thisisms
Posted: Sun Feb 12, 2006 10:20 am
Dear all,
'This is MS is an unbiased, unaffiliated site dedicated to eradicating Multiple Sclerosis. We offer an open-minded approach to *all* potentially viable treatments, ranging from the FDA-approved disease-modifying drugs such as Copaxone to alternative treatments such as Low Dose Naltrexone'.
The great strength of this site is that it is not associated with any ms drugs companies or any particular therapies. Anyone visiting the site can look into a range of therapies e.g. Campath, LDN etc etc.
A few of the 2000+ users of this site have reported good success with abx on the theory (not proven) that CPn might be the cause of MS or cause in some cases. I suspect that there are others who have tried the abx regime and seen little benefit, but those individuals tend not to report.
What concerns me now is that anyone joining the site is straightaway told to visit another website - CPn Help - by the few reporting good results on abx.
Thisisms is not a mouthpiece for any one regime (until that regime is shown to be the cure). The abx regimes has not been trialled and to date I have seen no evidence from those that have reported such good results that their neuros also agree with the reported dramatic results.
There is a real risk that some may take the abx route and not licenced therapies, which although not great in terms of efficacy have been properly trialled.
Let those joining this site find out for themselves about the different therapies available / in the pipeline rather than using this site as a way of re-directing individuals to a website covering just one regime.
I would love CPn to be the cause of MS and the abx regime to be the answer. But the reported good results of a few do not constitute scientific evidence yet the voice of these few is drowning out other possible therapies which may have benefits.
'This is MS is an unbiased, unaffiliated site dedicated to eradicating Multiple Sclerosis. We offer an open-minded approach to *all* potentially viable treatments, ranging from the FDA-approved disease-modifying drugs such as Copaxone to alternative treatments such as Low Dose Naltrexone'.
The great strength of this site is that it is not associated with any ms drugs companies or any particular therapies. Anyone visiting the site can look into a range of therapies e.g. Campath, LDN etc etc.
A few of the 2000+ users of this site have reported good success with abx on the theory (not proven) that CPn might be the cause of MS or cause in some cases. I suspect that there are others who have tried the abx regime and seen little benefit, but those individuals tend not to report.
What concerns me now is that anyone joining the site is straightaway told to visit another website - CPn Help - by the few reporting good results on abx.
Thisisms is not a mouthpiece for any one regime (until that regime is shown to be the cure). The abx regimes has not been trialled and to date I have seen no evidence from those that have reported such good results that their neuros also agree with the reported dramatic results.
There is a real risk that some may take the abx route and not licenced therapies, which although not great in terms of efficacy have been properly trialled.
Let those joining this site find out for themselves about the different therapies available / in the pipeline rather than using this site as a way of re-directing individuals to a website covering just one regime.
I would love CPn to be the cause of MS and the abx regime to be the answer. But the reported good results of a few do not constitute scientific evidence yet the voice of these few is drowning out other possible therapies which may have benefits.