How I wish that I had known 18 years ago about pacing and the leaky gut diet and supplements. I might have had my life back long ago and avoided some of the worst effects of this illness on my health and circumstances.
For myself, I swear by pacing. I believe that pacing transformed my experience of my illness, and I believe it created a beneficial biological environment for my symptoms to stabilise and improve over the long-term. After learning pacing, it led me to a stable period of my illness that was not intensely distressing (which was an enormous relief). But, that didn't stop me accidentally over-doing my activities one day, and experiencing a long-term crash from hell. So it is in no way a cure, but it helps me manage my symptoms, and experience stability and gradual improvement.
However, anecdotal evidence of benefit is not the same as proper research trials. Some patients swear by the Lightning Process and Nickel Therapy etc. Some find magnesium and B12 helpful. Some find diet changes helpful. And some, like me, swear by pacing. But that doesn't mean that those interventions are actually helpful for ME/CFS. It just means that some patients believe that they have found benefit from those interventions (which they might have done.) Some people find benefit from homeopathy, but it has been proved that homeopathy has no medical benefit. So we cannot know if a treatment actually works for a range of patients until it has been rigorously tested in a carefully controlled environment, otherwise known as a clinical trial. That's not to say that people shouldn't engage in activities that work for them, if they find something helpful, that isn't harmful and doesn't drain them of money.
A theory about leaky gut is just a theory until there is good evidence behind it. I don't personally believe that the answer to my illness is in the gut. Actually I strongly believe that we will not find the answer there. But that's just my opinion partly based on my personal experience, and I wouldn't want to hold back any research that was looking into enteroviruses etc.
I would not want to discourage anyone from trying a licensed treatment as long as they had a very full understanding of the possible adverse effects, and believe strongly that it is usually better to try safer options first.
Yes, I totally agree. We've got to work out the exact
risk of harm, and the exact
potential benefits of Rituximab. Then patients and clinicians can make informed decisions about it. We've got to have access to all the information, and the risks of harm have got to be transparent. We'll only get this info from clinical trials.
Many ME/CFS patients have incredibly distressing and restricting symptoms over a very long period of time, and I think it might be very difficult to convince many such patients to avoid a medication that promised a 50% chance of improvement, even if there is a small risk of harm.