LDN discussion in Select Committee of parliament

Everyday living
41

I make no retraction. I seem to remember the figure of 3 in the trial http://www.msinfowiki.ca/index.php?title=Tysabri_(Natalizumab, maybe you think that is not a lot, but Tysabri allows PML to occur becuse of how it works, so true, Tysabri did not kill them, but it causes the problem if the JC virus is present (see earlier post). The number is high now and I seem to remember the number in trials being higher too.

You wriggle to your hearts content, but I stand by my claims, and I would not take Tysabri without screening for JC virus if I was offered it. Its mechanism is reasonable as long as the risk is screened. Shame so many have acquired PML, that suggests inadequate screening in place.

Anyhow, my EDSS is 8.5 and I dont have the stamina to battle with you, especially when you insist on taking on points which are irrelevant to this thread. I know I have strayed into immunology a bit but lets at least stay on the point. Time to contact your MP about the APPG meet on September 13th and stop wasting our time with trivia.

42

Geof, 60K a year is a typo, we told her 6K

43

I have added a couple of thoughts in bold text:

By the way, I wish you well with getting an LDN trial - I think this is a wonderful opportunity and am delighted that the change in the funding climate is now making this a real possibility.

Alison

44

Thanks Alison, I was just geting tired of the evangelising from rizzo about tysabri, but i understand, all of us with ms are aware of the side effects and taking the risks, i dont wish to put anyone off Tysabri but LDN has taught me not to evangelise and add to the mythology, same applies to Tysabri for me.

45

Reply to ABarnett.

I am paraphrasing in some places to save space.

I asked if I was right in thinking that the “vast library” you offered to send Geoff was not limited to the 24 items I could find about LDN and MS on Web of Knowledge.

You replied that I should google OGF and that you had over 100 papers regarding OGF and endorphins. (I’m assuming that this part of your post was to do with the above question because it is not terribly clear.)

I searched the academic database Web of Knowledge last time for articles regarding OGF and the immune system as well as LDN and MS, but I have now searched again using your recommended terms. OGF AND endorphins returned 21 items; “opioid growth factor” AND endorphins returned 29 items. Searching within these for “multiple sclerosis” returned 0 items.

I asked if some empirical data been published that support the role of met enkephalin in treating demyelination?

You did not respond.

You cited a paper by Zagon et al. It is a study of mice. I asked if there were any human data.

You did not respond.

I asked what you meant “effectively” in the statement that available drugs do not manage MS effectively.

You did not respond.

I asked what happened in response to your statement that Avonex accelerated your MS.

You did not respond.

I asked you to supply supporting information for your statement that the Avonex trial found that “the wrong DNA, it [Avonex] is bad news.”

You did not respond.

I asked you to retract the statement, “Tysabri killed a lot of people in the trial!” because it is wrong.

You have not retracted the statement. Instead you replied that you believed the number to be 39 or 49. It was not. I ask you again to retract the statement.

Late addition to this reply: You have just now stated that you stand by your statement despite revising the number from 39-49 to 3. I welcome the use of the words “I seem to remember” rather than presenting beliefs as facts and I suggest that you familiarise yourself with the correct data before you brandish such inflammatory and potentially scary statements again. Also, I find utterly bewildering and incredibly insensitive that you can call this type of thing “trivial”. Amongst other things, you claim that Avonex is “bad news” if you have the wrong DNA, but do not explain yourself and claim that lots of people died in the Tysabri trial. Put yourself in the situation of someone already on Avonex or Tysabri who reads this thread. For their sake, and anyone else who may be affected by the information on this forum, it is essential that that information is objective, accurate and robust.

I asked you how you know if LDN is helping you if you are still progressing and not having relapses, but are diagnosed as SPMS.

You replied that you don’t know, but that you haven’t had any relapses since starting on LDN. I appreciate your honesty, but am still puzzled – were you RRMS when you started on LDN or perhaps SPMS with recent relapses?

I now turn to the rest of your reply. I have a few questions/points.

You said, “Progresion is about existing nerve damage which for me was made too bad by the avonex reaction in the first place.”

You have an unusual understanding of progression versus my own knowledge and the information presented on reputable websites such as the multiple sclerosis research blogspot. Are you suggesting that progression does not involve new damage? How would a reaction to Avonex add to nerve damage? You suggest that I talk to a neuro to understand it. I suggest that if you present information as fact, you should be able to explain it yourself.

You say, “there is no medical or clinical reason to deny it [LDN] to me, so I should be able to get that prescription on the NHS.”

I’m wondering what you mean by no medical or clinical reason?
What are the implications for the NHS, if such a policy was to be implemented?

46

Please point out anywhere I have “evangelised” about Tysabri.

Mythology works both ways. Irresponsible use of false data adds to the impression that the risk of PML is higher than it actually is.

It’s all very well being careful not to sing the praises of something too loudly, but it is equally important to ensure that you aren’t singing the wrong words when you do raise your voice.

47

Not in the UK it isn’t. There has been no PML.

You two were banned in 09 for spamming. You were indirectly responsible for an enormous amount of stress here by telling Joseph Wouk at the LDN Conference that the MSS didn’t allow discussion of LDN. WRONG! WRONG! WRONG!
He then launched a very unpleasant attack on this board, closely followed by his friend ‘Garnet’ (who doesn’t even have MS) and then David 603 (who doesn’t have MS either and has caused a great deal of stress with his completely bogus claims for LDN).

This sort of behaviour is counter-productive. You have MS. We have MS and we have no problem with LDN trials. Lots of people here are taking LDN.

Please stop winding people up and imagining that folk here are against you. They aren’t and there’s no need for this unpleasant type of comments about ‘wriggling’.

Incidentally ‘Rizzo’ isn’t on Tysabri and she wasn’t evangelising. You owe her an apology.

Read the thread again. She was trying to correct your first post about the DMDs and Tysabri. You can state your case - but not make inaccurate statements about drugs that many people with aggressive RRMS and PRMS find to be a life saver.

You wrote that there seems to be little knowledge about LDN on this board. How do you know?

There are over 300 people using this board who take LDN. We just don’t post about it all the time.

Incidentally, I read the info at LDN Science.com. All seemed fine until I read the testimonials and saw the statement that ‘Rebif suppresses the immune system’. That’s totally wrong.

Look - you brought up the science stuff and started winding people up. You made your points.

48

Thankyou for saying that. I am on Tysabri and LDN and have thought of posting my own thoughts, but decided to stay out of it because I’m really not in the mood for arguements. I remember when Joseph Wouk used the board and the trouble it caused, which I always thought was a shame as he could have been a great person to have on the board. I did think at the time someone had told him LDN was not discussed or wanted on the board. It’s only because of this of this board I am on LDN so I’m hugely greatful for that .

ABarnett;

The pros and cons of Tysabri are very clearly explained,we are screened for the JC Virus, we see the MS nurse before every infusion,urine is tested,blood pressure and temp taken. We are very closely monitored and have regular MRIs.

49

So just where exactly is the typo? Or, put it another way, where did it occur? £60K is the figure Nia Griffith uttered in the debate according to Hansard.

And, if you did actually give her a figure of £6K, I wonder where you got that figure from. The net price to the NHS in Mar 2010 was £18.73 per pre-filled syringe (I quote the BNF for that month, the latest copy I have to hand) which is almost £7K. Of course, it could have reduced in price in the following 18 months, I suppose. Of couse, the figure that she quoted for Avonex (£15K) is somewhat at odds with the BNF cost (£8.5K). If you gave Ms Griffith her information, where did you get yours from?

And, a different question, for you: Why did you post three identical new threads on this topic on the same day? Looks like another attempt at spamming to me.

Geoff

50

The problem that seems to be beset LDN is its supporters, who are prone to making rash and sweeping statements that do it little favour.

Scaremongering, inaccurate statements like

do not help your cause. Can you pleased be more precise than ‘a lot’, it has no meaning. To my knowledge there have been no deaths due to Tysabri in the UK.

Do I think LDN should be properly trialed? Yes

Will I be contacting my MP regarding your campaign? No.

I have twice contaced my MP regarding MS related issues and he has been fully supportive. Having read through the posts on this read, I do not want to jeopardise my credibility with him by supporting an ill conceived and thought through campaign.

51

Gosh, that was an illuminating article. The comments below, where the authors of the thread here, encountered some real scientists, were especially revealing (and quite amusing in places).

At one point they even answer each others’ comments using different names and when they were ‘outed’, was very interesting.

Is it going to deter me from restarting LDN? No, as I like the endorphins, but I still think that for RRMS, trying to control the relapse rate with LDN alone is like playing with fire. You may get burned.

52

It is times like this that I am so glad I am in Australia and therefore don’t have an MP in the UK to write to :slight_smile:

Are you really suggesting that you want the NHS to approve patients being able to use LDN as they wish??? What sort of precedent would that set for other medications? NO drugs are available through any public health system to be available at the demand of a patient. The idea is laughable and naive and I cannot see any MP recommending such a thing,

Getting proper trials underway for LDN is an excellent idea. For too long the debate about the efficacy of LDN has been buzzing around unanswered and properly developed trials to determine the role LDN may have in treating MS is over due.

However, you and your colleagues need to look carefully at the way you go about handling your campaign. Too often I feel that the message of the possible benefits of LDN gets lost because of the amateurish and overly passionate nature of its campaigners. The pro-LDN groups all seem to be carrying the burden of the under dog and go into any argument determined to prove the benefits of LDN before any clinical studies and trials can be done with such vehemence and such shoddy science that sadly all you do is drag LDN further down into the quagmires of quackery from which it is ever harder for serious impartial scientists to be bothered raising it.

If you stop behaving like zealots and start behaving with scientific detachment you might get further in your cause.

If I did live in Britain and therefore was eligible to sign this letter I wouldn’t simply because I could never put my name to such an embarrassing gambit claim of publicly funded self directed use of a medicine as you are requesting.

Belinda

53

I have no idea why the above has come up as Anon. I certainly didn’t mean to post Anon…

I stand by what I say publically and proudly,

Belinda