What is happening with the CCI-hypothesis in the ME/CFS community closely resembles what happened in Italy (mainly, but not only) with the CCVI-hypothesis of Multiple Sclerosis (MS). There was this new avenue, completely unexpected and very fascinating (to me, at least), that linked MS to a defect in the venous system of the neck, named Chronic cerebrospinal venous insufficiency (CCVI) by the Italian researcher Paolo Zamboni . Several MS patients underwent surgery to correct one or more veins of the neck and described themselves as cured of MS thanks to this surgery. Among them also a prominent patient advocate, Pavarotti’s wife, who gave enormous publicity to this kind of technique .
The diagnosis of CCVI was somehow subjective, and only CCVI-literate doctors could do it properly. The same applied for the surgery. Several surgeons in private practice started doing the surgery on MS patients, earning a lot of money in a very short period of time.
Does this seem familiar?
After a decade and several well-designed studies, no correlation between CCVI and MS has been demonstrated , .
I am not saying that there is no correlation between CCI and ME/CFS. We don’t know yet. I personally find interesting these new hypotheses about the effect of abnormal mechanical strains on the functioning of the brainstem and the possible link to ME/CFS-like symptoms and I am trying to study this new field (see this blog-post), among all the other hypotheses about the aetiology of ME/CFS.
What I would like to point out with this post is that it is perfectly possible that several patients improve with this kind of surgery even in the absence of any link between CCI and ME/CFS. This is a weird (and fascinating) phenomenon that we have already seen in other diseases. It always has the same pattern: a somehow subjective diagnosis that only a few physicians can do, a surgery or a drug that many physicians are warning against, a huge amount of patients who say that they have recovered after the intervention.
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