From Flu Wiki 2

Forum: Club of Worms-Scientists Who Block H 5 N 1 Sequence Data

25 March 2006

Monotreme – at 17:41

Here’s the list of worms masquerading as human beings who are blocking the release of vital H5N1 sequences:

There may be others involved as well. Its not clear who is blocking the H5N1 sequences from virus isolated from humans in Turkey. Alan Douglas now asserts that although the viruses were sequenced at Mill Hill, UK, the director of that institute, Sir John Skehel, has no objection to the sequences being deposited in GenBank. (See his post on another thread here). He suggests that the sequences are probably being blocked by the originating laboratory, presumably in Turkey, or the WHO. Since I already think the Director-General of the WHO is a worm, I would not be surprised if it was him, but we need more information on this one before coming to any definite conclusions.

Documentation of the charges above, and more detailed discussion, can be found in this Opinion.

Monotreme – at 17:54

I inadvertently left the following “worm” off the list above:

Many Cats – at 18:07

You dignify them by comparing them to worms. They are lower than the lowest life forms—just viruses without much humanity.

jquest – at 18:41

I believe that the email address for Julie Gerberding is:

JYG2@cdc.gov

Perhaps we should write and ask why she supports withholding sequences…

Monotreme – at 19:38

Many Cats: You’re quite right. I don’t wish to insult annelids. How about maggots? After all, they feed on the dead.

jquest: Excellent idea. Even better, call your elected officials and tell them the Director of the CDC is willing to sacrifice our lives for her personal glory.

Melanie – at 19:42

That’s takin’ it to the mattresses, ‘treme.

Melanie – at 19:43

If you decide to write to any of these characters, just remember that you do not represent the wiki, you represent yourselves.

Monotreme – at 22:18

Melanie: “That’s takin’ it to the mattresses, ‘treme.”

Damn straight.

We may be looking at a virus with a 30–90% mortality rate and a 30% attack rate. If this isn’t the time to call our representatives to complain about an idiot bureaucrat, I don’t know what is.

26 March 2006

gs – at 00:13

mono, what’s a “worm” in this context ?

Melanie – at 00:20

Okay, who wants to write the sample letter so that the timid can customize something if they’ve never done the astroturf thing before? ‘treme, are you game?

Monotreme – at 08:25

gs: In this context, a “worm” is someone who feeds off the dead and endangers our lives by their behaviour. Many H5N1 viruses have been isolated from patients who later died. Their grieving relatives probably signed release forms allowing samples taken from their loved ones to be used for research purposes, no doubt in the hope that other people might be spared the anguish they went through. The individuals listed in my first and second posts, above, are involved in the sequencing of the H5N1 viruses extracted from these samples. This is a routine technical procedure that requires very little intellectual input. They should deposit these sequences in GenBank, an open-access database, so that the world’s scientists can start analyzing them to figure out how close we are to a pandemic, to design primers for PCR so that we don’t miss new cases, and to develop vaccines to protect us from a pandemic. Instead, the individuals above have chosen to block the release of these sequences while they write papers, which may take a year or more, in order to puff up their CVs. What else do you call “people” (I use the word loosely) who would do such a thing?

In German, the proper word to describe these “people” would be Schwein, but I don’t want to insult pigs.

Monotreme – at 08:49

Melanie: I’ll write a draft, but I’d appreciate it if you would critique it - I’m sure you have alot more experience with these sorts of letters than I do.


Dear Elected Official,

I am writing this [letter or email] to express my grave concern regarding the behavior of Dr. Julie Gerberding, Director of the Centers for Disease Control and Prevention (CDC) in reference to a database of flu sequences that the CDC has accumulated. As you know, many of the world’s scientists, including Dr. Gerberding, are very worried that a flu pandemic may start soon. It has been estimated that such a pandemic may kill up to 2 million Americans, mostly young people and children. Many of the measures that we would use to reduce the impact of such a tragic event require the sharing of sequences obtained from flu viruses amongst the world’s scientists. Yet, Dr. Gerberding has prevented most of the scientists of the United States and other countries seeing these sequences, which has impaired their work. None of the public statements made by her or others at the CDC for this behavior are credible. Many suspect that these sequences are being kept secret so that individuals at the CDC can have exclusive access to them while they write papers, a process that may take years. Thus, the lives of millions of Americans are being put at risk to boost the careers of scientists at the CDC.

With respect, I ask that you support legislation that would require the CDC to deposit all of their flu sequences in a database (GenBank) that would be accessible to all of the scientists in the United States and elsewhere so that the spread of dangerous viruses can be monitored and the most effective vaccines be developed. Further, I ask that the legislation require the CDC to deposit their flu virus sequences with 24 hours of completion.

Sincerely,

[your name here]

gs – at 10:46

gs: In this context, a “worm” is someone who feeds off the dead and endangers our lives by their behaviour


I can’t translate “feed off the dead”. But I doubt any of these is what typically a worm stands for. Nor would I translate it with “Schwein”. Please reconsider your wording.

fredness – at 11:13

Maybe the letter should have the other page attached Blocking Sequence Data opinion page. It is already well written. I noticed the story CDC Locks Up Flu Data is not on the Atlanta Journal Constitution’s website anymore. That another excellent attachment. The text is still available here.

Melanie – at 11:17

‘treme,

Great draft which needs no tinkering from me.

Monotreme – at 11:52

gs: I’m happy with my wording, unless you can find a stronger term to describe the despicable behaviour these individuals are engaging in.

fredness and Melanie, thanks.

Anam – at 13:00

naive layman question: what are they gaining by blocking the release of info? What is this about? Fame?

Monotreme – at 13:35

Anam: Yes, I think its fame. Scientists get raises and promotions based on their publications. The more papers and the bigger the impact of the papers, the more famous they are and the more they can ask for.

Sequencing nucleotides is a routine technical procedure, but the individuals who have the sequences have unique access to the samples. It appears that these individuals got privlidged access to the important samples due to strong political connections, not due to merit. Thus, you have mediocre scientists with a monopoly on important data. They are blocking their intellectual superiors from analyzing the data, to everyone’s detriment.

mmmelody47 – at 14:00

Monotreme – at 08:49 - may I assume that your letter can be used to notify our elected officials of the CDC behavior?

Monotreme – at 18:16

mmmelody47: Absolutely. The more people who use this letter, or any modification they wish, to inform and lobby their elected officials the better. Feel free to post the letter on other forums or to email or otherwise dessiminate however you wish.

mmmelody47 – at 18:37

Your letter has been sent to my Congressman, Peter King of Long Island, NY. No reference has been made to the fluwikie…thank you too, for your work and response to my post.

Kindest regards,

mmm

Monotreme – at 18:48

mmm: You are more than welcome and Kudos to you for taking action on this important issue.

27 March 2006

mmmelody47 – at 10:25

Monotreme – at 18:48 - are you thinking of opening a new thread regarding your letter above? If you light a fire under the folks that regularly visit fluwikie, I would expect the response to be high.

mmmelody47 – at 10:33

Monotreme - your letter was also sent to Gov. George Pataki, NY, ® - who aspires to national elected office.

Monotreme – at 21:15

mmmelody47: I’ll start a new thread with the letter as the first post as you suggest. We’ll see what happens.

Path Forward – at 21:29

I think it is possible that a lot of our fellow readers are not clicking on this link because of the thread’s title, which makes it sound like it is going to be a marginal thread full of ranters.

I almost didn’t click on it myself, because of “Club of Worms.”

Monotreme, I know you are angry about the sequence withholding. So is every thoughtful person in the world (of those attending to avian influenza issues).

But some of us want to distance ourselves from those who call people like Gerberding and Peiris “worms.”

I would put my anger and frustration about this up against yours any day. But it does not advance our shared cause to call these people “worms.” You are free to do so, of course. But it doesn’t add to the fluwiki’s respectability.

My friend, I assume we will continue to disagree about name-calling, and we will continue to agree about goals. I admire how hard you are working on this issue.

DemFromCTat 21:34

I am not happy about the designation. I agree with Path Forward. This is not the way to get things done. That’s another reason to start a new thread.

Monotreme – at 22:40

I did start a new thread (with perhaps a less inflammatory title). However, I am less concerned about respectability than letting people know what’s happening. It isn’t simply a matter of name calling to vent my spleen, but rather, what I believe to be an accurate description of reprehensible behaviour. If people die because of the behaviour of the individuals above, and I think it likely they already have, it is not sufficient to politely request more transparency. Moral outrage is the only acceptable response, IMO. Quite frankly, I wish more scientists would call Dr. Gerberding et al. on their behaviour, publicly. I’m sure there are many who privately regard these people the same way I do.

DemFromCTat 22:49

Do you want unlimited outrage or do you want the greatest number of people to sign on? Your choice.

Monotreme – at 23:17

Well, frankly, I think the more outrage people feel, the more will sign on. Pussyfooting around people with big reputations and underdeveloped morals hasn’t worked. Exhibit A: Sequence and cluster information from Turkey.

I could be wrong, but I think many people are less concerned about hurting the feelings of scientists who block sequence data than the lives of their families.

In any case, the new thread I started does have a less inflammatory title, agreed? Yet, this is the one that keeps getting bumped to the top ;-)

28 March 2006

Bad moon – at 00:16

Having relatives who had worked for CIA AND the Secret Service all of which are now retired. There is one thing I have heard over and over. “The people of this country have no idea what really goes on”. There may be freedom of speech in this country, but once you cross the line about national security the CIA ….. THERE. Just imagine if the CDC published something like “H2H has been confirmed we can no longer contain this”. or better yet W gets on the TV says something like “H5N1 has reach pandemic status you need to start to prepare your familys”. People would Sh** themselves. Remember orsen wells war of the worlds (the panic). Banks would be drained within 48hrs. Supermarkets in 12hrs. Believe me I want to know as much as you guys but it will NEVER happen. The cdc will never do it because the cia feels it is endangering national security. There right we could never fight/remedy this with a collapsed economy. So the black out/ media lags will continue. I just wonder will I see people dye before they admit it’s here. And when it’s over what will they say “we told you to prepare”!

gs – at 00:34

and how are you going to avoid it ? Close internet ? Ban all radios ? People will be asking themselves, hey what’s going on ?? You could win some days or weeks. But for what ? To avoid people running to the stores ? But that’s exactly what they are telling us, what we _should_ do.

Ceredwin – at 00:42

So stop arguing for a minite and go sign a letter to your representatives, the link to the addresses is right on it.

 http://tinyurl.com/e863l

This is the URL for the great letter! Which I signed, by the way.

gs – at 00:45

Club of Worms could be an old political institution in medieval Germany, where Worms was a city of great historical importance…;-) I didn’t take the wording seriously despite mono’s outrage. BTW., what about WHO’s GlobalAtlas password protected webpages, where they give daily updates about outbreaks and info ? Maybe the cluster-data etc. is there too ?

anonymous – at 00:53

gs-Have you written the letter? Or just complaining?

22 April 2006

Tom DVM – at 14:08

Monotreme…Oh Monotreme…where are you?

jquest – at 14:45

I sent off an email to my senator about this a few weeks ago - I wish we had two senators from Minnesota but Mark Dayton is a completely worthless moron… Other than the auto acknowledge there has been no other response. I guess that Julie G has managed to use her wormlike powers to keep him from responding…

Monotreme – at 16:26

Tom DVM, I’m back (and madder than ever about scientists who block sequence data). I just had alot of problems getting access to the forum during the technical difficulty period.

Dr. Gerberding has had plenty of time to release the flu sequences hidden from other scientists at the CDC. She didn’t. Let’s not let her off the hook.

mmmelody47 – at 16:46

Monotreme - I just bumped “Free the CDC Sequences-Contact Your Representative” to get your letter some viewing. I’ve yet to hear anything from my Govenor or Congressman.

Tom DVM – at 16:47

Right On!!!! Lets go get them!!!!

Monotreme – at 18:17

mmmmelody47 and Tom DVM, more scientists have been calling for openess in sequence access, so some progress has been made. When I get the time, I’ll start a thread to list the scientists, and journals, on the side of transparency.

The CDC is still the big problem. As long as they get away with locking up their flu sequences, countries like China can say they are no worse than the US, so how can they be blamed. We need to get creative in thinking of ways to apply public pressure to get Gerberding’s policy of secrecy reversed. lugon, any ideas?

Tom DVM – at 18:39

Monotreme and mmmmelody. I think we should get Joe W involved. Have you read his post on the sequences thread? It’s fairly complicated and he lost me along the way but what I understood makes sense.

One other thing though. Have you ever been in a regulatory agency office? They all read flu wiki. In addition, they are all very sensitive to public opinion.

I believe you are exerting all the pressure needed. I believe some of the releases so far are directly as a result of your stubborness and determination…so even if we can’t do it through official channels, all you need to do is do what you do best.

mmmelody47 – at 19:14

Monotreme - if there is anything that I can do to assist, please let me know. The nature of my business affords me (often times) availability during the day, since I’m on this laptop generally between the hours of 6 am and 8 - 9 or 10 pm. My background is 180 degrees from yours and Tom DVM’s, but our ultimate goals differ not a whit!

mmmelody47 – at 19:27

Tom DVM – at 18:39 - I’m glad you said that first about JoeW’s post. I think perhaps he misunderstood the thrust of my “in your face comment” to Monotreme, regarding his letter to elected officials of a couple of weeks ago. JoeW certainly has the background and experience in dealing with politicians and bureaucrats. Criminal Justice Prof as I recall.

mmmelody47 – at 19:41

I’ve re-read JoeW’s post two more times and I have to tell you that it is well thought out and makes a helluva lot of sense.

27 April 2006

Monotreme – at 01:42

Malik Peiris has begun depositing some of the H5N1 sequences he has obtained in GenBank, prior to publication of his paper. I have therefore removed his name from the list of people blocking H5N1 sequences in this Opinion.

crfullmoon – at 10:31

Thank you, Malik Peiris.

28 May 2006

BroncoBillat 01:48

Closed to increase Forum speed.

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