SF1019

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby Brainteaser » Mon Mar 12, 2007 3:19 pm

No problem in 'sharing the facts' jon - I'm sure we'd all like to hear them. I asserted that you may be connected with Aimspro/Daval, yet you didn't take the opportunity to deny it !? My impression is that people on this board are a bit too sophisticated for all this 'cloak and dagger' stuff.
Phil.
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Postby jon » Tue Mar 13, 2007 5:09 am

Hi Phil,

I became involved in this through the request of a relalative who was looking for help in making sense of the various "treatments" out there. My background is in IT not Medical, but I agreed to help anyway. I have to say now that I wish I had declined the offer.

To make it perfectly clear, I have no connection to Aimspro/Daval nor any other pharmaceutical organization and from what I have seen, would never wish to have. However, having been involved with this for only a short time I can see how peoples suspicions are easily raised.

I am assured that the facts will be made public shortly and intend to leave it there. I hope some good will come out of this and wish all of you the very best.

Jon.
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Postby DP » Tue Mar 13, 2007 12:50 pm

I am DP (David) I do not have MS, I am a MS Carer to my wife who has SP MS. , first diagnosed 14 years ago. My own work covered statistical researching, non medical, but religious, came to an abrupt halt as my wife slowly went down hill.

Countless researching and numerous efforts with various treatments were made as we desperately searched for salvation.

My wife is an Aimspro patient and we belong to a group of fellow sufferers who are all Aimspro patients and act as a support group. To date there is more than 23 in our group.

Aimspro has given my wife her life and real hope as over these last months we began to enjoy greater freedom from the shackles of MS.

Our group thought that it would perhaps be an idea to share our experiences, all of which are very positive.

I was selected to address my thoughts and experiences as a MS Carer to This is MS, whilst others in our group do the same elsewhere with the intention of perhaps bringing others together acfross the many sites concerning MS.

I do hope that I cause no offence when I give my thoughts, God has shown our family the gentle paths to follow, therfore, I wish to cause no offence when I say I am a little disappointed to discover thread of negativity on this site.

I do not know what others think, myself and my fellow man only wish to discover what is best foe all those who suffer in this world.

My wife was fortunate to of been an informed consent person years ago when Aimspro was given freely to her, during that time it was as if a millstone had been lifted from her shoulders. I dearly love my wife as she does me, and we readily admit that we may be a little niave but when we read words like scam we wonder if this site is a forum for opposing people giving vent to their own interests instead of being a site sharing their own personal experiences with MS?

Thank you anyway DP
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Postby robbie » Tue Mar 13, 2007 1:13 pm

To date there is more than 23 in our group.

Add a couple hundred thousand to that number and you might be on to something..
Had ms for over 19 years now.
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Postby finn » Wed Mar 14, 2007 12:13 am

David,
it is nice that your wife is doing better, but I did find the following comment quite disturbing:

DP wrote:when we read words like scam we wonder if this site is a forum for opposing people giving vent to their own interests instead of being a site sharing their own personal experiences with MS?

If you referred to my post earlier in this thread, I really don't know what to say. As far as I remember, it wasn't hard to find out about the obvious connection between the inventor of the "original goat serum for AIDS" Gary Davis and David Shotton, the founder of Daval International. I really can't help it if it looked rather suspicious. But if you'd like, I could search some more to see if the information I found two years ago really is valid. Who knows what one could find if one would dig deeper. Just let me know, and I'll do it.

-finn
"The great tragedy of science - the slaying of a beautiful hypothesis by an ugly fact.” -Thomas Henry Huxley
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Postby DP » Sat Mar 17, 2007 3:25 am

Mr Finn
Thank you for your expression of concern for my wife, she is well and at least no longer going down hill, which is a blessing for us and our family.
We have tried LDN, Sativex, Avonex, Steroids, we follow the best bet diet, it helps.

Our observations were not pariculary directed towards any comments on this site, nor were they intended to be disturbing, we considered that 'thisisms' might of been a support mechanism for MS'rs similar to some of the personal MS web sites.

When we read words like scam and follow threads that seem to indicate difference between others in a manner that is, or appears to be directed at attacking one or several potential medications as opposed to an informed debate presented in a balanced manner one tends to feel that there maybe hidden agendas.
It appeared to us that some of the commentry was more directed at others in a personal / political / business manner rather than a sharing of experiences and mutual support manner.

I acknowledge that our own little group is small (only 23) but we work together for self support and by sharing our endevours and with the help of family, friends and the church we manage our lives better.

Many of our group are receiving Aimspro and all are doing very well, a few have benefited from LDN, all have benefited from changes to their life style, diet, excercise and the shared information we pass to each other as we tread this often weary path.

Personally it is of no interest to us or our group who invented what, time and effort could be dissipated delving into the murky waters of the pharmaceutical industry, whether it is a Mr G Davis, or Glaxo Smith Klein and so on.

The vast multi national pharmaceuticals have more money than banks yet health charities keep asking people for money to research for cures, perhaps the billions made by the pharmaceuticals should pay up?
Trials are held in third world countries by the big pharmaceuticals, it is cheap and hidden, people die from these trials, nobody but the church complains!

This SF1019, we tried to find out about that medication all we found was doors that opened then closed, it was in Mexico then it wasn't, it was on Mr A Osmonds web site with testimonials then they were taken of, he was going to make an announcement in London, then he didn't.
Some large investement company called Argyll was saying last year that it was a multi national with world wide assets, now it is selling shares for SF1019 or some such product, implications were it had been developed or tested or something in the UK at a hospital in Tooting London, yet the patent application and the share information implies differently and so on and so forth.

When one gets excited, which many people with disease do when it appears that there may be a cure on the horizon, deep interest is raised, of course.

For people like us it is very confusing and we feel that is how it is meant to be.

MS News web site touts a MS cure available in the Bahamas! People write books claiming to have cured themselves, the list is never ending.

Tysabri killed 5 people, Sativex killed one person, Interferon has never been approved for use in the UK by NICE, one could go on and on, all I know is my wife is improving using her medication Aimspro when she was not before, if she was not we would not be using it. Steroids made her ill, Sativex made her high and LDN did not work for her neither did Avonex, although some of our group LDN has helped.

For us if a medication is available in the major governing countries and has an approval from a recognised regulatory body, The MHRA, FDA, Canada Health Board etc it is worth looking at, whether it is a 'special' or available on an IND or SAP number and so on (these schemes are available for use in most countries) it has credibility and must be proven safe, if not effective, otherwise it would not be approved under these schemes.

Sharing and giving enhances the kindness of humankind, it is positive.
We found the Proventus web site to be as helpful as the web sites of the MS Society and the MSRC and other sites.

They have many members who receive Aimspro and they say it as it is, it is no wonder they are pro Aimspro! is it not?

Proventus seems to want to try to help people, at the very least they are volunteers and do not ask people for money! they are no more nor less than other health charities who push other medications. (and they receive donations from the pharmaceutical industry? A criticism directed at them by NICE some weeks ago).

The LDN site of Dr B Lawrence endorses LDN (he also supplies the medication at a cost).

The MS Society who pushed interferon years ago when it was a 'special' and do so today even though it is still not approved for use on the NHS by NICE.

Many experimental cancer drugs are used by the NHS as a last resort, who cares? We care whether a medication works or not, if it helps a perosn they should have it, especially if it saves their life, or extends it, after, as sufferers, that is what we all want, is it not?

Deep Regards DP
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Postby finn » Sat Mar 17, 2007 3:52 am

Mr DP,

I don't mind people using stuff like Aimspro or SF1019, and believing in them.

But I do mind if stuff like that is sold to desperate people by companies that haven't even bothered to try to prove the efficiency and long term safety of their product in a decent clinical trial. And I do find it amusing that the inventor of Aimspro/Caprivax has described his scientific thinking like this: "He saw himself in a dream injecting goats and concluded, as anyone would, that this was a revelation from God that goats can cure HIV."

Anyway, all the best to you.

-finn
"The great tragedy of science - the slaying of a beautiful hypothesis by an ugly fact.” -Thomas Henry Huxley
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Postby Loobie » Sat Mar 17, 2007 5:58 am

DP,

You want to hear my problem with all of this? Even in drugs that are not approved, like LDN, there is still some reputable medical expert at least TRYING to explain the mechanism of action. The Bahamas thing (Esparanza institute I think) and the Aimspro are like big fluff fests. I really don't mind reading testimonials from real people, but I pull back when there is not even one person trying to explain WHY it works. Beware of 100% testimonial backed cures. Has anyone ever heard of Royal Velvet?

With LDN it was Dr. Bihari. He at least had a scientific theory about the opiate receptors and endorphins and stuff (you can tell I'm not an expert), but at least there was some scientific theory being evaluated. He couldn't get a trial since it was an approved drug for heroin addicts at 50mg and was already in generics (so no $, thus no trial), but he saw something he wanted to try out.

So I would imagine if you went to see Dr. Bihari he could sit down and explain his concept to you scientifically so it was not a 100% leap of faith. He could say "here is WHY I think this may work", not just "trust me". Maybe that is why all the Aimspro people are always bible thumping to a degree; maybe it takes someone who is somewhat of a fundamentalist to sign up for a "miracle cure" and expect a group of people who are tired of the bullshit to buy into it. I'm not poking fun at religion, I am a Christian, just not a fundamentalist.

Can I say for sure that there is no validity? Hell no. However, would SOMEONE who is pushing this shit just give us at least a glimmer into the scientific theory behind this (if there is an explanation somewhere I'm probably coming across like an ass)? Because if you can't you will suffer the same smack down on this board as you obviously get everywhere else since you have such a 'large' following. If you can't tell, I'm getting pissed as I write this. If God could have straight up cured this, then he would have by now and there would be no need for this board. Faith is a wonderful thing that gets many people through all kinds of things and helps people experience humility. This, however, is starting to look like snake handling and I, for one, have read enough about this shit for a while. Don't bring a flower to a gun fight. In the words of Jerry MacQuire, "Show me the money".

I'm normally not like this, I'm more of a "to each his own" type of person, but giving people false hope who are so vulnerable borders on cruel. You know maybe changing diet and everything is really behind why you are all feeling better. That is what a scientific theory tests. They don't change everything at once. You can't be in a trial for Rebif if you are on Avonex and so on. Take care of yourselves and be well, but gives us something we can look chew on.

Lew
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Postby DP » Sun Mar 18, 2007 5:37 am

Good Morning

Finn and Lew
I have not entered this web site as a bible thumping person nor to be smacked around (verbally), my own belief is my business, our group is comprised of different races and religions, bound by the same interest, MS, either as a sufferer or carer.

The group is located in various parts of the world linked by technology - the majority in the UK two in The United States - 2 in Australia - 3 in Holland - 1 in Switzerland 2 in Canada. It is a diverse and open minded group without predjudice.

LDN is not denigrated by us, the point was made that several of our group had used LDN to no avail whilst others had received a perceived benefit.

Nor are we here to argue a case for Aimspro either, sharing experiences and spreading such information on a continuous basis can only help all sufferers to reach better understanding.

Dr Bahiri it is understood used LDN on approx 300 MS people in the US from a community of 500,000 MS people! Unfortunatley he is now retired, however, we await with interest the results of the LDN clinical trial for MS planned for 2007 in the US.

The majority of our group certainly benefit from Aimspro, and most of us, or our partners, have experienced various medication over many years, nor do we expect anybody to buy into anything.

Any clinician would say that to enable them to treat any disorder they need a mixed bag of medication, not just one.

I am not sure 'dreaming about goats' would be a sign from God. more a sign of oddness. Is this person the developing scientists involved with Aimspro?

Scientific trials are all very well if they are held independently and in a transparent manner, however although protocols are laid down by ethic commitee's and approval given by one of the various regulatory authorities, the basis of the trial is determined by the manufacturer, was not Glaxo Smith Kleine fined in the US by the courts, a sum running into millions of dollars, during 2004 / 5 for manipulating trial results?

Tysabri was taken of the market after completing phase three trials and has now been reintroduced but carries a warning of death.

Every medication produces side effects, some requiring other drugs to counter them.

Medications are often withdrawn from the market after time when they demonstrate a danger to the person.

How is a trial be called scientific and evidence provided by that trial for peer review when the number of persons involved usually represent a small percent of the sufferers the medication is intended for.

BG12 is intended to be trialed across Europe and the US in 2007 amongst 2000 MS sufferers, yet the approx number of sufferers of MS in the world is 3,000,000, a ratio of 1:1500 how is that scientific? To be more representative the ration would need to be 50:50 allowing for the placebo effect you may need something like 750,000 MS people to gain any real idea of a medications efficacy, as for safety taking an average time line of known drug recalls to be 3 to 4 years, (after all this is all statistics what else is there?) it may be reasonable to require a trial to prove safety to run for 5 years? (can't see that happening either!).

Aimspro begins trials 2007 and the same statistical problems may arise, where does one stop?

The LDN trial proposed in the US has $25,000 to fund it, how many sufferers can be trialed as opposed to how many MS people there are in the US, having such a small amount of funding? No single medication is a universal panacea, other issues have influences, we are all individuals.

The biggest problem with LDN is that there is no profit in it for the big pharmaceuticals, it is not in their interest to see any medication prove itself when it may endanger their own.

One expert is the sufferer themselves, we have a few MS people who do well without any medication, but not all, some do well on LDN others on Aimspro. none on Interferons.

You are all MS sufferers or carers, you all have hopes and dreams, what steps do you take for your MS? What medications have been tried and worked by yourselves? That may be more interesting.

We do not have a large following, the very nature of people prevents that happening, but by various positive groups working together, and not by following each other like sheep, such interaction may be more constructive!

Within the UK our group has contact with several other local groups of MS people around the country each of which average between 35 to 70 people.

These independent groups are far more active, more knowledgable, than any large health charity who really are no more than corporate business's these days.

Whether a medication has had a phase three trial or not for it to be available on a named patient basis it has had to of had approval from a government regulatory authority who do not give such sanction without scientific evidence produced to them and for the medication to have met the safety criterias required for manufacture and for it to be allowed to be introduced into the body, if Aimspro had not been given such approval by the MHRA we would not of tried it.

The same applies to LDN which was given approval by the FDA for use. Sativex by Canada Health and so, all of these medications and others are readily available through named patient schemes operated by nearly every country in the world.

Medications available in the Bahamas and Mexico are offered there not because of cost saving but because the regulations do not apply.

I will repeat myself we researched SF1019 but if you study the patent application and Argylls' share prospectus the product does not appear to exist compared to claims made prior to such documentation coming into the public domain.

One could spend a lifetime with counterarguments, getting pissed, denigrating religion etc or one can work together as sufferers for the greater good for them! that is if they are sufferers of course?

Regards to you all DP
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Postby JFH » Sun Mar 18, 2007 9:02 am

DP

I would like to say that I feel uncomfortable with anyone posting on behalf of an anonymous group (of however few). Such groups have ample opportunity to start their own web-site dont they? Arron what's your view on this?

I have heard, but couldnt quite believe it, that there exist people known as "spoilers" who get a buzz out of posting to respected internet groups just to cause confusion (often by making vague spiritual references or by inventing dubious statitistical calculations or by claiming personal knowledge that cant be refuted), causing uncertainty and doubt amongst already vunerable peolple! Others purposefully try to undermine the very good work done by sites such as ThisIsMS - it's not conspiracy theory just that there are some really sad people around :x
John
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Postby Arron » Mon Mar 19, 2007 3:19 am

Hi all. My view is as it always is: This is MS is a place for sharing all avenues of attacking MS. We have a common enemy, and a partnership to destroy it. Inflating hope on false premises is never a good thing, but our site started by covering LDN, and many could have accused us of allowing personal anecdotes to justify giving 'air time' to an unproven therapy. The idea is that we are all smart folks here united in our cause, and presented with some information, we each can make individual decisions as to validity and applicability by corroborating with what the science tell us (hence our obsession with PubMed!). Ultimately all decisions should be made with your doctor's consent, so achieving a scientific basis with which to argue your point is almost prerequisite.

That being said, if you're interested in DPs Caprivax experience, you may private message him. I think this thread has served its purpose and I'm going to close it.
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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