Discussion in 'General ME/CFS News' started by Ember, Jul 29, 2013.
As you keep attacking a position that I do not have, I won't respond anymore to your posts.
I thought your position was that no choice need be made.
We can just call all the outbreaks "ME" indiscriminately.
Perhaps in a colloquial way, but for purposes of research, we need to primarily consider ME to be the evidence assembled by Ramsay at the time of Royal Free, or the minimum requirement of displacing the earlier paradigm simply reverts ME to a lower standard.
Which disqualifies a name for serious study, as the framework of what it represents can not be agreed upon.
"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."
Trying to understand what point your making. Are u saying the cfs outbreak in Tahoe in the mid 1980s is different to ME outbreaks previously to the tahoe outbreak??
Yes, in the sense that in addition to possessing all the primary determinants of ME, plus fulfilling the basic parameters of CEBV Syndrome.....the sophisticated testing by Cheney, Peterson and Komaroff identified Low NK cell function, B cell anomalies and a newly discovered virus "HBLV".
Although the Tahoe outbreak looked like the Royal Free disease, these abnormalities had not been tested in ME to find out if Tahoe Mystery Illness and ME were the same.
CFS was the "provisional term" selected while these comparisons were being made.
But when the CDC saw that hardly anyone was looking... they did just about the darndest thing.
This doesn't mean "CFS is based on nothing"
It means the CDC just allowed people to think so.
People who then said "There were other clusters, Tahoe was no different."
Which effectively neutralized the new evidence.
If they find low nk function in people with ME who werent in the tahoe outbreak, then whats your opinion on that?
Keep in mind that low nk function seems to be 'the' biomarker for cfs/me.
Im not sure if they are going to find a particular infection is the initial cause, my thoughts are the initial infection has somehow broken the immune system, then other infections such as ebv will reactivate, although ebv could also have been the intial infection that broke the immune system in some?? Also as peterson has mentioned, there is probably some type of genetic weakness that makes one sucseptible to cfs/me from these infections.
It has been mentioned before that cfs/me outbreaks arent mentioned anymore but are probably outbreaks like post SARS or post swine flu etc which have taken over from naming outbreaks as cfs or ME
Do u know of autopsys done on any cfs people from the tahoe epidemic?? Im wondering if they would show the same lesions on ganglion nerves etc as were found in say the royal free outbreak.
I dont think too many of these outbreaks have really been studied that much to compare them more closely in an immunological way. Also the timing of these outbreaks versus tahoe would have issues with technology available to them to do a straight forward comparison. eg i dont think ebv was even known about until after the royal free outbreak, i think it wasnt until the 1960s that ebv was discovered.
I was not apart of any outbreaks but i have the low nk function with ebv/cmv reactivation and other immune activation markers. Would i come under a xfs or an ME diagnosis or because i was an isolated case would my illness be something else?? The end product i have with the abnormal tests shows i fit into the cfs/me diagnosis. As has been mentioned before, i think sub setting patients will be important.
Its an interesting topic and i am interested in the old news videos you post on the tahoe outbreak.
I don't know of any autopsies on our cohort.
On page 90 of Osler's Web is the story of a lawyer from Zephyr cove who did not have the symptoms associated with the Tahoe malady that Dr Cheney decided to test anyway. It turned out he had the same B cell abnormalities, and then later went on to become a full blown case of illness.
So we knew from the start that the idea of treating the disease as if it were the symptoms was a flawed concept.
But since there is no means to get research into an illness that had no signs, it seemed prudent to go ahead with a definition consisting of a symptom complex as a "foot in the door"
The door got slammed on our foot.
As years passed and "CFS" went on to become well known, more and more patients made the argument that this outbreak doesn't matter anymore.
So it was never studied, nor were all the associated clues, circumstances and subclinical cases who are a ticking time bomb waiting to be triggered.
As time goes along, of the people who got the flu like illness and apparently recovered, it turns out they never really did, and strange things are going wrong with them.
But if the CDC/NIH won't research the serious cases who were part of an outbreak, these sporadic cases that aren't part of a spectacular cluster have no chance at all of getting research.
You can also try a Google Site Search
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