DMD's and their efficiency

[NZer1]

Some thing that has been of interest in our country since the other publicity on DMD's and their efficiency.

Evidence, bias and conflict of interest in research and publication
FOCUS ON MS 2010
Keynote address - Professor George A Jelinek MD Dip DHM FACEMEvidence, bias and conflict of interest in research and publicationOn the biases present in medical research and publication, using MS research as an example.
This Live Presentation was recorded on Saturday 18th September 2010 at the Aotea Centre in Auckland, New Zealand
Dr George Jelinek was diagnosed with MS in 1999. As a Professor in Emergency Medicine with a background as Editor -in- Chief of a major medical journal he began to sort through the medical literature on MS. He is convinced that with a commitment to the right lifestyle changes, there is the real probability that many people with MS can live long, healthy lives relatively free of the usual problems associated with the illness. Dr. George Jelinek is the author of a number of books on multiple sclerosis, the most recent being Overcoming Multiple Sclerosis with was published at the beginning of 2010

Multiple sclerosis society Auckland region, New Zealand
www.msakl.org.nz
Multiple sclerosis society Auckland region, New Zealand

[COBOB]

My reasoning for taking the DMD was that 75% of my neurovisual system was damaged with one bout of ON.  I can not afford a second bout.  Even if I had to pay out of pocket it would be a small percentage of my income.  The risk vs. reward came out pretty quickly.  Add to that the TN, tremors, spasticity, etc....   It just seems to be my best to keep my disability score down.

Bob

[HVAC]

The thing about DMDs is they are found to work in 33% of the population of those with RRMS, which is less than half of all MS patients. Those are not great odds but those with RRMS probably should take that gamble since there really is no other answers thus far. The new orals have better odds but more side effects. Again it is about being an informed patient. I do personally think the DMDs are over prescribed but that is okay for two reasons in my book. One who knows who they will help, even those with SPMS and two they may give hope. There is nothing like being told you have MS but there is nothing we can give you to slow the progression. Hope is a key part of fighting this disease.

The two reasons I started a DMD were I felt though expensive it was cheaper than a wheelchair and the care advanced MS brings. The second was meeting people who got the disease before DMDs who told me how they would do anything to have slowed the progression.

When I found I had PPMS I quit the DMD because it was not FDA approved for PPMS  and studies showed it did not help. Also finding I had had MS for over 40 years at that time it seemed to me the Progression had taken place. Everything I have read about DMDs said they needed to be started early on in RRMS to help.

My PCP finds me a terrific pain in the butt because I do not just take any drug, go for any test, or procedure before I understand it. Several times she has unwittingly given me samples of drugs that would interact with other drugs or cause other conditions.

[Sumanadevii]

You know anyone that can speak of all buddhist sects in the world?  How about all christian sects?  He can no more speak of all the medical care in the world than the man in the moon.  

[NZer1]

"As corrupt as NZ sounds in that film, no doubt much is being done under the table.  Of course, the good doctor is going to protect his own country...lol....."
Funny thing George is Australian and was flown in to do the talk. He was talking about every where in the world. lol...

[COBOB]

As someone who has worked with systems and researchers reporting data to the US FDA per 21 CFR Part 11 (Yep, Big Government Federally Regulated Reporting for Drug Development, Testing, Approval and Production) and EU and JP systems that are very similar I am well aware of how the biostatistics work with drug reporting.  It is much tighter than what you see published in the peer reviewed literature.  

Peer reviewed studies you see published in the Journal of X can toss all kinds of outlier data.  Once you are enrolled in a drug study, to get dis-enrolled in a major issue.  You have to state causes, complications, non-compliance issues, etc.

There is a huge difference in "noticing a trend" and "proving a statistical trend."  There is a big difference in a prospective study where you design the collection and get the data to analyze and a retrospective study where you look backwards to prove your point. Then the are blinded, double blinded, open label, controlled, sham contralled, multi-center, open label,  etc.    If you are not used to seeing these therms, they can become very confusing.

There was a double-blinded, sham controlled cancer study a few years ago in the US that only went for a few months, because the data showed that the drug was greatly superior to the sham controlled therapy.  The study didn't stop, but converted to a open-label therapeutic outcomes study.

Anyhow, people that quote success without numbers, controls, and blinded researchers done get much trust from me.

Bob

[Sumanadevii]

As corrupt as NZ sounds in that film, no doubt much is being done under the table.  Of course, the good doctor is going to protect his own country...lol.....

[NZer1]

Interesting thing is that George is talking about the Medical world as a whole. Other Nations are where George has taken his data from, eg. USA and UK drug companies. The 'incentives' are rife in those countries and the practice has spread around the world where ever drug companies pedal their wares.
In NZ there is a Government Dept called Pharmac who's task it is to sort the wheat from the chalf, and to look for corruption, as well as negotiate the price of drugs offered on the Health System. Not perfect but more transparent and looking for better options for the population as a whole.
Interestingly NZ is 14th country country on the list of Government sponsored DMD's.

[Sumanadevii]

Poor patients in New Zealand!!!  Maybe his little talk will wake the physicians up there. Luckily in the USA our doctors do research on medications.  Sure they take part in conventions, etc to understand the drugs but they don't ignore studies that point to giving a 33% chance of doing less harm to our bodies.  And personally?  I could give a rats if they take gifts...but it seems those in New Zealand and down right greedy.