Another issue regarding debates about the science and the evidence base for a ME/CFS treatment is this:
Many ME/CFS patients on this forum (and elsewhere) will often work with a biochemical
hypothesis, rather than an established medical
fact. Patients typically use the hypothesis to guide them to a treatment, which usually involves taking some supplements.
In this way, by taking these supplements, patients are testing their hypothesis, in the sense that if they lead to improvements in symptoms, then perhaps there was some truth to the hypothesis (though even if a treatment works, it's hard to know what's really going on biochemically).
I have coincidentally just begun a new variation of Th1-boosting immunomodulation for ME/CFS of my own devising, where I am taking inosine to try to shift the immune response towards Th1, and at the same time, I am taking supplements that specifically boost interferon gamma. My
hypothesis is that by increasing interferon gamma, this should help clear out the non-cytolytic enteroviral dsRNA that is associated with ME/CFS. (Why this might work I explain
here; basically IFN gamma induces the enzyme
dicer which destroys viral dsRNA).
The fact that the validity notion of the Th1 / Th2 balance has a question mark next to it is not a sticking point for me because my whole treatment enterprise is based on hypothesis to start with. ME/CFS patients are generally working with loose hypotheses that may have some supporting evidence, rather than working with solid medical fact (mainly because there is a dearth of the latter when it comes to the ME/CFS research field).
Since I came down with ME/CFS, I have devised hundreds of hypotheses. These hypotheses just occur to me while reading articles on ME/CFS biochemistry, and most of the time I actually try to test out my hypotheses using supplements, and sometimes drugs that have a low risk profile.
In addition, there are hundreds of established treatment options developed by ME/CFS doctors and researchers that ME/CFS patients can experiment with. I have tried many of these too. Most of these treatments are tried and tested by these clinicians, and thus are (hopefully) low risk options (but obviously when you devise and take your own treatments, there may be more risks).
So much of the medical discussion on this forum is really about hypothesis and speculation, as well as trial and error testing of these hypotheses, even if people don't always make a clear distinction between when they are hypothesizing, and when they are stating an established medical fact.
One thing very particular to ME/CFS is that treatments that work very well for one patient may not work all for the next, and very often, will actually make them feel worse.
So logically — and this is a very important point — to maximize your chance of treatment success,
ME/CFS patients should take the time to test out as many treatment protocols as they can, because patients can make major improvements to their symptoms if they hit upon the right treatment. One experienced ME/CFS researcher (I forget his name) specifically advocates this approach.
But finding the right treatment for a patient is almost a random process of going through the dozens of established treatment options available (as well as any of your own devising). You have to keep going, until you find the treatments that work for you. This process may take years, and can be very time consuming (and can be cognitively challenging for patients with significant brain fog); but hey, with ME/CFS you're not going anywhere anyway, so you may as well dedicate your time to this. Ideally you would do this with an ME/CFS specialist, but this is not available to many patients.
Another very important benefit of this process of trying out different treatments is the psychological morale-boosting effects it generates. I know that when you are down in the dumps and feeling without any hope in the quagmire of this illness, then the prospect of a new treatment to test appears like shining light in the gloom.
Every time that I have plans to start testing a new treatment, I am filled with hope and optimism that it may be the answer for me. The morale-elevating power of this should not be underestimated. I notice that my mood is greatly improved by the prospect of a possibly beneficial treatment, and my days are then filled with purpose as I organize myself to start this treatment. I would wager that many other ME/CFS patients are the same in this respect.
The fact that from past experience most of the treatments I have tried make no difference, or make me feel worse, does not alter the morale boost that comes from pinning your hopes on the next new treatment. This morale boost is not the placebo effect, because when it comes to actually trying a treatment, I think most experienced ME/CFS patients are fairly objective (placebo is about expectation, and ME/CFS patients know from experience that a new treatment is just as likely to make them feel worse as better, so expectations are tempered by this knowledge). No, it's more about the raising of the spirits when there is a new treatment hope on the horizon.
So testing out new treatments has a twofold value: firstly, each new treatment you plan to try puts you in an optimistic mood, which is much needed in ME/CFS; and secondly, every now and then you do actually find a treatment that provides significant benefit, which is hitting the jackpot for ME/CFS patients.
Thus the discussion threads on this forum are really as much about the morale boost arising from pining hopes on a new treatment as they are about disseminating treatment protocols, medical facts, biochemical hypotheses and treatment anecdotes.
