What Is Alternative Medicine? Navigation and Safety
This Account Supports Evidence-Based Medicine
As long time followers know, this account does not endorse any unproven treatments for ME. Given that there are no medications approved to treat ME that means the only medications I endorse are for symptom management and treatment of comorbidities like POTS, fibromyalgia, and migraine. The only evidence-based treatment for ME is pacing.
I believe that all patients have a right to attempt treatments they feel can improve their health. Alternative medicine is often used in this way and comes with varying levels of evidence.
This post aims to provide guidance on how you can keep as much of the scientific method as possible present in your treatment and protect yourself from harm while navigating the world of alternative medicine.
One common phrase in experimental treatment groups is: everything works for someone, nothing works for everyone.
There is truth to this, there are many treatments which may never be evidence-based but may still work for some people. If you are that person, you probably don't care if a treatment is evidence-based. But that doesn't mean that we should endorse treatments based on anecdotal evidence. You are welcome and encouraged to keep doing whatever works for you. But please remember that your personal experience is not licensed to go around claiming you have found the cure for ME or any other incurable disease.
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Alternative Medicine
Encapsulates everything from homeopathy to CBD. I group alternative medicine into 3 categories based on why they are alternative.
1.) Stigma
Associated with war on drugs or marginalized groups. Often supported by strong scientific evidence.
-Medical Marijuana
-Ketamine
-Psychedelics
-LDN
2.) Home Remedies
Associated with non-western cultures, or non-standard administration. May be evidence-based but have less evidence than the "standard therapy"
-Herbal teas
-Supplements
-Physical pain control (chiropractic, massage, heat/cold, acupuncture/pressure, etc)
-Balms/ointments
3.) Placebo / Non-evidence based
-Homeopathy
-Hypnotherapy
-Positive thinking (under various labels)
-Snake oil
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Herbal medicine
Herbal medicine simply refers to using herbs directly to treat conditions rather than using modern pharmaceuticals. Some herbs have scientific evidence to back them, others are used based on tradition. In general, there is no regulation over herbal remedies.
Some benefits to herbal medicine include:
Generally not too expensive
No worries about being cut off from your medication
May be applicable where no modern drugs are developed
Downsides to herbal medicine include:
Unpredictable dosing
No standardized quality control
Difficult to know the proficiency of your practitioner
Can interact dangerously with prescription drugs
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Functional Medicine
Functional medicine claims to be a form of medicine focused on finding the "root cause" of an illness. Functional doctors often specialize in under-diagnosed or difficult to recognize conditions like Lyme disease, toxic mold, mitochondrial dysfunction, chronic EBV and so on. Because they offer potential causes for "idiopathic" chronic illnesses like fibromyalgia and MECFS many complex chronic patients are drawn to them.
In my opinion, the true value of functional medicine doctors is they tend to be open to individual experimentation and running non-standard tests. This can be helpful in patients with complex conditions that do not exactly fit within a standard diagnosis and treatment plan.
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Functional Medicine Cont.
Functional medicine doctors generally hold medical degrees and can prescribe both alternative and traditional treatments. This is a massive strength as it means you can receive herbal and supplemental treatment from someone who is also considering pharmaceutical options.
However, some functional doctors are strongly anti-pharmaceuticals despite holding medical degrees. This is something to be careful of if you want to make sure you are aware of all your options.
Finally, while functional doctors can be very helpful, many take advantage of the vulnerability of their patients and may overcharge and/or over prescribe supplements that they personally make commission off of or they know to be harmless but not useful. Patients who are undertreated by traditional medicine may find themselves overtreated by functional doctors.
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Dangers of Herbal, Functional, and Alternative Medicine
Drug Interactions:
Many supplements and in particular herbal supplements act on the same receptors as drugs and are excreted by liver and kidney in similar fashion. This means taking herbal supplements can cause you to build up toxic levels of drugs or chemicals in your body causing negative effect. Other supplements can block the action of some drugs which can be dangerous if the drug is protecting you.
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False Energy:
In MECFS patients placebo-based treatments like homeopathy and the lighting process can be very dangerous because placebo is very effective in treating fatigue temporarily. This means patients will actually feel subjectively better, overexert, and then crash.
Overexertion is the primary way in which people with ME become severe. It is essential that persons with ME do not assume any treatment to be working and do not increase activity significantly until they receive sustained energy improvement over a long period of time.
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Monetary:
One of the largest dangers of alternative treatments is wasting money. Supplements can become very expensive as can alternative practitioners. Most supplements are proven not to be dangerous but not proven effective which means people can end up taking large amounts with no real benefit.
Financial pressure is one of the largest reasons people with ME overexert. Therefore, reducing financial needs however possible is very important. This means exercising caution when it comes to trying alternative treatments, not spending large amounts of money on continuing treatment if no benefit is seen, and researching all potential alternative treatments to see if the evidence applies well to your specific illness.
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Choosing a Doctor
In general, I strongly recommend that anyone with serious health issues see a medical doctor properly certified in their country and specializing in their primary symptom area.
However, I understand that when suffering from a condition with limited or no standard treatment options it is normal to want to try other things. In this case, my first recommendation would be a functional medicine doctor. They will be able to help you try alternative treatments while ensuring there are not dangerous interactions with any pharmaceutical medications you are taking.
If you cannot see a functional doctor due to cost, it is still okay to explore alternative treatments but you should be aware of the lack of standardization and regulation. If possible try to read any scientific papers that cover both the supplement or herb you are interested in and its function in your condition.
Practice as much scientific rigor as possible treating yourself as a single person drug trial. If possible organize blood tests and use heart rate, hrv, and blood pressure monitoring as well as objective symptom tracking to determine whether a treatment is working.
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Context
This post will be taking a Euro-centric approach to medicine as this is what most of my audience is familiar with. In traditional western medicine, the terms "alternative" "herbal" and "functional" are often used interchangeably but I find understanding the differences can be very informative if you are looking at alternatives to western medicine.
Note: "Chinese medicine" is used very broadly and encapsulates alternative, herbal and functional treatments. Chinese and Asian doctors also do research in modern "western" medicine yet that is rarely considered part of "Chinese medicine" so this term is a bit weird to me.
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This account supports Evidence Based Medicine. But when you have incurable chronic Illness like Myalgic Encephalomyelitis or MECFS Fibromyalgia and MCAS Functional Medicine and Herbal Medicine can be tempting places to turn.
Here's the thing Alternative Medicine does not mean completely unbased in evidence. Treatments can be alternative for a number of reasons. Many of the most evidence based treatments for ME / CFS and Fibro are considered alternative for example using CBD for pain. Likewise, some of the treatments with the most promising emerging evidence base LDN and LDA are considered alternative because they are not yet proven effective to the same standards as modern medicine.
But when there are no other treatments, it is rational to want to experiment. While I avoid recommending anything that could be construed as a cure for ME because
1. MECFS is incurable in 95% of patients
2. Suggesting a treatment is effective prior to concrete evidence may cause patients to spend money they don't have
3. The placebo effect of someone thinking they have started something effective may cause them to overexert and crash
I encourage all patients to take charge of their own health. I hope this post can help illustrate how you can assess the evidence of alternative treatments as well as find a qualified practitioner to guide you. Remember that our community is highly vulnerable and that people are constantly trying to take advantage. If something sounds to good to be true it almost certainly is.
Also remember: "Everything works for somebody, nothing works for everybody." Just because a supplement or herb works well for you doesn't mean you have discovered the cure for MECFS. Additionally, spontaneous fluctuations and remissions occur in most patients. So don't fall into the trap of assuming every change must be because of something you did.
So stay skeptical, stay curious, self-advocate, let the evidence guide you, and listen to your body. Regardless of what treatment you choose to pursue. Stay tuned for a post detailing specific common dangers of supplements for further harm reduction.
Also a note on MMJ and CBD, these treatments are considered alternative because of stigma and are strongly evidence-based for pain. If you have severe pain from ME, fibro or any chronic illness I highly recommend finding out how to access these treatments where you live. (Or fighting to legalize them!) There is a strong evidence base for these treatments and for most of human history they were widely used. The story of how they came to be so heavily criminalized is massively revealing of the US's racism and red scare tactics.
Note: I personally use a whole bunch of treatments that would be considered "alternative". The reasons pwME use alternative medicine is because we have no other option. There is no conventional medicine to treat our disease. However, just because we have to use alternative treatments doesn't mean we have to disavow evidence based medicine. Good doctors no matter whether they are functional GPs, standard GPs, specialists or even naturopaths, dieticians, chiropractors etc. will all still practice according to the best evidence available. Even when that evidence base is small, it doesn't mean it should be ignored. And we can still choose the treatments with the most evidence available even while demanding more research be done.
