The Disease Machine - Debate about evidence based medicine

The main contention here is that evidence based medicine is the best we have, every link I put up would appear to be going to be denigrated in some way by the ‘experts’ what ever source I choose

So let me ask you the ‘experts’ for some input backed by by links.

Latest figures suggest 100,000 people have a diagnosis of MS in the UK. By all means challenge that number as well if you wish.

Tysabri is the only licensed for MS proven to reduce disease progress. I am excluding Gilenya only because of its status with NICE

How many people are on Tysabi in the UK?

How many other people in the UK are on medication licensed for MS.

From that we should get a percentage number for whom the current evidenced based system has even offered treatment for MS in the UK. Perhaps we can then move the debate on in a constructive way from there

Alison

This is the link

http://www.ncbi.nlm.nih.gov/pubmed/15694688

Geoff

When I used the expression "shill site", it was after having explored the site you suggested and followed the links within it.
I looked at it thoroughly - did you?

I think you will find the adds you refer to are of the normal pop up type not related to the sourse of the article. Otherwise we must assume in some way Lloyds Bank and broadband providers are in some way related to the article. As I say however there many articles I could post related to the subject discussed. A doctor local to here published a book called ‘The Treason Within’ on that very subject for instance.

Yes, clinical trials can give some very different results. But then, those of us who have been trained to read scientific reports, are usually able to compare them by bringing them into a like for like basis.

Yes, I agree that there is strong evidence that Aspirin is not good for some people. But, if I were you, I would not rely on a "report" in the beauty column of a newspaper.

I agree about the source although you seem to accept in this case the information is reliable. I have looked into this subject before because it is something I personally have rejected because of other clinical trial information showing the same thing.

The "way of reversing MS symptomatically, that has yet to see the light of day" - oh, really ... It has seen the light of day. It was published in 1997, in a reputable journal. It relates to exactly one person. The abstract states that she was expected to become functionally quadriplegic some 5 years before the treatment started - that could suggest that the course of her MS had slowed right down before the treatment commenced. That is the trouble with small sample sizes.

Although that report may relate to a limited sample size he has had his work published related to a much larger sample. I did read it all up but in essence it is much more complicate than a layman can do and the guy practises in New York. It is written up in the Journal of Alternative and Complimentary Medicine in 1997

As for your "endorsed by NASA" claim. The research published in the NASA tech Report that you cite did not relate to MS. It related to "human neuronal progenitor cells". So the treatment was actually applied to cells that are similar to stem cells, grown in a Petri dish, in a lab, with a conclusion that the growth rate was increased. Hardly a ringing endorsement of a wonder treatment, is it.

If you read the discussions and conclusions starting on page 26 you will see how it relates to MS. The issue is not if this is a stunning endorsement of Sadyk and others work, possibly not although any endorsement by NASA would sort of count science wise would it not. It is yet another avenue that the current evidence based medicine route is not investigating. Are we following up on every lead to help people my conclusion is no.

Saying something has seen the light of day because it is published in medical literature but not followed up rather reminds me of the opening lines from the hitchhikers guide to the universe, - It was published in a report locked in the basement of the planning office.

If you are, as you claim, a layman, then please do not try to confuse the issue by scattering your posts with references that you hope will prove your point. Those of us who have had the benefit of scientific training will usually spot the flaws very quickly.

So if I say something as a layman, which I thought was an expectable status on this board, I confuse the issue by posting links to expert comment – interesting viewpoint.

OK, David, since you insist ...

The BMJ article:
This is a report on the actions of an organisation that (every six months) conducts a meta-review of the published research with a view to informing those who may wish to commission research projects. Yes, they do look at interventions that are not evidence based. But, did you actually read what they said in the last paragraph?
Finally, we would like to emphasise that our categorisation of the effectiveness of treatments does not identify how often evidence based and non evidence based treatments are used in practice.

Yes of course I understand that, however are we saying the BMJ are deliberately setting out to mislead the general public that most things their doctor will offer them is not evidence based. What do you think representative figures would be then? I have asked that question related to MS if you want to have a stab at answering that.

The JS Online article:
Yet again you quote from a newspaper. And what is the big finding? Against FDA rules, some studies are not reported within one year. Gosh, what a surprise. Ask anyone who has ever been involved in publishing scientific papers, and you will get told the same thing: it can take two years to get a paper accepted for publication. With one exception to my knowledge (and non-medical at that) editors will wait until all the peer reviewers have commented before the decision on whether or not to publish a paper in its submitted state. If not, the authors then have to be given time to effect their revisions and re-submit the paper, The revised version then has to be reviewed. If the decision is in favour of publication, a suitable slot in a forthcoming issue has to be identified so that very long papers are matched to short ones - and the journal size is adhered to.

If the authors are in more than one country, as frequently happens even in drug trials, the logistics of generating the written words are no small thing. I have been there - as author, reviewer, and as an editor. Try, if you can, to consider a paper where two of the authors are in England, one is in California, and the journal is edited in Australia.
Then ask yourself why a journalist in a provincial American newspaper should worry about little details like scientific lead times when he has an editor demanding copy before the deadline for tomorrows edition.

And that, I think, has addressed your two remaining points.

This article related to deliberate suppression of information and again quotes a BMJ article. Are you disputing that deliberate suppression of information is common. The health committee 2005 report ‘The Influence of The Pharmaceutical Industry eludes to it. Vioxx would be one of several cases where it has been proved in court for instance.

Mark

Thanks that is about the number I thought it would be.

So if we take the decision for people diagnosed with MS have then Tysabri is the only licence drug proven to licensing standard to slow the progress of MS.

There are other licensed options which are proven to reduce relapse rates and other licensed treatment for various symptoms. Gilenia of course has some evidence to support reduction of disease progression but sits awaiting a NICE decision

If we take the 1000 figure on Tysabri that equates to 1% of the estimated 100000 diagnosed with MS in the UK. So if the 99% who can not access it for one of the many reasons then they have either to accept a licensed treatment with no evidence that it will stop disease progression or look at some other non licensed treatment.

If we then look at the availability of the other licensed treatment availability in the UK then I doubt it much exceeds 10% of those diagnosed with MS. So in total some 10% maybe as much as 15% of people diagnosed with MS in the UK have no evidence based solution even offered to them.

That then set the scene for why people diagnosed with MS seek treatment outside evidence based medicine.

We then come to what is suitable evidence for such choices.

LDN it is the mammoth amount of anecdotal evidence for stopping or slowing MS relapses and progress. CCSVI seems to amount to the same type of evidence but less in numbers terms. At least the lack of blood flow can be relatively simply be diagnosed to see if that issue is relevant then a relatively low risk option of treatment which regrettably at present looks as though it will need repeating from time to time.

You then come to a host of other alternate solutions that seem to be very safe but need to be tried to see if personal benefit is achieved.

That is the principle problem I see with evidence based medicine currently available for the treatment of MS. If you want to slow disability progression then Tysabri is currently the only licensed evidence based solution and that is unavailable to 99% of people diagnosed with MS.

Yes, I do see other problems with evidence based medicine and I have listed some of my concerns but bottom line even if none of those problems existed it is still not currently available to most people diagnosed with MS in the UK.

That is in no way intended to criticise people with MS who have been offered the licensed treatments and chosen to accept them.