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
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."
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.