How long is long enough?

[ElliotB]

We all read about treatments for MS, from Steel Wool to CCVSI to high doses of certain vitamins, including but not limited to D3 and Biotin. But testing periods seem awfully short since MS symptoms can and do go into remission for the majority of those with MS for 5, 10, up to even 15 years (or more).

So it seems to me that more often than the evaluation periods being used are much to short to draw valid conclusions. Am I mistaken?

If the disease can go into remission for very long periods of time, how will the MS community ever know for sure that a therapy is actually working? My brother was diagnosed about 15 years ago and doesn't take a DMD, takes very limited vitamins and doesn't do much else special for his health, yet he is doing fantastic. An acquaintance of mine has had MS for over 10 years, doesn't take a DMD and told me she changed nothing in her diet or lifestyle. And except for getting a bit tired in the afternoon, is also doing great. I unfortunately like many others am not so lucky (but I am doing OK). Yet the majority of those with MS seem to do OK (probably well over 50%). So with anywhere from 50% to 70% or 80% doing reasonably well because the disease is in full or partial remission, I wonder when we see rates of efficacy around 80% or even 95% (as is claimed by Dr.Coimbra's Treatment with 95% Efficacy). whether we should put much validity into their results, especially over such a short trial period, when the majority of those with MS do well anyway?

I am hopeful that a genuine cure will be found, but how will we even know for sure? I am not questioning or doubting any of the protocols posted on TIMS and elsewhere, just wondering how we can really know if they really work?

[cheerleader]

You're absolutely right, Elliot, research in natural progression shows that the majority of pwMS do reasonably well without any special treatments.

In the most comprehensive study of how multiple sclerosis progresses ever conducted, Mayo Clinic researchers found that most patients did not progress to a disability in walking over a 10-year observation period.

Of the patients in the study who were minimally disabled when first examined in 1991, the majority 83%, could still walk without a cane at the end of a 10-year follow-up period.

http://www.webmd.com/multiple-sclerosis ... t-patients

I would suggest that the biomarker of gray matter atrophy could be used as an indication of disease progression.
It is the only biomarker which is tied to disability, (as opposed to white matter lesions.)
A reversal of gray matter atrophy (as my husband had) might be an indication of disease reversal and treatment success.
http://www.ncbi.nlm.nih.gov/pubmed/18570297
http://www.neurologyreviews.com/the-pub ... 332e1.html
cheer

[1eye]

Firstly, the denizens of this forum are not consulted, because of their flaky, unscientific writings, which I for one would not have any other way.

However, there should be a place to file suggestions for protocols, which has editorial review, if anyone in TiMS has one. I would be happy to see such a clearinghouse or read of it being created. Otherwise we are limited somewhat here. Plus, nobody I have direct knowledge of has the qualifications which would be widely accepted. I don't have any health care contacts which would help.

One I might suggest is Dr. Kirsty Duncan, Science Minister for the Canadian federal government, who has been listening to the MS community for a long time now already.

One word of warning, though: she is very serious about science, and will not brook foolishness. If you want to see her track record, the Canadian government records all its parliamentary pronouncements, speeches, votes, etcetera in the form of a living document called Hansard. http://www.parl.gc.ca/HouseChamberBusin ... Language=E

As to Progression, things are better here today than they were in the 1960s, although they not have changed as much in other countries. My friend who got MS in the late 1960s, and died in the early 1970s, might have fared better today. It still claims the life of one or more Canadians every day.

I agree the diagnosis, and tests for status and prognosis of MS should change, as should a lot of the benchmarks used in MS research, such as the EAE model. For instance I think we might now use the spinal fluid of potential MS patients to diagnose and measure status by injecting it into mice.

Having had it for up to 18 years, I don't have much in common with early MS patients any more, as the degree of those symptoms that remain is much worse.

My latest problem is only secondary to MS. I go under the knife soon to try to repair a collar bone I broke twice, in two separate falls, a year and a half apart. Other than that, my GP said I looked better than he's ever seen me.