Welcome! This blog contains research & information on lifestyle, nutrition and health for those with MS, as well as continuing information on the understanding of CCSVI and cerebral hypoperfusion. This blog is informative only--all medical decisions should be discussed with your own physicians.The posts are searchable---simply type in your topic of interest in the search box at the top left.Almost all of MS research is initiated and funded by pharmaceutical companies. This maintains the EAE mouse model and the immune paradigm of MS, and continues the 20 billion dollar a year MS treatment industry. But as we learn more about slowed blood flow, gray matter atrophy, and environmental links to MS progression and disability--all things the current drugs do not address--we're discovering more about how to help those with MS.To learn how this journey began, read my first post from August, 2009. Be well! Joan
Saturday, June 30, 2012
UBC research on natural course of MS
June 30, 2012 at 10:34am
There is a new paper from the neurological division of UBC on the natural improvements and disease course that occur in pwMS who are NOT treated with disease modifying drugs. This data uses measurements from patients' birth, rather than MS onset. Researchers call these patients who never received disease modifying drugs "treatment naive"--and there are not many of these folks around to study anymore, so this paper is very important.
Here is what the study showed, from a recent presentation by lead investigator Professor Helen Tremlett:
The natural history of MS and implications for clinical practice
Professor Helen Tremlett, University of British Columbia Hospital, Vancouver, opened the conference with an overview of long-term natural history studies of MS in British Columbia. Data from this large cohort suggested progression of MS is slower than previously thought, which has implications for designing clinical trials and determining the long-term effectiveness of disease modifying therapies (DMTs).
Data demonstrated that by measuring time to outcomes from birth rather than from onset of MS men and women have similar disease outcomes (time to reach EDSS 6); an older age at onset is favourable; relapses do not affect long-term disability outcomes and early relapses only impact progression over the short-term. Whilst young patients with MS may gain long-term benefit from treatment with DMTs, older people may find limited benefit. Interestingly, MS relapse rates naturally decrease over time and a five year relapse-free period was common (occurring in 77% of people with relapsing remitting MS) independent of drug therapy.
Please note, this is all new info, and goes against common and current thought about MS disease progression--
Men and women have similar disease outcomes.
Older age at onset is favorable
Relapses do not affect long term diability
It's common to go 5 years without a relapse.
Relapse rates decrease over time, and older people will find limited benefit in DMTs.
Here is an earlier paper (2010) from this same UBC group on new perspectives in the natural history of MS.
Multiple sclerosis (MS) has entered an era of immunomodulatory drug treatment, the impact of which on long-term disease progression remains controversial. The increasing use of these therapies has intensified our need to understand the true natural history of MS. The MS community is poised to establish whether the immunomodulatory drugs exhibit long-term benefits, with a suitable untreated natural history cohort likely the most practical and ethical comparator group
Wide variation in the MS disease trajectory is evident within and between natural history studies, reflecting both methodologic considerations related to data collection and heterogeneity of disease activity. Recent publications have indicated that a younger age at disease onset is no longer indicative of a favorable outcome and further evidence supports the dissociation between relapses and long-term disability, although windows of opportunity may exist for some patients. We are now perhaps faced with our last chance to examine the true natural history of MS, so whether the reader is a practicing physician, health care provider, or researcher, or engaged in the pharmaceutical industry or in clinical trial design, recent advances in our understanding of the natural history of MS are of key significance.
Professor Tremlett and the UBC group of researchers are calling for a re-evaluation of how we look at MS, because there are not many patients available any more who have a natural progression of this disease, without any treatment interventions. Someday soon, we will no longer have "treatment free" patients to compare.
The current EAE model and relief from relapses with MS drugs simply does not hold up when we look at the natural progression of MS. If relapses are not MS, and EDSS is not MS, and symptoms are not MS....what is? Clinical trials need a reliable and true biomarker.
One biomarker that has been suggested in the last few years is measuring gray matter atrophy. As more and more research comes in, we are learning that it is neurodegeneration and loss of gray matter tissue that is most clearly linked to disability, progression, and disease course of MS. It begins the disease process and continues throughout.
AND THE MS DRUGS DO NOT stop disease progression, nor do they appear to deal with neurodegeneration or gray matter atrophy.
If MS is a disease of hypoperfusion caused by collateral circulation and CCSVI, and can be treated by returning venous return, we need to be able to measure this. A reversal of gray matter atrophy may be a biomarker researchers will accept someday in the not too distant future. That's what's happened for my husband, it can be measured on MRI. Maybe there will be others.
More research ahead!