This Is MS Multiple Sclerosis Knowledge & Support Community

Hi everyone!

A good friend sent me this paper to read, please do read it, it suggest we have a research bubble similar to our housing bubble in the US:

http://www.hedweb.com/bgcharlton/funding.html
Here's the things that stood out to me;

But over recent decades the rate of major clinical breakthroughs has probably declined [5, 9], even as claims for the importance of medical research have grown more exaggerated...snip..Available therapies typically offer only modest or marginal benefit, detectable only in very large clinical trials, and usually at the cost of severe side-effects

We have seen that pattern in MS for sure.

The problem may be that Big Science is inappropriate for generating medical progress. The dominant research paradigm has been termed the ‘basic to applied’ model, and is (roughly) the assumption that expanding ‘basic’ medical research (especially molecular biology-based approaches) leads predictably to an increasing frequency of ‘applied’ clinical breakthroughs [14]. The continuing failure to sustain therapeutic progress is making it increasingly apparent that these assumptions are, at best, only partially valid. For instance, there is a spreading disillusion with the Human Genome Project - the biggest and costliest biological venture in history. This was ‘sold’ to the public and political funders as essentially a means of generating major clinical breakthroughs, yet these have failed to materialize

SO the biology part of MS science is the constant focus on MS lesions: how many white cells how many t cells, the lesion project etc etc. These have produced vast amounts of what I call 'MS trivia' without producing anything useful for the clinician.

I agree with the "sold" to the public idea too. We all get excited with new advances in medicine, it is easy to exaggerate what is known and minimize what is only guessed at / hypothesized so that the public at large has no idea how tentative the model really is.

We suggest that excessive monolithic funding of the basic-to-applied model may be stifling a diversity of potentially more fruitful research strategies which at present are disregarded because they are not amenable to the Big Science model. Other approaches, being small scale and cheaper, or dependent on the accidents of individual skill and clinical observation, are less prestigious and less influential.

Individual skill and clinical observation is like DR Zamboni seeing that reflux when an MS patient coughed and thinking about what that might mean..................

Clinical observation means what you see when you look at a patient, not what you think is happening in the cells based on theory, what is actually observable. When Dr Dake puts one of us into the MRV or looks at our dopplers he is working with clinical observation. When he sees that the stricture had produced collateral circulation that is clinical observation that suggests physiological overload.

What this article suggests is that the basic biology model is failing the patients by not producing meaningful results and other methods, like clinical observation, ought to be used too.

IMHO one thing that has been glossed over is how poorly many of us actually do on the CRABs. My neuro, as nice as he is, and as much as I think he does care, has an unrealistically rosy view of how well they help pwMS.

remember in the article it mentions exaggerated claims-I think this applies to the CRAB science. The value of those have been exaggerated to where other avenues of exploration are not even evaluated as having any merit at all and you've got people saying things like these things work and that is the proof MS is autoimmune. Yet what is ignored in that comment is that none of the drugs have been shown to significantly reduce disability long term.

Examples of other clinical research strategies that might thrive with a reduction in the dominance of Big Science include what Nobel Laureates Goldstein and Brown have termed ‘Patient Oriented Research’ (POR) [16] – the successes of which include the delineation of AIDS by Gottleib, and the discovery of the etiological importance of Helicobacter pylori in duodenal ulcer by Marshall. As Rees points out, clinical medicine is a problem-solving activity which somewhat resembles engineering, so a wide range of sciences beyond molecular biology might potentially contribute to breakthroughs

Well when you see that a stenosis appears to occur always in a disease then it must be part of it, either as cause or caused, and when you know that such a stenosis can cause venous hypertension and a lesion in another body part it becomes very clear that you are probably working with the same pathology in this case. The human body is nothing if it is not consistent...a cut on the arm acts like a cut on the head or leg or anywhere else.

In conclusion, it is unlikely that current patterns of medical science funding will yield the hoped-for advances in therapeutics which provides the main justification for expanding the input of resources. Too much expansion, too narrowly channeled, for too long, has probably led to increasing inefficiency with diminishing returns from ever-greater spending. Linking scientific prestige with funding has created centralized selection pressures on medical science which cause a functional drift away from its proper goals – researchers now compete for funding instead of competing to cure diseases

I am glad there are new open minded thinkers out there working on this. Dr Zamboni and the team in Ferrara, Dr Simka, Dr Dake. These folks are looking at this with clinical eyes and a clear goal of helping people.
Many grateful thanks to all of them.

That's put more eloquently than I ever could exactly what I have been thinking.

You should "get out more" marie. Take out your Zamboni references, and this could of been posted in the general thread.

you should get out more--could have been general thread

I thought about it but I wanted to apply it to CCSVI specifically

123

pretty good I'l update my regimen

A great oldy but goodie post from Marie--
discussing the importance of clinical observations in medical advances. The Big Science model is not always amenable to medical advancement. For those new to the board, search mrhodes40 as author to read more pertinent posts on CCSVI research.
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