The Incurable Gonz Blinko: Acupuncture and Retinitis Pigmentosa: Don't Get Stuck

By Chris Hofstader

Last week, I introduced 21st Floor readers this column and said that it will be filled with articles about alt-med claims of cures for the otherwise incurable. I illustrated the column last week with the true story of a fictitious couple. Since, I’ve continued research into false claims of cures for retinitis pigmentosa, the disease that caused my blindness.

Today, I will describe a few web sites from the huge population that describe acupuncture based cures for RP. As my research for this column continues, I will take on various asks to improve the information I will write about here. Meanwhile, I will try to focus on different sorts of things as I encounter them.

Acupuncture as a cure for retinitis pigmentosa is near and dear to my heart. I spent a huge amount of money on treatments that did absolutely no good. The acupuncturists I tried, though, all told me that they could cure me and, with the hope of youth, I impetuously chose a treatment program that would cost a lot in both dollars and emotion and do no good at all.

This morning, when I googled “retinitis pigmentosa acupuncture cure” it returned saying that it had found “About 2.4 million” results,” a remarkably large number for a relatively obscure disease that has no known remedy. These sites are located all over the world but their claims seem remarkably similar to each other. I will be writing to a lot of these vendors directly asking for real patient results and will try to publish such in future articles.

The top hit in my Google search was an article called, “Acupuncture Treats Retinitis Pigmentosa – New Research,” that cites articles from what I consider to be dubious sources like The “Journal of Clinical Acupuncture and Moxibustion” and the, “The Chinese Journal of Integrated Traditional and Western Medicine.”

[Author’s note: I will comment on issues regarding the efficacy of remedies described by alt-med proponents. I am not in any way a health care professional but I will be basing my opinions on things I have read by experts from mainstream medicine and alt-med criticism.]

Interestingly, this article says that the acupuncture cures RP by, “protecting the optic nerve from damage caused by intraocular pressure.” Such pressure is a problem for people with glaucoma but, in years of reading about RP and other retinal disorders, I’ve never heard it mentioned as contributing in anyway, good or bad, to the degeneration of a retina. RP is the gradual degeneration of the cells in one’s retina – intraocular pressure has no effect on this degeneration or, I would assume, that conventional ophthalmologists would prescribe medication to reduce the pressure as they would for a glaucoma patient.

A web site describing itself simply as, “The Acupuncture Center,” says,

“Macular Degeneration and Retinitis Pigmentosa are now being treated with acupuncture and the Microstim 100i. The new technology allows patients to treat themselves in their own homes.” Then the site explains that acupuncture is part of a total regime of Chinese medicine that includes herbs and other questionable approaches to disease.”

If you haven’t guessed, the Microstim 100i is indeed a product that this web site sells. It claims that some form of “micro-current” can provide remediation for people with retinitis pigmantosa or macula degeneration.

Acupuncture Center says on its web site,

“The micro current generator that we use at our office involves a very precise, low-current electrical stimulus that can be used to treat specific points on the body. The micro-amperage is adjustable between 20 microamps to 800 microamps. A microamp is one millionth of an ampere. The advantage clinically of being able to use microamp devices is that this corresponds more closely to the human nervous system than stronger currents used in other devices.”

This is a case where “less is better.” When I drilled down a bit further, I found the following,

“There has been some unpublished research and clinical studies done on the use of micro current stimulation for the eye. It may be a few years before they are published and ophthalmologists would not be familiar with this research.”

I will assume that this means that I won’t find anything “real” about this procedure until they get something published in a real peer reviewed journal as I don’t expect it will
ever demonstrate efficacy, I won’t be holding my breath.

A site titled, “Treating Retinitis Pigmentosa with Traditional Chinese Medicine,” the site of the Wellspring Clinic for Holistic Medicine states about RP, “There is no effective treatment for this condition.” and I thought I had found an honest practitioner. Unfortunately, the site continues, by saying that the following list of potential treatments have been tried, “with limited success,and lists a pile of what sound like a king woo taking attendance of all potential quackery.

The site, after stating the above, which suggests that there is no cure the says,

“Although the effectiveness of Traditional Chinese Medicine remains to be established in further, better designed, clinical trials, it is safe to say that TCM is a valuable treatment option to be explored or tried by RP patients and medical researchers.”

Maybe I’m stupid but I don’t understand how anyone could read the top of the web site and still decide to go to Vancouver to visit this treatment center.

The site continues by telling us that they have treated a total of 118 RP patients and observed, “Night vision improvement: one patient couldn’t see and walk at night before treatment,” then it describes the outcome,. After 11 months treatment, she could walk at night in her house without turning on the lights.” I don’t know whether I should laugh at this statement or not. I don’t know of any blink who can’t find her way around her own home no matter how bad her vision may be. But, this is the sort of patronizing nonsense that we blind people deal with daily.

On many sites offering miracle cures for various diseases, including RP, there are a terrific amounts of accessibility problems. If you are trying to sell something to blind people, I suggest you make your web site in a manner that they can read.

So, my research into the woo that pretends to cure major disabilities continues. In my next article , I will start discussing stem cell treatments for RP and other diseases that lead to blindness. This is the one area where real progress seems to be happening but it is also the language used in some of the most egregious scams aimed at people with disabilities.

I will be publishing more information that I’ve gathered on this subject in my own web site: http://www.hofstader.com.

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5 Responses to The Incurable Gonz Blinko: Acupuncture and Retinitis Pigmentosa: Don't Get Stuck

  1. Anna says:

    yikes. I’m an acupuncture student and I’m researching RP. From everything I’ve read in our literature, and what I’ve been taught, acupuncture can at most, slow down the progression of the disease, but that’s it. You are my second online stop, everything else has been in print. The internet can be a pretty sketchy place for legitimate information. but I’m disappointed to hear that acupuncturists actually told you they could “cure” it. It’s not the first time I’ve heard stories about my future colleagues being irresponsible in giving information. It is frustrating, but probably not even close to as much as it must be for you. I’m sorry it happened.

  2. Amanda says:

    Have you heard of anyone who has gone to see Dr. Per Otte in West Virgina for microacupuncture treatments to help slow the progression of RP? I heard he is amazing and the only one in the country with this sort of practice…different from other acupuncture centers?

  3. ann says:

    my sister sees Dr. Andy in Westfield NJ. He has restored vision in one of her eyes to 20/20…this is not his diagnosis but that of her opthamologist that she went to see after a week of treatment with Dr.Andy. Micro Ac works and she is proof. She can read the lowest line on the eye chart now.

  4. Gonz Blinko says:

    Thanks to those of you who have taken the time to write some comments on this article. All of us at 21st Floor appreciate readers who take the effort to tell us what they think, even if those statements do not agree with our own.

    I can state unequivocally that no one would be happier than me if the claims of efficacy of acupuncture treatments for retinitis pigmentosa turn out to be true. Unfortunately, I haven’t seen a single study published anywhere in the scientific literature that suggest that these remedies have any value beyond that of a placebo.

    Amanda asked if I had heard anything about a MicroAcupuncture clinic run by a Dr. Perotte in West Virginia. I googled to find the clinic and the only thing that turned up regarding retinitis pigmentosa was a single testimonial from a patient that runs on a number of different pages all promoting the clinic that performs the treatments. Searching further on retinitis pigmentosa and MicroAcupuncture did turn up at least one page that showed positive results (not in a way that would be accepted by a real scientific publication) in slowing the progress of RP – unfortunately, the patients in this study were also given vitamin A which has very definitely been showed in a controlled scientific manner to slow the progress of the disease (I wrote about this in my article on Supplements and RP here at 21st Floor). Consequently, the research on MicroAcupuncture is tainted by giving the patients the vitamin A as they cannot show how or if micro acupuncture does anything beyond the vitamin A alone. If a study isn’t controlled to avoid outside influences on the data, it is invalid.

    Ann wrote that her sister saw a acupuncturist in Westfield, NJ (coincidentally, the town in which I spent most of my first 18 years) and had her vision resorted to “20/20” and the result was confirmed by ophthalmologist. I would love to learn more about this case but, for now, without any supporting documentation, I must put it into the category of personal anecdote and cannot even comment on the case as I’ve no real data with which to work. I can say, though, that 20/20 vision is not uncommon among people with retinitis pigmentosa – RP attacks the retina in a way that causes the field of vision to shrink, creating problems with tunnel and low light vision but not damaging the individual’s ability to focus or see small things until the disease has progressed to a point in which the patient is profoundly blind. I would be interested in information about Amanda’s sister’s visual fields before and after receiving acupuncture treatments.

    From my personal experience, when I was getting acupuncture for my RP, I believed that my vision was indeed improving. When I went to have my visual fields tested, though, there was no actual improvement and the degenerative process hadn’t slowed. Of course, I’m a sample size of one and not statistically significant but acupuncturists were more than willing to take my payments to treat something they had no expertise in.

    So, please keep commenting and I’ll try to do my best to respond in kind. Please do try to include pointers to research that supports your position, though, as I will try to find items discussing your topic but may not be able to find exactly what you are writing about.

  5. There is no “cure” for RP, so lets be clear about that. Rather, we use acupuncture as a management strategy as an attempt to recover some lost vision and slow and/or arrest progressive vision loss associated with RP. The objective is long-term stabilization and vision peservation.

    I have treated hundreds of cases of RP and unfortunately not everyone get great results and other do not respond at all. The majority do respond very well, including young children, teenagers, and young adults. Kid are not really invested in the outcome and haven’t even learned to be upset about their condition. This makes for a difficult argument for placebo. When results are measurable, it fals into the realm of science. And yes, we do need research not only to support our findings and appease the medical community, but to impove upon our treatment strategies.

    In clinic, we do field vision testing before and after treatment to confirm measurable results. If a patient has a clear response then we continue, if not they are a non-responder and we discontinue treatment.

    Also, we are currently doing a research project with Johns Hopkins University on the treatment of RP with Acupuncture. “Scientific Research” is on its way.

    I’ve had many eye doctors from Wilmer (and other major eye clinics) contact me curiously, to discuss the fact that they have seen improvement with their RP (and other) patients. As a result more and more eye doctors are now sending RP patients for acupuncture – as they should. This is a big step because for many, acupuncture is the only thing that seems to be working. Results are usually seen within the first few days of treatment.

    I am truly sorry that you did not get good results with acupuncture, I wish that everyone would. Each case is different and it just doesn’t work for everyone.

    Research indicates that certain acupuncture points may increase ocular blood flow which may increase the delivery of oxygen, vital nutrients, and enhance cellular detoxification.

    http://www.ispub.com/journal/the-internet-journal-of-ophthalmology-and-visual-science/volume-1-number-1/transorbital-doppler-assessment-of-blood-flow-velocity-during-stimulation-of-acupoints-yuyao-and-zanzhu-1.html

    We have also seen that specific acupuncture points can cause global excitation of the retinal cells and optic nerve based on visual field perimetry. I would love to be able to measure this some day on a functional MRI if the opportunity presents. I always welcome the opportunity to participate in research investigation on RP or other eye conditions. It would be great to see the US to catch up to China and many other countries that have Integrative Ophthalmology Hospitals and clinics. Integrative Ophthamology is most likely the future and offers the best possible care.

    Please consider that there are many stuck in a hopeless and desperate situation who are loosing their vision fast. Conventional medicine has nothting to offer right now. Stem Cell treatment & Gene therapy are a long way from proving clinical efficaly, and have great risks. Clincal trials abroad so far have failed.

    If these specific forms of acupuncture can help individuals then why discurage people from at least trying it? One of the best things about acupuncture is that there is virtually no risk. Worst case scenario is that it just doesn’t work. Maybe some disappointment, but no harm done. Most conventional drugs and surgeries come with significant health risks and side effects.

    There is no reason NOT to consider acupuncture if you have RP. “Gettin stuck” is better than doing nothing at all. Just make sure that the person doing the treatment has experience and is measuring your progress and honest.

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