With respect to publishing studies, yes I agree this is very important and should be done. However please tell me why the majority of ME physicians who currently treat patients in their clinics and have done for years, have not yet published research on their use of medications (whether licensed, unlicensed or off-label) for the treatment or symptomatic management of ME? This may be another good topic thread to discuss. I wonder if it's due to lack of funding, lack of time or due to the heterogeneity of treating ME patients.
Doing a quick literature search I have seen that the likes of Nancy Klimas, Jose Montoya, Daniel Peterson, Lucinda Bateman, Derek Enlander, Susan Levine etc have not published papers on use of specific medication in the treatment of their ME patients. Their published papers all seem to be about the biomedical research they have conducted with the goal of developing a biomarker or furthering the understanding of the pathophysiology of the disease. Yet they all run clinics and treat patients currently. Because there's so few of these doctors, people do have to travel thousands of miles to see them if they are able to. Their individual approach to treatment is not really standardised. Therefore KDM is of no exception.
All of these doctors do use medication for the treatment of ME or it's complications and this is always dependent on what they find in that particular patient e.g. orthostatic intolerance, re-activated viral infections, SIBO etc. However they do all share their differing treatment approaches at the international ME conferences. KDM has presented his clinical findings and treatment approach on numerous occasions to his colleagues.
@Vassie - If KDM diagnoses SIBO in some of his patients. He uses rifaximin or oral vancomycin, not IV. Rifaximin is commonly used worldwide and by NHS doctors for the treatment of SIBO despite it not having a license for this indication. If KDM detects abnormal levels of clostridia in the stool then he uses oral vancomycin again off label. However these antibiotics are non-absorbable so do not have systemic effects. But yes they will alter the gut microbiome which can have numerous physiological effects on the patient, but these are his intentions. He closely monitors response to treatment with repeat stool tests. Of course he is well aware of antibiotic resistance but tries to minimise this occurring by using very short pulsed antibiotic courses in combination with much longer courses of prebiotics.
In terms of gammanorm - he does screen IgG levels prior to treatment to determine if there is coexisting CVID or not. A few studies, even one from Fluge and Mella have detected lower IgG3 levels in ME patients (this may or may not have any clinical significance). However he is using gammanorm for it's immunomodulatory action. No one yet knows how immunoglobulins work in autoimmune diseases however they are used for many other disease states. There are a few published studies and anecdotal use in ME. From what I have read some people benefit significantly while others do not. This may be down to subtype differences in the ME population.
KDMs main focus is to reduce gut inflammation, use immunomodulatory treatments and modify the gut microbiome (if SIBO or high levels of pathogenic bacteria are present). This is all in the hope of providing symptomatic relief to his patients which he does routinely see otherwise he wouldn't be treating patients at all. He has devoted his whole career to supporting ME patients, does this not warrant a little bit of respect?
