Ottawa doctors behind breakthrough multiple sclerosis study

[Taurus]

Any comments

[PointsNorth]

Taurus, could you post a link to the story?

Thx, PN

[DougL]

http://www.ms-uk.org/stemcells

MSUK posted this as well

[PointsNorth]

Thx Doug

PN

[cheerleader]

This story came out in Ottawa last April--
http://www.ottawacitizen.com/health/Ott ... story.html

News stories and anecdotal tales are one thing--but it's good to look at the published research on autologous haematopoietic stem cell transplantation for aggressive multiple sclerosis. Important to understand that this treatment in Ottawa didn't relieve cognitive fatigue, stopped relapses in some patients, and is only recommended for a subset of RRMS patients, not all.

As Dr. Burt, the creator of this protocol, has cautioned--this is a treatment for those with highly inflammatory disease in the RRMS phase. But if there is no inflammation present, it will not do any good.
http://www.ncbi.nlm.nih.gov/pubmed/22619224

Italian multi-center studies have followed patients for longer

Among the 18 cases with a follow-up longer than 7 years, eight (44%) remained stable or had a sustained improvement while 10 (56%), after an initial period of stabilization or improvement with median duration of 3.5 years, showed a slow disability progression.

http://www.ncbi.nlm.nih.gov/pubmed/22127896

Links to Ottawa study below:

Cognitive fatigue in individuals with multiple sclerosis undergoing immunoablative therapy and hematopoietic stem cell transplantation.
Twenty-three individuals with rapidly progressive MS and poor prognosis underwent high dose immunosuppression and subsequent HSCT. Individuals completed the 3″ and 2″ PASAT at baseline and every 6months thereafter over a period of 36months. As scoring methodology can impact its sensitivity to cognitve fatigue (CF), the PASAT was scored according to three scoring methods.
RESULTS:
CF was noted across all three scoring methods at baseline and at the majority of time points post-IA-HSCT on both the 3″ and 2″ PASAT. The magnitude of CF remained consistent both pre-and post-IA-HSCT.
CONCLUSIONS:
While results suggest that the procedure itself does not ameliorate an individual's susceptibility to CF; neither does it seem to negatively impact levels of CF. As such, results support the notion that the IA-HSCT procedure, despite its aggressive nature, does not exacerbate CF in this particular sample.

http://www.ncbi.nlm.nih.gov/pubmed/24189209

Diminished Th17 (not Th1) responses underlie multiple sclerosis disease abrogation after hematopoietic stem cell transplantation.

Clinical and brain magnetic resonance imaging measures of disease activity were monitored serially in patients participating in the Canadian MS HSCT Study. Reconstitution kinetics of immune-cell subsets were determined by flow cytometry, whereas thymic function was assessed using T-cell receptor excision circle analyses as well as flow cytometry measurements of CD31+ recent thymic emigrants (RTEs). Functional assays were performed to track central nervous system-autoreactive antigen-specific T-cell responses, and the relative capacity to generate Th1, Th17, or Th1/17 T-cell responses.
RESULTS:
Complete abrogation of new clinical relapses and new focal inflammatory brain lesions throughout the 2 years of immune monitoring following treatment was associated with sustained decrease in naive T cells, in spite of restoration of both thymic function and release of RTEs during reconstitution. 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.
INTERPRETATION:
Our results indicate that diminished Th17 and Th1/17 responses, rather than Th1 responses, are particularly relevant to the abrogation of new relapsing disease activity observed in this cohort of patients with aggressive MS following chemoablation and HSCT.

http://www.ncbi.nlm.nih.gov/pubmed/23463494

Hematopoietic stem cell therapy for multiple sclerosis: top 10 lessons learned.
Atkins HL, Freedman MS.
Source
Ottawa Hospital Research Institute, Ottawa, Canada. hatkins@ohri.ca
Abstract
Reports from more than 600 hematopoietic stem cell transplants (HSCT) have appeared in the medical literature for the last 1 and one-half decades. The patient's own stem cells are harvested and stored temporarily while high doses of chemotherapy and biologics are used to destroy the auto-destructive immune system. The immune system is regenerated from the infused autologous hematopoietic stem cells. Increasing clinical experience has refined patient selection criteria and management in the peri-transplant period leading to a reduction in treatment-related complications. HSCT, when used to treat patients with aggressive highly active multiple sclerosis, can reduce or eliminate ongoing clinical relapses, halt further progression, and reduce the burden of disability in some patients, in the absence of chronic treatment with disease-modifying agents. The top 10 lessons learned from the growing experience using HSCT for the treatment of multiple sclerosis are discussed.

http://www.ncbi.nlm.nih.gov/pubmed/23192675

[Shayk]

Taurus

Any comments

I've two comments:

1. I can't understand why someone would release the same press release in November that was first released in April. I wonder if the recent reported lawsuit has anything to do with it and if this second release of the same info is an attempt to influence the outcome of that suit.

2. Aggressive MS doesn't seem to be as prevalent as many people seem to think, so it's a relatively small cohort (as Cheer noted) for whom this treatment may be appropriate (if at all).

Characterising aggressive multiple sclerosis(full article is available for the curious)

AMS (aggressive multiple sclerosis) was identified in 4-14% of patients, depending on the definition used.

It will be curious to find out what definition of aggressive MS was used in the HSCT study.

There's also this article from the MS Discovery Forum: Resilience Despite Relapse which suggests to me that about 1/3rd of the people in the study could've fared ok without HSCT treatment.

In a long-term follow-up of 158 untreated patients who experienced more than three relapses in the first 2 years following diagnosis, only two-thirds converted to SP in a median of just 5 years. For unknown reasons, one-third of people seemed resilient to the numerous early setbacks (Scalfari et al., 2013).

But if the early flare-ups are not causally linked to SP, treating those exacerbations may not delay or prevent SP, at least for some people........Clinicians and scientists believed that relapses drove disability, she says. "Now, it seems more likely that this is not the case neurodegeneration ultimately puts someone in a wheelchair and alters their long-term outcome."

Overall, cumulative relapses had only a minimal impact on long-term disease progression. Their findings came from a retrospective review of nearly 2500 patients in British Columbia with a median follow-up of about 20 years (Tremlett et al., 2009).

Sharon

[Leonard]

Thanks Cheer, Sharon for your comments, true, all so true.

I can see a further reason: things are going very fast now, around the whole wide world. Doctors in the US and in Germany can stop the autoimmunity by tagging a protein to (T-; nano) cells and giving it back to the patient; medication for promoting remyelination will come soon; the understanding of the all important role of the gut in autoimmunity gains ground very fast and also what to do about it. These Ottawa doctors may be just afraid their work and the value it may represent are going to be lost in the noise.

[HarryZ]

Thanks Cheer, Sharon for your comments, true, all so true.

I can see a further reason: things are going very fast now, around the whole wide world. Doctors in the US and in Germany can stop the autoimmunity by tagging a protein to (T-; nano) cells and giving it back to the patient; medication for promoting remyelination will come soon; the understanding of the all important role of the gut in autoimmunity gains ground very fast and also what to do about it. These Ottawa doctors may be just afraid their work and the value it may represent are going to be lost in the noise.

Dr. Mark Freeman, a long time MS specialist who works in Ottawa, is the doc who started working with this process some time ago. He obviously has a lot invested in the procedure. And he is also the doc who publicly called Zamboni a "quack"...a comment that was looked upon poorly within the medical profession.

MS research around the world is very competitive and anything these guys can do to put their work into the news is very important to them....and sometimes regardless of who gets walked over in the process!!

Harry

[CureOrBust]

Will their work be lost in the noise, or is noise all that we hear.

[Leonard]

Will their work be lost in the noise, or is noise all that we hear.

probably both.
it is not very important.
they better hurry up and start to communicate openly and honestly with us because otherwise we - that is the patients - will have solved the problem before them...
unfortunately I can not get back the presentation of Natasha Campbell that she gave at the Gluten Summit (it was in the open but now you have to pay..). It was not about gluten, it was about autoimmunity and how it all starts in the gut, and how you can heal your gut and normalise your immune system. It was just wonderful!
whether it is lectins, Epsilon protoxin, or just mimicry, is not very important either. what counts is that you can reverse things and stop the immune attacks. by a healthy gut, that restores the normal gut permeability and calms down the immune system.

[HarryZ]

Will their work be lost in the noise, or is noise all that we hear.

You only need to look at the reporting of MS medications and discoveries in the last 20 years to realize it is one big noise!! The more "noise" you make, the more likely dollars will start rolling in.

Most won't remember or have seen how Biogen first introduced Tysabri, just before it got pulled. They ran a podcast in Philadelphia over the net, using a game show atmosphere with planted docs and a host who mimicked Bob Barker on the Price is Right. A carnival atmosphere promoting a drug that had virtually no safety data . Talk about hype!

And now we read almost weekly of new discoveries, trials and clinics offering a wide variety of treatments. And if the new "treatments" threaten the established medications, you will soon see quickly designed "trials" to prove a particular recent treatment/discovery doesn't work or is false.

And even the big pharma companies often have their hands slapped by the FDA for making false claims about their MS treatments....a practice that these companies know is wrong but are willing to pay the fines in order for them to get that extra percentage or two of the MS drug market.

Ye$, a lot of noi$e but with $o much money involved, it i$ $omething we learn to expect.

Harry

[pawel96]

Speaking of competition I think internet is a major one. Considering the amount of open source information how to manage MS (diets, detox, ldn, ccsvi, books of "survivors", forums like this, info about lowering inflammation) the mainstream guys better come up with something real good. Root cause would be ideal. I don't think paying thousands of $ if you can get for free something that works is wise.


P.