David, I’m struggling to picture the sort of arrangement you would like to see replace the existing one. I expect that ‘science for its own sake’ would come into your preferred arrangement, and also ‘independent science’ - and I really would like an explanation of what you mean by that one, by the way - but it is not clear to me how a system where profit is not the principal spur to innovation would work, let alone work better than the current arrangements…
Alison
This post confirms my belief that you do not read (understand?) my posts properly.
My comments on the LDN dosage thread had nothing to do with evidence based medicine. In fact, the only person who brought that particular topic up was you.
My comments on that thread were to challenge your (yet again!) exaggerated claims. Time and time again we have LDN threads on this forum and, every single time, various people report that LDN has not worked for them, that they have continued to progress or that they have continued to relapse. Normally you completely ignore these posts. The only recognition of them that I can remember was when you blamed these individuals for doing something wrong because LDN should work! Even more damning: the links you post in supposed support of your view do not agree with your claims that “LDN stops all disease progress”, “LDN stops all relapses”, “For most people [LDN] is the most effective DMD there is”.
So there is no need to quote evidence based medicine to discredit your claims: all one has to do is read the LDN links that you post!
Incidentally, had it occurred to you that I may have other reasons for not posting on this thread? I have been busy! And engaging in a pointless argument with you is not exactly a high priority.
You have not answered Alison’s question David.
What is “independent science”?
HEAR HEAR!
Kx
Well, thank heavens for that! Science for its own sake would see not a single new drug become available! What alternative system do you suggest?
Evidence please? (For all of the above, not just a regurgitation of the well known fact that most MSers are not offered DMDs.)
Finding a cure for cancer would make the successful company an absolute fortune. So, yes, I do believe that pharmaceutical companies are looking for a cure. I think they would love to find it before the charities and tobacco companies do, even if only so they can patent it first.
A competitive drugs market is the very best incentive for innovation that we have.
What would you replace it with?
In what ways would it be better?
That is why as a society we train doctors and scientists. I trust my doctors, don’t you?
Let’s come back to the original post.
The link you posted can be summed up in one very short sentence: It is utter b******s!
I give you just two examples which I would love to hear your justifications for:
the statement “There would be no need for… phony ‘public health’ organizations peddling the latest ‘miracle’ drug” with an advertisement for a cure for herpes right next to it on the same page. A snip at $324.
the suggestion that very severe mental health issues (e.g. schizophrenia) are caused by taking antibiotics and that all these people need to do is stop taking their meds and sort out their “gut health” to be better.
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
The saying
‘if you can’t stand the heat stay out of the kitchen’
springs to mind
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.
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 , one is in , and the journal is edited in .
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.
Geoff
David, it seems you are trying to set a test here for evidence-based medicine to prove its efficacy for people with MS. What answer would you accept as a pass mark? Everyone on drugs with a proven capacity to reduce disease progression? Everybody cured? It makes no sense to me. I just can’t accept your suggestion (and forgive me if I have misunderstood you) that evidence based medicine is failing, just because it hasn’t solved everything.
Evidence based medicine will never fix everything, although my view is that it has the best chance of making real breakthroughs in scientific undersanding of MS and developing good drugs to suit. Recent discussions in Parliament suggest that we can look forward to public funding support for trials prompted through the adademic rather than the commercial route. That’s good news, I think. Let’s cast the net as wide as possible. There is plenty of work to go around.
Incidentally, you seem to hold it against mainstream medicine that clinicians are often imaginative with prescribing drugs that are licensed for one thing (epilepsy is a common one), but happen to do some symptomatic good to MSers. I cannot understand how you think this undermines the evidence-based medicine argument, when we are talking about drugs that have already demonstrated their safety through the clinical trial route.
Alison
I can and will stand the heat. Can no one actually answer my question in an evidence based way?
Let me put a link from the MS society re the befits of the licensed treatments.
Unless challenged with contradictory evidence I think that is a reasonable summing up of the benefits and risks.
I am now just looking for evidenced based answers to sum up what percentage of people get treated by evidence based medicine in the UK with a chance of slowing disease progress?
What percentage of people get treated by evidence based medicine in the UK that have any chance of benefiting in some other way?
Every link I have put up so far has been challenged in one way or another except this one:-
Who is going to challenge this one?
Alison
I will give you a specific answer to your question since I started this thread because I made a comment on how to adjust the dose of LDN and the thread was almost entirely taken over by criticism that I was making claims not backed up by clinical trials. The people making the criticism did not even try to answer the question asked.
I am in no way trying to criticise doctors for doing the best for patients by prescribing LDN or any other off label treatment.
I would not criticise alternative medicine practitioners for trying to help people either.
Nor am I in any way attempting to suggest that people who take licensed drugs are in any way wrong to do so. Indeed part of the problem I see is the current system produces things that by definition are so expensive that rationing is inevitable.
In an ideal world everything we are offered by doctors or any other health care professional would be evidence based back by clinical trials all of which were honestly reported on. Then followed up long term in a scientific way to determine their clinical effectiveness over the long term which can be different to what is suggested by clinical trials.
The point I am trying to make is life is not like that, it will change in time, the internet is a marvellous catalyst for that change. Till it does we have to discuss treatments for MS that does not have the licensing seal of approval. That is all I am saying.
Just for your information here is the original link I posted to back up the claim I made which clearly states the basis of the evidence is
overwhelming anecdotal evidence. If it was overwhelming in 2005 what will it be by now?
David,
I don’t have time to trawl through loads of links I’m afraid & that isn’t really what a proper debate should consist of.
I’d like you to explain to us what exactly you propose should replace the widely accepted premise of evidence based medicine. At the moment, all I can gather from your previous statements is that you think everyone should be free to choose whatever treatment they want to undertake, regardless od whether it has been scientifically proven or not.
Is that really what you mean?
If we want stem cell treatment, CCSVI, Tysabri, Gilenya, LDN, whatever…we should be able to just go ahead and have it & report back in 20 years if we are still around? Really???
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.
HKFooey
This debate is not about changing the current system, that is slowly going to happen anyway because the drug industry are rapidly coming to the end of patent protection on so many drugs.
Although I would like medical research to be funded by some mechanism separate from drug sales so that drug companies vitamin and herb providers and the like made reasonable profits from supplying their wares.
I started this debate because every time I post anything about LDN I am criticised by making claims unsubstantiated by clinical trials.
I thought it best to start a separate thread and debate the issue rather than the issue constantly taking over other peoples threads.
However if people do make a decision to go for say LDN or CCSVI both of which are not currently recognised treatment for MS surely it is wrong that no one makes any official attempt to define how effective they are.
LDN particularly is dirt cheap so why has the NHS no interest in investigating it?
CCSVI is now receiving some proper scientific interest but since it was discovered as potentially of use in the treatment of MS in 1896 that is hardly a swift response to explore every avenue for the benefit of the sick.
People spend their own money taking the risks they decided to take and there is no system to follow up what happens and potentially save the NHS money. That has got to be wrong.
Hear Hear Karen. Enough said.
Yours,
Moira