Eileen Holderman's e-mail to CDC

Nielk

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The following e-mail was sent by Eileen Holderman to Dr. Unger (CDC)

Dear Dr. Unger:


Thank you for participating on my Subcommittee Teleconference last Friday. I hope you found Dr. Chia's presentation on "ME/CFS and Enterovirus," and the subsequent discussion with the invited advocates and members of the press interesting; I look forward to you sharing your impressions of the Teleconference with me.

On another note, and my primary reason for writing, is to let you know that to commemorate May 12 International ME Awareness Day, I wrote a thank you correspondence to the CFSAC CDC Web Site Review Panel Members for their contributions toward improving the CDC Web Site. As you know, for the past 4 years, I oversaw and participated on the Review Panel because the content of the CDC Web Site has been of critical concern to the ME/CFS community. After I sent my correspondence, I decided to also send a thank you letter to you, Dr. Belay, and Mr. O'Connor for your time and efforts in addressing my/the Review Panel's concerns.

As I prepared to write my thank you letter, I checked out the CDC Web Site so my final remarks would be accurate. To my surprise and dismay, I noticed CDC created a new web page to feature May 12 Awareness Day. I say 'surprise' because there was no mention of it to me or my Review Panel; and there was an opportunity to mention it as recent as last Friday during my Subcommittee Teleconference when I asked if there were any announcements from HHS - you will recall that my inquiry was met with an awkward silence. Had CDC communicated to me that they planned to feature May 12 Awareness Day with the erroneous content of the CDC Web Site, I would have objected. Furthermore, our national and international ME/CFS and FMS organizations do an exceptional job of raising awareness for these diseases so CDC need not undermine those efforts. I appeal to CDC to remove the new web page as advocates have already begun to voice their justified criticisms of the content.

For the past 4 years, my Review Panel and I have made countless suggestions to improve the CDC Web Site. While CDC did make changes to the general sections of the web site, my opinion is that most of the changes were cosmetic, not substantive. The CDC Web Site still resembles a web site for the condition of chronic fatigue instead of a web site for the neuroimmune disease of Myalgic Encephalomyelitis (aka CFS).

Below, are my specific (though not my complete list of) recommendations to improve the CDC Web Site that need to be, but have yet to be, implemented:


* remove the Resource Guide

* remove the Toolkit

* remove the expired and needless Emergency Preparedness Webinar

* remove the expired CDC/Medscape video online course

* remove all references to the Oxford Case Definition in the CME online courses

* remove references to CBT

* remove references to GET

* remove references to St. Bart's and NICE Guidelines

* remove all links to CDC psychosocial published studies on ME/CFS

* remove all implications both subtle and overt to ME/CFS as a psychogenic and/or a fatigue "condition"


Hopefully, the CDC Web Site will get on board with our 50+ ME/CFS experts and adopt the CCC in their CME courses and in all of their content, and reference the 5000+ biomedical papers on ME/CFS, and offer links to the IACFS/ME Primer and the ME ICC Primer and a section on Pediatric ME/CFS. The CDC Web Site needs to reflect the serious, disabling nature of this neuroimmune disease affecting nearly one million American men, women, and children and 17 million worldwide.

Again, thank you for the time and consideration you, Ermias, and John have given me and the Review Panel in regard to improving the CDC Web Site.


Best regards,

Eileen Holderman


cc: Dr. E. Belay, Mr. J. O'Connor, ME Community
 

taniaaust1

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CDC communicated to me that they planned to feature May 12 Awareness Day
I guess the CDC is attempting to look good by making us aware that they actually realised May 12 is our awareness day (that did surprise me that they'd paid us that much attention to notice that). Pity they dont understand that it takes far more then that to make them look good to us. Nothing other then accepting just how serious this illness is and making their website represent this will do.
 

Nielk

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Dr. Lipkin said in his interview with Mindy Kitei that Dr Unger does not think that this is a somatoform illness. I would say that action speaks louder then words.

For how many years have we urged them to remove their toolkit from their website with references to GET, CBT and antidepressants.

If the CDC really believes that this is a serious biological disease, we would not have to beg them to make these changes. They would be happy to comply.

The proof is in the pudding!
 

jspotila

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Did anyone take screenshots of the CDC's Awareness Day page that Eileen mentions? I'm not seeing it on their site now.
 
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Telling it as it is, we all need to do more of the same particularly in the UK. It's completely inappropriate that so called ME Charities have links on their sites to ME/CFS Clinics run by Psychiatrists such as Chalder, Sharpe and White. I have asked them to remove them or at the very least put a caveat in place warning those new to ME of the harm. The response from both was, they provide the information, patients are free to choose, (AFME) it wouldn't remove them just because I and others didn't like them! (MEA) both Charities blocked me from their Facebook groups for raising this concern.
 

jann1033

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Great letter from the dr
As to the cdc page, boy it would have been nice to have mentioned just where you are to find this knowledgeable Dr to take these good notes so you can evidently swallow your pride that is the only thing keeping you from getting disability.

Since so many can't work where are they supposed to come up with the funds to travel 500- 1000 miles, pay for lodging, gas food meds the visit so they can see one of the handful of knowledgeable docs that the CDC hasn't tainted with their uneducated, biased view? They neglected to mention that.

Lol that and gathering all your items before you start to make that gourmet dinner, wash all that laundry and get that refreshing sleep. This takes place where, in Fantasyland?

Baffons, charlatans, quacks or just plain idiots?
 
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Snowdrop

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Is there some way we can add our voice to the concerns described in the letter to Unger?
The website as it stands is misleading and there is no way for the authors to not know that.

I have no words for what I think of the CDC's attitude toward the ME community.

:mad: indeed!
 

Izola

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I guess the CDC is attempting to look good by making us aware that they actually realised May 12 is our awareness day (that did surprise me that they'd paid us that much attention to notice that). Pity they dont understand that it takes far more then that to make them look good to us. Nothing other then accepting just how serious this illness is and making their website represent this will do.
Tania: I think I signed your petition twice!:angel::aghhh::angel::)o_O:whistle::oops::rofl::sleep::lol::nervous::wide-eyed::jaw-drop::woot::aghhh::D:p:rofl: oOPs.

It's a great petition, Btw. Everyone should sign it several times, or at least once! Of course I am not a good example, so only once. I think. They hold up a sign for me at AVAAZ telling me I have already signed, because Oatmeal is no substitute for a brain.

Does the CDC even care what they've done to our lives? I thought not. Maybe they believe their own propaganda. Sometimes I think my own anger is what keeps me alive. Thank you for being able to translate that into advocacy.

I admire all you advocates out there making plans and making sense. Thank you Tania, Thank You ALL************
 

Izola

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I went to the web site. The CDC is infinitely more scary than I like to remember. They didn't leave a little box for comments. Like "Who are you and what have you done to the humans." And, Dammit, I have ME. (Sorry, I am too old for major changes, like drilling thoughts into my head.) And I want to throw dog and cat poop at whoever wrote that scenario for a relaxing day at home with cfs. grr-rrr-rrr