Treatment for MECFS Should not Be a Luxury. Why We Need Research.
There are no FDA-approved treatments for MECFS. There are few evidence-based treatments and those that can be considered at all evidence-based rest on small scale studies, generally retrospectives. All of this combines to mean that even though there are pharmacological treatments with some evidence of effectiveness the data is inconclusive and the only way to access these treatments is out of pocket.
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Unequal access
The first point of inequity comes in the form of access to doctors willing to try off-label scripts. Most doctors are not willing to write these scripts meaning only those with the resources to seek out and pay for (generally private) doctors willing to prescribe long shot medications will ever have access to treatments.
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Need to self trial
Not only is it difficult to access treatments but once you have there is no good evidence saying what will work. Therefore it is not enough to just be able to access and afford the treatment that could help you. You need to access every treatment or at least a large swathe, essentially gambling over and over hoping for a win. This also makes crowdfunding or seeking out help from friends and family more difficult as you are not just asking "get me the medication to help me" but rather "help me try this next option that might help," over and over.
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A perpetuating problem
The issue with these treatments is actually made worse by the fact that while hit and miss some combination of treatments often does work at least partially in the people who can afford tens to hundreds of thousands of dollars of out-of-pocket costs. These are the people who would ultimately have the most resources to fund research and a cure. But when off-label solutions are available to the wealthy, those with resources become less motivated to help everyone else.
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What we need
What is incredibly necessary is good placebo-controlled studies both into new treatments and existing off-label treatments. Even though studying new treatments can feel more important, studying the existing treatments is essential to getting insurance to cover them and thus improving equal access. This includes studying non-prescription drugs like supplements which can also be large out-of-pocket expenditure.
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An expensive out of pocket treatment option existing does not make a disease curable
If you have had success in treating your MECFS through expensive out-of-pocket off-label treatments please do not use this as evidence that recovery is possible for most. The majority of people with ME are struggling to pay for basic living expenses due to the difficulty of working with this disease and the low access to adequate welfare. Asking people to invest in unproven highly expensive treatments is untenable and unfair. Blaming them for not doing so is cruel.
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So what should be learned from people who can afford treatments?
Unfortunately, a single case of improvement does not make for conclusive evidence on any treatment. While you can ensure you participate in any retrospective studies, this will not solve the issue of needing good placebo-controlled studies to prove treatment efficacy. However, what can be learned from general improvements in the population who can afford treatment is that MECFS is not impossible to treat. It simply requires complex medical intervention, not simple talk therapy or exercise. What those interventions should be needs studying to be made into viable treatment guidelines.
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So should I buy out-of-pocket treatments?
I will never tell anyone not to invest in their health. However, understand that pursuing treatment for ME off label has no guarantee of paying off. If you can afford to gamble on treatment take the initiative to also invest in research and move us closer to treatment for all. If you are going to spend on off-label treatment focus on what is most likely to help your individual case by looking at comorbidities and your particular symptoms and which treatments are most indicated for that profile. This is one reason I avoid treatment recommendations. I do not know your comorbidities and symptom profile.
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I can't afford out-of-pocket treatment... what do I do?
First of all, know that it is not your fault you cannot access these treatments and it's not a matter of not wanting to get better enough. You are smart not to spend money you don't have. If possible focus on getting comorbidities diagnosed. You can then seek to be prescribed medications for your comorbidities improving your quality of life and giving you access to treatments. Find a balance where you seek as much help as possible without overstretching your monetary or energy resources. Do not feel bad if this ends up not giving you much room for treatment. You are not failing, government funding for research has failed you.
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I am finally about to begin receiving real treatment for my MECFS and Behcet's disease primarily in the form of IVIG a treatment that is ideal for my case based on case studies, overlapping benefits, and comorbidities but that I am incredibly lucky and privileged to receive due to its limited supply. Intravenous Immunoglobulin is made from hundreds to thousands of Blood Plasma Donation and is therefore undersupplied despite its life-changing capabilities.
I spend a lot of time wondering why me? Why am I so lucky to access this treatment when so many others have nothing? The answer is: privilege and money. A family with both the support to find me the doctors willing to tackle my complex case and the money to access this expensive treatment. The answer is that the guilt I feel is real and based on a system that excludes so many from treatment not based on the likelihood of success but on the ability to pay. The more you suffer from rare diseases like Behcet's or neglected diseases like Myalgic Encephalomyelitis the more this holds true, even in a place like Australia where we have medicare for all.
I always feel conflicted about treatment recommendations which is why I generally refrain from making them. The reality of MECFS is that whether you should try a treatment often depends more on your financial status than your health. The most important treatment for ME is pacing. Everything else has minimal evidence and is most often out of pocket. Many trials have groups of responders and non-responders meaning the best treatments we have are hit and miss. IVIG is like this with the autoimmune subtype being a strong predictor of response.
In general, I find there are loads of people out there recommending everything but the kitchen sink when it comes to treatment. Just trying things at random is often the best patients can do to try to get better. But stumbling blindly for an exit from this prison of the millions missing only helps one. Research is the only way to light a path for us all. I am a strong supporter of the Open Medicine Foundation and highly recommend that if you are like me and in a position to spend on treatments you will follow me in donating to help cure MECFS for all.
