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The Disease Machine - Debate about evidence based medicine

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I recently made some comments about LDN on a separate thread.

Several contributors wanted to change the debate to that of evidence based medicine.

I suggested opening a separate thread, but no one did, so I have now. Let those of us who have an interest in debating evidence based medicine do so without hijacking anyone else’s thread.

Rather than saying anything myself I will just start with a link to start the discussion.

[link removed by Moderator]

How interesting!

Let’s start off a debate on “Evidence-based Medicine” by offering a link to a website which is just a shill site for the smaller pharmaceutical companies.

I have noticed an increase in the number of similar sites. They pick on a theme that will be attractive to quite a lot of people, write what appears to be a blog on the stated them (but is usually a set of links, propped up by a few words) and in a sidebar are a number of advertisements for smaller companies.
The normal term for such sites is “click-through”. On simple terms, the person running the site gets paid a small amount every time someone visiting the site clicks on one of the adverts. It may only be two or three cents per click - but 100 cents make one dollar.

I do not see the problem with big pharmaceutical companies. OK, so you can question their HR policies in some cases, but the fact remains that huge investments are needed to create many of the modern drugs that appear, and large amounts of cash are spent on production and packaging plant. Then, remember, that the patent will not last for ever, and today’s wonder drug is tomorrow’s generic.

It was a large company that figured out how to extract the active ingredient from Willow bark, and give us Aspirin. Aspirin is now a generic (and has been for over half a century) but this did not stop researchers at Nottingham University from doing the study that found that a small daily dose of Aspirin was a good defence against heart attacks and strokes. The results of their study were published in a peer reviewed journal.

So, an application of science to a generic medicine can produce an evidence based result, and one that will stand up to scrutiny by independent scientists.

Geoff

Very interesting stuff,thank you.Three years ago the LDN debate was raging on the old site.If people wanted it they knew where they could get it.

There was a civil war over it,but the facts/fiction where out there all due to the RTTR (reply to the reply).Ultimately a bloke called Joe Kwouk ( his Dad wrote the Cain Mutiny) was kicked off for telling us how to import the LDN from the USA amongst other things.

They where the days, Wb

If LDN works for you great

I know of a few inculding me where giving a hard time about taking Tysabri by 1 or 2 people on the old site that we shouldn’t take it it was dangerous 1 even said I’d be safer play chicken on the motorway and LDN and no side affects and it works very well at stopping the progression of MS I have a friend who listened to that and came of her rebif cause she was told LDN was better well my heart breaks when I see her now she said LDN helped with the bladder but as far as slowing her progression it done nothing she wishes she’d have stayed on Rebif and maybe took LDN as well she can’t get back on any DMD’s now :(.

I know some forms of MS there’s no DMD’s for and if I was like that I’d try anything I just think people who can get DMD’s should take them if they have the choice.

I myself I’m on Tysabri over 3 years now its been great for me but I’m not going into that I’m just saying I’ve never had a relapse since I started and I had aggressive rrms relapsing every 4 or 5 weeks my yearly MRI’s show my MS is stable and no progression even saying there’s a market improvement since I started Tysabri thats more then I could ever have hoped for.

Yes it can have a dangerous side affect if your unlucky enough to get it but the quality of life it as giving me back has been well worth the risk It may not last forever but I’m going enjoy every minute of it.

Mark

Goeff

Not sure about the statement that the link given is a shill site for a smaller pharmaceutical site, do you have any evidence for that.?

However there are many other sites that give a similar message.

However we do have a basic problem with respect to clinical trial evidence in that clinical trials do tend to give markedly different results.

If we look at the aspirin trial you refer to then there are other trials that effectively suggest the risk to achieve the benefits you mention are out weight by the negative results.

http://www.herald.ie/lifestyle/health-beauty/now-aspirin-a-day-may-be-bad-for-heart-2984128.html

We then come to the question of how much of medicine is really ‘evidence based’

Not all that much according to this BMJ article.

http://clinicalevidence.bmj.com/ceweb/about/knowledge.jsp

I am sure on occasions treatments do get small trials funded by good causes but the reality is most do not.

Here is an example of a way of reversing MS symptomatically which is yet to see the light of day even although it has been endorsed by NASA.

http://www.ncbi.nlm.nih.gov/pubmed/9352426

http://ston.jsc.nasa.gov/collections/TRS/_techrep/TP-2003-212054.pdf

Then there is the issue of the honesty of reporting clinical trial results.

http://www.jsonline.com/features/health/drug-research-routinely-suppressed-study-authors-find-qd3kfnn-136625848.html

Truly I wish western medicine was based on science and is some cases I am sure it is but the reality of it is so much of it is not.

The difficulty I have as a layman is knowing what is and will benefit and what is not and may harm me.

David, I don’t think that the ‘evidence-based medicine’ system is perfect, by any means. There are a hundred ways of messing up trials and the results of trials - cherry-picking, ignoring drop-outs, underestimating the sample size neede to get a statistically valid result, etc etc - not to mention to shortcomings of the learned journal/peer review process with its tendency towards publication bias and other shortcomings.

What I do think, however, is that it is the best way we have of muddling our way through, and the best defence we have against snake-oil peddlars, scare-story merchants, fanatics and all the other groups who have axes to grind and money to make out of sick people. It is also the best way of keeping the pharaceutical industry honest, by the way. The thing to do, I think, is to work to iron out the kinks and get it to work even better. Of course there is room for improvement here, as there is in every aspect of this imperfect world. Remember how Churchill described representative democracy as, ‘The worst possible political system except for all the others.’ ‘All the others’ in this context, is the dreadful survival-of-the-most-devious- and-unpricipled free-for-all that we would get if we took the focus away from hard evidence of what works.

Just because something isn’t perfect does not mean that it isn’t good, and I think that the concept of evidence-based medicine is a shining force for good.

Alison

Markload

I opened this thread for one reason and that was because we were effectively taking over a post about adjusting the dose of LDN with what is a much wider debate about evidence based medicine.

Let me however, since you ask ,give you my views on Tysabri and any other treatment with significant risks.

Top of them all, these decision should be made by the person who is sick.

Doctors should facilitate such decisions by giving accurate information good and bad about all available options - LDN is one that is not always offered although I know that is changing slowly.

Sorry I have very little experience with Tysabri so I will use an example from campath where the 2 or 3 I have spoken to have obtained very significant results of reversing MS to an extent and effectively changing their lives. Campath seems to have about the same risks as Tysabri.

Once I had got to that point with any treatment I doubt I would willingly swap it for anything, clearly MS is not a game and it is worth taking some risks to deal with.

LDN is sensitive to me in that all available evidence suggests that if my wife had been told about it in 1986 when she was diagnosed then she would not now be sitting in a wheelchair.

So what about treatments with risk.

Clearly in my view people should be allowed them but I do not feel licensing is the appropriate route. Licencing should mean safe, absolutely safe is of course not an available option but at present it means nothing like safe. There should in my view be a separate category for proven with known risks.

Once a PCT has allowed a treatment they should commit to long term provision for those they give it too. I am aware, again from campath, of people who have been given it found it works then due to a change of policy related to licensing taken off it. Who knows, similar things may happen with Tysabri probably based on money.

You then come to the cost issue, it can not be ignored. Do you offer a proven but slightly risky treatment to a few or a less proven but safe dirt cheap treatment to many? This is where I see the current system breaking, we just can not afford it. For most people with MS it was broke from the moment the first licensed treatments came on the scene. When we come to evidence then clinical trials have their place. However once a treatment is in widespread use and I think you could now say both LDN and CCSVI treatment fit into that category then science should collect achieved results, it is the only way to get long term data anyway, you can not run 20 year double blind trials.

Who funds it well clearly you can not expect the drug indusry to fund anything except for commecial gain, however in this country why not the NHS, they always say they are short of money why will they never investigate cheap treatments.

In my view the current system favours the drug industry far more than the patient. There is nothing wrong with deriving profit from making people well but at present too many effective treatments are being ignored because of an over biased system in favour of the money. It will and is changing and the main catalyst is the web.

Alison

I agree the concept of evidence based medicine is good however we are drifting so far from a science based system it is largely failing the sick. MS is a very good example of that failure.

Snake oil salesman argument is very valid but I see that as often true of the pharmaceutical industry as any of the web scam ‘cures for MS’ we all come across.

The system is broke, it needs fixing, independent science must play a much larger role.

David the decision to take Tysabri was made by me and me alone my neuro even tried to talk me out of it but I was that very sick person when your left in a wheelchair with only the use of your left arm could barely speak of swollow being a 30 year old fella needing someone to wash and dress them and could barely stay awake for more then a few hours at a time and the only thing I could eat was stuff like soup I would have choked if I tried to eat normal food and If I didn’t sip my drinks a would have choked as well.

If your left like that and see how cruel MS can be then thank God for the drug indusry it would scare me to think where I’d be today and not once did the makers ever claim that Tysabri would do what it has done for me they did say it could help lesson the relapses I was having and for me that was worth trying.

I’m not having a go in anyway at LDN I’m really glad that it works for wife and she had got it sooner I suppose the same could be said for Tysabri if I had got that to begin with I wouldn’t have to have gone through what I did. I know of a few that have been diagnosed with aggressive rrms and went straight on to Tysabri and haven’t went through what I went through and I hope they never have to. I tried other DMD’s but they would even slow up my proggression.

Mark

[quote=david603]

I agree the concept of evidence based medicine is good however we are drifting so far from a science based system it is largely failing the sick. MS is a very good example of that failure.

Snake oil salesman argument is very valid but I see that as often true of the pharmaceutical industry as any of the web scam ‘cures for MS’ we all come across.

The system is broke, it needs fixing, independent science must play a much larger role.

David, MS is hard to fix. I don’t think that brute fact undermines the case for using an evidence-based approach to trying to get better at treating it.

As I said, I think a scientific method and evidence-based approach is a good and healthy defence against unsubstantiated claims from anyone, whether industry, lobby groups or influential individuals.

I don’t accept that the system is broken, and I fear that such an approach might lead to very valuable babies being thrown out with the bath water. I think we have a good model already. I would want to take an incremental approach to improving the way it works.

What do you mean by independent science, by the way?

Alison

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?

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.

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.
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 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.

Geoff

It’s late and I really can’t be bothered to hit my head off a brickwall right now, but had to say…

LMAO!!!

Nice one Geoff

Karen x

Well said Geoff

and well said Alison and Mark

I have nothing more to add to these excellent posts.

Goeff

When you comment on all of my points I will comment on all of yours. Lets not just cherry pick, I agree you expertise should find a flaw in some of my points, so if they do I will admit it

I see not comment against these points :-

We then come to the question of how much of medicine is really ‘evidence based’

Not all that much according to this BMJ article.

http://clinicalevidence.bmj.com/ceweb/about/knowledge.jsp

Then there is the issue of the honesty of reporting clinical trial results.

http://www.jsonline.com/features/health/drug-research-routinely-suppressed-study-authors-find-qd3kfnn-136625848.html

Truly I wish western medicine was based on science and is some cases I am sure it is but the reality of it is so much of it is not.

Karen/ Tonto

So you change the subject in the debate about LDN dose setting to that of how my comments acknowledge the validity of ‘evidence based medicine’.

When I raise a debate about ‘evidence base medicine’ you have no personal comment.

I trust you will remember that fact before you try to discredit any of my further posts by ‘evidence based medicine’ type arguments.

Mark

I have made no comment about the effectiveness of Tysabri because I have only ever met one person on it, so have no personal opinion of how well it works. That’s why my comments were related to campath, which seems to have a similar risk factor.

I have clearly stated I believe this is a choice you should have.

As for comments about the pharmaceutical industry well I think that is the exact problem I see.

It does have benefit for many, but there is so much frigging of the data, political lobbying and suppression of natural treatments going on, that it will sooner of later die under the weight of its own lies much like the banking system has under the weight of it’s lies.

When that happens then the many ‘goods’ will go along with the ‘bads’ that regulators should have taken their responsibility to eliminate much like the banking system regulators should have done.

Much like the banks crashing initially it will be much worse than had the lies been allowed to continue. I do not think we have seen the half of the banking system crash yet.

Alison

We simply do not know what causes MS, least I don’t, until we do we do not know if its complicated to fix or not.

Scurvy must have seemed complicated until the vitamin C connection was discovered.

I entirely agree the science based approach is the best approach we have with all the limits of knowledge that implies.

However the principle driver behind medical research is the need to sell drugs for profit not science for its own sake. MS is a clasic example in that most people with MS are not offered a single licensed drug and if they allow it then will end up on maybe end up on 20 drugs, not a single one licensed for MS and not a shred of evidence that that combination is either safe or effective.

It has been allowed to go too far in one direction and sick people are suffering needlessly as a result.

Do you honestly think the cancer industry is truly looking for a cure so they all go broke.

I lived through the smoking debate - no proven link to cancer - just coincidence people who smoke die younger - all that.

Now it’s gone too far the other way - go outside and freeze to death if you want to smoke.

To refresh your memory the statement that you made on the LDN thread which I challenged was:

Not everyone gets symptom improvement the main advantage is relapse/ progress reduction

so my post on that thread concerned the inaccurate and false statements you made about LDN and not about evidence based medicine.

To reiterate I have nothing more to add to the already excellent posts made by Alison, Geoff and Mark on this thread.

I suspect you would like to get into another one of your nonsensical, circular arguments about this but I have better things to do today, especially when others have put the counter arguments so well.

David, I share your concerns, expressed in your reply to Mark, about the shaky foundations of the world banking industry, but I do not accept your argument that medicine is in the same boat. In fact, I would suggest that there is one thing above all others that saves medicine from getting into the same mess as the banking system: evidence based medicine!

Alison

Rebecca

The simple bit in the BMJ article is the chart at the end, 51% unknown effectiveness etc.