’s had been approved by the FDA. (Little has changed since 2004 except for the increased choice including monoclonal antibodies.) Presumably the FDA approved these treatments based on – SCIENCE - a clinically approved double blind protocol (meaning neither the Doctor nor the patient know what is prescribed.) The MRI with gadolinium contrast is used to monitor lesions (at least 9) both in diagnosing MS and monitoring disease progression (and treatment effectiveness, including drug trials.)

Dr. Calabresi writes
“Patients with MS often are tempted to try alternative thérapies...Sole reliance on alternative therapies should be discouraged because patients then may be deprived of therapies that have been shown to be effective in the treatment of MS...

Accumulating evidence indicates that the best time to initiate disease-modifying treatment is early in course of MS. Data indicate that irreversible axonal damage may occur early in relapsing-remitting MS and that drug thérapies appear to be more effective in preventing new lesion formation than in repairing old lesions...the National Multiple Sclerosis Society43 supports the initiation of immunomodulating therapy at the time of diagnosis...

The ability to diagnose and treat MS has improved considerably in the past 10 years because of the availability of MRI and partially effective immunomodulating thérapies. The limited efficacity of immunomodulating drugs in the later, noninflammatory stages of MS highlights the importance of developing remyelinating and neuroprotective strategies for the disease."

THE FALLACY:

It appears that these treatments and the drug trials that approved them are based on a FALLACY, the theory that white matter lesions (plaques) accurately define MS. What if, as Joan Beal suggest, grey matter is far more important in the disease progression. What if all this FDA approved science is founded on a chimera?

Finally, it has been known since the introduction of the MRI that the images produced don’t reveal anything about the nature or degree of handicap in MS. The Neurologist uses the MRI to monitor lesions which determine treatment protocol. It is understood that the drugs work only for the RelapseRemissionMS, that is to say to control lesions and that once the patient arrives at the progressive stage, drugs are no longer effective. I repeat - "Relapses and brain lesions do not, apparently, drive disability, Dr. Tremlett said."


(A side issue. I don’t understand why MSers are so eager to undergo MRI’s. I myself need a really good reason in my own self interest (not to satisfy someone’s curiosity or diagnosis protocol or research needs) to undergo a diagnostic tool which I consider harmful. Why? Because beaming a powerful magnet at my own electromagnetic field can only disrupt it. (Chinese medical practice works on the theory that meridiens are energy flows which need to be freed to heal and prevent disease. Anything which disrupts that energy is by definition harmful.) Also, the gadolinium contrast may injure the brain. http://pubs.rsna.org/doi/abs/10.1148/radiol.13131669

In any future MRI of the brain I will insist that grey matter condition is monitored.

What can I conclude from the discussion thus far? That DMD's (MS drugs) may reduce lesion damage to white matter. However, they apparently don't stop brain degeneration in general. Thus, if one feels safer taking DMD's, one must still do everything to protect the brain in general (including grey matter) through optimal nutrition, detoxification and nutritional suppléments. I would avoid drugs I can't safely stop taking. (Tysabri comes to mind.)

And I definitely focus on enhancing blood/cerebrospinal fluid circulation in the central nervous system in order to stop the blood reflux (CCSVI). And, perhaps, doing all that one can forego the drugs altogether.

Dr. Calabresi DOES inadvertently hint at the CCSVI issue as it refers to MS. Quote:

Figure 3. “T1-weighted slices, with gadolinium contrast enhancement of one of the lesions (arrow) indicating permeability of the blood-brain barrier. Enhancing lesions correlate pathologically with perivenular inflammation and are considered a surrogate marker of disease activity.”

“perivenular” means around the vein, in the connective tissue about a vein.” Here is suggested what Dr. Charcot’s 19th century autopsies of MS patients revealed, that the “plaques” (in French MS is translated as “sclérose en plaques”) are located where the veins drain the brain. It’s taken 150 years, but we are returning to a long forgotten observation. And as Leonard points out, the Dane Torben Fog noticed in 1965 that MS lesions are tied to the small veins.

The Science is slowly (very very slowly) rejecting the DMD drug model and just as reluctantly turning towards the CCSVI theory. (One shouldn’t forget that a “scientist” shared a Nobel prize for a study favoring Lobotomy. Apparently even Science has “fashions”.)
It appears that many MSers are well ahead of the Doctors and Therapists upon whom they must rely.

MS Cure Enigmas.net
Last edited by vesta on Wed Jan 22, 2014 11:24 am, edited 1 time in total.
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Re: The Drug/MRI Fallacy

Postby Leonard » Mon Jan 20, 2014 10:02 am

Vesta, overview well done!

The name Thorben Fog comes to mind who did very good and convincing work in the 1960's on the perivenular nature of MS.
The link should be somewhere on the topic New concept for MS.

I think besides the perivenular nature, there is another effect on the flow of the spinal fluids and the inflammation of the cartilage of the dural sinus.
Eventually loading toxins in the brain compartment that start to affect the HPA axis. And then dysregulates the metabolic system.
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Re: The Drug/MRI Fallacy

Postby vesta » Tue Jan 21, 2014 2:18 am

Thanks Leonard for your input. I was unaware of Thorben Fog's work and will revise my entry accordingly. It's true you have done much more research into general MS metabolism than I would ever dream of attempting. I'm mainly focused on finding accessible solutions. I don't think we can count much on current research because the focus is on developing a (big buck) drug. Also, too many variables. Thanks again.
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Re: The Drug/MRI Fallacy

Postby HarryZ » Tue Jan 21, 2014 8:24 am

Vesta,

Excellent job in outlining the recent history of MS treatment as seen by the World of MS Medicine!

For years, the drug trials have hung their hats on the MRI results of brain lesions. Now we see that scientifically this means very little but in the world of marketing, it sells a lot of MS medications!!

In the past, the companies and docs who support the DMDs have pretty much taken a hostile attitude to those who have opposed their line of thought. Fortunately, in the past few years, more and more researchers are presenting research that is showing the inaccuracy of what we have been told for years. The docs have begun to look into other areas and hopefully we'll get better results in finding out the real cause of MS. It will be a real battle because not only will they have to fight for the right answers, they will have to put up with the drug company machine who don't like it when others threaten their domain.

These days we are getting a lot of new information as each month passes. Let's just hope that the real answer gets discovered sooner rather than later.

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Re: The Drug/MRI Fallacy

Postby blossom » Tue Jan 21, 2014 3:06 pm

vesta wrote:i don’t understand why MSers are so eager to undergo MRI’s. I myself need a really good reason in my own self interest (not to satisfy someone’s curiosity or diagnosis protocol or research needs) to undergo a diagnostic tool which I consider harmful. Why? Because beaming a powerful magnet at my own electromagnetic field can only disrupt it. (Chinese medical practice works on the theory that meridiens are energy flows which need to be freed to heal and prevent disease. Anything which disrupts that energy is by definition harmful.) Also, the gadolinium contrast may injure the brain. http://pubs.rsna.org/doi/abs/10.1148/radiol.13131669


vesta, this all was very well put, "as usual", i have always felt one shoe would not fit all, in our sameness we Are different. the research you shared here about the drugs makes me feel even better that i stuck to my guns and refused them.

i should have but never thought about the mri impact and the magnetic force. also, the contrast dye. water, water, water afterwards. thank you.
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Re: The Drug/MRI Fallacy

Postby vesta » Wed Jan 22, 2014 8:39 am

Thanks Harry and Blossom. It's good to know I have readers who appreciate the info/ideas. We are getting somewhere with an understanding of the problem even though the doctors/therapists lag well behind.

PS Blossom: I can see that you are very intuitive and sensitive, so I think you can well trust your instinct of self preservation.
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Re: The Drug/MRI Fallacy

Postby eric593 » Fri Jan 24, 2014 2:03 am

Hmmm...I'm not usually one to defend mainstream MS meds as I think they leave a lot to be desired.

I won't go through all the meds, even though I'm also fairly certain that Tysabri and Novantrone reduce disability progression and actually improve EDSS scores while on them. But here is research that demonstrates that copaxone too slows disease progression and slows or sometimes improves disability levels and time it takes to reach certain disability markers such as need for walking aid, etc. While they can do better, they do impact disability levels and appear to slow down disease progression for some (since most non-responders would not be in the long term user cohort). I don't know if the interferons have similar long term data.

http://ir.tevapharm.com/phoenix.zhtml?c ... highlight=

http://www.unitedspinal.org/msscene/201 ... s-with-ms/
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Re: The Drug/MRI Fallacy

Postby eric593 » Fri Jan 24, 2014 2:26 am

Here is a good paper on the effects of MRI on the human body:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2705217/
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Re: The Drug/MRI Fallacy

Postby HarryZ » Fri Jan 24, 2014 7:41 am

eric593 wrote:Hmmm...I'm not usually one to defend mainstream MS meds as I think they leave a lot to be desired.

I won't go through all the meds, even though I'm also fairly certain that Tysabri and Novantrone reduce disability progression and actually improve EDSS scores while on them. But here is research that demonstrates that copaxone too slows disease progression and slows or sometimes improves disability levels and time it takes to reach certain disability markers such as need for walking aid, etc. While they can do better, they do impact disability levels and appear to slow down disease progression for some (since most non-responders would not be in the long term user cohort). I don't know if the interferons have similar long term data.

http://ir.tevapharm.com/phoenix.zhtml?c ... highlight=

http://www.unitedspinal.org/msscene/201 ... s-with-ms/


Like most of the long term studies done on interferon users, they only include the patients that have been using the drug and not the ones who have had to stop it for various reasons. This obviously effects the numbers on these medications and makes them look better than they really are. If you ask most neuros (other than those being paid for their promotion of these drugs) they will likely tell you that in the long haul, interferons have had very little effect on the progression of MS. The University of British Columbia did a long term usage study of these drugs and found there was virtually no difference in patients who did not use them at all.

Drugs like Novantrone and Tysabri are very powerful immune system altering drugs and their use really shakes up one's entire system. While some patients benefit from their use, the huge side effects that are encountered from many (but not always reported) and the risk factor for PML and/or cancer plus the cost makes you wonder if they are really worth it in the long run.

As well, all of these drug manufacturers have been slapped with fines by the FDA for making advertising/sales claims that are not true....all in the attempt to gain a percent or two additional market share which really adds to the bottom line. It makes you wonder how much interested these companies are in the health of MS patients when they resort to false claims to entice MS patients to use their particular medication.

At the risk of sounding like a broken record, I've been following MS research for decades and have seen how these companies operate. The competition is fierce is this multi billion dollar industry and where do we sit today....no known cause of MS and certainly no cure! But if you look at the balance sheets of all these companies who make the approved MS drugs, the numbers are very black and profits immense.

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Re: The Drug/MRI Fallacy

Postby centenarian100 » Tue Feb 04, 2014 12:49 am

Hey vesta

Your post had such a grand epic feel to it that I felt a sense of celebrity status when I found that I had been quoted (or at least paraphrased).

You make a lot of good points in your post. Certainly, though the MS drugs have benefits on MRI outcomes, relapses, and even short term disability, the effect on long term disability is questionable. Of course, long term disability is what we all care about most. We want to change the face of the disease. We want to make a person with MS in a scooter a very rare sight.

I agree with Dr. Ebers that the MS drug trials have unreasonable outcome measures which tend to make the drugs look better than they really are.

I also agree with your implication that pharmaceutical companies deceive doctors/patients in order to get them to use copaxone/betaseron/extavia/rebif/avonex in progressive multiple sclerosis despite the evidence against their efficacy. I also agree that they exaggerate the benefit in relapsing remitting multiple sclerosis.

I also agree that diet/nutrition/lifestyle has not been given due attention.

However, here is where I disagree with you...

1) You seem to suggest that these ideas are somehow not in the scientific mainstream. What exactly is Dr. Ebers if not a mainstream allopathic physician? Do you think he supports liberation treatment? I doubt it based on this quote: "I think the lesson from CCSVI which cannot be ignored is that the price of losing confidence in the medical system can be great"

source: http://multiple-sclerosis-research.blog ... ebers.html

Take a look at the choosing wisely recommendation (item #4) from the American Academy of Neurology:

"Don’t prescribe interferon-beta or glatiramer acetate to patients with disability from progressive, non-relapsing forms of multiple sclerosis."

Source: http://www.choosingwisely.org/doctor-pa ... neurology/

Believe me. Many neurologists are very aware of the poor data regarding long term benefits of the platform agents. I even remember an article questioning the long term benefit of interferons in the New England Journal of Medicine some time ago (I'm unable to find the source now)

2) why don't you apply the same degree of scientific scrutiny to CCSVI/liberation?

While the MS drugs may not be that great and have side effects, at least they do have clearly proven benefits on relapses and short term disability in multiple class I studies (in other words, there is class Ia evidence that these drugs work). Relapse rate, short term disability ("disability progression") and possibly time to SPMS may not mean that much in the very long run, but I assure you it means something to a 20 year old with RRMS with 4 myelopathic attacks in the last year trying to get through college.

liberation on the other hand is founded on a shaky theoretical concept that hasn't even been consistently correlated with MS in different studies. There are a bunch of meaningless anecdotes and low quality unblinded studies and one negative small high quality study whose methodology has also been questioned.

If you are going to trash copaxone from an evidence based perspective, you should trash liberation with equal ganas.

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Re: The Drug/MRI Fallacy

Postby HarryZ » Tue Feb 04, 2014 9:46 am

I agree with Dr. Ebers that the MS drug trials have unreasonable outcome measures which tend to make the drugs look better than they really are.


That being the case, why would it be reasonable to think that the CRABs have the so-called clear beneficial effect on relapses and short term disability ? The UBC study indicates there is no difference in the long run between those who use the drugs and those who do not. The companies who make these drugs would like us to think that these drugs are wonderful and have made false claims that draws the attention of the FDA. These companies look at the fines they get as the cost of doing business!

You ask why The CCVI treatment doesn't have the same scientific accountability as the drugs do. The easy one word answer is " money". When Dr. Zamboni first made his announcement a few years ago, he stated what he found and said that there would obviously need to be a lot of research done to investigate his findings. Unfortunately many MS patients around the world treated this as the answer and the MS World of medicine couldn't move fast enough to discredit Zamboni's discovery. Their cash cow had to be protected.

But CCSVI, like any other medical discovery, had to undergo the immense amount of research needed to verify and expand the theory. And this costs a huge amount of money and detailed organization which did not exist. We all have read the claims,counter claims, trashing and bashing among the people involved with MS and a lot of it has been quite nasty. Had CCSVI been a drug rather than a surgical procedure with a lot of potential money to be made, it's path would have been different.

Whether CCSVI will ever get the funding research required that it needs remains to be seen. And until that happens we will continue to read the anecdotal evidence MS patients provide.

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Re: The Drug/MRI Fallacy

Postby HappyPoet » Tue Feb 04, 2014 2:16 pm

Thanks, Harry. Very well said!
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Re: The Drug/MRI Fallacy

Postby centenarian100 » Tue Feb 04, 2014 3:31 pm

HarryZ wrote:That being the case, why would it be reasonable to think that the CRABs have the so-called clear beneficial effect on relapses and short term disability ? The UBC study indicates there is no difference


You are misinterpreting the results of the study which refer to long term disability. As I said before, there is class 1a evidence that the FDA approved multiple sclerosis drugs decrease the rate of accumulation of MRI lesions and decrease the rate of multiple sclerosis relapses in relapsing multiple sclerosis. Some of the drugs have evidence for decreasing the rate of "EDSS progression" a measure of short term disability. Ebers is stating that these factors are not as important as and not strongly correlated with long term disability. I agree with him.

It does not mean that they do not work at all

As an example, click the link and peruse figure two (From the Affirm trial, natalizumab vs. placebo EDSS progression)

http://www.nejm.org/doi/full/10.1056/NEJMoa044397

Of course, being less disabled on average in the short run is not as meaningful as being significantly less disabled in the long run, but your hubris in dismissing the drugs as worthless and ineffective is absurd. Again, there is class 1a evidence that tysabri decreases the rate of relapses, decreases the accumulation of new MRI lesions, and decreases short term EDSS progression in relapsing remitting multiple sclerosis.

Anecdotes are not as meaningful as high quality as high quality data. Tysabri didn't work for my husband, but I can't deny the overall efficacy of tysabri for selected people with multiple sclerosis (FYI, my husband doesn't have relapsing MS).

The companies who make these drugs would like us to think that these drugs are wonderful and have made false claims that draws the attention of the FDA.


I agree with you about the drug companies.

These companies look at the fines they get as the cost of doing business!


I agree with you. Also, the representatives are paid comission and hence are incentivised to lie. Commision for drug reps should be illegalized.

You ask why The CCVI treatment doesn't have the same scientific accountability as the drugs do. The easy one word answer is " money".


I don't think that this is entirely fair. Medical equipment companies have motivation to promote the research. A significant amount of privately funded research has been done, and the results are heretofore unimpressive. Again, the underlying therory isn't even solid.

To give an example in a different field, there have been various studies in the field of management of acute stroke regarding catheter based procedures for clot extraction. In this example, the underlying concept is not in doubt. Surely, clots obstructing arteries are the underlying cause of many strokes, and if they could be removed quickly and safely, they could prevent parenchymal injury and improve stroke outcome.

despite a rock solid theoretical concept and plenty of economic motivation, there have been multiple failed clinical trials, and as a result, there has been push to close neurointerventional radiology fellowships.

The company that makes the wingspan stent funded a trial for symptomatic intracranial stenosis with hopes to prove that their product could reduce the risk of stroke.

The stent is depicted below

Image

The result of the SAMPRIS trial?

Read for yourself: http://www.nejm.org/doi/pdf/10.1056/NEJMoa1105335
(If you're too lazy to click the link, the procedure increase the risk of stroke and death compared to standard medical management)

Again, the theoretical concept was there, and the economic motivation was there. Medical device companies and representatives make a killing. Physicians can also cash in by billing for procedures and giving educational talks.

...but evidence shuts everyone up.

Show me the evidence that CCSVI is related to multiple sclerosis and that liberation improves outcome in MS. If you demand this evidence from drugs, you should demand this evidence from any purported treatment of MS.

There is plenty of money to be made with CCSVI, and a lot of interventional radiologists are cashing in.

The salary of most neurologists wouldn't change if liberation became the standard of care. The demand for stroke neurologists is actually going up despite the introduction of procedures for stroke which they do not perform, because general neurologists are afraid of the newfound complexity in the field. For academic multiple sclerosis specialists with drug company affiliations, you are right in suggesting that they have a conflict of interest and are potentially biased.

But CCSVI, like any other medical discovery, had to undergo the immense amount of research needed to verify and expand the theory. And this costs a huge amount of money and detailed organization which did not exist.


Fair enough, but don't you think it is resonable to pursue or wait for evidence before assuming it is the second coming of Jesus Christ? Would you take a drug after a promising phase I trial and some stories of people feeling better after taking it? Again, why don't you apply the same degree of scrutiny to all treatments?

Whether CCSVI will ever get the funding research required that it needs remains to be seen. And until that happens we will continue to read the anecdotal evidence MS patients provide.


I don't know what to tell you except that anecdotal evidence is not a very ineffective way to determine whether or not a medical treatment is effective.

Her are some reasons why:

1) The placebo effect driven by patient expectation for a beneficial effect
2) The regression to the mean phenomenon, particularly in relapsing multiple sclerosis. For instance, the placebo arm in all drug trials reveals a decrease in relapse rate compared to the preenrollment period
3) Reporting bias; people are more likely to report dramatic changes than null results. Take a look at the wheelchair kamikaze blog for example. He essentially stopped posting about CCSVI after his unsuccessful treatment
4) The availability heuristic-the tendency to remember dramatic or emotionally impactful events or stories

Virtually every ineffective medical treatment ever has had strong anecdotal evidence in its favor.

I assure you that hippocrates and Galen were convinced that blood letting was effective

Check out this impressive annecdote on blood letting from the wikipedia page:

"One typical course of medical treatment began the morning of 13 July 1824. A French sergeant was stabbed through the chest while engaged in single combat; within minutes, he fainted from loss of blood. Arriving at the local hospital he was immediately bled twenty ounces (570 ml) "to prevent inflammation". During the night he was bled another 24 ounces (680 ml). Early the next morning, the chief surgeon bled the patient another 10 ounces (285 ml); during the next 14 hours, he was bled five more times. Medical attendants thus intentionally removed more than half of the patient's normal blood supply—in addition to the initial blood loss which caused the sergeant to faint. Bleedings continued over the next several days. By 29 July, the wound had become inflamed. The physician applied 32 leeches to the most sensitive part of the wound. Over the next three days, there were more bleedings and a total of 40 more leeches. The sergeant recovered and was discharged on 3 October. His physician wrote that "by the large quantity of blood lost, amounting to 170 ounces [nearly eleven pints] (4.8 liters), besides that drawn by the application of leeches [perhaps another two pints] (1.1 liters), the life of the patient was preserved". By nineteenth-century standards, thirteen pints of blood taken over the space of a month was a large but not an exceptional quantity. The medical literature of the period contains many similar accounts-some successful, some not."

source: http://en.wikipedia.org/wiki/Blood_letting

So I posit the question to you. If you support liberation based on annecdotes, why not blood letting? Maybe the evil humours are causing multiple sclerosis.

...or maybe we should stick to the scientific method.

You already know my opinion.
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Re: The Drug/MRI Fallacy

Postby cheerleader » Tue Feb 04, 2014 4:52 pm

wow. We're beyond anecdotes, centenarian--
For those who, in your words, "are too lazy to click the link"
http://ccsvi.org/index.php/component/se ... ask=search
I can summarize--
--there are now hundreds of peer-reviewed and published papers corroborating the connection of CCSVI and MS with hypoperfusion, reduced global arterial cerebral blood flow, truncular venous malformations, altered cerebrospinal fluid dynamics, venous endothelial damage, chronic venous insufficiency, as well as findings that venoplasty for CCSVI exhibit changes in these parameters in many cases.

Yet the EAE mouse model for MS--which is more akin to ADEM, (in that it is a constant inflammatory reaction to a known foreign antigen, rather than a relapsing-remitting response to an unidentified antigen)--is still used to test MS treatments. I'd submit that using a failed mouse model, which is not based in reality, has more in common with blood-letting, quackery and wishful thinking. Who is selling the snake oil?
http://ccsviinms.blogspot.com/2010/10/s ... -were.html

Jeff and I are looking forward to hearing the researchers discuss this new neurovascular science at the 4th annual ISNVD conference, next weekend in San Francisco. We'll be reporting back on twitter, Facebook and my blog. He's now 7 years past his dx with no MS progression--unheard of for a man his age who was dx with over 20 lesions and not given much hope--he's still jogging, working and wanting to help others.
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Re: The Drug/MRI Fallacy

Postby centenarian100 » Tue Feb 04, 2014 6:11 pm

cheerleader wrote:For those who, in your words, "are too lazy to click the link"
http://ccsvi.org/index.php/component/se ... ask=search
I can summarize--
--there are now hundreds of peer-reviewed and published papers corroborating the connection of CCSVI and MS with hypoperfusion, reduced global arterial cerebral blood flow, truncular venous malformations, altered cerebrospinal fluid dynamics, venous endothelial damage, chronic venous insufficiency, as well as findings that venoplasty for CCSVI exhibit changes in these parameters in many cases.


Admittedly, I didn't read articles, but can you direct me to a high quality trial demonstrating a benefit in clinical outcome in multiple sclerosis such as MRI lesions, relapses, or disease progression?

A lot of the articles actually question the specificity of CCSVI- i.e. # 382 is a pilot study finding CCSVI in 24/25 patients with meniere's disease: http://www.minervamedica.it/en/journals ... 13N04A0173

Another study finds no correlation between MR venography abnormalities and multiple sclerosis in children (#391: http://www.ncbi.nlm.nih.gov/pubmed/24411179)

The fact that CCSVI is being research to not mean that liberation is an effective treatment

Yet the EAE mouse model for MS--which is more akin to ADEM


I agree. That's why drugs don't get approved based on success in EAE studies. They get approved based on results in high quality studies in humans with multiple sclerosis

He's now 7 years past his dx with no MS progression--unheard of for a man his age who was dx with over 20 lesions and not given much hope


Not unheard of at all. Many people with MS historically did quite well without treatment

For instance, in the Queen Square data, a natural history study, about 35% of MS patients with > 10 baseline MRI lesions had EDSS < 3 after 20 years of disease

[img]http://image.slidesharecdn.com/earlyaggressivegiovannonigg1-130509150614-phpapp02/95/slide-21-1024.jpg[/quote]

Many people with MS only have a few minor lifetime relapses and never develop secondary progressive MS.

I'm glad your husband is doing well, but again I must stress that his story is not evidence for the efficacy of liberation. Many people continue to decline after the treatment-i.e. wheelchair kamikaze and many others. By the way, I don't accept their lack of success as a refutation of CCSVI either.
centenarian100
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