I find this interesting, because I have never heard of anyone “recovering” from fibromyalgia. What was the cure?
Quick question for the group: Does anybody have any data on how frequent such spontaneous remissions actually are? Spend any time on any alternative health forum and one quickly learns that everyone there knows somebody who beat cancer with herbs and spice, or knew somebody who was beating cancer with herbs and spices until some evil “allopathic” doctor strapped 'em down and poured chemo down their throats at gunpoint, or who stepped into a hospital and spontaneously combusted in the foyer because of all the toxins or whattevadafuck. None of them have any proof, mind you. None of them have any studies or evidence or articles or anything that can be checked. But they’ve ALL got an anecdote. I know, I know. People lying on the internet. Whoever would have thought!
But it strikes me that if even 1% of these spontaneous remission anecdotes were even remotely true, it would have occurred to someone somewhere to try and work out the frequency of them. Has anybody tried to calculate how common, say, spontaneous cancer remission actually is? Google is proving most unhelpful.
Also, one thing which definitely isn’t “dooky” is that homeopathy is bullshit. Not only does it not work, it cannot work, has never worked, and every single person who says it has worked is wrong, without exception. The proof is simple: You cannot overdose on homeopathic medicines. You can chug homeopathic pills like tic-tacs and you won’t feel any different. If you go to YouTube and search for ‘Skeptics+overdose+homeopathy’ you can see dozens of videos of people knocking back homeopathic pills like they’re going out of style and none of them get even a little bit ill. There is only one possible explanation for this. Homeopathic drugs don’t do anything.
The jury’s still out on powdered unicorn horn.
I disagree that it’s all bullshit as far as potency. Oncology occasionally suggests trying marijuana or ginger to manage effects of chemotherapy, and recommend avoiding St. John’s Wort due to potential conflicts. Modern medicine informs patients of its own limits and sometimes encourages people to look beyond them and into, let’s call it “home remedies”.
I have no stats on spontaneous remissions and no personal knowledge except for one family member’s case, but if a tumor had magically disappeared, I’d ask to re-test or get a second opinion, and consider that maybe it never existed to begin with. Only on alternative medicine websites is it feasible that if ground rhino turds and banana peel could cure cancer, the medical community would conspire to suppress that knowledge and drive the real sages underground. CT is built-in.
I can envision a story of “I was cured, and then I went to a doctor and the cancer came back” when the underlying reality was that the patient didn’t have – or was ignoring – symptoms, and when they finally got dragged to a doctor the doctor said the cancer was still there.
It’s not so much a discrete “cure” as managing the problem. That means prioritizing what a person spends her energy on and accepting that she can’t do everything. It means treating any inflammation that might be going on. Since a lot of these people stop doing much due to pain or whatever they frequently become deconditioned and need to be rehabbed as far as strength and endurance is concerned - and that sort of rehab exercise hurts. You have to do it despite the hurt. Some of it is re-training the body to tolerate certain things, or to regain flexibility. You have to get them off inappropriate or useless medications. Frequently, anti-depressants are part of it but that shouldn’t be interpreted to mean they’re just crazy or hysterical - as I said, being in chronic pain is depressing, and more and more they’re starting chronic pain patients on anti-depressants before frank depression shows up.
In other words, you need a medical professional to really take a look at the individual and come up with a treatment plan to deal with symptoms and work on regaining strength and endurance. Every single person I’m aware of who “recovered” from this problem took years - usually around five to get back to a normal level of functioning. They are also prone to relapses which is why I put “cure” in the scare quotes - it requires life-long changes and modifications to keep the problem at bay.
Truth is, a LOT of people don’t do what’s required. To be fair, it may be some people can’t be helped since, as mentioned up thread by someone else, it may well be several illnesses with similar symptoms. It’s not uncommon for relatives to sabotage the recovery because people can be asshats. Sometimes the relatives enable/encourage the affected person to play the role of the chronic cripple. It’s a long haul. And I think a lot of people, rather than make the uncomfortable changes required (modification of expectations, keeping up an exercise program, dealing with chronic discomfort that is genuine pain at times with various strategies) would rather chase a one-time cure or magic pill.
“Spontaneous remissions” of cancer do occur. Reliable statistics would be very hard to obtain - for instance, a randomized trial of breast cancer patients in which some were treated and others left alone to see if their cancers progressed or underwent remission would be extremely unethical.
Needless to say, the rare phenomenon of spontaneous remission is anathema to wooists, because it’s a rational way of explaining why someone’s cancer went away (without believing that it was the herbs, “toxin” flushes or Spiritual Re-Awakening that did it). More commonly, explanations for why woo therapy might appear effective include the fact that the person never had cancer in the first place (diagnoses in these anecdotal stories are rarely documented), or that the surgery/radiation/drug therapy the person had before or during the woo treatment was actually responsible for the good outcome.
Sounds very wishy-washy. It shouldn’t be surprising, therefore, that many people do not believe fibromyalgia is a real disease with real, physical symptoms and a physical underlying cause.
Using the principle of Occam’s razor, IMO the most likely explanation is that fibromyalgia is psychosomatic in nature.
Fibromyalgia is a catch-all which basically means “the person has these symptoms but we can’t find another cause for it” which means it probably IS several disorders with similar symptoms.
People with the disorder (once you eliminate obvious fakes and misdiagnoses) really do have detectable problems.
- They do seem to have a problem with their pain perception systems being hypersensitized. Basically, it’s the basis for the idea that their pain detection systems over-react and/or are always on. This is not imagined pain - patients with this set of symptoms have elevated levels of substance P in their cerebral-spinal fluid, which is used by the body for pain detection and transmission, and lowered levels of dopamine, which provide natural analgesia in some situations. Some of these people get good results from medication used to treat Parkinson’s and restless leg syndrome, which are also associated with low dopamine levels.
- They do not get an analgesic effect from exercise. Normal people can feel good after exercise, a.k.a. “runner’s high” or just the boost you can get from some invigorating movement. People with fibromyalgia never feel this… which makes exercising all the more icky because they get the bad feelings from it and none of the good.
- People with fibromyalgia often have abnormal levels of the growth hormone, insulin-like growth factor, cortisol, leptin, and neuropeptides. Among many other effects, this results in a prolonged recovery from exercise-induced micro-damage to muscle fibers. In normal people this micro-damage stimulates the body to make repairs that make the muscles stronger. In fibromyalgia exercise just makes the person sore - and they stay that way for prolonged periods as the muscle fibers very slowly recover.
By this point it should start to make sense that these people are always complaining about soreness, pain, and weakness. Two of the above points ARE objectively detectable, but not easily and not with routine sorts of tests.
**- Modern brain imaging has shown that there are often abnormalities in brain function, particularly dealing with pain processing. ** This required refined functional MRI, PET, and other advanced techniques that have only become available in the 21st Century and would have been rarely available, and quite expensive, prior to 2000 or at least the late 1990’s.
It seems to me something is not working quite right in these people, and it’s related to both pain and muscle-fiber recovery. As there are detectable, physical differences from the norm I think it is an error to regard this as entirely “in the head”, “psychosomatic”, or faked. It’s also not a new thing - there are descriptions of patients fitting the description of fibromyalgia dating back to the 19th Century, although of course the term itself wasn’t invented until the mid-20th Century. Possibly, in earlier times these people succumbed to other illnesses more easily and more quickly than they do now with modern medicine so there weren’t as many around with active illness to attract much attention.
Anyhow - just because we don’t know exactly what’s going on here, or exactly what causes it, doesn’t mean the syndrome isn’t real. Heck, there are fewer actual physical markers for Alzheimer’s disease, which can only be definitively diagnosed at autopsy, yet people believe that is a legitimate disorder.
My guess is that it’s actually more than one disorder with overlapping symptoms - rather like a fever and cough can be caused by many illnesses and you have to look further to make a solid diagnosis.
And, of course, it can become a “trendy” thing to self-diagnose. Well, I’ve seen that with allergies, celiac disease, and multiple personality disorder as well, and while there is some controversy about the MPD both allergies and celiac can be objectively diagnosed. Just because the woo-woo crowd makes it the Disease of the Day doesn’t mean the disease isn’t real.
Not exactly hard proof but enough there to say that there might be something there.
Bamboo salt on the other hand seems to be pure woo. AFAICT, bamboo salt is a recently developed product that tries to wrap itself in the “legitimacy” of centuries old traditional medicine. AFAICT it is simply high ph salt that smells and tastes of rotten eggs that costs about $100 when a similar amount of iodized salt costs less than $1 at Walmart. AFAICT, its just regular salt baked in bamboo until it reeks of rotten eggs and then pulverized into a powder.
My mother is the same way. She will go to the doctor but she will try to gain some sort of health “edge” by using a silver aerator in her kitchen sink or a magnetized copper bracelet. She used to make me drink this vile tasting brew made from deer antlers and recently she tried me to start drinkning vinegar amde from beans (blech).
My mom has magentic bracelets made of copper. She also has a mattress pad with magnets in it. I don’t understand exactly how they work but they must work because they are very expensive.
My grandmother had a bad reaction when she took some traditional chinese medicine with some thyroid medication she was on.
Traditional chinese medicine can have some bad intercctions with modern medicines.
A small crack appears
In my diplomacy-dike.
“By definition”, I begin
“Alternative Medicine”, I continue
“Has either not been proved to work,
Or been proved not to work.
You know what they call alternative medicine
That’s been proved to work?
*Medicine.” *
—Tim Minchin , Storm
Taken from RationalWiki.
You’re starting to repeat yourself. Have you tried ginkgo biloba?
Kloss, Jethro; Back to Eden; 1939.
It is what it is, and I think he makes a good case overall. I’m hip to the “healthy soil grows healthy foods” principle. I’ll pass on his favorite procedure [grin]. But it’s handy reference book for your home library, I think anyone can gain something from it. Peppermint tea curing everything, we could only wish.
[QUOTE=Jackmannii]
Needless to say, the rare phenomenon of spontaneous remission is anathema to wooists, because it’s a rational way of explaining why someone’s cancer went away (without believing that it was the herbs, “toxin” flushes or Spiritual Re-Awakening that did it).
[/QUOTE]
I am not one for unproven medical treatments, but it does not seem that labeling it “spontaneous remission” does much to explain it rationally. I can be fully convinced that herbs did not work to cure, without accepting that “spontaneous remission” means much beyond “we have no idea how she got better”. IOW one can show that it wasn’t the herbs (by trying the herbs on other people and noticing that it didn’t cure them), but that does not go very far to finding out what did cure them.
“I don’t know” or “none of the above” is a perfectly valid answer, but it doesn’t explain anything. IYSWIM.
I have no doubt that wooists don’t like it, because of the related fact that woo doesn’t work in actual clinical trials, but that doesn’t explain much when something does happen, and someone gets better.
Regards,
Shodan
Why is it irrational to accept that cancers can shrink and even disappear in unusual circumstances, even if we don’t know the mechanism? The phenomenon has long been known, and it occurs on a relatively common basis with benign tumors. For example, fibroadenomas of the breast may stabilize and then regress into scar tissue (it is common for such foci to be biopsied only because they develop dystrophic calcifications that are picked up on mammography). Uterine leiomyomas do the same thing. And precancers (cervical dysplasias) often either do not progress, or the dysplasia disappears over time.
Nope. That violates a cardinal principle of woo, namely “what works for one may not work for another, we’re all different, so your drugs are worthless but not my herbs”
Life can be mysterious.
I should mention another cardinal principle of woo: “If you can’t prove why something happens, then you must respect my crazy-ass explanation.”
Reviving a thread because I’m so steamed right now. My mother bought $10,000 worth of blankets from someone at her church because they have magical properties that counter the effects of sitting in from of computer monitors (the best translation is negative ion blanket).
So what does she get for $10,000? 4 full size blankets (apparently made mostly of PVC fiber).
WTF!?!!!??
How does the mother of 4 successful professionals fall for this shit?
Momma Gargoyle has a Masters degree and has raised two educated professionals. When she visits I have to put the illuminated rock salt pyramid (Xmas gift from long ago) on the counter or else she fears for my health. I feel your pain.
It takes two to commit fraud. If you know who sold her those blankets tell them to offer a refund or else you’ll let it be known what kind of person they really are. Do NOT let your mother take all the blame.
Well, if my mother would admit that this was snake oil, I would totally do that but my mother doesn’t think she is a victim of fraud. There are plenty of websites that are touting this “new technology” that reduces the ill effects of all the positive ions we absorb by sitting in front of the computer screen, these positive ions are being blamed for every conceivable physical malady.
I tried to convince my mother that she had been had by pointing her to websites where these negative ion blankets are “only $1000” (the $200 ones are of obviously inferior quality:smack:). This is after the magic gold and silver cylinder that she bought us to drop into our water pitcher at home (at least that had an a few grams of actual gold and an ounce of silver (both treated by a secret magical process that purfies the water of all toxins and infuses the water with some sort of endocrine stem cell that morphs into whatever my body happens to need at the time) and might even be worth what she paid for it in 2000); or the magnetic massage cot that gives you free at home acupressure treatments all for the price of about 100 actual acupressure treatments.
At this point my wife is telling me to say thanks for the gift and encourage my mother to start a less expensive hobby like cocaine and hookers. We used to book her on cruises in the hopes that she could spend most of the rest of her active life on cruises but she came back with what can only be described as a doctorate in crystalology along with a year’s tuition worth of rocks from the caribbean.
Those rock salt lamps don’t work! They hardly throw off any negative ions at all!!!
http://www.negativeionsinformation.org/saltcrystallamps.html
Unless they are the ones made from a particular mine run by Buddhist monks in the Himalayas and shaped like a pyramid. Are your rock salt lamps from the Himalayas?
You are much better off buying blankets made of PVC fiber and spun tourmaline (which apparently has pyro-electric properties that generate all the magical negative ions).:rolleyes:
On the other hand at least the fucking lamps can be attractive (some of them have pictures carved into them that look sorta neat when the lamps are lit) and can be bought for under $100.
They also make reasonably good nightlights (if you like 10 pound nightlights).
Overcompensation. They know they are full of shit. They think the more they talk the more they can convince themselves and others what the believe is true.