Okay, this is a rant. This rant is so long and complicated, with so many connections to other topics, that I have considered that I should perhaps launch another blog just to deal with it. Or maybe create an online course for people with complex autoimmune diseases. Something. Because I finally have snapped for sure.
It happened while I was attending my monthly Scleroderma Support group in July. I go to these meetings because I need to talk to people about my illness, become educated about treatments and coping strategies, and to get, you know, support! I want to flock with my peeps!! Usually in these meetings there are introductions, a little sharing, nice snacks, and a presentation by a guest speaker.
This is the problem. The speakers who have been coming are often involved in alternative treatment strategies. As in alternative medicine. As in flat out pseudoscience masquerading as legitimate methods of treatment for our complex health conditions. These speakers have been trained in their “method” and faithfully parrot back what they were told in their training. They have little actual knowledge of human physiology, biology, disease, or science. They are connected to a product or system that they want to sell to us to help us “stay healthy”. They especially tell us that they can help us have “healthy” immune systems and/or take away our pain. Since I am in pain because my immune system is misbehaving it’s hard to not find their messages appealing.
Except… I was a biology teacher. I used to work in a research lab. I know science as a logical process with rules, and this information is so outrageous it causes me to wiggle around in my chair, bite my tongue, and often whip out my cell phone to fact check.
Me: Google, please tell me if Leaky Gut is a real thing?
Google: Are you crazy? Of course not.
Me: That’s what I thought…
But evidently I absolutely, positively need to take this essential oil to protect me from leaky gut. Or the toxins will leak out though the holes in my intestines. This is the cause of many complex illnesses. Research? We don’t need no stinking research. We have testimonials!!
How about the day I learned that I need to massage my hands and feet at specific pressure points to clean the toxins out of my liver, pancreas and other parts of my body? Really. I was informed that the problem is that the cells of my body get dehydrated, will form tough protective barriers, and the fascia then can’t move fluids throughout the body. This was such a garbled version of reality it was practically science salad.
Me: Google, please tell me exactly what fascia is.
Google: Sure. Fascia is the thin, tough barrier around muscles and organs. It is part of your connective system and made of collagen.
Me: Google, just to be sure, it doesn’t have anything to do with fluid transport?
Google. No, dumb ass. That would be the lymph system.
Me: Google, that’s what I thought. No need to cop an attitude with me, you wouldn’t believe what I’m dealing with here.
As if all this fact checking wasn’t exhausting enough, there is also a hint of “anti-science” in the room. Several other patients have become convinced that we need to stop taking our meds as they have unacceptable side effects. It is better, they argue, to control our disease with diet, essential oils and supplements. OMG! It isn’t possible to google fast enough to keep up with this stuff!
Me: Google, what is this alkaline diet all about?
Me: Google, is dairy inflammatory?
Me: Google, do I need to take massive doses of probiotics every day, or can I just eat yogurt? This speaker is telling me I have to buy their product since I can’t eat dairy anymore…
Me: Google, how quickly do bacteria divide? Every 20 minutes? So I don’t need a massive dose?
Me: Google, is there any research showing a positive benefit of essential oils in systemic sclerosis?
Google: Stop! I have smoke coming out of my ears! Let me direct you to this nice List of Topics Characterized as Pseudoscience. There. You’re welcome.
While loading up on gluten free snacks at the break I finally snapped and asked the group facilitator if she thought it would be appropriate to let people advocate going off their meds and using essential oils to treat their conditions if this was a cancer support group?
“Well, no…”, she replied. “But that’s cancer.”
I just looked back at her until I saw something click in her brain, and then I left. I’m done.
Since then I have been fussing around about why this is happening. I understand that this is a tough disease (in more than one way), but how awful it is that there is so much misinformation out there that people don’t know what is accurate, and what isn’t. Desperate people will clutch at anything that gives them hope. Sometimes these things are based in sound logic, reason and science (stem cell transplants), and sometimes they are not (amber beads for pain relief). Obviously people need to know more about the nature of science, basic physiology, immunology, cell biology, and how the medications prescribed by their doctors work. They need to know their Star Trek!!
That’s right. Star Trek II: The Wrath of Kahn is what I needed to put this into perspective. So many movie quotes, so many posts.
So, I feel a lot better after finishing up my rant, but I still think that I may need to launch a mini-series of posts relating to this. I mean, there are all those pseudoscience cures to debunk. All that biology to share. All those Star Trek quotes.
Stay tuned. If I start the new blog, I’ll let you all know where it is. Otherwise, a lot of my knitting friends are going to be exposed to some biology. Feel free to let me know how you feel about that.J
29 thoughts on “So Long, Farewell, Auf Weidersehen, Good-bye… to My Support Group”
Loved this blog. Please keep it up. I have followed your blog for about a year. I am a knitter and retired media specialist from a high school. I am learning so much from you. I always enjoyed working with the biology teachers. Rant away and educate us. We need it.
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Oh, wow. You just made my day. Thank you, and I must say that I loved all of the media specialists that I worked with. You guys are the ultimate experts in information sorting and determining if a source is legitimate!!
That is my favorite blog EVER!
And I didn’t even talk about vaccines causing autism, but you know that was on the pseudoscience list!!
Thank you so much for the feedback!! 🙂
Rock on, sister! I’m sorry to hear that the group that’s supposed to be helping you has ended up causing you so much frustration. I’d be interested in readying anything you have to say on this or any other topic.
Thank you. It’s hard to listen to the perpetration of such ignorance, especially when it might have a true negative impact on someone’s health. The 10 year survival rate is about 50% without the new generation of immunosuppressants; those are the meds that some of the people in the group have stopped. 😦
Just so you know: leaky gut IS a thing. It’s known as short bowel syndrome in medical speak. It shares many of the characteristics of the supposedly mythical leaky gut, and you can die from it. And in research I’ve looked at (briefly) from other countries there is a correlation between exposure to Roundup and the syndrome. Correlation may not be causation, but in my book it’s a factor to keep in mind.
However, I am betting that someone is trying to sell some crap made up of herbs you could buy and eat in your kitchen for some outrageous price promising it will make you better. Why these people, who are obviously trying to sell something, are allowed to present this as helpful is beyond me. That is totally hijacking the meeting for commercial purposes.
Short bowel syndrome is what it sounds like: there isn’t enough healthy small intestine for digested food and water to be correctly absorbed. People with systemic sclerosis have similar problems as the tissue of the intestines gets so scarred it also interferes with absorption. It’s dreadful to watch some of the people I know waste away. Sadly the cycle also involves constipation and diarrhea as the muscles in the gut are damaged too and mobility becomes a problem. That’s why this presentation was so upsetting.
The leaky gut in this meeting was described as a gut “like a colander” with holes in it that let “toxins” and waste leak through into the blood stream. The essential oil reduces the size of the holes. The presentor also asserted that all autoimmune diseases start in the gut; I want to see the data to back that claim up!!
There are some other conditions that would qualify as leaky gut, but they are rare. See, this should be a whole post!!
I forgot to agree with you; correlation is not proof of causation! Look at all the trouble we are having with autism and vaccines; once controlled studies were run to check the hypothesis they discovered that even though there appears to be correlation, there is no direct link.
The entire hypothesis that autism is caused by vaccines originated from one man. This man lost everything after it was found out he fabricated the entire claim just to push his own vaccine patent on the market and make big bucks out of it. All research conducted thereafter that sides with ‘vaccines are linked to autism’ are based on his fraudulent claims and pseudoscience at its worst. 😦
There are thousands of studies that have found not even any correlation between vaccines and autism. Evidence is pointing towards genetics playing a big role in it, but vaccinations have no role in it whatsoever.
Exactly! His research was retracted, but the damage has been done.
I’m sorry your group has come to this. Usually people selling these items have to be very careful of claims that it will provide you medical support in any way. Apparently, they’ve sold the person in charge of guest speakers. Perhaps ask for more guest speakers with actual experience with your issues, and more medically trained persons. I’m sure some of their items will help people feel better in a short-term or perhaps help them live healthier, but there is a time when you have to let medical science do its job as well.
Thank you for the education.
I think that the person who arranges for the speakers believes in and uses these products. She certainly has adopted extreme dietary restrictions. 😦 I’m shocked that the representative of the Scleroderma Foundation doesn’t see the problem. It shows how mainstream these fuzzy pseudoscience beliefs are. I’ve decided to start talking about it.
Thanks. I stewed a long time before I wrote.
I think your post is fantastic, thank you for sharing! Keep sharing, please! I can understand your frustrations 😕
Thank you! Looks like I’ll be posting to this site. 🙂
I’m glad you’re saying good by to the group. Maybe send a good bye letter with an attachment of , ‘this is your disease with fact-based research and this is your disease using pseudoscience.’.
It’s sad that a support group is pushing such nonsense. Whoever heads up this group should be ashamed. Just wondering can the group be reported to the National Scleroderma Association.
Keep your humor going MK. You know the old saying ‘Laughter is the best medicine”. In fact, I think there is actual fact-based research on this ! !
Oh, the two people involved just received national recognition for having such a great chapter here in Denver… a lot of money has been raised by the group. I have thought of sending the post to the national office. 🙂
Sad that the place you were looking to for support proved aggravating instead of helpful.
Kudos to you on your post! Natural alternatives are meant to augment medical treatment not replace them. In my opinion, it is dangerous and irresponsible to suggest these other modalities are a replacement for proper medical care. 😦
I agree with you!! So sad for the people who are succumbing to this nonsense.
Dear, thank you so much for writing this. I suffer fro an orphan neurological condition, and I have had to deal with the same awful stuff! It’s hard when family says I should drink herbal tea, but when people try to take advantage of the pain and possible despair of patients, it drives me nuts. I am with you, whatever you decide, and it’s so cool you knnow about biology!!!
I think I know what you are talking about. I once had a neighbor tell me that I needed to get more exercise and sunshine so “I could get well”. People think that if you just drink the right tea or take the correct supplement (or eat the correct foods) you will “get well”. It’s borderline suggesting that you are responsible for your illness… Not nice!! (They are also smugly reassuring themselves that they won’t get sick because they do the “right” things). It doesn’t help that our illnesses are mostly invisible.
I’m upset and concerned that these unproven and poorly documented remedies are now mainstream with a huge presence on the internet that gives them a perceived legitimacy. I lot of people are making money by selling organic “snake oil”. Time to speak up!
Thanks for your willingness to follow me on the rant mini-series.
Hugs! Hope you are having a good day today.
Exactly, some people told me I wasn’t trying hard enough to get better because I didn’t do the whole work-out/paleo/yoga thing… and some people even told me blankly I was responsible for the illness. But yes I guess, it can be a coping mecanism for them, so they don’t feel threatened by the disease. I’m so upset about all the misinformation everywhere too. If it’s any help, I can translate into french ! We need to spread scientific truth and support each other ! Thanks and big hugs, I’m having a lovely day and I hope you are doing ok too !
I like biology. It would have been my third choice as a major. 🙂
I think we are all still very ignorant, whether rationally based or intuitively based. I tend to think if it grows in my garden, I may try it, but if it’s a product being sold, no thanks.
Thank you for this post – I’d definitely read more informative rants. I’m sorry your support group is being undermined; I’ve seen this happen in a number of other situations far too often and it boggles my mind that people will eschew medicine (and science) for placebos (and pseudoscience).
It is shocking. People are more willing to trust an “expert” on the internet (who is selling some product) over their physician. So sad!
Thank you. I’m on the verge of the rant mini-series. I needed to do some planning. 🙂