Discussion in 'Health News and Research unrelated to ME/CFS' started by Barry, Mar 18, 2018.
Two threads on the same topic and created at the same time have been merged
Just thought this might be of interest to some
Stem cell transplant 'game changer' for MS patients - http://www.bbc.co.uk/news/health-43435868
This is kind of confusing to me because Wikipedia and other sources say there is about a 40% treatment-related mortality rate in HSCT (aka Bone Marrow Transplant), yet that's not mentioned in these articles.
Perhaps that high mortality rate only applies to other diseases (many of them deadly cancers) where HSCT may be being used as a last ditch effort. MS patients may be "healthier" by comparison.
My aunt is sure she watched a tv programme where someone with ME had rhus ( she thinks it was in Newcastle)?
It is interesting to see that they are trying this again but it is not new. Alan Tyndall and colleagues are doing this in 1998 when I was working on ritux. The results look good for about four years then everyone goes back to square one. It looks as if this study has not reached that point. The risks are not as high as they used to be but they are severe. There is still a small mortality rate and the doses of cyclophosphamide usually used are enough to cause bladder cancer.
The treatment is the high dose immune ablation, not the transplant. I assume it is not that the transplants 'failed' but the ablation failed to give lasting benefit. It does not even say if this was autologous or from somebody else.
By 2005 everyone was agreed that this was not the way forward. Maybe they have added something else to the cocktail. I just wish they would tell us what the actual treatment was rather than this misleading reference to stem cells.
The following information are from the link in BurnA's post.
Not for all types of MS, though:
"They all had relapsing remitting MS"
"The treatment uses chemotherapy to destroy the faulty immune system.
Stem cells taken from the patient's blood and bone marrow are then re-infused."
So it was autologous.
Ha, here is a description of the study design:
It says something about the drugs they were using.
It also says, that the study will be finished in DECEMBER 2018...
As they use stem cells from patient's blood, as it is unaffected by MS.....I wonder does that exclude ME patients from something like this as we have something (s) not right in our blood as per Fluge & Mella and Dr. Davis. I suppose it's the usual...we don't know enough about the pathogenesis of ME to decide on any potential treatments...
This is a news article about a great stem cell focused blog I learned about. I highly recommend the blog as a great resource.
"Back in his lab after a week of vacation, Paul Knoepfler slogs through backlogged emails: A 71-year-old woman with arthritic knees would like to know whether a stem cell clinic she researched can give her relief. The parents of a 12-year-old with a degenerative eye disease wonder whether there's any hope of averting blindness with a stem cell injection. "Kindly apprise us of expenses and chance of success," they ask.
Knoepfler, though housed in the Shriners Hospitals for Children here, isn't a physician. And his University of California (UC), Davis, lab doesn't study arthritis or eye disease, nor does he have any experience developing a stem cell therapy. He mostly uses stem cells to study cancer-causing gene mutations. But thanks to The Niche, a blog he has run since 2010, Knoepfler has become an unlikely authority—and a dogged voice of caution—on the clinical use of stem cells.
The blog, which now averages more than 4000 daily visits, has elevated him from an obscure bench scientist to an international spokesperson on all things stem cell. "It's one of the major sources of information [for the] layperson, and also for stem cell researchers," says Jeanne Loring of Scripps Research Institute in San Diego, California, an occasional commenter and guest writer on the blog."
Today he posted on the Niche blog about the MS stem cell story being discussed in this thread..
From the Niche blog that @TrixieStix linked above:
Stem cells for MS. Media Grade B. From the BBC comes this article by Fergus Walsh, “Stem cell transplant ‘game changer’ for MS patients.” This sounds exciting. It’s a report on a presentation at a meeting rather than a journal article. There’s nothing wrong with that per se, but it just warrants some extra caution since the data haven’t gone through peer review, etc.
The media article includes some specific stats and those do sound encouraging as to stem cells for multiple sclerosis. It includes a number of upbeat quotes from scientists, a patient, and the MS Society UK. It also has this statement, which adds some balance, “Doctors stress it is not suitable for all MS patients and the process can be gruelling, involving chemotherapy and a few weeks in isolation in hospital.”
On the other hand, it has no links to other articles for context and some quotes seem potentially overly exuberant. It also does not mention that it appears that some patients have actually died during this or similar studies. On the whole, I see this as a mostly solid stem cell media piece from the BBC. Hopefully when the actual paper comes out after peer review we won’t think in hindsight that this media coverage was too much. Many MS patients could really use a new, effective therapeutic option." [paragraphs inserted for better readability]
MS patient goes to Mexico for stem cell transplant (she wasn't eligible for the UK trial). Not as a cure, but as a way to "freeze" the progression of the disease for up to 5 years.
Stem cell therapy in Panama which isn't life threatening. They use umbilical cord stem cells.
It doesn't appear to be a long term solution though.
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