There is a new paper from the neurological division of UBC on the natural improvements that occur in pwMS who are NOT treated with disease modifying drugs.
link to paper
I've seen a bit of confusion online, in people thinking this paper is a means of criticizing CCSVI research and implying that improvements in MS symptoms and EDSS after venoplasty are not valid. But that's not true. It is a criticism of the current means of evaluating the success of any therapy----especially drug therapy, since this is what is currently available in clinical trials.
Here is what the study showed, from a 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 diease progression.)
link
Here is an earlier paper (2010) from this same group on new perspectives in the natural history of MS--you will see they focus on drug treatment.
link
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 out 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 with. 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.
So, please see this paper as a positive statement from UBC. And if you are a patient there, ask to have your gray matter measured. We need to understand the true aetiology of MS. And 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!
Joan
