HSCT-- Facts behind the Headlines

Whenever there is a news story on autologous hematopoietic stem cell transplants (HSCT), I hear about it.  Perhaps this also happens to you, MS patients and caregivers?  Well-meaning friends, family, and acquaintances forward you links to glowing miracle cure stories.  And I reply with sincere thanks--and also inform them that Jeff's doing really well, with no MS disability, inflammation, new lesions or disease progression, now 9 years past his diagnosis with MS.  So, HSCT is really not for him.  Believe me--I know how fortunate we are to be able to report that!

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:
http://www.bbc.com/news/health-35065905


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.
http://www.ncbi.nlm.nih.gov/pubmed/25956824

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

Re-emergence as well as in vivo expansion of autoreactive T cells to multiple myelin targets was evident in all patients studied. The reconstituted myelin-specific T cells exhibited the same Th1 and Th2 responses as preablation myelin-reactive T cells. In contrast, the post-therapy T-cell repertoire exhibited a significantly diminished capacity for Th17 responses.http://www.ncbi.nlm.nih.gov/pubmed/23463494

And now, the big question.  Why do autoreactive T cells return even after they've been blasted to kingdom come and replaced with a new immune system?  Why does MS continue to progress?

Could it be that the underlying cause of the activation of these t cells is not a faulty immune system---but rather a continuing process of neurodegeneration?

The kind of neurodegenerative process we see happening in the gray matter structures of the MS brain?  The type of neurodegeneration that shows continued atrophy of the thalamus in all people with MS---from CIS to PPMS?  http://ccsviinms.blogspot.com/2016/01/thalamic-atrophy-and-ms-progression.html

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 [50]. 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/

There is a huge difference between finding MS treatments which give patients relief from their symptoms and reduction in disability for a year or two-----and understanding the underlying disease mechanism which allows for continued MS progression.  Temporarily tamping down inflammation is not the same as halting MS disease progression.  

Keep getting the correct info out there.  Push for researchers and policy makers to examine the underlying cause of MS disease progression.  

That's the only way forward,

Joan

This is about the use of bone marrow stem cells to to replace the immune system and is the most extreme form of "induction therapy" aimed at rebooting the immune system. This study has been reported by us and it is clear that the majority of people are not leaping out of their wheel chairs. This is just the type of poor reporting that the media specialise in ...media hype

http://multiple-sclerosis-research.blogspot.com/2015/03/miracle-stem-cells.html

PICTURE CREDIT:  TOM SCOTT---Journalism Warning Labels

The Cure Mentality

Disease organizations have walks, bike rides and a variety of fund raisers to encourage donations to "Find the Cure!"   While these organizations have been spectacularly successful at raising money and in some instances, improving survivability of disease, they have not found cures.  And this fact brings us to the larger question---

Can we actually cure MS?

Cures exist.  But only for some, not all, of human disease.  We love to say, "There's no cure for the common cold!" and we all know there's no cure for dying.   We also know there isn't a cure for cardiovascular disease and stroke---there's only prevention, angioplasty and rehabilitation.  Still, we expect science to figure it out.  We think that researchers will create one pill, one solution, one therapy, one cure. 

I would like to propose that this focus on the cure for MS is keeping us from actual healing.  

How and when did our "cure mentality" begin?    I believe it was during the 1930s and 40s, when penicillin and the vaccine to prevent polio were introduced to the general public.   This was the era when all the big disease organizations were founded, to make sure these promising new scientific explorations continued. 

I researched this period for an essay on the founding neurologist of the MS Society,  Dr. Tracy Putnam.  He was the researcher who showed the vascular connection to MS in an experiment where he occluded the venous sinus of dogs, and created MS lesions and disability.   Yet his vascular theory of MS was tossed aside for "new" science and the autoimmune theory of MS, based on research by a co-creator of the polio vaccine, Dr. Thomas Rivers.  

Why did this happen?  Why didn't researchers follow up on Dr. Putnam's findings?   Because the vascular theory of MS did not produce an immediate "cure."  Patients and advocates expected nothing less. 

Dr. Putnam used newly developed blood thinners to treat MS, and the disease still progressed in some.  Patients and advocates grew weary and looked for new answers.  They turned to the young and successful pioneering scientist, Dr. Rivers.  He created the EAE mouse model of MS, which is still used 70 years later--even though, ironically, it has not produced a cure.  Instead, EAE has been used to create a 20 billion dollar a year industry for pharmaceutical treatments for MS.
link

What if Dr. Putnam was right?  What if MS is a cerebrovascular disease that can be treated, modified and possibly prevented?

Sadly, CCSVI treatment was touted as a potential cure by the press and many patients,  even though Dr. Zamboni and all the pioneers had never claimed this.  We knew it was a treatment and only part of a whole new vascularly healthy lifestyle.  Jeff and I were so discouraged when the New York Times chose to portray us as cure-seekers, and completely misrepresented the research.  
link

Today, we have a similar furor growing over stem cell treatment.  Although stem cell treatments that require immune ablation and chemotherapy have proven harmful, and have not stopped disease progression or brain atrophy in progressive patients.
link


Why do we still look to immunologists and MS specialists for the cure?

We now know that MS is not a genetic disease.  There is not one gene that causes MS. Scientists have located the MHC gene and other loci that raise the potential to develop MS-- but only 4% of people with MS have MHC, with over 200 risk loci identified.  Not exactly a smoking gun. link

And we know MS is not purely autoimmune, like the EAE model used in mice, or we would have a cure by now.  Because copaxone and other drugs have been touted as reversing EAE in mice, but not humans.  link

We do know that MS is affected by environmental factors.  
Proven, scientific links to MS susceptability and progression have been found in low vitamin D levels, low sun/UV exposure, eating processed foods and transfats, cigarette smoking, obesity, stress, lack of exercise and movement, lack of sleep,  and hypoperfusion or slowed blood flow in the brain.

As these Australian researchers have published---prevention may be the best path to healing and disease prevention for MS.
In the face of imperfect and non-curative treatments, understanding the role and mechanisms of action of environmental exposures is highly important as these are potentially preventable.  link

There are things to be done to improve our health.
Could we consider our goal to be prevention, disease cessation and healing, instead of a cure?

What if we took all that energy, money and time we voluntarily give to the disease groups that have continually promised us a cure and reinvested it back into our own lives and our community?

How about using that money to start buying more organic fruits and veggies--and skipping the MS Society hamburger and milkshake fundraiser?   (yes, sadly, this is a real fundraiser.)  link

What if we use our few good hours of daily energy to get physical therapy, take a walk, go to the gym and keep moving our whole bodies?  link

Toss out the cigarettes, and chew on carrot sticks?
link

What if we went outside for 15 minutes, and soaked up some of those nitric oxide releasing UV rays and raised our vitamin D levels naturally?
link

How about meditation instead of frustration?   Deep breathing and deep sleep?
link

Could we heal?  Could we change our disease course?  Science gives us a resounding "yes!!"   As do many medical researchers including Dr. Terry Wahls, Dr. Ashton Embry, Dr. George Jelinek and the late Dr. Roy Swank.

Jeff would tell you these lifestyle changes work.  And his MRI proves he is healing.  His gray matter now looks normal on MRI.  He is not cured--he still has some damage from his first bad flare and neuropathic pain, he still has damage due to "MS".  But it is not getting worse.  His MS is not progressing.  His brain and spine are healing, using venoplasty for CCSVI and the Endothelial Health Program.  link

When we simply sit and wait for a cure and don't change the things we know we can change, we abdicate our power.  We give away our own innate ability for healing.

Wishing everyone who reads this blog hope and true healing,
Please stay in touch with me, and let me know what is helping you to heal.
It's not about blame for the past, it's about real hope for the future.  
We're all in this together--and I remain a cheerleader,

Joan

You can change your cells

June 1, 2012 at 8:10am

Just like stem cell science, we're going to be hearing a lot about epigenetics.  Epigenetics is the study of changes in gene expression. "Epi" simply means outside of or above.

These patterns of gene expression are governed by the cellular material — the epigenome — that sits on top of the genome, just outside it. It is these epigenetic "marks" that tell your genes  to speak loudly or whisper. It is through epigenetic marks that environmental factors like diet, stress and prenatal nutrition can make an imprint on genes that is passed from one generation to the next.

This new avenue of research looks at how environment changes our genes, by switching them on or off--this includes what we eat and drink, what we come in contact with, and how we move and handle stress.  How we live our lives can create and change our genes.

lhttp://content.time.com/time/magazine/article/0,9171,1952313,00.html

We used to believe that there was no outside influence that could effect our genes.  What you were born with was what you had for the rest of your life.  And this is true in many instances.  Your baby blue eyes are thanks to Grandma. But Grandpa's diabetes or heart disease aren't your destiny.

This is why identical twins can have different diseases.  We see this in cancer, heart disease and MS.

http://www.youtube.com/watch?v=AV8FM_d1Leo

Recent research has shown that, just like cardiovascular disease,  there is not one specific gene related to multiple sclerosis.  The closest researchers have come is to isolate the HLA locus and the MHC gene.  But only 4% of pwMS have this gene. This has lead some researchers to posit that MS may be an epigenetic disease-

http://www.medical-hypotheses.com/article/S0306-9877(08)00339-3/abstract

http://www.ncbi.nlm.nih.gov/pubmed/18930111

For an excellent article, published just last month on epigenetics and MS--

http://www.msdiscovery.org/news/news_synthesis/1644-nature-nurture-and-what’s-between

There's something you can do to change your own cells.  Today.  Honest.