If you scroll down on the agenda listed below the video, Andrew is Public Comment - Speaker 3. Clicking on that will take you directly to Andrew at the 4:11 mark.
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AJ later relapsed and decided to try homeopathy again, since it seemed to work so well the first time around. Only after several years of treatment with no overall change, AJ realised that homeopathy was not having an effect on his disease. The placebo effect wore off. In hindsight, the initial treatment success was likely to be a coincidence.
I'm surprised you used the above example to make your points. I'm not sure if others agree, but I feel one of the hallmarks of ME/CFS is: various kinds of therapies (natural and conventional) often help improve symptoms for a while, but eventually the beneficial effects wear off, and we're usually no better off than before.
This has happened to me on numerous occasions, and I’ve always found this to be confusing and frustrating. I read an argument once that this very phenomena was one of the strongest cases to be made for CFS being psychosomatic. You might not be surprised to hear that I strenuously disagree.
If this had happened to me with EVERY therapy I tried, that might be a different story. But I only got significant results from perhaps 10% of the things I've tried. Of that 10% , I would guess that only 1/10 of them gave me what I would call lasting benefits. That's a mere 1% of all the modalities tried.
I’ve long viewed myself to be relentless, resilient and resourceful. I’ve researched and experimented with so many different things over several decades, and feel the temporary or permanent results I’ve achieved were the results of my own persistence and observation of what worked and what didn’t, and not because of coincidence or placebo affect.
The reality is that most of these stories are either coincidence, or homeopathy only works for those with somatisation type disorders. You guys clearly don't fit into either of these categories - the fact is that homeopathy isn't curative for CFS, or you guys wouldn't be here having this discussion.
I don’t believe the jist of this discussion is whether homeopathy is curative for ME/CFS, although I do believe if administered early on, there’s a good chance it could be. It seems to me we’re discussing whether homeopathy might be effective in addressing some of the “layers” of dysfunction/dysregulation involved in ME/CFS. In this regard, I believe the approach and practice of homeopathy is far different from that of modern conventional medicine. As such, I believe they need to be evaluated differently.
For instance, different people with the exact same symptoms of ME/CFS (or any other disorder), will likely be given different remedies. Depending on the discretion and expertise of the practitioner, a specific remedy may be strengthened or weakened over time. At a certain point, this remedy may be substituted for another one, based on the progression of results (or lack thereof). When I view these differences, it makes me think that double-blind testing (which has its own limitations) of homeopathic remedies is not the best way to evaluate its effectiveness.
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I read a story once about a U.S. government health care official who had the opportunity to talk with the head of a major medical facility in Europe specializing in various types of oxygenation therapies. This official was intrigued enough to suggest that perhaps they “subject” their work to the “rigors” of double-blinded studies.
The head of the medical facility said he would not consider it. Why? Because his facility (and other similar ones) had already successfully treated millions of patients over many decades. He said he would consider it barbaric to withhold known successful treatment from somebody who may desperately need it. He would instead depend on their reams of accumulated results and continue to use the low-cost treatments he found so effective.
It’s a different way of looking at things. I guess to each their own.
Best Regards,
Wayne
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Addendum
When I finally applied for SSDI back in 1997 (after 15 years of CFS), I was required to meet with a psychologist for evaluation (the one I visited was considered a “tough nut”). When he questioned me about what I was trying to do for myself, I gave him a short abbreviated list (about 20 or so at the time), which for some reason he found very interesting. He asked me if he could keep the list, which I assume he forwarded on to SS.
He eventually sent a supportive letter to Social Security in which he said I either had an obsessive/compulsive disorder, or actually had a real physical illness known as CFS. Either way, he considered my situation credible and recommended my application be accepted. So after all my CFS years, I was finally able to receive SSDI. Interestingly, when I saw why my application was approved, it stated “somatoform disorder”.
I was pretty unhappy about that, and briefly considered making a fuss about it. But then I realized it wouldn’t make much sense to make a stink about a complex process which ended with me getting benefits. Leave well enough alone, right? :Retro smile:
I have to say however, I still feel a bit rankled when anyone suggests, however gently, that I, or other PWCs are sick (or getting better) because of somatization. I know by conventional medical thinking, most of us would likely fit in that category, but it's clear to me I should utterly reject this sort of perspective.