What is the MSS position on ....

Shifting the goalposts again, David.

You are asked to provide evidence, and you cite “medical conferences”.

Asked to specify an academically credible conference – you offer one that does not meet any criteria for being credible, and that was a couple of years ago.

Why did you not cite the 2010 or 2011 “European Conference on LDN”. Could it be that a quick look would show that it was the same people saying the same things.

I wonder why you do not cite the American LDN conferences. Could this be because a whole lot of people have used LDN to treat a wide range of clinical problems, and it might give the impression that LDN was a “one size fits all” type of medication. There is a lot of medication licenced for use by MS victims - why do you persist in trying to drag all these preparations down to the same level as LDN?

I notice that you avoided answering my point about the numbers that do not add up. Instead, you look for another thread that asks about LDN and trot out the same stuff all over again. A statement that “10’s of thousand that find it works for them” does not fit with the few pence profit per day from each client approach Even if it is just 10,000 people, and the profit is just one penny per daily dose, then that totals nearly Half a Million Pounds. When people can get killed for a mobile phone, that really is a lot of money.

You fall back on the same, tired old "well, if you cannot accept 25 years of evidence, you will never be convinced” line. There is no evidence. A chatty summary of a non-academic “conference” is not evidence. Papers in a peer-reviewed journal or conference are credible evidence. A survey of these 10,000 people who use LDN that reported adverse side effects along satisfactory benefits obtained would be evidence.

Now, I have offered suggestions as to how credible evidence could be obtained, but you either dismiss or ignore them. If you don’t want the trouble of looking for a Masters student looking for a project, any 2nd or 3rd year social science undergraduate could do a search on Pubmed or Medline, and turn it into a quick literature review. Of course, they would have to note that LDN can mean several different things outside of this forum – but that is not too hard to do.

If you are hoping that someone will sprinkle a handful of magic pixie dust over the NHS and LDN as we know the term will suddenly become available on prescription, then I have news for you. It is not going to happen!

Instead I will make you an offer:

Get your Branch to ask the MS Society if a few of you can turn up at the next AGM, clutching laptops running Windows XP or later, and ask people if they will take part in a quick survey. You get the permission, you find the people and the laptops, and I will provide the survey software. If need be, I will even write the survey questions for you – and you can then find someone independent to check that I have not done anything to bias the responses. Both Karen and I, and no doubt a few others here are competent to do the statistical analysis, and again it would be easy to find someone independent to verify that we had not biased the results.

So what will it be? Credible evidence or none? Your call.

To answer Sunspirit’s original question, I think LDN has it’s place in the treatment of MS. In particular, I think if I had PPMS or SPMS where there are currently very limited treatment options, then I would consider it a first line treatment option and there is a lot of anecdotal eidence to suggest that lots of people have found benefit from it.

However, I personally would not consider it a credible alternative to any of the licensed DMDs for treatment of RRMS. And if anyone has been offered Tysabri it means they have severe RRMS, if, as David suggests, they chose to try LDN first then they are playing Russian Roulette & quiete honesty should check themselves into a psych unit - it’s madness IMHO.

Like Karen, I’m absolutely furious with David for even suggesting it & I agree that it is very significant that David himself does not have MS & has never experienced a single symptom, let alone been knocked off his feet by an MS relapse.

I’m not anti-LDN by any means, I have actually tried it myself in combination with Rebif. I still had relapses & I had progression when I was on it. One of these days someone will slap a lawsuit on David, but more importantly, someone will follow his irresponsible advice and end up with permanent disability as a result.

He will never learn.

I want a LIKE button!!!

Hello

I dont know the answer to your question re MSS.

I havent read all the answers in this thread.

I just want to tell you what LDN has done for me-one person-so as ‘research’ is worthless!

I had 11 huge attacks in less than 2 years. Carers were in x4 daily to attend to my every need. Social Services were involved as I am a single Mum to 4 kids. I started LDN (almost 5 years ago) and have had no obvious attacks since. I have however had slow deterioration of several of the areas that were previously affected during the 11 attacks.

LDN is my choice of medication for treating my MS-never had DMD’s.

Have had amytriptyline of various doses to deal with various spasms (successfully).

If you have faith in your doctor/neuro then follow his/her advice. LDN is a treatment choice that you are left to manage on your own (in the main-there are exceptions to everything in life!)

My doctor told me that I am the one that has to live with/deal with MS on a daily basis. Its his job to work with me and together we decide on a plan of action. I know how my body feels-he has the theory of how its meant to work!

A very important factor for me is that my doctor has as much faith in me as I do in him. I am fully aware that I am lucky in that respect as the NHS is very much a lottery sometimes (I gave 10 years of my life working in it and am aware of how difficult finding the correct member of staff to meet your needs is)

When I started LDN I was desperate-some may say an easy target (to make some money). However, I read what was available at the time and decided it was a no brainer for me-try LDN or have my kids taken off me-I couldnt care for myself-let alone them.

As I said before-this is only my story-one of the ones that u read and disbelieve because it seems too good to be true. I am aware of that.

We all have to make our own decisions-the right ones for us. LDN is NOT for everyone-neither is paracetamol.

I hope that you find the most effective treatment for you-I really do.

Take care.

Ellie x

I am not quite sure what Ellie is trying to say here and I may have misunderstood her.

But it is evidence from one peron that is worthless, MS is such a variable, complex, slippery disease that drawing conclusions from one person’s experience is at best misleading and at worst could be dangerous.

MS is quite capable of plateauing on its own so without research it’s impossible to know if one person’s improvement is down to their preferred treatment or just down to ‘normal’ MS behaviour.

Hi Tonto

I dunno how to do the quote malarkey!

What I meant was that my story, as one person, is just that! A story of how LDN affected me and is of no use for research purposes at all. If it affected everyone as it has me then thats something else…

I would never suggest ignoring medical advice to take LDN. My doctor is fully aware of what I take and its in my notes of how its affected me.

Sorry for any confusion-hope this clarifies that I meant my own story was worthless as research.

Ellie

Anecdotal evidence might be meaningless to the scientific community, but I find it pretty useful and one of the reasons why I visit this site. Surely the experience of people that actually have MS is worth listening to?

Apparently, there are 100,000 people worldwide taking ldn for a variety of conditions, but expect getting better is just a coincidence.

Thanks for the post Ellie and glad to hear you are doing ok.

The experience of people with MS is worth listening to as are the opinions of health professionals.

The trouble is getting better may be just that, a coincidence which is why proper research is needed.

I am sure that you are aware of the claims made for a variety of treatments, people do claim to experience improvement from doing lots of different things. I have even heard the wearing of copper bracelets advocated.

The jury is out on LDN, I have no quarrel with it but I am not convinced that it lives up to all the claims that are made about it.