Supplements, Treatments, and Herbs Oh My!
Some of you may have noticed I have a strong policy of removing any comments advertising unproven supplements, herbs or other treatments on this page.
This is not because I believe none of them work. It is because I believe in science, and I know the science is not in on these treatments.
----
I personally take several off-label supplements and medications. I try to take those with the most initial studies and evidence pointing towards them but I am sure I am biased by anecdotal evidence, advertising, random articles and more. I believe some of these treatments have helped me. The majority did nothing. A few made me sicker for a bit and I stopped taking them.
---
The point is, MECFS is a relapsing-remitting disease in 80% of cases. Even in the 15% declining cases it fluctuates. I have no way of knowing if any of the treatments I use or tried truly worked or hurt me. So I will never promote any of them on this page unless large-scale clinical trials come out in support of them.
---
Is this a double standard? I don't think so. To me, there is a huge difference between being desperate enough to experiment with off-label medications, herbs, and supplements and promoting these things as cures online. First of all, even if one of these products has cured you, most have evidence showing they do not make a major difference in at least a small-scale trial. Secondly, anecdotal evidence is extremely powerful and the placebo effect in MECFS is by and large a harmful one as is proved by the harm done by CBT which is essentially a placebo on steroids.
---
If someone takes this herb and pushes themselves into a crash because they thought they were going to get better that is doing active harm to someone who trusted you. (For the record a referral to a doctor who pushes the same general supplements on everyone with outrageously high claims of success is just as bad in my books).
---
As MECFS activists or prominent influencers, we have a responsibility to first do no harm. We should always avoid giving out advice outside of scientifically proven treatments, with the acknowledgment that different people may place their bar for when something becomes an evidence-based treatment in different places. For example, promoting LDN might be something some people feel comfortable with on the basis of its large-scale studies in fibromyalgia but others may not.
---
In general, the advice we give on large platforms is not the advice we might give in private or speaking about our own personal experiences. This is necessary because the consequences of giving advice on these two platforms are vastly different. It's why doctors might try an off-label medicine but the CDC wouldn't be recommending it. We must set our bar for evidence higher than personal experience and acknowledge the fact that MECFS is a variable disability which makes crediting improval to a specific treatment incredibly difficult. Even if you do speak about your personal experiences, acknowledging this fact is essential.
---
Treating MECFS and Giving Advice on Treating MECFS need Different Guidelines.
While it has been amazing having doubled my followers this past month and being able to spread more information about the terrible severe neuroimmunological condition that is myalgic encephalomyelitis and severe ME the one downside has been having to delete a lot more comments promoting miracle cures, drugs and doctors.
Even more difficult is balancing the line between giving personal advice and giving advice as a trusted data source.
The thing is, MECFS is an incurable illness. The only scientifically recommended treatment, the pacing is rationing your life, it is a terrible way to live. It would be incredible to have other things to recommend to people in order to improve their quality of life. The issue is, the science just isn't in and while I am comfortable experimenting with my own health based on preliminary studies and theories I find it academically and morally irresponsible to recommend these experiments to others. Especially when brain fog makes processing these studies impossible for many.
Persons with ME are a severely neglected and vulnerable patient population. We are desperate for anything to relieve our suffering. So we turn to unproven diets and supplements, herbs, off-label medications and more. I personally feel if you can find a doctor willing to theorize, research and help you individually this is not a bad thing. Many people with ME have other underlying conditions that can be treated or have primary or secondary metabolic disorders that may respond to diets or lifestyle changes.
The issue is when we promote what works for us under the impression that we are adding to the body of evidence or providing valuable data to others. Our individual non-placebo controlled self-experiments on bodies which have a whole multitude of individualized complications are not scientific studies of merit to justify the recommendation of (often expensive) treatments or drugs.
Instead, we should promote studies into potential cures as well as general research into the commonalities of ME patients that may lead to a cure for all of us. Places like Open Medicine Foundation are a good place to start.
