Author Topic: CDC Conference Call Tues. Sept.10 3:00pm  (Read 3589 times)

Patricia/Wildaisy

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Re: CDC Conference Call Tues. Sept.10 3:00pm
« Reply #30 on: September 12, 2013, 07:55:46 PM »
You are welcome, Geraldt52.

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It always amazes me how we all share so many symptoms, but are so different.  If I tried to do something like that transcript I'd turn into a complete space cadet, and it would likely have me out of sorts for several days.

This is so true.  And, for me, there are days when I can do something like transcribe an interview, and days when I cannot.  If it is one of those days when I can't, I just have to wait for another good day.
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bakercape

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Re: CDC Conference Call Tues. Sept.10 3:00pm
« Reply #31 on: September 12, 2013, 11:00:06 PM »
Two questions for anyone.

Were any Tick borne bugs looked for in this study? I did not hear him mention them.

And what is the deal with the 85% of pooled samples having retroviral particles being downplayed?  Also why was all the rest of the data presented in the manner of controls vs. patients but when he discussed the retroviral particles it was discussed as pooled samples and not discussed as comparing controls vs. patients?
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Robyn

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Re: CDC Conference Call Tues. Sept.10 3:00pm
« Reply #32 on: September 12, 2013, 11:19:20 PM »
And what is the deal with the 85% of pooled samples having retroviral particles being downplayed?  Also why was all the rest of the data presented in the manner of controls vs. patients but when he discussed the retroviral particles it was discussed as pooled samples and not discussed as comparing controls vs. patients?

Maybe because it's based on this hypothesis:  "given the previous experience with retroviruses in Chronic Fatigue"

What previous experience is that?  The retrovirus that was buried that Dr. De Frietas found?  Or maybe Silverman's own lab contamination that he sequenced instead of what was  also found via serology that cross reacted with SFFV - the antibody protein?

Oh and remember how the CAA said they would never support another retroviral theory, as they rub elbows with the CDC and NIH.   I just don't understand how a statment can be made like that " due to previous experience"  That does not sound very scientific.  Especially given the papers recently saying that xenografting using mlv retroviruses should be carefully considered for the safety issues in cancer research.  Because it could be possible to produce an infectious retrovirus.   I would think never say never.  Or is it just that it can never happen in "Chronic Fatigue" so don't bother to look?

But this was said to:
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We found retroviral sequences, but their relationship, at this time, to Chronic Fatigue Syndrome is unclear and, in fact, if I were to place bets and speculate.
 
Is science based on placing bets and speculating these days?

Now I will speculate and place bets that we are in store for several more years of  remaining in the Office of Research on Women's Health.  Instead of Fauci putting us back into the NIAID where we were and belong. So guess what there will be no funding unless we get out of our sick beds and lobby our congress to make things happen. Now that's a pretty sure bet!  Now wouldn't it just be easier on us to put us where we belong and can get funding?
« Last Edit: September 13, 2013, 04:47:27 PM by Robyn »

bakercape

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Re: CDC Conference Call Tues. Sept.10 3:00pm
« Reply #33 on: September 13, 2013, 12:41:04 AM »
Speculation and betting?   I agree Robyn it's not scientific

How about just looking at the data .   Now if the data shows 85% have retroviral particles vs controls that seems something big. 

Did they compare patients versus controls or did they just for some Odd reason just throw patients and controls together for this one test so they would not risk showing we have retroviral particles while most controls do not.    The fear being we would be backing up a similar result to the Alter paper. 

Anyone know if pooled sample mean they just threw controls and patients into the same testing and did not keep track of who was who.  If this is the case I find it beyond bizarre.
“Any man who is attached to things of this world is one who lives in ignorance and is being consumed by the snakes of his own passions”
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asleep

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Re: CDC Conference Call Tues. Sept.10 3:00pm
« Reply #34 on: September 13, 2013, 04:21:25 PM »
I've been skeptical of Lipkin since day one, but with each additional "contribution" of his it seems clearer to me that he was brought in to make the science match the policy. Retroviruses were never supposed to be on the table and will never be allowed going forward. They are pushing for the "hit and run" theory which will allow the government to dump us back in the hands of the biopsychosocial parasites.

How else can one make sense of Lipkin's unabashedly unscientific remarks about the retroviral sequences in this case? The only case in which I think these dismissive remarks are remotely scientifically acceptable would be if retroviral sequences were found in equal percentages of cases and controls. However, this can't be discerned accurately when samples are pooled (even if cases were pooled separately from controls). Furthermore, there are potential concerns about sample selection that could skew results too.

It's shocking to me how blindly, even enthusiastically, so many patients are following Lipkin through numerous unscientific turns to a land of permanent medical exile.

Patricia/Wildaisy

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Re: CDC Conference Call Tues. Sept.10 3:00pm
« Reply #35 on: September 13, 2013, 04:58:36 PM »
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I've been skeptical of Lipkin since day one, but with each additional "contribution" of his it seems clearer to me that he was brought in to make the science match the policy. Retroviruses were never supposed to be on the table and will never be allowed going forward. They are pushing for the "hit and run" theory which will allow the government to dump us back in the hands of the biopsychosocial parasites.

How else can one make sense of Lipkin's unabashedly unscientific remarks about the retroviral sequences in this case? The only case in which I think these dismissive remarks are remotely scientifically acceptable would be if retroviral sequences were found in equal percentages of cases and controls. However, this can't be discerned accurately when samples are pooled (even if cases were pooled separately from controls). Furthermore, there are potential concerns about sample selection that could skew results too.

It's shocking to me how blindly, even enthusiastically, so many patients are following Lipkin through numerous unscientific turns to a land of permanent medical exile.

Thank you for your opinion, Asleep. 

My opinion differs from yours.  I did not see any
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unabashedly unscientific remarks about the retroviral sequences
.  What I saw was a scientist who has made sincere and honest efforts to determine the cause of M.E.  I saw him reporting what he has discovered, honestly and openly, giving us information to help us understand our disease and what he has discovered that might be helpful to us. 

All of us speculate at times, including scientists and lawyers such as me.  The fact that we speculate and label it as such does not negate the informational statements that we make. 

Dr. Lipkin presented his speculation and he said it was speculation; he did not say that he had made a factual determination in the matter. 

Frankly, as a lay person without much scientific education, I am interested in his speculation.  He has a great deal of education and experience in these matters, and his opinion, which he stated as speculation, is very interesting to me because of his background.

You are, of course, entitled to your opinion; but remember, it is simply your opinion, unless you have evidence to prove it as fact.  I am also entitled to my opinion.  My opinion is that Dr. Lipkin is an extremely knowledgeable and honest scientist who has been doing his best for years trying to help M.E. patients.  I have seen no evidence that he has "sold out" anyone. 

I am not a "true believer" in a retroviral cause of M.E.  I simply do not have facts to support that belief.  What I do believe is that M.E. is a physical illness with a physical cause.  I do not think we get closer to discovering that cause by closing off promising avenues of investigation because they do not fit with what we would like to be true. 

It is obvious from your statements that you believe there is a retroviral cause for M.E.  That could, in fact, be true.  But do we really know?  The answer, at this point, is that we do not know.  And since we do not know, I appreciate dedicated scientists such as Dr. Lipkin investigating all the promising avenues of investigation toward finding the cause of M.E.  I would be unhappy if he closed off all the other avenues before having evidence that the particular chosen agent is the cause.

So, while I respect your opinion that M.E. has a retroviral cause, in my opinion this has not yet been proven and I am happy that Dr. Lipkin and other scientists are investigating other causal agents as well.
« Last Edit: September 13, 2013, 05:04:18 PM by Wildaisy »
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bakercape

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Re: CDC Conference Call Tues. Sept.10 3:00pm
« Reply #36 on: September 13, 2013, 07:29:42 PM »
Right now I tend to agree to an extent with you Asleep.  And like you WD I am very appreciative of the work Lipkin is doing as it is groundbreaking and affirming that we are truly Ill with a disease that greatly affects the Immune system.  That alone will help us.

But Retroviruses are the taboo.  He speaks of the History of Retroviruses and ME.  The history is that anyone who connects Retroviruses and ME in any way with Published research gets assaulted and their careers get ruined. Is he Immune to the pressure of this?  I'm going to guess probably not.  Would he ever dare publish that 85% of the pooled samples have retroviral sequences?
   Science unfortunately lives in a political climate and the climate is destroy those that link CFS to retroviruses.
Now what is hip and trending in research right now?  Well it's all the gut studies looking at microflora.   Why?  Because it's not controversial and no one will attack you for pointing out the different bacteria in the guts of patients.   It's a nobody is to blame situation and it creates no controversy in the scientific world. 
     I'd like to knowwill he be looking for retroviruses and other viruses in the microbiome of patients vs. controls or just bacteria's?  If not why not?
       Dr. Chia finds enteroviruses in the guts of patients.  Will Lipkin and company be looking for those also?    I hope Lipkin will answer our question in the future. I have a lot of them.
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Patricia/Wildaisy

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Re: CDC Conference Call Tues. Sept.10 3:00pm
« Reply #37 on: September 13, 2013, 07:33:16 PM »
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I hope Lipkin will answer our question in the future. I have a lot of them.

Did you send in your questions to be asked during the CDC Conference call?
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since

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Re: CDC Conference Call Tues. Sept.10 3:00pm
« Reply #38 on: September 13, 2013, 07:58:13 PM »
Personally I find it odd that none of the approximately two-dozen pathogens tested for were detected, except for HHV6 in a tiny proportion of samples. Some of these agents are quite common. For example, there really was no Epstein-Barr detected in 486 samples? Perhaps alternative testing techniques are warranted.
Quality over quantity.

Patricia/Wildaisy

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Re: CDC Conference Call Tues. Sept.10 3:00pm
« Reply #39 on: September 13, 2013, 08:19:26 PM »
According to the CDC, in reference to Epstein-Barr infection:

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In the United States, as many as 95% of adults between 35 and 40 years of age have been infected. 

http://www.cdc.gov/ncidod/diseases/ebv.htm  )

and

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EBV also establishes a lifelong dormant infection in some cells of the body's immune system.

Lipkin transcript:
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These particular tests are not capable of detecting historical infection.  The agent must be present in the plasma or the spinal fluid, in the case where we examine spinal fluid, at the time that we do that assay.

Dr. Lipkin said their techniques only detect active infection, not "historical" infections; but it sounds as though EBV should have been detected if it has a "lifelong" infection, although perhaps the fact that it is dormant means that it is not detectable by their testing.  Perhaps the fact that the infection is "dormant" means that it was not present in the plasma or spinal fluid at the time they tested it.

Since said:
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Perhaps alternative testing techniques are warranted.
I agree.  I believe Dr. Lipkin also agrees:
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Serology, which is looking for evidence of previous infections, which I think much of what we need to do in the future must focus, is not part of this report that I am making to you today.

The question that remains in my mind is whether or not the retroviral sequences they found were in samples from "CFS" cases or whether they were found in samples from both cases and controls.  If they were found in both, then they may not be implicated in the disease.  However, if they were only found in cases/patients, then there would seem to be an obvious connection with the disease.

From the transcript,
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We found retroviruses in 85 percent of the sample pools.
This sounds to me as though he is saying that the retroviral sequences were found in both cases and controls, since he said "85 percent of the sample pools."
« Last Edit: September 13, 2013, 08:32:04 PM by Wildaisy »
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bakercape

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Re: CDC Conference Call Tues. Sept.10 3:00pm
« Reply #40 on: September 13, 2013, 08:56:09 PM »
Did you send in your questions to be asked during the CDC Conference call?

My questions were generated after hearing what he had to say about the results and his speculations on them. 

Now I have questions after his call that I never would have had beforehand.
“Any man who is attached to things of this world is one who lives in ignorance and is being consumed by the snakes of his own passions”
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cath

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Re: CDC Conference Call Tues. Sept.10 3:00pm
« Reply #41 on: September 13, 2013, 08:56:44 PM »

Since said:I agree.  I believe Dr. Lipkin also agrees:
The question that remains in my mind is whether or not the retroviral sequences they found were in samples from "CFS" cases or whether they were found in samples from both cases and controls.  If they were found in both, then they may not be implicated in the disease.  However, if they were only found in cases/patients, then there would seem to be an obvious connection with the disease.

As I recall it correctly the samples were from one sourrce so I want to know it is not connected to sample handling.

bakercape

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Re: CDC Conference Call Tues. Sept.10 3:00pm
« Reply #42 on: September 13, 2013, 08:59:15 PM »
As I recall it correctly the samples were from one sourrce so I want to know it is not connected to sample handling.

My question is why did he report on these results differently?  All the other results he talked about patients vs. controls.

There is obviously a huge difference if it was 85% of patients and very little in controls or 85% in both controls and patients tested separately.

Hopefully this gets answered.

« Last Edit: September 13, 2013, 09:01:46 PM by bakercape »
“Any man who is attached to things of this world is one who lives in ignorance and is being consumed by the snakes of his own passions”
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Patricia/Wildaisy

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Re: CDC Conference Call Tues. Sept.10 3:00pm
« Reply #43 on: September 13, 2013, 09:44:32 PM »
I asked Dr. Lipkin about the retroviral sequences and this was his reply:

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The sequences were not specific for CFS. We find them in many people with and without disease.

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Robyn

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Re: CDC Conference Call Tues. Sept.10 3:00pm
« Reply #44 on: September 13, 2013, 09:55:47 PM »
It should have been clearer I think what he meant by sample pools.  Given that we also have to think about a potential retrovirus circulating in the population for, now how long have patients been sick. Now hypothetically give it 30 years or so of an infectious mlv retrovirus running rampant.  It might not just be ME/CFS patients who could have a potential infectious retrovirus/s.  Anyone with either cancer or a neuroimmune disease could have it.  And those who have't come down with an illness yet, that mlv retroviruses could produce could potentially be positive.  And then there are some that could be positive that won't get sick.  Like the 5 % who don't with HTLV1. I think that just about covers everyone, or at least anyone who wouldn't be infected or infected their children yet. That is if one of these retroviruses might have gotten lose from a lab. Now that doesn't happen does it? Maybe we should ask cancer research since they said they should be careful with mlv retroviruses.

He also said it is unclear what the 85% means, but unlikely it's anything that would pan out given the previous history in Chronic Fatigue. How about xenografting in cancer research?  Is that possible?
« Last Edit: September 13, 2013, 10:10:40 PM by Robyn »