This Is MS Multiple Sclerosis Community: Knowledge & Support

I noted an interesting point on the now locked SF1019 thread, from Robbie in reponse to what DP had to say about there being an Aimspro support group of 23. Robbie implied that there should be at least 200,000, presumably positively-treated persons, before a treatment could be taken seriously. This got me thinking.

Are there any published figures of the numerical success of the CRAB's? There are many people on the CRAB's although there's often a lot of criticism and reference is frequently made to the 30% success likelihood........but would there be, say an Avonex support group (or groups) totalling anywhere near 200,000 persons? Same thing with, say baclofen?......... Personally, I would doubt it.

Then there is the multitude of alternative and experimental treatments. I may be wrong, but I haven't seen more than a 'handful' of people who can confidently say that they have been positively assisted by BVT, antibiotics, SCT, LDN, Tovaxin or anything else you care to name.

Just to clarify, I am not trying to 'be negative' about this. Personally, I support the view that we should try any treatment that looks promising and won't kill you. I do wonder however, at the merit of attacking treatments just because they may not meet some unrealistic and artificial success test.

Phil.

Hi Phil,
I got the idea that comment was meant to, in some way, be humorous on robbie's part.

I share your outlook that if something isn't obviously dangerous and there is reason to believe it might help, it is a person's right to give it a try.

On the other hand it's understandable that with the headful of other considerations of what might or might not be helpful for ms and while remembering all the blatant scams along the way, it gets to be suspicious and frustrating when something has been around for a while and what seems to be a sizeable number of users are making claims to it's effectiveness, yet the developers and promoters don't make serious efforts to run it through the "respectible" channels.

I personally am not sure what to think of sf1019 and I guess there really isn't any reason to think of it one way or the other until the people responsible for promoting it show their confidence in its effectiveness by begging, borrowing and stealing to fund it through legitimate channels.

OR, they can just continue to make unjustified claims as they have to this point.
Bob

Hi Bob,

I personally didn't see Robbie's post as 'humour', within the context of other posts being made - after all, the thread was locked a few days later.

However you make the point that treatments need to 'be run through respectable channels' before gaining recognition. So where does this leave many of the alternatives listed in the Treatments section of this website? There are a swag of treatments shown. Do they all meet the 'respectable channels' test?

Bob, because you are a researcher yourself, you must have some idea in response to my inital question of 'how many?' persons need to benefit before a treatment is taken seriously or are you suggesting that it is not a matter of how many patients are positively treated but rather, who is endorsing a certain treatment?

And finally, if hypothetically, SF1019 or Aimspro were rigorously tested (in the US) and given the support of reputable professionals, would this sharpen your opinion?

Regards,
Phil.

I agree Phil. Maybe humor wasn't the correct term because it wasn't ha-ha humorous but maybe a touch of irony? Gosh, of course I have my personal opinion but I'm not the person to judge these things. My personal opinion is that the rules are the same for any treatments, alternative or not....I don't mean to badmouth alternative or natural treatments or hint that they shouldn't be viewed with interest, but the truth is that any claims made about them are unsubstantiated until they've gone through the proper channels......ANY treatment is unsubstantiated until it's gone through the proper channels.
I consider a lot of us on this site "researchers", but so there is no misunderstanding, I'm not in the medical profession. Well this is a situation in which my opinion varies from the medical establishment and it's also necessary to realize that there is a great need to....I shouldn't say rush but to expedite beneficial treatments...get them to the people who need them as soon as possible. I read a paper from 2001 last night in which the researcher...I think that paper was George Ebers, speculated that a 10 year clinical trial with a few patients in some ways might be considered more valuable than a 2 year clinical trial with hundreds or thousands. I don't know, who is to say at what point a treatment should be considered valid but I think the point in this situation is accurate documentation by a trusted source and that might be the biggest aspect that the alternative treatments are lacking. Absolutely. No question. It wouldn't even have to be US researchers to convince me, just a clinical trial under study conditions at a reputible institution. Keep in mind that I'm convinced that the loss of the parasites we evolved with is the primary reason we are seeing ALL of these immune disorders so I'm the last person who would think that anything is too "weird" to be beyond consideration and I'm the last person who would think that the "cure" for MS can only be created in some mad scientist's (sorry biodoc) test tube
Bob

Phil,



Other than the numbers of patients quoted during clinical trials, drug companies will publish (for their investors) the number of patient years that a particular drug has been used. They take a patient using a drug for a month, times 12 and that equals a patient year.

I can remember that the CEO of Biogen made the comment after Tysabri was pulled and inference was made to its use in combination with Avonex, that Avonex had more than 200,000 patient years of use behind it without one reported case of PML.

I have seen other drug use referred to in a similar manner so can only presume this is how they report it. Perhaps if anyone else has heard differently, they can advise us.

Harry