Please elucidate Mhairi. To whom are you referring?
Shall I assume that you mean everyone who is replying to this thread as you say “so that they can all pontificate”?
And by inference, me?
I have been trying my hardest to ignore this thread, mainly because every time I read your posts, David, I get so riled up.
But I can’t stay quiet any longer.
All you ever post about on these boards is how wonderful LDN is. You make wild claims that it is the safest and most effective way to slow and STOP MS progression.
You make statements that are scientifically completely wrong. This really concerns me because newer member of the MS community who are at the start of the learning curve may well take your information as being correct.
You have in the past stated that LDN is an immune modulator and a DMD. FALSE. LDN has no effect on the immune system and is not a DMD. It is a drug that alters the endorphin action in the brain and in higher doses nullifies the effect of opiates due to this action. In lower doses (LDN) the endorphins will definitely increase ones sense of well being and may reduce some symptoms related to pain and discomfort. This is no small thing as chronic pain can be very deleterious to one’s overall well being and can increase the disability of MS. Pain can prevent movement which inturn reduces fitness and so the cycle can become vicious. Increase the person’s sense of well being, reduce pain, improve mobility and of course a whole lot of SECONDARY symptoms of MS will improve. But this is NOT the same as slowing or in any way altering the PRIMARY disease course.
You often fail to mention to people that you yourself do not have MS; that it is your wife that takes LDN. I am, as I have said before, very pleased that your wife’s MS has stabilised. Whether or not thi is due to the LDN is impossible to say. Her MS may well have plateaued and stayed stable without it as many people’s do.
You constantly bang on about the medical conferences as “proof” of LDN’s efficacy. Sorry, but testimonials drawn from people who have found it beneficial does NOT constitute a valid endorsement of a treatment. People who may have tried LDN and found it did nothing for them or people who have had negative effects from it are hardly likely to write in to the LDN Trust saying how wonderful it is. They are far more likely to simply stop using it and report nothing so the so-called data you like to quote is inherently biased.
You like to denigrate the licenced treatments for MS on several grounds. One of which is your litany of complaint that pharmaceutical companies are by their nature bogus and have a vested interest in keeping us sick. Garbage to that. Without a cure for MS there will be a steady and ongoing number of people requiring DMDs so the more effective the treatment that the pharmaceutical companies can come up with, the more they are ensured of a guaranteed customer base into the future.
Do you really think Dickson’s Pharmacy in Glasgow sells LDN out of the goodness of their heart??? Of course not. That little sideline alone is generating them about £400,000 pa. Nice earner…
You also say that Tysabri is the only drug licensed for use that is proven to slow down progression in MS. Whilst that in itself may be true it is only one aspect of the picture. ALL DMDs reduce not only the frequency but the severity of relapses. This alone is of huge benefit. This means millions of pounds in savings for the taxpayers who are not hit with increased hospital admissions and sickness benefits. It means enormous savings in GDP as more people with MS are able to continue working productively. And most importantly it means far fewer people are being hit by relapses that in the past may have left them permanently disabled.
You have started this new thread to “debate” evidence based medicine and as your opening gambit you posted a link to a site that is the most unmitigated garbage I have ever seen. Gut bacteria for curing schizophrenia??? Sometimes I wonder if your gut bacteria needs adjusting…
This is not a debate David; this is more of your grandstanding and one eyed view of the nasty, evil pharmas Vs. empirical science.
It has got to the stage where I can’t be bothered coming on these boards any more because every time someone has a query about a drug, a symptom or a treatment there you are spruiking LDN. Do you ever offer advice on anything else? NO! And then you get really unpleasant and nasty when others beg to differ with your unproven and at times highly misleading and uninformed views.
LDN is at best a mildly beneficial drug at relieving some symptoms associated with MS. Until there are clinical trials one cannot in any honesty claim more than this. You continue to say that the trials will never occur as there is no financial benefit in this. The other view is that the trials will never occur because the chemical make up of LDN does not fit with the known physiological facts about MS at this stage. So rather than wasting precious and scarce research dollars on a drug that is unlikely to prove of any real benefit, researchers would rather concentrate on areas that are more likely to yield valuable results.
I have no problem with people experimenting with LDN. I DO have a problem though you with you implying that other recognised treatments are dangerous and that LDN is preferable. It scares me silly to think that some poor misguided person would actually take your words as Gospel and go off their approved treatment in favour of LDN and then years down the track regret that decision bitterly.
For your wife’s sake (and for your ego’s sake) David, I sincerely hope she continues in good health.
Belinda
OK, David,
You can be selective in what you choose to answer - so can I.
What you actually said early on in this thread was:
" 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 "
And I pointed out that one reference was to a single patient, and the NASA report referred to specific cells grown in a lab. Are you now backing away from that statement?
You keep saying that there is only
“only one treatment proven to licensing standards to slow the progress of MS”
when in fact ALL the DMDs are licenced, and were licenced as far back as 2005 (I gave away my older copies of the BNF, so I cannot go back further).
You look to the OneClickGroup for support. Really? A group who support the illegal occupation of church property (St Pauls and Bristol) to protest against capitalism. Do you really think that their statements are good evidence?
You cite one doctors comment about LDN (I thought this thread was supposed to be about evidenced based medicine) on a website that claims to be the “UK leaders in the treatment of MS”, and are based in the same street as a certain Glasgow chemist active in the supply of LDN.
Well, here is another doctor’s comment:
http://getbetterhealth.com/low-dose-naltrexone-medical-revolution-or-pseudoscience/2010.05.13
Geoff
Thank you, Geoff. The thread having, inevitably, veered off into LDN territory, I think this link deals with that issue, and the claims made about it, very clearly.
I was particularly interested in the risk that that genuine research into LDN might actually be hampered by the makers of exaggerated claims for it, on the grounds that no serious researcher with a reputation to lose wants to be seen in that sort of company!
Alison
Fantastic article Geoff. That really sums up what I was trying to say far less ariculately.
Thanks for posting that.
Belinda
Ditto from me too Geoff. A great link.
I particularly like this extract:
"Meanwhile, the LDN community are turning a promising if preliminary treatment into essentially what is snake oil by promoting it for an implausibly long and contradictory list of indications. They are making the classic mistake of extrapolating prematurely from preliminary evidence, and relying heavily on anecdotes. Anecdotes are just another form of preliminary evidence (a particularly weak form at that) that should only be used to indicate promising new research, but not as a basis for clinical claims.
Ironically, LDN promoters may in fact harm research into LDN by giving it a bad name. Researchers may be reluctant to hitch their careers, or funding agencies commit resources, to a treatment that has a dubious reputation. If the research is promising it will still get done, but if anything it’s likely to be slowed by the efforts of the LDN promoters."
Karen x
I’m still waiting for your replies David.
Geoff
Answers in red.
OK, David,
You can be selective in what you choose to answer - so can I.
What you actually said early on in this thread was:
" 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 "
And I pointed out that one reference was to a single patient, and the NASA report referred to specific cells grown in a lab. Are you now backing away from that statement?
I have already given you the date and magazine this worked was published in back in 1997. It relates to many more than one patient. Do you honestly think NASA would endorse the work of a doctor based on a report based on one patient?
You keep saying that there is only
“only one treatment proven to licensing standards to slow the progress of MS”
when in fact ALL the DMDs are licenced, and were licenced as far back as 2005 (I gave away my older copies of the BNF, so I cannot go back further).
I said here are was basing my statements about what evidence based medicine had so far come up with on the MS Society publication. I gave a link. You can look at that two ways, where is the evidence that anything else is proven to reduce disease progress other that Tysabri? Or forget all about what any of the licensed treatments do and just state that even then no more than 10 – 15% of people diagnosed with MS are given the licensed treatments in the UK. The rest have to look for solutions outside evidence based medicine. That is what drives people to try other things.
You look to the OneClickGroup for support. Really? A group who support the illegal occupation of church property (St Pauls and Bristol) to protest against capitalism. Do you really think that their statements are good evidence?
I would only except anything as good evidence once I had checked out what any source had to say. The problem is that in my view the most credible source of criticism of the pharmaceutical industry is the House of Commons Health Committee report ‘The Influence of the Pharmaceutical Industry’. It is long and whilst it is very critical of the industry in the way it reports on clinical trials it does, as I would, place some benefits on having such an industry. However if you wish I will base comments about what is currently going on with paragraph numbers from that. It is copyright and the rules of the site dictate links rather that coping copyright material
.
However as a general comment about capitalism it is my view that is the best system I know of to live under, however no system is without fault and in the case of the medical industry only testing things that meet it’s financial objectives is a failing people and that needs to be addressed. It is leaving people sick that do not need to be. Medical research needs to be separated from product sales if we wish to address that issue. In the meantime each of us has to be aware of that problem. In the case of MS that means considering other treatment options outside of evidence based solutions i.e. considering other evidence other than clinical trials sponsored by the drug industry if that system has yet to find a solution to your problem.
You cite one doctors comment about LDN (I thought this thread was supposed to be about evidenced based medicine) on a website that claims to be the “UK leaders in the treatment of MS”, and are based in the same street as a certain Glasgow chemist active in the supply of LDN.
Well, here is another doctor’s comment:
http://getbetterhealth.com/low-dose-naltrexone-medical-revolution-or-pseudoscience/2010.05.13
Yes there are other reports like this around, Wikipedia for instance, they amount to the same thing LDN has not been tested to licensing standards. I agree, it has not. That is the exact problem people diagnosed with MS have who do not want or can not have the licensed treatment options. Stating something does not meet licensing standards does not add any helpful information
. If I am going to consider a treatment licensed or not I am interested in two sources of information, what the patients say and what doctors say who have experience with that therapy say.
I’m still waiting David.
11 questions. 0 answers.
David,
My comments in black, your quotes in red.
In the case of MS that means considering other treatment options outside of evidence based solutions i.e. considering other evidence other than clinical trials sponsored by the drug industry if that system has yet to find a solution to your problem…
Once peope start considering options outside evidence based medicine they are leaving themselves wide open to snake oil salesmen of all sorts. Without rigorous testing and being able to replicate the results AND identifying risk facors, contra-indications and adverse effects people are exposing themselves to all types of potential risk. A Dr’s first obligation is to do no harm. Thus the importance of clinical trials to ensure the safety profile is acceptable and that the efficacy of the drug makes it worthwhile.
You do not slither out of it that easily, David.
I told you that it was a 1997 publication. The abstract specifically refers to 1 patient. Perhaps you should try reading what you cite. The exact words in the abstract are “A 40 year-old woman presented in December of 1992 with CP MS …” Now when I was taught English, “a woman” was singular. Singular means 1.
You offered the NASA reference to support your statement as quoted above. Now you claim that it does not - that is exactly what I told you earlier in this thread.
So, never mind the points that I have raised, how about you try to give honest answers to some of the points that others have raised. You started this thread to discuss “Evidence Based Medicine”, a topic in which a lot of people have an interest. Who twisted it back to LDN?
Geoff
Just to set the parameters very clearly so we all know what we are talking about here is a defintion of Evidence Based Medicine that might be useful
“Evidence Based Medicine (EBM) is the “conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients. The practice of evidence based medicine means integrating individual clinical expertise with the best available external clinical evidence from systematic research” (Sackett et al. 1996). EBM is a movement which aims to increase the use of high quality clinical research in clinical decision making.”
Seems a reasonable approach to me taking into account my earlier comment about “do no harm”
Belinda
Still waiting.
11-0.
Ooo, that sounds like a blowout victory!
Shame the other side didn’t even put up a defence
Thanks for this link Geoff, a very interesting read
Karen
I can not find a post where you have put up 11 questions can you please give a date and time and I will reply as soon as I can, I am out tomorrow however
Geoff
Previous answer to publish sourse cut and pasted in blue below, page 26/27 in the NASA report endorses Sanyk,s work the study however does not replicate it, you either trust NASA knows what it is talking about or you don’t. I can’t help you with that issue
You do not slither out of it that easily, David.
I told you that it was a 1997 publication. The abstract specifically refers to 1 patient. Perhaps you should try reading what you cite. The exact words in the abstract are “A 40 year-old woman presented in December of 1992 with CP MS …” Now when I was taught English, “a woman” was singular. Singular means 1.
You
offered the NASA reference to support your statement as quoted above. Now you claim that it does not - that is exactly what I told you earlier in this thread.
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
No, I will not do any more work for this thread. All you have to do is read my replies. The questions, points and information that you have so far ignored are all there.
Belinda
I agree with your comment about evidence based medicine. The problem comes when there are no safe clinically trialed to licensing standards treatments available to you. If you wish to stop or slow the progress of MS then that is now the case.
Now all drugs that can be prescribed should have gone through safety tests, so then comes the question of risk. We are now licensing treatments for various conditions including MS that effectively are known to have the potential to kill, indeed Gilenia is under investigation right now to see if that is one of such treatments. So first do no harm is going out of the window.
So do you opt for one with a known risk that it might kill you or one that is safer but the effectiveness is less proven. This then becomes the personal choice people have to make, but remember most people in the UK diagnosed with MS are not offered licensed treatments anyway.
The other problem is for instance that treatment of CCSVI is available but not on the NHS, LDN is in some places. So what is available to people in the UK is then a post code lottery, sativex is another licensed product difficult to obtain on the NHS.
I personally do not think licensing is the appropriate route for known to have the potential to kill products, I do however feel the patient should be free to access such treatments if they wish. Licensing in my view should be restricted to known to be safe products, accepting of course that true zero risk is not possible.
We need to remember nothing works for everybody, so if you are going to risk your life finding out if something works for you should be aware of all the known risks before you commence the treatment.
I kept out of this and confess I haven’t read every post or clicked on every link,but,I agree with PJ and thank Doctor Geoff for the link which I have read.
David you are in danger of distroying the good reputation of LDN.
I have been taking LDN for 3 years,it has not stopped progression or relapses.That is fine by me,I didn’t expect it to because when I spent a year reading about LDN,I had the sense to ignore any posts like yours which make outlandish claims about a drug you have no experience of.
I listened to the people who were honest and stated the facts about their experience of LDN .So I thought,it might help a bit,lets try it and see. And it did just that for me,it helped my bladder and cognative function.I was delighted.
I start Tysabri 2 weeks on Thursday,( yes I am counting the days ) I wish I had started it a year ago.I wanted to,was desperate to but the neuro wouldn’t count the sensory relapse I’d had as disabling,so I was left with nothing. I’ve had no quality of life and came very close to killing myself.I thank every god there is for Tysabri. I’ll still be taking LDN because it helps with my bladder,but there is no way on earth you can compare the two.
I don’t know what it is you hope to achieve,I really don’t,but to anyone who is curious about LDN,or any drug for that matter,please,please get your information from people who have personal experience of them,be it good or bad,as well as the Society,MS Trust,LDN Research Trust. Not someone who clearly has some kind of agenda,doesn’t have MS and has never taken any of the drugs he talks about.
AnniOnynymous
Not sure exactly what you are asking but I will try to answer.
Who would make my wife continue to take LDN if she did not want to?
My wife was dying in 2004 and trawled for hours on the web to find some treatment to stop her dramatic downward move.
When she found LDN she read up about it and decided that was what she wanted to do. She then took a week persuading me to look into it. I then took a month researching it primarily to check it was a safe thing to do but also to collect sufficient information to persuade her GP and neurologist to allow it i.e. prescribe it.
I was totally shocked it worked, which is curious because I had been in touch with a doctor who used to treat his MS and about 100 people with MS that all said it stopped their disease progress. Most were in the US and therefore added LDN to their existing DMD initially but following being satisfied LDN was sufficient for them most but not all stopped tasking their DMD.
Regrettably as time has gone on we have come across a few people LDN does not work for. Some of this may be down to the fact that not everyone does know they have to adjust the dose individually but there is not a single doctor I am aware of who finds LDN works for all their patients so the old adage nothing works for everyone seems true of LDN just like everything else.
In 2004 the only clinical trial that had occurred for LDN was for AIDS in the early 1980’2 so her decision was not based on clinical trial evidence.
She did write an article for New Pathways but frankly I think the way people are verbally abused here if they say anything that some people don’t like then I think I would recommend against it.
In the last couple of days I have been accused of being a pharma shill, responsible for all sorts of other things to. I was even accused of not having any medical qualification which is true but I did not know it was a crime till recently.That’s why I started this thread so at least we take the subject into an area that only those who wish to partake do.
I think people are trying to create a healing environment but possibly have some issues to work through yet for themselves