Woman's blindness apparently reversed by stem cell treatment | Hacker News Reader

Woman's blindness apparently reversed by stem cell treatment

baltimoresun.com

94 pointspaulpauper22 comments

The comments on the corresponding Reddit thread suggest this shouldn't be trusted.

Relevant comments include: https://www.reddit.com/r/TrueReddit/comments/4kctsl/blind_wo...

> This is an advertisement puff piece about a "treatment" that nobody believes to work. There's not even a plausible mechanism as to how a retro bulbar injection of mesenchymal stem cells could regenerate axons. It is the ophthalmology equivalent to "one weird trick to lose belly fat".

https://www.reddit.com/r/TrueReddit/comments/4kctsl/blind_wo...

> Weiss is not following the usual steps of clinical studies. Among other things, he didn't test his treatment theories first on lab animals or using computer models, or randomize his trials by using either stem cells or placebos in study participants. He didn't test the procedure for safety on a small group before moving to a larger trial.

It seems to have worked for the girl in this case https://www.youtube.com/watch?v=AVYi4sdEKeQ

No one's claiming she's making it up as far as I can tell. I think it's a shame these kind of things aren't tried more.

You don't have to claim the girl is making it up for the result to be untrustworthy. There is a reason placebo controlled double blind trials are used in modern medicine. That amount of rigor is required to be certain that the observed effect wouldn't have just happened. People can get better because the human body is good at self-regulation. The placebo effect is also a real effect. The standard set for modern medicine is that the treatment must be better than the placebo effect.

In this case where she couldn't see for five years and then suddenly could after the stem cells it seems unlikely to be a placebo effect.

Unlikely, but you still have an N=1. This is a case study, not proof of efficacy. It was an unknown ocular pressure that caused the blindness and could very well be an unknown and unrelated reaction that caused the recovery. Just because one event happens after another event does not mean one event caused the other. Very interesting, and worth attention and further study, but not proof.

The fact no one is following the usual steps of clinical studies doesn't mean the treatment is guaranteed to be quackery. Not saying he's a legit doctor but that criticism is a separate problem.

But the parent comment never claimed that the treatment is guaranteed to be a quack, only that the claim shouldn't be trusted in it's current state. Extraordinary claims require extraordinary evidence. By not following proper procedures for the trial, that evidence isn't there.

Someone going from "blind" to "not that blind" is definitely something worth investigating.

There's a epistemology problem in modern science.

There was a reddit AMA a while back about some guy who was paralyzed and got stem cell treatments in China and can walk now[1]. In the thread nobody believed him, especially all the people chiming in with lots of credentials. The thread is really sad. The rule seems to be, if the U.S gatekeepers didn't approve it, it doesn't exist, no matter the empirical evidence.

Liz Parrish's gene therapy to increase her telomeres is another example of this. No matter how many labs measured her telomeres before and after, in some people's minds it's not science because it didn't go through the relevant gatekeepers.

[1]https://www.reddit.com/r/IAmA/comments/k1hts/i_am_a_28yr_old...

> The rule seems to be, if the U.S gatekeepers didn't approve it, it doesn't exist, no matter the empirical evidence.

This, as they say, they measure it by peer-review and empirical results. Which is fine if access to journals was easy enough for Chinese results to get everywhere.

And don't make any mistake, the NIH syndrome is hard in science. Any paper from outside of US/Canada,Australia/NZ and Western Europe is more likely to become a cup holder than anything else

This list includes a few nobel prize winners:

https://en.wikipedia.org/wiki/Self-experimentation_in_medici...

The fact that these folks driven to test on them selves is a fair indication of how bounded the box can be.

https://en.wikipedia.org/wiki/Werner_Forssmann

and

https://en.wikipedia.org/wiki/Barry_Marshall

Are two great examples of folks going way out of the box to prove a point, and seeing reward for it.

A separate thought: Patients searching for and trying traditional and non-traditional solutions. From the article: "...a doctor pointed her to https://clinicaltrials.gov/ , the National Institute of Health's clearinghouse of studies. There she found Dr. Jeffrey N. Weiss in Margate, Fla., who was enrolling blind patients in an unorthodox stem cell study."

This seems to have occurred after the patient pursued "...Chinese herbs and acupuncture...."

With so many anecdotes of patients seeking non-traditional approaches (note: for example, Steve Jobs), I'm heartened to see this patient connected to a traditional treatment which ultimately helped her (note: also, too, see Scott Adams). Caveat: I'm wording this inelegantly, and I think non-traditional methods can help, in some cases, for palliative care.

When you refer to Scott Adams, are you referring to his vocal cord/speaking problems?

Yes; in the sense of how he used technology to connect with the medical professionals who ultimately helped him. I think he used Google Alerts, or something similar.

Shouldn't the treatments you refer to be called "traditional" instead of "non-traditional"? Most of what we do in Western medicine is modern and not ancient.

Point taken : o )

I wrote with Western medicine in mind as "traditional", in the sense that it is standard practice, here in the United States. I can see how that's ambiguous.

The stem cells, in this case, were retrieved from the patients bone marrow.

Dr. Weiss claims, "...60 percent of his 278 patients with macular degeneration, glaucoma and other diseases have regained some sight."

"Dr. Alexis G. Malkin, who examined Belton before and after the procedure, still would hesitate to recommend it to other patients. While Belton's improvement has been dramatic, she said, she's still legally blind and sees only "islands" amid blind spots.... What was the mechanism? ... Had she done nothing, would she randomly have gotten better on her own? That seems exceptionally coincidental."

> The stem cells, in this case, were retrieved from the patients bone marrow.

One of two methods, other than cord blood.

What's It Like To Donate Stem Cells http://www.cancer.org/treatment/treatmentsandsideeffects/tre...

What's It Like to Get a Stem Cell Transplant http://www.cancer.org/treatment/treatmentsandsideeffects/tre...

The write-up on donation is a bit off. First, I don't think anyone is still harvesting marrow with needles. "Barbaric" and "dark ages" is how I've heard that described.

The section on peripheral stem cell harvest is how it's done. Stem cells are mobilized using Neupogen injections, although a better (more expensive) drug called Mozobil gets much better results. To collect the cells it's a daylong process like dialysis. The link says through a large vein through the arm but they like a big fat vein for their central line, so more likely a small surgical procedure to put one in the chest.

My dad has glaucoma and did the same surgery. Not much improvement after 1 year has passed. Another eye doctor says it might take another 4 years to see some difference...

Similar experience here. A friend of mine had glaucoma but also did some surgery to remove a calcium extract from the eye. It helped a little but the vision is still the same

non-embryonic

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