August59
Daughters High School Graduation
- Messages
- 1,617
- Location
- Upstate SC, USA
Andrea's blog says she is on Ampligen.
The problem can be traced to a time when all researchers could be assumed to read Latin, mutatis mutandis. A mutation is merely a change. In common use, we emphasize mutations in germ-line cells involved in sexual reproduction, but ordinary somatic cells can have mutations in their DNA which are only inherited by cells resulting from those cells by mitosis. Some of these, for example, can cause cancer. I got the term from a current article on the specific subject of changes caused by that enzyme.
It may be significant that in the interview Judy *only* alluded to something that is being published in September, when it has been fairly well established that something is being published in August. The "two papers" theory would explain the seeming discrepancy in dates; and she may have had clearance to mention only the results of the September publication. Which may very well be (1) work outside the original scope of the FDA/NIH study (2) completed at a later date (3) appearing somewhere other than PNAS.
As a matter of fact, I ran across a piece by Francis Crick in which he admitted he didn't understand the precise meaning of dogma when he first used it. (You might say he is ''not into religion".) It simply turned out to be unusually appropriate for the way it has been used.Hi anceindaze,
There is a reason its called the central dogma I think, one lecture they tell you about it, next lecture they tell you it is wrong ... dogma in the old fashioned sense...
You couldn't keep researchers away from this bug if you beat them with clubs.
Last time I checked on Gallia they were into division and parties tre bien, (though I suspect Italia has an edge in this regard.)Anciendaze, I'm very interested in what you're saying about why the deniers couldn't find XMRV, but can't quite follow it all. Could you possibly rephrase/take it down a notch to the level of "reasonably well-educated layperson who took biology 20 years ago in college"?
p.s. *I* took Latin in high school, I don't know what they're teaching the kids these days. Gallia est omnis divisa in partes tres.
Andrea's blog says she is on Ampligen.
So, persons who actually know the science, riddle me this: If research into a viral cause of CFS *hadn't* been quashed back when Elaine DeFreitas's work was rubbed out, is there actually anything about the state of the science at the time that would have prevented researchers from detecting XMRV? Is there something about the state of the science *now* that made this the soonest possible time XMRV could have been detected?
Because I strongly suspect that's going to be the cover story from now on.
I'm going to take this in stages, after reminding people I am not an authority. What you get from me are the words I post, nothing else. I do not have any relevant degrees or certifications. These are the opinions of an affected individual. You are free to check them however you can.Ok, couple questions for anciendaze or alex or anybody who might be able to weigh in.
First - we know the WPI picked "highly viremic" (I suppose one should properly say retroviremic) patients for the Science paper - and the deniers were biased toward picking people *without* "signs of active viral infection."
Does anyone know exactly what signs we are talking about? What made some people look more "viremic" than others? Is it just the typical symptom set of sore throat/fever/swollen lymph nodes that "looks" like an active viral infection, or was it a matter of picking people who were more debilitated, i.e. housebound/bedbound? I'm assuming they would have excluded people with co-infections - or would they?
This empirical definition hardly seems to be a definition. On the one hand, it claims to implement the Fukuda definition, on the other we have conflicts with the CCC. After considerable effort I had decided any patient meeting the CCC will automatically satisfy the Fukuda definition. That is CCC is a subset of Fukuda. With the assertion that meeting CCC might be exclusionary, I am now at a loss to describe the relationship, as viewed by the CDC group. Attempting to pin down the empirical definition in print is an exercise in frustration. They did not even get good repeatability themselves. In clinical practice, it is manifestly unusable.
With the median hours per week worked for one cohort in Wichita put at 40, we have the possibility of "CFS patients" working overtime and not seeing a doctor regarding fatigue. On the face of it, this sounds like a sizable part of the healthy general population. I have the distinct impression this is like the definition offered by Humpty Dumpty:
The whole surrounding passage in 'Through the Looking Glass' has considerable relevance to CFS definitions.`When I use a word,' Humpty Dumpty said, in rather a scornful tone, `it means just what I choose it to mean -- neither more nor less.'
`The question is,' said Alice, `whether you can make words mean so many different things.'
`The question is,' said Humpty Dumpty, `which is to be master -- that's all.'
Where does the relative absence or presence of specific *neurological* symptoms play into all this? Undoubtably the WPI picked some people with pretty serious neurological manifestations, and we know the CDC tends to consider neurological symptoms exclusionary for CFS.
I'm going to cut off some of that question, because it is based on a false assumption. Earlier outbreaks with the same symptoms were not merely reported, but actively investigated with the technology available at the time. One particular outbreak, in Punta Gorda Florida, was investigated by a CDC Epidemic Investigation Service team which not only talked to doctors in the community, but went around knocking on doors to find the 50% of patients not reported by physicians. They wrote up their findings and published them in NEJM in April 1959. The same issue contains an investigation by Alexis Shelokov of an outbreak at Chestnut Lodge Hospital in Rockville, MD, as well as a survey article on prior outbreaks. The goal was that, when the next outbreak took place, investigators would be prepared to go in early and capture data which had eluded these investigators. All three people went on to distinguished careers, demonstrating they were not flakes. In this context, the squandered opportunities at Incline Village or Lyndonville are especially poignant.It would be awfully interesting to catch an XMRV infection in its initial stages, which I don't think anyone has done or tried to do yet. After all, if you have an acute flu-like onset, what reason would you have to think it's anything other than the flu? ... until you've gone through the long slow nightmare of it NOT GOING AWAY...
I'm going to trim some of these statements, not because I disagree, but because this post is already long.I can envision a scenario where the CDC et. al, the whole chorus of deniers (not just of XMRV but of the idea that there ever was a viral infection involved in CFS) are going to attempt to cover their exposed hindquarters with a lot of tsk-tsking about how of COURSE nobody would have been able to detect XMRV before, it is only now with our modern knowledge that it was detectable, what a shame it was *impossible* to detect any sign of a viral infection before 2009 or so...
Here's the real kicker in that episode. Before she crashed and burned, Elaine DeFreitas had TEM micrographs showing more than one virus. The really interesting one for me was a C-type virus with a diameter of approximately 70 nanometers. This pretty well shouts retrovirus, and one expert who saw the pictures said so at the time. The whole series of pictures has not, to my knowledge, been published anywhere. What I would love to get my hands on is the picture showing a virion inside a mitochondrion. MuLV is known to infect mitochondria, and I don't think any other virus is known to do this. All by itself, the discovery of a retrovirus in human beings which infected mitochondria should have been a major result. Yes, it was possible; it was done.So, persons who actually know the science, riddle me this: If research into a viral cause of CFS *hadn't* been quashed back when Elaine DeFreitas's work was rubbed out, is there actually anything about the state of the science at the time that would have prevented researchers from detecting XMRV? Is there something about the state of the science *now* that made this the soonest possible time XMRV could have been detected?
Because I strongly suspect that's going to be the cover story from now on.
I'm going to cut off some of that question, because it is based on a false assumption. Earlier outbreaks with the same symptoms were not merely reported, but actively investigated with the technology available at the time. One particular outbreak, in Punta Gorda Florida, was investigated by a CDC Epidemic Investigation Service team which not only talked to doctors in the community, but went around knocking on doors to find the 50% of patients not reported by physicians. They wrote up their findings and published them in NEJM in April 1959. The same issue contains an investigation by Alexis Shelokov of an outbreak at Chestnut Lodge Hospital in Rockville, MD, as well as a survey article on prior outbreaks. The goal was that, when the next outbreak took place, investigators would be prepared to go in early and capture data which had eluded these investigators. All three people went on to distinguished careers, demonstrating they were not flakes. In this context, the squandered opportunities at Incline Village or Lyndonville are especially poignant.
As I understand it, the investigators were on the ground while new cases were still turning up. By going door-to-door they found people who had not yet gone to a doctor. Unfortunately, this was before any human retrovirus had been identified. They were hoping whatever it was, and the mode of transmission, would be more evident early in an outbreak, and expected their work to bring in future investigators early, prepared and informed.Were they actively investigated as soon as people went down sick - i.e. within 14 days of initial symptoms? That's the question I was getting at. I don't have a real sense of how often the "acute onset" makes people suspect anything other than the flu, or how often the first 14 days of infection are serious enough to warrant hospitalizations. (I didn't really have a well-defined acute onset period myself, but I had a "coming down with the flu" feeling for a number of weeks before I went down unrecoverably.)
I'm afraid that 1956 outbreak fell just below the threshold for storing samples. There are samples from the Lyndonville outbreak, and Dr. Bell is consultant in a study to examine them.I don't suppose they saved any of that blood from those early outbreaks? Ha, I know I'm a dreamer...ever since learning from Prof. R. that they have identified HIV in blood that had been stored since 1959 and 1960, I have this fantasy that there are banked samples somewhere from early outbreaks of whateverthisthingis...
Drs. Bell and Cheney should know.And speaking of antiquarian zeal, where *are* Elaine DeFreitas' pictures? At Wistar?
Have you ever been able to use the line on him from the joke about the economist who falls into a pit in the jungle. "No problem. Assume a ladder." ?p.s. you just freaked me out by channeling my dad, who is an economist. I've been hearing him say "Making predictions is difficult, especially about the future" my WHOLE LIFE.
The Lo/Alter results have already been reported by Alter himself to confirm the WPI's finding that "XMRV and its variants" are in the blood of patients with chronic fatigue syndrome and healthy blood donors. Lo refers to these as "MLV-related virus gene sequences" in the title of his talk at the September conference. Therefore , the delay in publication has simply allowed the CDC to influence NIH officials to use its phony "CFS" definitions to hurt the patients. More importantly the delay (and internal review and study by the Reeves acolytes) has allowed all of the authors of the negative studies to prepare excuses as to why they couldn't find XMRV and its variants (MLV-related virus gene sequences). The WPI has publically advised every scientist that if you use the right primer sets (Lombardi) you will find more retrovirus. If as a "scientist" you only want to find the synthetic clone ("VP62") and use the wrong patient cohort, you can design a "study" to find nothing.
Are you saying that the CDC is somehow influencing the NIH to use the empirical definition to find patients for its studies? What are you referring to? I don't get it?Therefore , the delay in publication has simply allowed the CDC to influence NIH officials to use its phony "CFS" definitions to hurt the patients. More importantly the delay (and internal review and study by the Reeves acolytes) has allowed all of the authors of the negative studies to prepare excuses as to why they couldn't find XMRV and its variants (MLV-related virus gene sequences).