Topic: Sister-in-Law wants to try holistic treatment for her Retinitis Pigmentosa

[SGeek]

So, I don't spend much time on this forum, but I need some help soon.

My sister-in-law (25 yrs old with no "attachments") has decided that she is going to:
a) quit her job
b) travel around Canada for 4-6 weeks (she lives in Chicago)
c) get treatment from Wellspring Clinic for Holistic Medicine for her Retinitis Pigmentosa (RP)

Retinitis Pigmentosa is a degenerative eye disease that currently has no good treatments. There are quite a few promising results in the last stages of clinical trials, but nothing now.

So we think she is mostly going on this trip because of the possible treatments. So, besides whatstheharm.net, are there any good sites that specifically talk about the potential harms of trying holistic medicines? They will be "Treating Retinitis Pigmentosa  with Traditional Chinese Medicine." Or are there any links showing why these guys are just going to take her money?

Our current plan is to talk to her and try and convince her to see a real doctor first. Then hope she explains what she wants to do, and that this "neutral 3rd party" with authority can help convince her it is a bad idea. This also hinges on that particular doctor being anti-quack, so that's a rough game.

If any one can be of help, thank you.

[daemonowner]

That's a bit brash. Quitting her job in order to get acupuncture, acupressure, qigong and herbal supplements? Why does she think this will work. In all seriousness, ask her. Does she believe in 'holistic' approaches like acupuncture, because you might be able to remedy that. Look up the services provided on their website, and go through them.
Wesbites like Neurologica, whatstheharm.net, Science Based Medicine, Respectful Insolence and quackwatch.com should get you started. Books like Trick or Treatment (which devotes a chapter to acupuncture) and Bad Science are pretty good summaries to date.

I could just say acupuncture doesn't work, for most of what is claimed at least, but that isn't very convincing and doesn't get you very far. You'll need to look this stuff up. Look for the arguments and counterarguments provided in favour of acupuncture, and look for the evidence of every claim. Hopefully that won't take far too long, I don't know how long before she takes the plunge. Good luck, and hopefully good advice from people who know more about this than me.

[ting-bu-dong]

Chances are your sister in law isn't thinking of this clinic as a business selling her a (presumably expensive) product in the same way she would think of a science based clinic. Changing that framing might be your best bet, because arguing the specifics of the evidence is likely to be messy and for every argument you bring up, there is a more polished and more resonating one put out by the clinic and other proponents of holistic medicine. I would press the question whether she would be doing the same thing for a highly speculative science based treatment and if not insisting on justifying the distinction. Emphasise that this isn't about your preference for science, but about her not getting scammed and hurt.

Why does she have to quit her job to get a medical treatment anyway?

[SGeek]

She is not quitting her job to go to the clinic. She is quitting her job to spend 4-6 weeks traveling around Canada; and she hates her job. She hasn't even specifically said that she will be getting the treatment, but she did talk about it a year or two ago.

Yes, I read neurologica regularly, and I couldn't find any great solutions on whatstheharm.net. I will look at some of the others too.

RP is one of those diseases that is untreatable, so "why does she think they will work?" It is the "why not, nothing else works" mentality. When faced with the reality that with our currently available treatments, that she will likely go blind, there is nowhere for her to turn. Someone who claims they can help is better than nothing (or so the story goes).

Thank you all for your thoughts. We are more concerned that she will spend money (and she doesn't have much) to possibly hurt herself is our biggest concern. Her mom is also concerned that she is quitting her job and going on an adventure, because she likes to worry about that kind of thing; but that really isn't something that I worry about.

[Karyn]

I'm guessing this is what she's doing?

http://www.tcmrp.com/introduction.html

[SGeek]

I'm guessing this is what she's doing?

http://www.tcmrp.com/introduction.html

I would assume so. She is doing this all on her own, and knows we don't endorse it, so I'm not sure the specifics.

[Karyn]

I'm guessing this is what she's doing?

http://www.tcmrp.com/introduction.html

I would assume so. She is doing this all on her own, and knows we don't endorse it, so I'm not sure the specifics.

Well, there's certainly a good place to start research, if you want to try to tackle it from a fact angle.  Unfortunately, this usually doesn't work with people who got to where they are going without them.

[daemonowner]

First, I'm amused by the Freudian slip: "There is no effective treatment for this condition."

Second, I realise she might just be thinking of doing this as a last-ditch attempt given nothing else to date works effectively, but would she rather be blind, or blind with a heavy pocket and a job for the meanwhile. Most people hate their jobs, but the prospect of tcm helping might be pushing her to quit when she might not otherwise.

A quick google search turned up an acupuncture site claiming john-hopkins was cooperating in a study of acupuncture for RP.
http://clinicaltrials.gov/ct2/show/NCT01604356 <- this is the protocol online.
"...this potential treatment has not been put to the test of objective, rigorous scientific study conducted in western society. In this pilot study, the investigators aim to evaluate ... [emphasis added]"

So its admitted by the proponents of acupuncture for RP that is has not been studied, and all that is currently presented is anecdotes by patients of these therapies. Why doesn't she try homeopathy then? Not to give her ideas, but this is the best way to get scammed. Gerson's Therapy for cancer is a great example of people getting scammed and really fucking suffering from it (Also: Quackwatch's take on Gerson's Therapy).

So there's no evidence for acupuncture (their primary procedure for RP) working at all. All that is presented is anecdotes (11 anecdotes in their Case Report section, to be precise. And mislabeled as research). She's thinking of quitting her job and travelling to Canada for over a month to get these unproven treatments... and she thinks that's a good idea. Sure, I can understand it being a last ditch effort, but think of the consequences.