1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
Discuss the article on the Forums.

Anyone get a Wanda K. Jones signed letter?

Discussion in 'General ME/CFS News' started by muffin, Nov 21, 2009.

  1. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    Pandora had a set-up to send emails to Kathleen Sebelius requesting that the CFSAC recommendations be signed off on by her and then acted upon. Well, I did my duty and signed the letter and put my own spin on the letter to Sebellius. Just today I got a US MAIL letter from DHHS and signed by Wanda Jones (the CFSAC Designated Federal Official) who was involved in the drafting of the recommendations. The letter starts off with, "Thank you for your letter to Secretary Sebelius, which has been forwarded to me for response." Are these people kidding??? Essentially, Sebelius' office shot the letters BACK DOWN to Wanda Jones office to deal with. Did Sebelius even see the recommendations? Did she or her office bother to understand the situation and do anything about it? I doubt it. They just dumped it all back down on poor Wanda Jones to deal with - round robin style. Friggin Federal government wasting more time and money.

    In the letter Jones states, " Implementation of recommendations for any advisory committee takes time, particularly if significant resources are required. The timing of the CFSAC meetings may result in as much as a year's delay because of fiscal year commitments. We have found that about half of CFSAC's recommendations have been, or soon will be implemented, and we do expect progress on others."

    Great informative letter on top of this stupid Federal government circle-jerk. She did NOT note which of the recommendations were acted upon or about to be acted upon. And she left out what I believe is the most important recommendation: Getting rid of Friggin William Reeves.

    So, now Dr. Jones will get yet another email from me asking WHICH recommenddations were acted upon, did Sebilius actually read the recommendations, and what is the status on William Reeves being removed from the CDC/CFS program.

    Anyone else get this super informative letter from Dr. Wanda K. Jones???
    Guess Wanda and I will have to have another chat. She actually called me on the telephone because I kept emailing the CFSAC people.
     
  2. misskoji

    misskoji Guest

    geesh

    I haven't gotten anything, but how friggen frustrating is this! How, how how do we get our message accross with all of this red tape and disregard?
     
  3. Katie

    Katie Guest

    The New York Times has run several articles on XMRV, maybe if a bundle of them turned up you could send them all to the department who's taken as interest and get a political twist on the situation. I'd probably play it with a more 'public health Sebelius isn't paying attention' angle than CFS as it's more likely to get some attention, but give due mention to CFS and the importance that government do not fail to neglect millions of people when they are currently trying to pursuade people to extend government responsibility over health care. Doesn't look good when red tape prevents research moving forward and adaption to new science. Government = Slow and cumbersome, Private Enterprise = responsive invisible hand.


    Keep on keeping on. Oh, I think a letter of displeasure and disappointment should be sent immediately.

    This is probably the kinda thing the UK will face when our time comes, good luck, we're rooting for you here, you're our best hope.
     
  4. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    muffin, that is terrible! Thanks so much for writing Sebelius and trying. I have to say, I'm not at all surprised. Are you really? My gut told me from the beginning that Sebelius was not on our side and that's panning out.

    I say, if you have the energy to write more letters and want to then great. I'm grateful and I'm sure others are too. I don't know if anything would change even if we all wrote letters. I may write one, I don't know.

    I'm not sure about what to think about Wanda Jones now. She seems to be robotic. She did say during this last CFSAC that this is the kind of thing that happens with all Advisory Committees for other illnesses too. I bet she meant, Gulf War Illness, Chronic Lyme Disease and Morgellons. I don't think Cancer or Multiple Sclerosis have such issues. At least not this day and age.

    Even though this is all predictable, it still makes me very angry.

    tee
     

See more popular forum discussions.

Share This Page