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Petition to make Low Dose Naltroxene available to MS sufferers on the NHS throughout the UK


Please take the time to read this Petition I have posted on 38degrees.org.It needs your signatures to make anything happen.Please pass it onto friends,family and other MS sufferers to sign too.
I am asking that Primary Health Care Trusts in the UK look again at the amazing results which have been endorsed by so many MS sufferers who take Low Dose Naltroxene here in the UK and around the World. It should be available on prescription to MS sufferers.Here is the website it's on:

Why is this important?

At the moment LDN is not widely available on the NHS to MS sufferers in the UK but in other parts of the World,like the USA it has been available for years.

Lots of MS sufferers who've had to buy it on private prescription say that it has rid them of symptoms which even high dose toxic drugs did not. It has also been  for use in many other conditions,

http://www.lowdosenaltrexone.org/index.htm#How_does_LDN_work_

but it seems that this is not widely known to most sufferers. At the moment most Doctors do not prescribe it or know of it’s uses for other conditions and sufferers have to buy it privately. It is a cheaper Drug to buy than most other MS Drugs I’ve heard but yet it’s not viable for Drug Companies to endorse it at such low doses (profit wise) and therefore tests have not been untaken on a large scale to make NICE approve of its use for this purpose

I receive LDN through prescription from my GP it gets me through a busy work day and I would be in all sorts of trouble with fatigue if I didn’t have it. It’s actually just about the only drug I have found beneficial as everything else Copaxone, avonex have all had effects which have forced me to stop taking them. This drug should be available to all MS sufferers so I urge everyone to sign this petition.

Didn’t do anything for me when I tried it a few years ago.

However, it seems to help an awful lot of people so I’ll gladly sign the petition.

Hope it causes a rethink, but won’t be holding my breath, truth be told

Dom

Thanks for your support.I feel that so many people with Neurological illnesses may find it helps them but like myself were not aware of it’s existance for this purpose! Drug Companies need to make big money from their Medicines and trying to sell small doses to GP’s will not make them big bucks.For a small fee though of £30 this drug might help alot of sufferers who have tried other drugs but have had to either increase their doses tenfold to cope with ongoing symptoms or have to try other drugs,which are all toxic to our bodies anyway! It’s like a vicious circle isn’t it.As I’m just really at the beginning of this journey (only taking Steroids on 3 occasions in 10 years with my RRMS) and now being told to carry on taking Gabepentin but in bigger doses if I want to get rid of muscle spasms,I searched the internet and found this alternative.I’ve read that it’s not toxic to the body at such low levels, so what have I got to loose? Now I’m pssing the word around to as many other people as possible and hope that it can help them too.It means I’ll have to come off Gabepentin gradually (even on my small dose) but hopefully I too can find benefits in taking it.

Best wishes to everyone and please please get more people to sign the petition.Only through public discontent can we get NICE to take us seriouslyI hope!

I’ve signed it but to be honest I think it’s a waste of time. Have seen many petitions on the LDN signed by hundreds of users, there has also been a debate in the House of Commons, no difference. In what way this petition is different and likely to achieve the desired results?

Here is the copy of a letter I and others sent to our MPs about 6 years ago. This is purely to advise you that it will probably fall on deaf ears for the reason of no Patent Protection.

I have suffered from Multiple Sclerosis for 38 years and the medical profession have no cure or treatment that affects the disease process of my type (Primary Progressive).

Doctors can only say “go and lead a stress free life as possible.” For my own benefit I have not seen a Neurologist in 20 years; what is the point; I do not want to waste a doctor’s valuable time.

The only drug that has benefitted anyone with PPMS has been LDN (Low Dose Neltexone) that we pay for privately. Neltrexone was patented in 1985 as an opiate antagonist so is therefore out of patent. LDN is a low Dose of the full Neltrexone and no drug company will instigate double blind, controlled trials. After spending millions of pounds they would not have patent protection.

To put it into context Disease Modifying Drugs have been found in trials to be beneficial for the other type of MS Relapsing Remitting. These drugs cost the NHS in the region of £10,000 per patient; per year. LDN however privately costs £180 PP, PY; a cost we pay from our income; usually benefits.

A debate in the House has been instigated by Nia Griffith MP on the 8th December at 6 PM to get this very cheap drug allowed on the NHS. If you could lend your support I and the rest of the MS community would be very grateful.

George Goodger

i signed it.

Thankyou for your comments Maryla and George.I am very new to LDN so please forgive me if I am covering old ground on this issue.I have always been of the belief that if you don’t ask you don’t get.Two weeks ago I didn’t even know about the Drug LDN.It was only by accident I came across people endorsing it on Youtube and thence found a Facebook Page for it:

http://www.ldnresearchtrust.org/ldn_fact_sheets.

Now that I’ve read and heard of the relief it has given to so many I will try my best to get the word out to more MS sufferers,who if it can help them, then it’s worth highlighting it. I watching MSLife live on Youtube today and there was a meeting at the end of the day regarding Disease modifying Drugs.The Doctor and Scientist on the panel were endorsing particular Drugs for use with MS patients but I kept hearing the words “side effects” used time and time again.The Scientist did mention that because of their persistance in endorsing certain Drugs, that NICE had backed down on a few of the ones it had originally disallowed on the NHS. Here’s the recording of it here:- YouTube

Thanks to Pigpen also for signing the petition.

Signed

signed, but have you spoken to Linda Elsegood?

And take a look at the website for LDNNow.

Just remember that some of the costs for DMDs given to Nia Griffith were “a long way from accurate”, and think that the error has to be overcome first.

Geoff

I have been taking LDN for several years now and have to get a private prescription and pay for the medication, it is beneficial to so many msers it should be available on the NHS I have signed the petition good luck I hope it works.

Eileen

Hi Trish44.Yes I am a member of the LDN Research Trust on Facebook and after hearing from Linda and other members, I was inspired to highlight this Drug to more people as much as I can.

DoctorGeoff- I am also aware of the LDNNow website because I Googled as much as I could about it after I first heard about it. I know I’ve come to the Table late you could say and that it seems they tried in 2009 and failed to get Trials funded and to make it more available on the NHS. That was 6 years ago and I believe that all we can do in that case is educate our own GP’s in it’s benefits.My GP knew nothing about it being used for MS Patients and suggested to me that I should just “Up my dose of Gabepentin.” I don’t feel comfortable upping a dose of a Drug that can have alot of side effects when taken in larger doses.Thankfully my MS symptoms don’t stop me functioning physically or mentally so far and I want therefore to have the choice.

If having to pay monthly a small amount to help my condition, then so be it. But for the future I would like to think that this Drug had a good chance of succeeding with trials one day and many more will see the benefits I hope

Signed and shared :slight_smile:

Why are you highlighting something your new to have no idea if it works and only read on a facebook group, yet you seam quick to knowck DMD’s which have proven to slow progression and cut down relapse rates. On the other hand LDN does not I say again if its not sunk in LDN does nothing to relapse rates or slows MS progression.

I would rather have side effects that will keep me out of a wheelchair than join some narcotic religion than be delusional and keep telling everyone in forums LDN is working yet they all get progressively worse and how bad DMD’s are.

Maybe you should try posting and highlight LDN may help with Spasticity, Help with depression and may provide relief from fatigue though non of this is even medically proven.

Think about it…NICE is all about saving NHS money LDN is cheap they also have a duty to offer effective treatments for varried conditions.

I wonder why this cheap LDN is not licensed for MS and hardly prescribed by Neuros and GP’s

It’s not even licensed as a muscle relaxant or Fatigue with MS unlike Amantadine which is licensed

Maybe the LDN group could team up with the HSCT group and do a package just add do the an extra line what LDN can do.

  • My clinical kitchen trials have shown LDN can encourage Stem Cells to swim around the blood.

    If you get extra sales I expect 10% commission!

I am supprised that with all the fraud cases surrounding pharma at the present anyone has any faith in the system any longer.

Hobs, I am very sorry if I have insulted anyone’s intelligence and I always say each to their own when it comes to Medication.

I was just trying to highlight another alternative to the DMD’s which,if you watched any of the live debate on Saturday at the MS Conference we heard a Doctor and Scientist admit that there are consequences with some of the Drugs see this video of the debate at 26:02 onwards:- YouTube

I have just heard today from my GP that I will have to get a private prescription to try LDN and as I suffer from most of the symptoms you mentioned like spasticity,numbness,fatigue,bladder weakness.I feel I’m in that category to try it. I’ve been told that Doctors and Neuros are confronted by many Drugs that companies offer and it’s not profitable for those companies to offer this Drug at very low doses. Here’s another article written and published in the Daily Mail last year:

As for insulting people who’ve tried it as being delusional and being part of a Narcotic religion, that’s a bit extreme! What’s wrong with the freedom of choice? As it’s MS Week this week you will see for yourself how much of a Postcode Lottery we have in this country.

http://www.mssociety.org.uk/get-involved/campaigns/campaigns-blog/2014/03/treat-me-right-fighting-improve-access-ms-treatments

Here’s an endorsement from the famous TV Doctor Chris Steele:

No offence but using information from a Daily Mail article is hardly reliable. Big Pharma is not perfect but thanks to them I have had access to medecine that has kept me mobile , healthy and independant fir the last 20 years. It’s not always that big companies refuse to do trials because there is no money in it. Pharma companies NEED to make big profits to fund the whole research into new drugs. It can take 15 odd years from idea to marketed drug which costs a lot of money. LDN seems to help some people with some symptoms but there are many other drugs which have known bigger benefits to MSers and they are not readily available via the NHS. I think it is more important to push for free access to drugs that can actually have a long term effect in people’s lives . I’m with Hobs, give me manageable side effects and better quality of life.

yeah the daily fail is not exactly the best source of info

i’m another one for meds that are proven to work and have kept me as active as possible. I don’t think its a case of “big pharma”, its a case of it not doing anything but being a placebo. yes placebos can work and make a person feel better, but in the end its not going to stop things from getting worse.