Journalist Smacks CDC!

[Dolphin]

This went out on Co-Cure on Thursday but I don't think got featured as much as it could have because of the CFSAC meeting that day:

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An investigative journalism site in Atlanta just posted the following article about the CDC and Reeves.


Advocates: Where was CDC for milestone in chronic fatigue syndrome research?

October 28, 2009 --

Looks like the CDC's chronic fatigue syndrome research group, led by Dr. William C. Reeves, may have some 'splaining to do today in Washington. A possible research breakthrough -- the discovery of a correlation between CFS and a retrovirus related to the AIDS virus -- has fired up the medical community in recent weeks. "This is going to create an avalanche of subsequent studies," Dr. William Schaffner, an infectious disease expert at Vanderbilt University, told the New York Times this month. But will the Centers for Disease Control and Prevention play a role in that research? It hasn't so far.

http://www.atlantaunfiltered.com/20...lestone-in-chronic-fatigue-syndrome-research/



Please feel free to re-post as is. Constructive comments are encouraged and can be made at the site.

 

[August59]

This is good!! It just needs to keep going, going and building. This needs to "snowball", if there is anyway possible. It's starting to come from all directions. He has got to be feeling the heat! Now it's time for him to get out of the kitchen!"

 

[KC22]

Good Article.. It's hard to believe this was written before the big meeting.

Great reporting!!! Enjoyed the comments after the article, too..

 

[leelaplay]

great CDC article

thanks for passing this on Tom.

It's the best reporting on the CDC or any aspect of ME/CFS that I've seen. In fact, I'd call it journalism!

Wonder if we can encourage the reporter to put out regular articles on ME/CFS. Does anyone know who the reporter is?

Jerry S - you may have to let the WaPo know it was scooped again!

if

ETA I just added a comment on the atlanta page asking for more on ME/CFS from this journalist.

 

[Cort]

Big Opportunity

This is a big opportunity that we're missing the boat on with all the XMRV stuff going on. This guy has been fed the dirt on the CDC by a former journalist who has ME/CFS. She's been after him for months. He's based in Atlanta - the CDC headquarters. They will hear about him.

We've got to get on top of this and push. This is the first time a journalist has taken up the drumbeat on the CDC. Please click on the post and leave your comments.

If we can get enough hits to this guy he could turn this into a series. Media attention is exactly what's lacking for us with the CDC. All the professionals criticisms have made no difference - we need the media to put the heat on.

This guy is actually doing it. Check it out.

http://www.atlantaunfiltered.com/200...rome-research/

 

[Carla-nl]

Link ?

Hi Cort,

The link didn't work for me so i fumbled till i had it. THis is the article you're referring to I hope?

http://www.atlantaunfiltered.com/20...lestone-in-chronic-fatigue-syndrome-research/


At least you have press coverage... i still only found 1 newspaper entry in NL... Quoting Van der Meer....

Carla-nl

 

[Sing]

Added a comment to this article

Your link didn't work for me, Cort, but Tomk's did, from the top of the page. I just submitted a rather fiery comment and now feel a little guilty. Was I too mean with my meaning? There is blood on the road, however, and I wanted my message to reflect that reality.

Yikes,

Cecelia

 

[Cort]

I thought your comments were apt and true.

The CDC is not responding to virtually any of the criticisms presented not just by patients but by professionals in the field. It's simply sitting back and ignoring them. That cannot be condoned. That program has to wake up!

(I fixed the link)

 

[Jerry S]

Cecelia

Your link didn't work for me, Cort, but Tomk's did, from the top of the page. I just submitted a rather fiery comment and now feel a little guilty. Was I too mean with my meaning? There is blood on the road, however, and I wanted my message to reflect that reality.

Yikes,

Cecelia

Hi Cecelia, I just looked at your comment. It's great and entirely appropriate. I often have these second thoughts, too. I think you should feel proud, not guilty.

Great job! Thank you.

Jerry

 

[Jerry S]

islandfinn

thanks for passing this on Tom.

It's the best reporting on the CDC or any aspect of ME/CFS that I've seen. In fact, I'd call it journalism!

Wonder if we can encourage the reporter to put out regular articles on ME/CFS. Does anyone know who the reporter is?

Jerry S - you may have to let the WaPo know it was scooped again!

if

ETA I just added a comment on the atlanta page asking for more on ME/CFS from this journalist.

Thanks for your good work! I think I'll wait a while and see if this is starting to sink in at the WaPo. If nothing happens, I'll follow up.

I've been emailing just to the WaPo's general "letters" address. I wonder if there's a better address to use.

I would hate to see them miss another scoop.

 

[Cort]

Atlanta Journalist Smacks the CDC

This is from my most recent blog. He's got almost 50 comments on that article. He's got to be noticing that. Lets keep up the heat.

The CDC Problem - The CDC attempted to explain away the patients explosion of frustration at their Chronic Fatigue Syndrome (ME/CFS) program as the result of a well organized plot by the CFID’s Association of America. They haven’t yet come up with a good explanation for the avalanche of criticism visited upon them by the professional community. Instead of responding to the IACFS/ME, the federal advisory committee on CFS (CFSAC) and numerous professionals they appear to have buckled down to run out the storm. The storm has been raging for the last year and with Annette Whittemore calling for a Congressional Investigation into anemic federal response to CFS and Dr. Reeves fanning the flames with his comments on ME/CFS patients next big hope, it doesn’t show any signs of letting up.

And yet thus far - so far as the patient community can tell - nothing has made any difference. Dr. Reeves continues to act with impunity, making promises and then breaking them quickly afterwards. Hilary Johnson’s recent blog exposed considerable dismay among the rank and file at the CDC but there’s no sign yet that administration officials themselves are feeling the heat.

They may be soon. For the first time an investigative journalist has joined the fray. Jim Walls at Atlanta Mainstream, located in the CDC’s hometown, Atlanta, just raked the CDC’s CFS team over the coals for the pitiful program they’ve run. In truth he’s just dipped his toes into the murky water that has been the CDC’s CFS research program over the past couple of years. We could really do with a full blown investigative series. Let’s make it happen.

If real change is going to come its going to come now. Change is coming anyway; the discovery of XMRV, accomplished that but how far that change will go, though, is partially up to us. Lets bring some heat - check out the article, give Jim Walls some hits, and leave your comments. Lets give him a reason to start really digging.

Maybe we can finally get our missing partner - the media - involved in taking a good hard look at the biggest chronic fatigue syndrome program on the planet.