Discussion in 'General ME/CFS News' started by Ember, Jul 29, 2013.
2 things that jumped out at me from this:
1) What are "cytokine blockers"???
2) He said he's been combining antiviral + immune boosters like Ampligen or ivig for some time. But I think this can only be done in NV, or rather "by Dr Peterson"... because when I did Ampligen with Dr Enlander last year I was told that Hemispherx just would not permit someone in the AMP511 study to also take antivirals--you couldn't enrol in it. Now frankly, I understand how someone might somehow manage to sneak an oral antiviral into their treatment at home while still receiving Ampligen (I'm not saying this should be done, just that people can do it), but it's quite a feat for Dr P to have managed to keep his patients on both antivirals and Amp without having them kicked out of AMP511(!!!).
Anyone know why this won't play--says it is "private." Same if you go directly to YouTube.
It sounds like MECFS Alert made a mistake in publishing the Dr Peterson interview and replaced it with the Dr Lombardi interview. This was explained on their FB page. i suspect that Dr Peterson's interview will be re-published later.
There is a summary/transcript of the "missing" interview with Dr. Peterson here--it is very interesting BTW, covering some of his treatment protocols, to research, to the need for centers of excellence:
thx sushi--may i take this opportunity to ask if anyone really knows what "cytokine blockers" are, since I just can't seem to be able to google the answer.
I'm guessing he means something like kineret - an il-1 blocker. But that's totally speculation on my part.
They probably mean cytokine inhibitors.
This interview has been posted again as Episode 50:
Great interview. Great to hear that he is trying combinations of therapies to treat both the immune system and pathogens at the same time.
Somehow they keep forgetting Los Angeles 1934.
Great interview though.
We are aiming to set up a center of excellence here in Rotterdam, but that requires some other major steps first. We are so far behind.
If it was a powerful new virus that swept through and caused CFS, where are the other large outbreaks that took down hundreds of people?
Why did it start in '84, rage through the summer of '85 and then vanish?
And why "Why HERE?" Why did it hit NORTH SHORE but not SOUTH SHORE, which is a hundred times more populated?
Los Angeles 1934 was created by polio vaccinations at the hospital, and settled by a massive lawsuit.
That situation is not comparable to the other outbreaks.
Funny then that Gilliam does not mention this.
The first attempt to even develop a polio vaccine began in 1936, AFAIK, i.e. 2 years AFTER the Los Angeles outbreak.
Dr Byron Hyde describes it in his Fall 2012 lecture, and says the survivors were forced to sign a non disclosure agreement to get their settlement.
I was stunned, for if this is true, the L.A Hospital can not be considered the same as the other outbreaks.
Immunization, but not vaccination. Big mistake, but it remains an outbreak of ME.
Whatever they were immunized with, this wasn't something that happened in other outbreaks.
It doesn't make sense to re-engineer "ME" back upon a situation that doesn't match the others, then use the reversed concept as the standard to examine the original basis for the "ME" entity.
Regardless, "CFS" was based on an outbreak that possessed all the primary determinants of ME, as per Ramsay, but had too much newly discovered evidence to be thought of as identical. (Described in Osler's Web and many other places)
It doesn't make sense to discard all that evidence, just for the privilege of calling ones illness ME.
You insist on a choice that need not be made. It is possible to apply the agreed on terminoloy, i.e. ME, and yet not discard the evidence from individual outbreaks. Akureyri and Tapanui also have evidence specific to those outbreaks, for instance.
The choice would have to be made in order to clear up the confusion between ME and the Los Angeles outbreak.
ME was coined in an attempt to move "Epidemic Neuromyasthenia" to a new level.
In order for ME to be on "firm ground" it is necessary to conceive of the new name as including the refinements that went along with the renaming.
Saying "it's all the same" demolishes the attempt to refine an illness entity by moving it back to the old level.
The Clinical Syndrome Variously Called Benign Myalgic Encephalomyelitis,
Iceland Disease and Epidemic Neuromyasthenia
E.D. Acheson, D.M., M.R.C.P.
The Case for a Clinical Entity
It is significant that the first review of the
syndrome under discussion was entitled, “Not
poliomyelitis”45; the second, “A new clinical
entity?”22. In later articles entitled, “Epidemic
myalgic encephalomyelitis”46, “Benign
myalgic encephalomyelitis”46a and “Epidemic
neuromyasthenia”15,16, the authors considered
themselves on sufficiently strong ground to
describe and name the syndrome. This
sequence indicates that the first and minimum
requirement in the definition of an entity is the
essentially negative one of showing that the
syndrome is not an unusual manifestation of a
disease already recognized. Later, as evidence
accumulates, it may be possible to define the
disorder in positive terms.
The entity called "CFS" started as a flu-like illness but "evolved" to something else.
That is one truly amazing clue.
This alone tells us that the triggering pathogen is not what we need to be looking for.
"This seemed to be evolving, before our eyes, from a flu-like illness into something else"
-Dr Paul Cheney
"... and it seemed to be spreading. Through the local hotel and casino, two area high schools, members of a girls basketball team."
-Dr Nancy Snyderman
"That's when we wondered, Hey, maybe we ought to call somebody. This is really unusual."
-Dr Paul Cheney
You can also try a Google Site Search
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