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CDC XMRV Retrovirology Study on CFS Published

pollycbr125

Senior Member
Messages
353
Location
yorkshire
These quotes were posted to the Association's FB page this morning

Study of XMRV in CFS published today in the journal Retrovirology by authors at the CDC, Robert-Koch Institute (Germany) and Blood Systems Research Institute (USA). More to follow later today about this study and the status of the study from NIH.

. . .

Dr. Alter and many others studying XMRV and related blood safety issues are attending the 31st meeting of the International Blood Society Transfusion meeting in Berlin (June 26-July1), so the NIH Office of Comm. and Public Liaison provided his statement. We'll pass along more information about the status of the paper as soon as it is available.


:

I too have put a post on the CFIDS wall


http://www.facebook.com/CFIDSAssn

Sorry but this is turning into a farce posting little dribs and drabs on facebook is not good enough. We need official statements of substantial length to explain the exact situation as it stands at the moment from all parties involved . This is becoming extremely frustrating for patients and my worry is that this will make some patients relapse badly . Everything is up in the air with nobody really knowing what the hell is going on . this is not aimed at you personally please do not take it that way , but I am in contact with several patients and there are patients in floods of tears at this moment in time , patients becoming severly depressed , I am seriously concerned that the lack of information it is putting patients at risk.
 
Messages
13,774
LMAO!!!! Thanks for that!

If I wasn't able to find the nonsense the surrounds CFS funny it would have driven me crazy long ago.

At this point, you've got to laugh.

I'm taking an internet break to go enjoy some music and do some tidying. I was getting sucked in to quater-hourly google searches. Take care of yoursleves people.
 

bullybeef

Senior Member
Messages
488
Location
North West, England, UK
I our state of our health has never bothered them, and I doubt they're going to start to care now, polly.

HTLV-2 has been left to it's own devices for 30 years, and I bet there are many people out there whom are infected. I mentioned HTLV-2 to my GP, and suggested they still don't know exactly what it does. She replied, "so they say!"

Maybe they’re thinking about leaving XMRV to chance, they’ve done it before. I just think too many people are infected with XMRV, and it has gone past the tipping point of control. If they cannot stop or prevent it, why not ignore it then. They are probably saying, “Well people aren’t dropping dead of it in the street!!”
 

muffin

Senior Member
Messages
940
Kathleen Sebelius Secretary, US Department of Health and Human Services (DHHS)

No more on blood donation, etc. What we now must do is to get to the DHHS and insist that the two studies by FDA and NIH go out as is and NOT by a group consensus to save face. We need to beat the drum that science must prevail and NOT politics or butt-saving for CDC and the Federal government health organizations.
Does anyone have Sebelius' email address? HHS "owns" the CDC, FDA and NIH. Right?


http://www.hhs.gov/ogc/contact/contacts.html
Kathleen Sebelius Secretary, US Department of Health and Human Services (DHHS)
 

muffin

Senior Member
Messages
940
Judderwhocky is funny too!!!

reeves?
what is he like undead at this point?

another LMAO!!!
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
Not funny he is every where in this paper.

WMS, WCR, RMH and WH conceived and designed the study. WCR and VRF provided
specimens and data on study population. HJ, HZ, ST, AS, GS, NB, and OH performed
specimen testing and data analysis with WMS and WH. WMS, WCR and WH wrote the
manuscript. All authors read and approved the final manuscript.

Was this done before the February 15th move of William C Reeves to the other department?
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
It is testament to the CDC's apparently desperate desire to bury any notion of a link between CFS/ME and XMRV that they :
1. Conduct a study with the objective of studying XMRV in a certain cohort v's healthy controls
2. Find no evidence of XMRV at all
3. Leap to the conclusion that there is no association between XMRV and CFS/ME
4. Don't examine the alternative explanations for their findings.

Yes, the wording of their conclusions seems to betray the motivations behind this research... It seems to me that they want to bury the problem of XMRV as it relates to CFS... No surprise there then.
 

bullybeef

Senior Member
Messages
488
Location
North West, England, UK
I think Alter has pulled his own paper, muffin. Last week he said it was about to be published, and today said:

Our paper has not yet been accepted for publication.

It is a complete contradiction, in just over a week. Our future could be in the hands of one man now, Dr. Alter, and I doubt emailing him would cause him to have a change of heart. It is not about science anymore. We all knew the CDC paper would be negative, but by then we were privy to Alter’s leaked paper. He became our shining knight, and I certainly didn‘t believe he would ever consider changing his results to suit anyone. I thought his agenda was the donor population, and blood safety.

But if he 'rewrites' his paper, and concurs with the CDC, we could be doomed!!
 

muffin

Senior Member
Messages
940
FINCH: Sorry about your Dad.

All I need to do is to think about my beautiful, bright 9 year old niece and adorable 16 month old nephew and it makes me even more nuts that they may get CFIDS.
It's over for me, but not for the young ones. So that's why I keep fighting. The young ones -- I could lay on the floor and cry thinking about THEM and other children/young people getting CFIDS.

Just go into a state of despair and sob...
 
Messages
5,238
Location
Sofa, UK
"Do I feel healthy? Well, I'm a bit upset about my childhood but other than that I'm fine."
LMAO!!!! Thanks for that!

Esther you really do crack me up sometimes, I'll join in the thanks.

As for myself, near enough everything I've got wrong with me is "bizarre" and "impossible" apparently, so if the general public don't mind bizarre and impossible blood, then maybe they'd accept mine. Does their questionnaire have a box for "other bizarre and impossible symptoms"?
 

muffin

Senior Member
Messages
940
WHY was the CDC so damn stupid

as to put William Reeve's name on this document? It's a dead give away to all of us of what they are doing. So damn stupid. They really don't care and they really hate and area terrified of us.
 

anciendaze

Senior Member
Messages
1,841
No more on blood donation, etc...)
I want to make it clear at the outset, I am appalled that anyone would suggest infecting innocent people with this nightmare.

However, I've thought of one lever to use to move the CDC off dead center. If many CFS/ME patients were to write and thank them for clarifying questions which have stopped us from donating blood, (which is always in short supply,) and state they now want to do their part for public health, I believe the CDC would be forced to make a public statement qualifying published findings and urging caution. I am completely serious.
 

Finch

Down With the Sickness
Messages
326
FINCH: Sorry about your Dad.

All I need to do is to think about my beautiful, bright 9 year old niece and adorable 16 month old nephew and it makes me even more nuts that they may get CFIDS.
It's over for me, but not for the young ones. So that's why I keep fighting. The young ones -- I could lay on the floor and cry thinking about THEM and other children/young people getting CFIDS.

Just go into a state of despair and sob...

Thanks, Muffin! He's slowly recovering, but every time I saw them hang one of those bags, although I knew it was to help him, I did cringe inside wondering what might be in there. I was in that state of despair for a few months and have just recently emerged. Hopefully I'll become more active here again. The news is picking up, I see. The good will come, but I know we can't afford to be too patient. Too much damage has been done to us already.
 

Levi

Senior Member
Messages
188
This was all in the pipe last November:
http://well.blogs.nytimes.com/2009/...ers-vindication-in-a-virus/?apage=10#comments
As far as admitting to being wrong, there will be no need for that. In background checking with my scientific associates who are doing validation research on XMRV research, it appears from preliminary results that soon there will be a number of incontrovertible publications that totally discredit any linkage for ME/CFS/XAND to XMRV or any other pathogen.

Its all in these patients heads. And now, yet again, they have drawn a small number of naive and gullible scientists in; this will result in destroyed careers and great humiliation for them. At least it will be some time before the CDC’s agenda to “CFS” is challenged again.

Dr. Alter is probably asking himself right now, why throw away my career?

I think Alter has pulled his own paper, muffin. Last week he said it was about to be published, and today said:

Our paper has not yet been accepted for publication.

It is a complete contradiction, in just over a week. Our future could be in the hands of one man now, Dr. Alter, and I doubt emailing him would cause him to have a change of heart. It is not about science anymore. We all knew the CDC paper would be negative, but by then we were privy to Alter’s leaked paper. He became our shining knight, and I certainly didn‘t believe he would ever consider changing his results to suit anyone. I thought his agenda was the donor population, and blood safety.

But if he 'rewrites' his paper, and concurs with the CDC, we could be doomed!!
 
I dont get it, when I went to bed last night the news was both papers have been held, I got an email last night from Jerry Holmberg telling me the papers were under review, I go to sleep and a few hours later the CDC paper is out!! whats going on???

Statement from Dr. Harvey Alter, transmitted by the NIH Office of Communication and Public Liaison: "Our paper has not yet been accepted for publication. My colleagues and I are conducting additional experiments to ensure that the data are accurate and complete. Our goal is not speed, but scientific accuracy." Harvey A...lter, M.D

WHY HAS THE CDC NOT BEEN MADE TO GO OVER THERE STUDY AGAIN!!!!


I think another question to ask is why CFIDS.org is making statements on behalf of Dr. Alter from the NIH, when the NIH has put out no such release (that I can find). The statement completely contradicts everything published previously, but CFIDS is a tertiary source. There's no electronic record in public from the NIH releasing info about Alter.
So who is CFIDS.org serving by releasing that statement third hand?
 

Otis

Señor Mumbler
Messages
1,117
Location
USA
I think Alter has pulled his own paper, muffin. Last week he said it was about to be published, and today said:

Our paper has not yet been accepted for publication.

It is a complete contradiction, in just over a week. Our future could be in the hands of one man now, Dr. Alter, and I doubt emailing him would cause him to have a change of heart. It is not about science anymore. We all knew the CDC paper would be negative, but by then we were privy to Alters leaked paper. He became our shining knight, and I certainly didnt believe he would ever consider changing his results to suit anyone. I thought his agenda was the donor population, and blood safety.

But if he 'rewrites' his paper, and concurs with the CDC, we could be doomed!!

Well, I wasn't big on conspiracy theories but everything up to this last statement made me believe Dr. Alter was intent on publishing, that it was accepted.

Then we get a "hold" and then he backtracks.

If he's backtracking I honestly don't think he's doing this of his own accord.
 

bullybeef

Senior Member
Messages
488
Location
North West, England, UK
Great point, BRC, I cannot locate Alter's quote anyway, apart from CFIDS Facebook page. It seems ME charities and showing their agenda here. They are only there to keep an eye on us, and feed us with false propaganda.
 

Recovery Soon

Senior Member
Messages
380
Please take that unethical talk off the forums. The rest of us want nothing to do with infecting kids.


You don't speak for anyone but yourself.

It is LEGAL for us to donate blood if you haven't been paying attention. "Healthy" people are already infecting kids at a rate of 3.7 - 7%.

And they won't stop getting infected until the media gets a very loud message and forces the powers that be to stop this insanity.

Wake up.
 

anciendaze

Senior Member
Messages
1,841
What about research on those exclusionary conditions?

It takes me a while to think things through, for reasons everyone here can appreciate.

What just hit me is the absurdity of one line of argument in that CDC paper. If the patients who tested positive for XMRV in the Lombardi study had conditions which would have excluded them from the CDC study, the correlation between XMRV and the exclusionary physical problem must be exceptionally strong. The rate would have to be close to 100% to get 68% in a subset. A biological link between half a dozen previously-unrelated disease would be even more exciting.

The next inference is that responsible public health officials should be investigating those "real" illnesses with considerable urgency. Any evidence of this?

Now we come to the killer question: how is the CDC going to investigate those conditions if it can't find XMRV?