This Is MS Multiple Sclerosis Community: Knowledge & Support

Dear all and (wo is me it will never happen Finn)

I had the great pleasure of meeting Markchip about two years ago by a mutual fabulous friend. Mark was sitting in a wheelchair and after being introduced I spoke to him. I was slightly embarrassed as when we talked I couldn't really understood what he was saying and nodded in the right places and smilled. (sorry Mark). I then met him about a year later and was quite surprised to see him minus his wheelchair but using a walker which I hung my coat on!! I greeted Mark and had a conversation with him and this time I could understand what he was saying and I didn't have to smile and nod politely!

I then met him last year and watched him walk unaided and stand for nearly an hour unfortunately I didn't get a chance to speak to him but just nodded hello - actions speak louder than words.

This might all sound sentimental but its true. The bottom line here is who cares what the history of Aimspro is, who cares what links we have to trudge through to find bits of info that might or might not be - what?

Doesnt everyone want the same thing? a better life, more meaning than sitting at computer trying to find out lots of negative things to say about something very positive.

It's part of our human nature to debate things and our right - but come on hands up who wants Aimspro to progress and hands up who doesnt. I not sure how true this is but apparently Beta inteferon wasn't trialled for long perhaps someone can clarify this? but people tried it because there wasnt anything else!

The question everyone should ask themselves is - if you had a telephone call tomorrow offering you the chance to try Aimspro - would you take it? When you know the answer to that you will see things more ojbectively.

God Bless You all
Faith xxx

Dear all,

It's good to see so many supporters of Aimspro. However, I would like to see some data on how effective this treatment is (as I would with any treatment option). The following data should be available:

- the number of people with ms who have taken it / are taking it (split by type of ms / how they were selected for treatment etc).
- the duration they have been on the drug.
- in how many cases has their disability level (EDSS) improved / stayed the same / worsened.
- Data on whether any improvements in disability have been sustained over time.
-Data on how many saw no benefit and discontinued treatment.

Surely if Daval is a serious company it should have such data readily at hand.

I am pessimistic about this treatment for the following reasons:

- there have been no successul trials (one halted and the optic neurosis trial was inconclusive)
- I know two people who have taken Aimspro (one saw no improvement and the other saw some improvement but this didn't last long).
- I know that one of the doctors in the UK who was giving the drug on an informed consent basis has had a 'falling out' with the company and no longer gives the treatment.

I'm glad that Mark has shown improvements and is no longer in a wheelchair. But if this product is so good why aren't there 100 such cases - confirmed by neurologists?

This appears to be an over-hyped drug which when properly trialled has failed to show any real benefits. I'm not a betting person but I'd be prepared to place a reasonable sum that this treatment does not receive approval. If it was a good as the press reports (people seeing again, people throwing away wheelchairs and canes etc) it would be on the market now.

Bromley

MS is almost certainly multi-factorial and heterogenous. Therefore any MS treatment will likely work for some patients and not for others. In this regard, Aimspro is no different than any other treatment.

What you are currently reading is, to be quite clear, hype. No verdict can be made until the data are in, of course.

I personally find the stories I've read compelling; every person has to make their own decision as to what they think of all this.

But it's all speculation until we have data.

But it's just incorrect to say that if it was a great drug, it would already be on the market; they are going through the necessary process, now.

I know I sound like a broken record, so I'll go ahead and put a sock in it, now.

Dear All,

I would like to ask:

Bromley said:
"I am pessimistic about this treatment for the following reasons:

- there have been no successul trials (one halted and the optic neurosis trial was inconclusive)
- I know two people who have taken Aimspro (one saw no improvement and the other saw some improvement but this didn't last long).
- I know that one of the doctors in the UK who was giving the drug on an informed consent basis has had a 'falling out' with the company and no longer gives the treatment. "


Firstly the trial was halted because the protocols were not followed see www.davalinternational.com for statement - the product was allowed to thaw thus negating the effects - if you went for a yellow fever vaccination at your GP they would get it out of fridge and give it to you straight away not leave it for two hours it would be ruined. Case answered.

Secondly two people you know - one had no improvement the other saw some improvement which didn't last long - are they still on Aimspro? Sometimes it takes a while to show improvements. There are a considerable amount of informed consent patients do you know how they are doing?

Thirdly do you know why one of the doctors in the UK who was giving the serum "had a falling out" with the company? Could it have been that protocols were not followed? it could be many reasons but what has that got to do with the Aimspro - the product.

These statements lack evidence they are merely I heard, I know someone, who? - isn't it about facts.

I find it incredible that some of the posts on this forum are not what they seem. There are some underlying agendas here.

I dont want to sound as Daunted says "like a broken record" but why oh why,do the same people keep posting such negative things about Aimspro?

Do they want it to be as good as the trials indicate? Do they want something to help MS sufferers worldwide? Or do they have their own personal agendas? If you really want to see how many people want this treatment to be licensed visit www.proventus.org.uk and while you are there, add your name to the list if you really want to get a chance ,to take a chance and and help eleviate the suffering MS people out there.

Faith
God bless you all xxxx

oh sorry all just to add to Bromley's post

"This appears to be an over-hyped drug which when properly trialled has failed to show any real benefits. I'm not a betting person but I'd be prepared to place a reasonable sum that this treatment does not receive approval. If it was a good as the press reports (people seeing again, people throwing away wheelchairs and canes etc) it would be on the market now".

It has been trialled and has show benefits - re the press reports do you think the people who give statements to the press are lying.

Over-hyped drug? it has to be licensed and to be licensed it has to be be safe, Daval want that, and MS people want that, to suggest that "if it was any good it would be on the market now" is a flippant, uninformed statement. Daval has behaved in the right, proper way to get this serum to the people who need it - they are the small fish swimmng against the current in a ocean filled with sharks.

Do you want something to aid the suffering from MS?

Night Night and god bless you - Faith xxx

Faith,

Just give us some numbers. I would be impressed if 100 people with MS got rid of their wheelchairs because of Aimspro.

You and I have a different view on drugs - I want to see relevant, sufficient and reliable data supporting the claimed effectiveness of any treatment. You are happy to rely on the evidence of a few people who claim they have seen benefits. I reserve my 'faith' for my God, certainly not for drugs companies.

I have no hidden agenda - I do have ms. What's your interest in Aimspro?

All Daval has to do is to publish some convincing evidence which it has yet to do despite all the claims in the newspapers. When will they do it?


The following press release makes interesting reading:

http://www.mhra.gov.uk/news/april/PR_Aimspro.pdf


Bromley (no hidden agenda, but concerned that ms suffers might be given false hopes)

reminds me of a joke I heard some forty years ago:



This is a, "When did you stop beating your wife?" question. I want an oral therapy that will, as a minimum, stop my decline into indignity and disability. That will be provided by good science, by definition, adopting best practice scientific method, in particular, peer review. Daval's solicitors say that results have been presented four times but dont quote the conferences or journals where their work is published. Where are these four papers? Answering that question would be a real contribution to a debate.

Of course, Faith, you can never lose a rational argument, because whatever point is made to you, however eloquently if it contradicts your view you need only say, "Well I've got ............................. Faith!" and the debate can go no further.




I had the opportunity to start Amispro, going behind my neurologist's back. I didnt. And until such time as Daval come clean with their research I wont! (I suspect the protocol story as well btw, St Georges is a very well respected teaching hosiptal.) Until such time as proved otherwise for "goat's blood" I read "snake oil". I've posted elsewhere that I am in debt to people who put themselves forward for clincal trials and if Aimspro is the great wonder drug that cures all of us I'll be happy to eat my words and be first in the queue - but my thinking now is that it wont cure me any more than a meeting with Billy Graham or a visitation from Saint Bernadette would.

______________________________________________
John
I am what I am

PS As I reread this post I think it could possibly offend the religous among us. No such offence is intended. I hope your belief brings you comfort.

To Bromley

I agree with everything you say and will wait and see what happens. Noone ever said you did not have MS. My interest in Aimspro - just to see it get a chance.

To John

I agree the debate can go no further.

Perhaps we should all just put our faith in God

Faith xx

There have been conference presentations of people having a rapid recovery of visual acuity and even getting out of wheelchairs. Search the web, you will find them.

The MHRA piece, in isolation, is misleading.

I understand wanting to avoid "false hope" but as Tysabri shows us, the possibility of 'false hope' is not limited to Aimspro.

Daunted,

I posted the MHRA piece because it is very up to date - there was no intention to mislead. It does state that there are no current trials for this potential treatment.

This potential treatment needs to be properly trialled and I have seen no evidence of this - one trial halted and the other trial was very small with unclear results.

If ms sufferers have had their vision restored or have got rid of their wheelchairs / canes - where are they? How many? These are valid questions. Who is collecting data on the safety of this treatment? Until such data is provided and published and subject to independent review, then what we currently have are individual stories.

Daval International is a company not a charity. I assume it will charge for the treatment if approved - and expect to make a return. Given this one must be careful not to be influenced by stories of almost biblical magnitude. Facts are needed and are currently lacking.

Lets hope that this potential treatment does (if approved) deliver in line with the individual stories that have been reported.

Bromley

And if Aimspro doesn't work, it will not be licensed, and Daval will not make a penny off of it. Why would they possibly spend time and money promoting a treatment that doesn't work?

Facts are needed, but there is a difference between scientific data and press. They aren't spending their time and money making a case to the press, because they are busy trying to get it licensed.

The kind of statistics you are looking for are useful and interesting to us, but useless to them, because they won't be seen as scientific and will not affect their ability to get a license for Aimspro. I therefore understand why they haven't undertaken the kind of research project you are proposing.



Yes, I understand, no attempt to mislead. But more information is needed to be clear. They had a small optic neuritis trial which found statistical significance on visual field as compared to placebo. There are some case studies with astounding results. And they had a trial canceled due to protcocol concerns; if the MHRA statement had been released a month earlier there would have been a statement regarding a fairly large ongoing trial!

I don't know why you would say there is no evidence of it being "properly trialed"- the large SPMS trial that was unfortunately canceled was exactly the type of trial regulators will be looking for. It's being re-scheduled.

All we have are anecdotes at the moment, this is true. (Although that is also true for antibiotics and LDN, and I have no doubt some people have benefited enormously from them).

But I don't get the feeling that there is any conspiracy to mislead, here, as that would ultimately do no good for Daval, at all.

I do hope we get some answers, soon, but with the trial being rescheduled, it's likely to be quite some time, now.

Daunted,

I like you!

Faith xx

Not exactly true. The negotiations with the MHRA at the moment are to get a 'specials' license for Aimspro. At that point Daval can sell the drug to those that can afford it. It will not be available on the NHS as that would require a decision from NICE, but can be sold.

If there was one solitary, peer reviewed paper on the mechanism of Aimspro I might believe there was something in it. Until then I'm firmly with Finn in the skeptics camp.

Robin

_________________
Do not go gentle into that good night. Rage, rage against the dying of the light.

True. But to date they have made no money off of it. The money they would make off of this "specials" license would be a drop in the bucket compared to full-on approval and having the NHS and other governments such as the U.S. pick it up. (In the U.S., we supposedly have private healthcare, but the government still ends up paying a large proportion of the medical bills, epecially for those who are disabled).

As far as the mechanism of action of Aimspro: Agreed, it isn't understood yet. Butt his is hardly unique to Aimspro- the mechanism of action of antidepressants is not understood, for instance.

I'm all for remaining skeptical. But I have a different perspective: Given the chance, I would take Aimspro in a second.

True. But to date they have made no money off of it. And obviously, they are good businessman, I can't believe that the money they would make off of this "specials" license would be a drop in the bucket compared to full-on approval and having the NHS and other governments such as the U.S. pick it up. (In the U.S., we supposedly have private healthcare, but the government still ends up paying a large proportion of the medical bills, epecially for those who are disabled).

As far as the mechanism of action of Aimspro: Agreed, it isn't understood yet. Butt his is hardly unique to Aimspro- the mechanism of action of antidepressants is not understood, for instance.

I'm all for remaining skeptical. But I have a different perspective: Given the chance, I would take Aimspro in a second.