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