Hi Hip, count me in for 2 packets of the Russian vaccine.
Sure thing. I am probably going to wait a week or two before instigating the process with my Ukrainian contact of buying and shipping these vaccines to interested ME/CFS patients like yourself, just to give enough time for any other patients who may also be interested in buying to see this thread.
And in two weeks time, I will have been on the Russian vaccine for a month, and I hope by that time I will start to see health improvements, if I am a responder. So I may then be able to provide indication whether the vaccine is working.
Russian acquaintance looks up the Russian manufacturer (Medgamal) and found that they were a long standing, very reputable company.
Yes, that's impression I got. Some of Medgamal's history is found on
this page of their website (I find the Google Chrome browser provides the best way to translate Russian webpages to English).
I premume this may have already been done, but I have the intention of contacting the Rituximab trial team in Norway to make them aware of Staphypan and its efficacy before it was discontinued. The fact that it helped ,and it's possible action,may help them further in understanding the mechanics of CFS/ FIBROMYALGIA. On the surface it would seem that Staphypan works further upstream in the biology of this illness than Rituximab. Simplistically the theory that the B- lymphocytes are autoimmuning the blood vessel endothelium would seem to have been cut short by the Staphypan vaccine.
That is a very good idea,
@Arvan. It is quite possible that Fluge and Mella in Norway may not know about this Staphylococcus vaccine treatment of ME/CFS, so it's definitely worth contacting them.
@CaptainA told me that he recently spoke to Prof Jose Montoya in Stanford University, and asked him about the Staphylococcus toxoid treatment of ME/CFS, but Prof Montoya had not heard of it. So we cannot not assume that all ME/CFS researchers will be familiar with all ME/CFS treatments.
In terms of the possible autoimmune-modulating effects of the Staphypan vaccine, I spent a while looked into the physiological effects that the toxoids in the Staphypan vaccine have, and my hunch is that the
enterotoxin B toxoid in the vaccine may be the one that is helping ME/CFS, through an immunomodulatory mechanism. Enterotoxin B binds to the CD28 receptor, and this CD28 receptor has been linked to autoimmune disease (CD28 controls differentiation of regulatory T-cells, which play a central role in maintaining immune self-tolerance).
The CD28 receptor super-agonist drug TGN1412 is being tested as a treatment for autoimmune diseases. But TGN1412 was also the drug in the 2006 Northwick Park Hospital London clinical trial disaster, in which several young men became very ill with organ failure. So activating the CD28 too much can be very dangerous. After this clinical trial disaster, this TGN1412 drug is now making a
comeback, using doses 10 to 20 times less (and being renamed as TAB08).
Hip, can you ascertain how the Russian vaccine's active ingredients stack up against Staphypan's.
At the moment, I don't know whether all the toxoids known to be present in the Staphypan vaccine (namely Staphylococcus alpha toxin, enterotoxin A, enterotoxin B, enterotoxin C and toxic shock syndrome toxin 1) are also all present in the Russian vaccine.
It was
this study by Zachrisson, Gottfries et al 2004 (full paper
here) which determined the ingredients of the Staphypan vaccine. But I have no info as to which Staphylococcus toxoids are present in the Russian vaccine.
So the only thing we can do at the moment is try the Russian vaccine, and see if it helps ME/CFS and fibromyalgia as effectively as the original Staphypan vaccine. If it does, then that would indicate the ingredients are likely the same or very similar.
