Here's the latest miracle cure HSCT story out of Sheffield Teaching Hospital in the UK, which was picked up on British television and the press. It's received a lot of coverage after the BBC aired a report:
For those who have had MS awhile now, these repeated stories on HSCT are heartening, but at the same time discouraging. Because HSCT is certainly not for everyone, and many can't even consider this treatment. It is good to know that some people are getting relief from MS and recovering their abilities. It's also very important to understand that these stories are anecdotal. They are heart warming, for sure, I'm not trying to be a downer. But there is a dark side to this "cure narrative" I'd like to explore: the premise that a "faulty immune system" in MS which needs to be ablated and completely removed is keeping us from understanding true disease progression.
The general public, press, and politicians get a false sense of progress when they read these news stories. They think, "well, at least we've got multiple sclerosis cured"....when nothing could be farther from the truth. And new and recently diagnosed MS patients, who have yet to have gone through a decade of these kinds of stories, may mistakenly believe this is a cure.
HSCT was developed for pediatric cancer, and has been a blessing for the children and their families who have seem mortality rates decrease and life expectancy increase. In this instance, carpet bombing the body and killing off cancer cells and then rebuilding the immune system with harvested and purified stem cells has saved lives. http://emedicine.medscape.com/article/989518-overview
In MS, HSCT use was first promoted by Dr. Richard Burt in the 1990s and has been used to treat thousands with MS. However, there have been no randomized, double-blind placebo controlled trials, so even after all this time, results are still not considered "gold standard." In fact, some of the results may be placebo. The stronger or more invasive the proposed treatment, the more powerful the placebo effect. https://www.psychologytoday.com/blog/sideways-view/201502/the-placebo-effect
Here are the facts:
1. HSCT is only appropriate for those with highly inflammatory relapsing remitting MS, who have not responded to other drug therapies, and who have new lesions and relapses within the past year. Trial participants cannot have had MS for longer than 10 years and cannot be too disabled. This is a very small and specific group of people with MS.
A systematic literature search identified a higher efficacy of aHSCT in younger, less disabled MS patients with inflammatory activity, similar to the findings from Hamburg.
2. HSCT uses chemotherapy to wipe out the existing immune system. Many researchers urge caution regarding this approach, because chemotherapy--on its own-- is known to have many deadly side effects, causing up to 5% mortality in some trials. Chemotherapy also causes demyelination and brain atrophy. I've written extensively on the long term neurological effects of chemotherapy here: http://ccsviinms.blogspot.com/2014/03/chemotherapy-causes-brain-atrophy.html
3. Long-term success rates show that MS disability is not halted. HSCT is not a cure. It may be a very helpful treatment for some with highly inflammatory MS, however the disease continues to progress in most patients. And autoreactive T cells to myelin targets return.
Our data parallel results from some of the clinical phase I/II studies showing continued clinical disease progression in multiple sclerosis patients with high expanded disability system scores despite autologous stem cell transplantation.http://www.ncbi.nlm.nih.gov/pubmed/17293360
Demyelinating and inflammatory activities of MS persisted after allo-HSCT in all of the patients with MS. Active and chronic active MS lesions exhibited significantly higher numbers of CD3+ T cells and CD8+ cytotoxic T cells and significantly higher scores of CD68+ microglia/macrophages than did chronic inactive lesions or normal-appearing white matter.http://www.ncbi.nlm.nih.gov/pubmed/20558390
A major pathological complication of auto-HSCT may be the effects reported on brain volume. Rapid loss of brain volume has been measured a few months after treatment . Auto-HSCT has seemingly detrimental effects on the integrity of the brain tissue that leads to rapid loss of about 1.92 % of brain volume. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4715306/
PICTURE CREDIT: TOM SCOTT---Journalism Warning Labels