paolo I have taken this extract below from an article i read earlier..sourced from Here
Well Dr Hall from that article is claiming he founded the methylprednisolone treatment, but he's not alone And guess what it is no longer believed to work.
So Dr Hall was involved in the development of this treatment bob? and where is the proof it does not work?
I have an understanding that it isnt proven wether is does or does not work but is considered beneficial?
I may be completely wrong so i would be interested to read the outcome of a trial that proved there is no benefit . My point is that there are other areas of research that can be beneficial?
Well Dr Hall from that article is claiming he founded the methylprednisolone treatment, but he's not alone And guess what it is no longer believed to work.
So Dr Hall was involved in the development of this treatment bob? and where is the proof it does not work?
I have an understanding that it isnt proven wether is does or does not work but is considered beneficial?
I may be completely wrong so i would be interested to read the outcome of a trial that proved there is no benefit . My point is that there are other areas of research that can be beneficial?
To me I find mainstream medicine is not doing their job if something like a methylprednisolone was given such godly status without good evidence.
RESULTS:
Three clinical trials and six cohort study publications were found to satisfy the review criteria. The evidence they provide supports 'the recommendation that the manoeuvre (high dose methylpredisolone) be excluded from consideration as an intervention for the condition'10 (acute spinal cord injury). Twelve larger animal publications were detailed. Validity and the functional significance of results was of concern in many. The weight of evidence lay with those studies demonstrating no definite effect of MPSS on functional outcome. In cat experiments with higher level cord damage, deaths in the MPSS treated groups were notable.
CONCLUSION:
The evidence produced by this systematic review does not support the use of high dose methylprednisolone in acute spinal cord injury to improve neurological recovery. A deleterious effect on early mortality and morbidity cannot be excluded by this evidence.
PMID: 10822400 [PubMed - indexed for MEDLINE]
Grass roots advocacy fertilized by Big Pharma-DICHOTOMY at it's best
It's also not true that methylprednisolone even if it did work was repairing the spinal cord as it was thought to stop further damage. It was a brilliant idea to take an already known drug and get it passed through the system easily while all what was happening as far as any return of function was that naturally after swelling would go down some function could be regained.
Grass roots advocacy fertilized by Big Pharma-DICHOTOMY at it's best
In NASCIS III, all patients received intravenous methylprednisolone bolus of 30 mg/kg. The treated patients were subsequently divided into three groups. Group 1 received methylprednisolone infusion at 5.4 mg/kg per hour for twenty four hours, Group 2 the same for forty eight hours, and Group 3 received tirilazad mesylate** 2.5 mg/kg bolus infusion every six hours for forty eight hours. The methylprednisolone-treated patients for forty eight hours showed improved motor recovery over those treated with methylprednisolone for twenty four hours. The improvement was significant for those started on methylprednisolone between three and eight hours after spinal cord injury, but they also had more severe infections (sepsis and pneumonia) than the group treated for twenty four hours. Those treated with tirilazard for forty eight hours showed motor recovery equivalent to the patients treated with methylprednisolone for twenty four hours.
Ok i accept i do not know enough on this subject to comment knowledgeably and its another discussion but to go back to my main question to paolo...with reference to monies being used for other SCI research.
My opinion, in general, is not formed on all this, im on a learning curve so my questions are completely without predudice......im just gaining insight at this point
Do they over prescribe pain medication and depression drugs
Do they over diagnose things like ADD?
How good was the securities and exchange commission? Is the FDA and mainstream medicine any worse?
There was much talk about Bernie Madoff, but he was not the only thing wrong with the financial system, nor is the example I gave about the CNN documentary the only issue facing mainstream medicine.
You can read up on this if you like, Art Caplan a well known bio ethicist has written many articles showing mainstream medicine having some snake oil
What does this have to do with the FDA other than make people think that the FDA is evil in being involved in all of these things. Heck, if you read this you'd think that the FDA was responsible for the Great Recession after Bob threw in the Securities and Exchange Commission.
Yes, there are real problems with the FDA, especially in terms of how slow they are, but this has nothing to do with over prescribing for cancer and over diagnosing ADD, and adding these things to the discussion isn't fair and clouds the problem and therefore the possible solution.
Do we need an FDA? Yes. Does the FDA need reform? Yes.
Is there a way that it can be reformed? Yes. Every government body has the possibility to be reformed. Will it be difficult? Yes. But as per my post (http://inspiredsciforum.com/post/10465) the FDA itself was asking for comment in regards to Creating an Alternative Approval Pathway for Certain Drugs Intended to Address Unmet Medical Need; Public Hearing You can see the notice here.
These kinds of proceeding as well as talking about the problems (kept in perspective) is the way to actually try to affect change in the FDA. If we just take the position that we cannot change it, we'll end up accomplishing very little.
Don't get me wrong, these conversations are important, but if we don't do anything with the conversation it just gives people, especially new people that unfortunately grows everyday, the idea that nothing can be done.
So let's keep the conversation in perspective and discuss some solutions to this problem as well as trying to keep on topic so that we don't compound the problem and make tackling it even more difficult.
Dennis Tesolat
www.StemCellsandAtomBombs.org ______________
"Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
Martin Luther King
1) Founding - probably it's not enough, but sure first we need to review how money are spent. Most of SCI research money are not spent for cure research, so, in my opinion, that is one of the reasons why progress toward a cure is much slower than it could be. Maybe I should start a specific thread for that..
2) Then if you look at how money that goes to CURE basic research are spent there is another mess. See the first article I posted to get an idea to start from..
I think it would be a great way to develop understanding to break the issues down into threads but for this reason i will look at these two points first within this one reply and we can see how we get along .
My question in reference to the above quote: You imply that SCI research money is not being used to find a cure...and that money that is going towards to cure research is being wasted as suggested by your thread topic. Whilst it is important to focus on a cure...is it not also important areas of SCI issues that need researching to be focused on also?
I appreciate that a cure is the ultimate to aim for and what is the most beneficial for us but a cure may at this point although not unrealistic is without the science to achieve it at this point.
I have taken this extract below from an article i read earlier..sourced from Here
Just a decade ago scientists believed that little could be done to help a person with a spinal cord injury. They thought that once damaged, neurons could not be repaired. This view changed in 1990 when a high dose of intravenous methylprednisolone, administered within eight hours after injury, was shown to improve motor function. Methylprednisolone, a synthetic steroid which has been used for the last half-century primarily as an anti-inflammatory agent, is the only drug currently approved to treat spinal cord injury.
The research that discovered this SCI treatment may well be within the 'other' area of SCI research that you suggest? If so then it seems a very legitimate and worthwhile use of research money.
Secondly...Is it known specifically how the money is distributed within the research are and can organizations or individuals request that the funds go to specific areas of research?
paolo my questions are aimed to help myself and other members get a clearer picture and understanding..I appreciate your time in clarifying the points
Thanks Lara for your reply, let's try to go deeper into this
I think a good example to clarify my point is to look at the New Jersey Commission on Spinal Cord Research: www.state.nj.us/health/spinalcord/index.shtml The commission was created after the effort of people with chronic SCI that wanted a cure. Almost 15 years later about 40 millions $ have been spent and about 10% has gone to cure research and less than 5% has gone to chronic SCI cure research (chronic phase of a spinal cord injury—a few months later when the person's condition has stabilized). If you have time you can see all the research projects that have been supported (in most cases even a non educated person can easily detect research that has nothing to do with cure): www.state.nj.us/health/spinalcord/directories.shtml
When I first looked into this I thought it was "too bad to be true", but it is true... and this NJ commission is just one example. About Methylpredisolone it falls into neuroprotection strategies, which is part of the wider area that is "acute SCI cure".
Money for SCI research are distributed within guide lines estabilshed by "scientific advisory boards" that are made of scientists.. that of course tend to make guide lines wide enough so that money can go to all their friends. So the guide lines is where we should direct our effort to make sure money are spent in specific ares of research. Here you can see the NJ commission guide lines: www.state.nj.us/health/spinalcord/documents/researchpgr.pdf As a comparison here at the bottom of the page you can find the guide lines of the Wings For Life Foundation that in my opinion are better: www.wingsforlife.com/en/latest/grant-application-479/
Now let's talk about money that make it to cure research. Here is an interesting study about that: Steward, O., et al., Replication and reproducibility in spinal cord injury research, Exp. Neurol. (2011), doi:10.1016/ j.expneurol.2011.06.017 www.ncbi.nlm.nih.gov/pubmed/22078756
From the paper:
"The FORE—SCI replication program was established by NINDS after extensive discussions among the spinal cord injury (SCI) research community of two perceived problems. First, every year for at least the preceding two decades, numerous papers appeared reporting that some intervention, drug or biologic (e.g. cell transplant), reduces injury severity or functional impairment (i.e., is neuroprotective), improves recovery of function, or enhances regenerative growth following SCI. Despite this apparent progress at the basic science level, not one of the many strategies reported as having promising effects were translated into successful therapies. Indeed, only recently was one of these interventions carried forward through preclinical development to testing in a clinical trial. Second, many reports of striking effects were never followed up either by the original authors or by others, or if they were, the results were not reported in the scientific literature. What happened? Were the results not reproducible? If there were failures to replicate, these were rarely communicated to the community at large, although rumors abound (“I tried that and it didn't work”)."
They selected 12 of the most promising studies (so they filtered out a lot of "rabbish") and tried to replicated the results.
From the paper: "General conclusions: a surprising preponderance of failures to replicate In the studies published to date, there is a surprising preponderance of failures to replicate..... Why has there been a failure to replicate and what does it mean to the field?"
My opinion: too many sloppy scientists at work and in most cases no one check what they publish so, often, they keep doing sloppy scienze. Can we do something about all this? Well it's not easy for sure, but we have the example of the AIDS movement who had success, so I think if we try we may have a chance.
I attach a PDF of the paper so people can have a look.
Thankyou paolo for the reply Ive spent some time this morning reading some of the information on the links you have provided and im getting a clearer picture! Indeed it seems that the opportunity for monies that are intended for their given purpose can be 'diverted' to 'other' sources. This is such a waste and a shame
I started to read through the New Jersey guidelines for research programs and was interested in their funding priorities. The first point was clearly defined:
Studying strategies to promote neuronal growth and survival, encourage the formation of synapses, enhance appropriate myelination, restore axonal conduction, replace injured cells, or otherwise improve function after spinal cord injury.
This above statement, to me in my understanding is a very clear definition of 'cure research', in a broad sense and i appreciate that this would have to be translated into areas of research that promoted this and be broken down into various studies that hold a hypothesis are working towards this aim.
Then as i read through further points i can see how they diversify into other areas eg: associated conditions to Spinal Cord Injury and Supporting the investigation of promising new approaches.
I compared this then to the guidelines Wings for Life Spinal Cord Research Foundation. It does seem that their guidelines would be less open to monies being improperly diverted. I read through one of the grant applications and did notice that the criteria for funding is not specific to a 'cure'
I can see how the small percentages you state are in fact as low as you say...and indeed something needs to change.
Hmmm its becoming clearer to me now too. What can be done to change this paolo? You mentioned the AIDS movement,I am presuming that money that was donated was used specifically for its purpose in researching a cure and money as not spent elsewhere, where it shouldnt have been?
The NJ Comm on spinal cord research was a topic discussed on carecure and some wanted to send signed petitions to the governor (gov Christe himself is now in a scandal called bridgegate).
The idea was heavily fought against by Wise Young. What's also interesting about that is on the board the civilian board member is a very strong supporter of Dr Young and a carecure member. The message I got was don't mess with Wise's piggy bank.
The NJ Comm on spinal cord research was a topic discussed on carecure and some wanted to send signed petitions to the governor (gov Christe himself is now in a scandal called bridgegate).
The idea was heavily fought against by Wise Young. What's also interesting about that is on the board the civilian board member is a very strong supporter of Dr Young and a carecure member. The message I got was don't mess with Wise's piggy bank.
With so little of the $40,000,000 from the NJ comm going to cure spinal cord injury I have to ask stemcellandatombombs why he hasn't done a petition regarding that? The roman reed bill only asked for $1,000,000 per year yet there was a petition supporting it.
Grass roots advocacy fertilized by Big Pharma-DICHOTOMY at it's best
With so little of the $40,000,000 from the NJ comm going to cure spinal cord injury I have to ask stemcellandatombombs why he hasn't done a petition regarding that? The roman reed bill only asked for $1,000,000 per year yet there was a petition supporting it.
Just curious bob but what is stemcellsnatombomb's responsibility? am i missing something?