"CDC Damage Control: ME/CFS Research Group Relieved of Duties"

[George]

Question

What are Dr. Reeves credentials? I know he is associated with Emory's Phycology department. And his father was well known in the world of research medicine. Didn't his dad get him the job at the CDC? Dang I just can't remember.

 

[Cort]

That's for sure. Based on what Dr. Miller said I think the HIV group realizes they have a real problem. My understanding - and we'll only know when we see the study, was that there were going to be 3 groups;

• the crummy Wichita group (with only a few patients meeting the Fukuda def)
• the even worse Georgia group that met the Empirical definition - God knows what they're like
• well characterized CFS patients from CFS physicians - if they can get them. How ironic that the CDC spent all this money and time moving away from patients at ME/CFS physicians only to move back to them at the end.

Its hard to believe that the ED time hasn't come; no one else over the past 5 years has used it. Its basically a dead definition. The CDC 'appears' to realize this; its not clear if Dr. Reeves really does. Only time will tell. What a huge, huge mistake it was.

 

[Aftermath]

Threads Merged

I just merged the two parallel threads about this same news.

It is certainly interesting. Still, I don't feel that the title of the other thread--"Reeves Demoted" was fully accurate. XMRV has been removed from his purview, but CFS research is very much his shop.

I will consider Reeves demoted when he no longer has anything to do with ME/CFS and the studies on childhood emotional trauma as a possible cause of this illness are mothballed once and for all.

As others on this thread have capably noted, we run the real risk that the shenanigans will continue for those who do not test XMRV positive.

We need a major media piece--perhaps a segment on 60 Minutes--to really put things over the top and find Dr. Reeves some new work.

I urge everyone to visit the advocacy forum where there is a thread about writing to 60 Minutes.

Consider dropping them a short note requesting they do a show on ME/CFS. Some things you may wish to mention are:

• Being a high achiever and getting sick suddenly (if this applies to you)
• The Science Paper and the Attention it has Received from the NY Times
• The CDC's Previous Diversion of Funds Earmarked by Congress for ME/CFS

 

[jam338]

The CDC's Previous Diversion of Funds Earmarked by Congress for ME/CFS

I have read similar statements and yet have not seen a summary written or lnk to more information confirming this. Not suggessting at all that it doesn't exist. I am sure it does. We just want to make sure we know where it exists if we are going to start quoting the allegation publically to news media. The last thing we need is to impugn our own credibility in our best intented efforts to get focus on this issue. Does any have more specifics or links to info on this? It will be issues like this that the media will care about in these economic times. Sadly they don't care about our illness and suffering but would jump on a scandal about public funds used incorrectly==maybe
t

 

[Khalyal]

Organizational Protocol

The Chronic Fatigue Syndrome program is in the Chronic Viral Diseases branch of the CDC, which falls under the National Center for Zoonotic, Vector-Borne, and Enteric Diseases.

The National Center for HIV/AIDS, Viral Hepatitis, STD & TB Prevention is where retroviral study is conducted. Different National Center.

That's the sole reason for the XMRV study being removed from the Reeves shop. That's where they study retrovirus(es). It's organizational protocol.

 

[oerganix]

Diversion of research money

I have read similar statements and yet have not seen a summary written or lnk to more information confirming this. Not suggessting at all that it doesn't exist. I am sure it does. We just want to make sure we know where it exists if we are going to start quoting the allegation publically to news media. The last thing we need is to impugn our own credibility in our best intented efforts to get focus on this issue. Does any have more specifics or links to info on this? It will be issues like this that the media will care about in these economic times. Sadly they don't care about our illness and suffering but would jump on a scandal about public funds used incorrectly==maybe
t

I'm not going to look it up for you, but rest assured it did happen. It's not an allegation. I lived through it, the horrible devastating feeling that after we petitioned Congress for a pittance of research money, CDC took the money and spent it on lab equipment for other departments and research into polio and measles - like those illnesses haven't been researched extensively. It was really a stick in the eye.

And did the media jump on the "scandal"? No they did not. It was barely a blip and disappeared in days. The perpetrators got slapped on the hand - had to take a seminar on proper use of research funds. Hilary Johnson's book, Osler's Web names names, dates, amounts, etc. Read it and weep.

 

[Aftermath]

CDC Scandal

I have read similar statements and yet have not seen a summary written or lnk to more information confirming this. Not suggessting at all that it doesn't exist. I am sure it does. We just want to make sure we know where it exists if we are going to start quoting the allegation publically to news media. The last thing we need is to impugn our own credibility in our best intented efforts to get focus on this issue. Does any have more specifics or links to info on this? It will be issues like this that the media will care about in these economic times. Sadly they don't care about our illness and suffering but would jump on a scandal about public funds used incorrectly==maybe
t

The scandal at the CDC where funding specifically earmarked by congress for ME/CFS research was intentionally diverted to other programs is well documented.

Start out by reading the links at Co-Cure's CDC Scandal page.

 

[Robin]

report from the Government Accounting Office

This PDF report mentions the misdirection of funds. There's an investigative report that was linked on Hillary Johnson's page but her blog seems to be down. You could probably email her and ask for the link.

In 1999, the Department of Health and Human Services Office of Inspector
General reported that a component of the department, CDC, had redirected
funds intended for the Chronic Fatigue Syndrome to other programs during
fiscal years 1995 through 1998.

 

[starryeyes]

All I can say is that I sure hope the CDC has beefed up their HIV labs and personnel since And The Band Played On was made. Anyone who saw that movie knows what I'm talking about. I think the main CDC researcher spent the whole movie begging for an electron microscope and not getting it.

In the end it was the French who discovered HIV but the CDC tried to make it look like they had.

Why would anything have changed much? Sure maybe they have a bit more equipment but I'll be shocked if the CDC can even find XMRV in any blood samples.

 

[oerganix]

link to the HHS Sec

Thank you for that link to tell Kathleen Sibelious to get a move on.

 

[fresh_eyes]

Yes, love that link in your signature, teej - I'd like to copy you if you don't mind.

 

[starryeyes]

Go right ahead fresh_eyes. Let's get the message out there.

 

[Martlet]

DONE!!!

And now I am writing more words so it will let me post.

 

[Recovery Soon]

60 minutes

"someone here noted going to 60 Minutes with a CFIDS story I had said to my husband that I was going to contact them and see if they wanted to go with an in depth investigative story on CDC/CFS and now the XMRV finding. I think it is a great idea and one that everyone should write up and send on to 60 minutes. Give them as much information, research, data, background, etc. to make it compelling and easy for them to do their job."


YES...YES...YES

60 Minutes is the way to go-

 

[SDD1244]

60 Minutes Contact Info:

http://www.cbsnews.com/stories/1998/07/08/60minutes/main13504.shtml

 

[starryeyes]

That makes it easy, thank you. You'd be surprised at how the thought of shifting gears to look something up with horrible brainfog can deter me from doing something so links are always appreciated.