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New email to send HHS re IOM action, as of 17 Sept

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Sasha, Sep 17, 2013.

  1. Sasha

    Sasha Fine, thank you

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    I think this from jspotila needs a new thread:

    HHS is going ahead with the IOM contract and plans to sign in by September 30th. They are pursuing this course without any input from the voting CFSAC members, and over the objections of the community.​

    I have seen the confirmation that they plan to do this. This is not a drill. This is the real deal. Our only hope is to try and stop them from signing the contract by the 30th. The fiscal year resets on October 1, and they would have to find the substantial funds all over again for FY2014.​

    Details and a sample email are here: http://www.occupycfs.com/2013/09/17/insult-meet-injury/

    Mine is not the only sample email. I link to several others from that blog post. I hope you will speak up as well!​
    taniaaust1, jspotila and Nielk like this.
  2. Sasha

    Sasha Fine, thank you

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    I've sent mine.
    jspotila and Nielk like this.
  3. Nielk

    Nielk

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    Here is an alert from Mary Dimmock on Prohealth about it.
    http://www.prohealth.com/library/showarticle.cfm?libid=18346

    HHS is progressing with their dangerous agenda, regardless of our past strong outcry. Will we let them stamp on us?


    Instructions for Emailing HHS:
    If you are using the sample email provided below, copy the sample email into the body of an email message. If you wish to personalize it, add a sentence or two at the beginning of the letter.

    Add your name, city and state (or country if you do not reside in the US) to the end of the letter.

    Add the Subject Line “Stop the IOM Contract to Redefine ME". Feel free to change the subject line from time to time to avoid spam filters. Another tip: If you have more than one email account, use one on one day and the other on another.

    Copy the following addresses into the ‘TO” and “CC” boxes
    TO: Kathleen.Sebelius@hhs.gov
    CC: howard.koh@hhs.gov, txf2@cdc.gov, Tomfrieden@cdc.gov, Marilyn.Tavenner@cms.hhs.gov, margaret.hamburg@fda.hhs.gov, Mary.Wakefield@hrsa.hhs.gov, collinsf@mail.nih.gov, richard.kronick@hhs.gov, MEACTNOW@yahoo.com
    The CC includes addresses for the heads of all HHS agencies. The email addressMEACTNOW@yahoo.com is used to track the number of messages sent.

    Sample Email for HHS - To be copied into the body of an email message.
    Dear Secretary Sebelius,

    I strongly urge HHS to abandon its plan to employ the Institute of Medicine (IOM) to define its own clinical diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

    Researchers and clinicians with years of experience in studying and treating this disease have already created peer-reviewed case definitions – the 2003 Canadian Consensus Criteria (CCC) and the 2011 ME International Consensus Criteria (ME-ICC), which used the CCC as its baseline. These definitions are supported by clinical guidelines for medical practitioners, guidelines also created by experts. These definitions are well regarded by patients, ME/CFS doctors, and ME/CFS researchers. The CCC has been successfully used both clinically and in research for years.

    But rather than adopt these expertly defined disease criteria and their associated medical guidelines, HHS has promoted its own overly broad and inaccurate view of ME/CFS. HHS has questioned the hallmark symptoms of ME/CFS (e.g. Post-Exertional Malaise) and misrepresented the disease in its medical education literature. HHS has even unilaterally reclassified ME/CFS to be a subtype of chronic fatigue, in complete opposition to the standards set by the World Health Organization and all other countries that classify this illness as a neurological disease.

    Now, HHS is intent on creating new criteria for ME/CFS using the IOM, an organization whose single effort to define a disease has been harshly criticized for redefining the disease too broadly and for using non-experts to define the disease. Repeating the error made in defining Gulf War Illness, HHS has stated its intent to use non-experts to define ME/CFS. This is a very serious concern for patients who face widespread disregard from the general medical and research community. Adding to these concerns, the description of ME/CFS in the January 2013 IOM report failed to accurately represent the illness, listing CBT and GET as treatments, treatments that experts have said can be harmful to ME/CFS patients.

    HHS is going ahead with the IOM contract unilaterally, ignoring overwhelming opposition from the ME/CFS community. HHS is undermining the work of our experts while patients are suffering and dying. HHS must stop wasting precious time and dollars. HHS must stop wasting our precious lives.

    strongly urge HHS to abandon its plans to employ the IOM to define clinical diagnostic criteria for ME/CFS. It is time for HHS to adopt the Canadian or International Consensus Criteria and use that definition to drive an aggressive campaign of fully funded research and to reeducate the medical community.

    Sincerely,


    (Your name)
    (Your city and state - or country)
    Iquitos and Sasha like this.
  4. readyforlife

    readyforlife Senior Member

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    I thought they decided not to go ahead with this. This information should be on the front page of Phoenix rising. I just happened to see this, I wonder if other members know this is back going. I sent the letter out when I first heard about this and then heard they backed down. I will re-send another letter.
    Thank you for bring this to my attention.
    jspotila, Sparrowhawk and Nielk like this.
  5. Nielk

    Nielk

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    An article is coming out soon. For the meantime this thread was started since time is really of the essence. Thank you for sending your letter and I hope that others are taking the initiative too.
    readyforlife likes this.
  6. readyforlife

    readyforlife Senior Member

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    OK just sent mine, this so pisses me off. I have waited so fricken long for change.
    leela, jspotila and Nielk like this.
  7. Nielk

    Nielk

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    I feel the same.:mad:

    It would be great if everyone tried to send the e-mail again each day. This is really that important.
    Rrrr, jspotila and Sasha like this.
  8. WillowJ

    WillowJ Senior Member

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    It'd be really great to contact DHHS with one of these or your own message, particularly a message about collaborating with our researchers and orgs (best to change at least the first sentence or paragraph or add something right at the beginning: original or personalized correspondence makes more impact than copied correspondence, or so they always told us when we were writing Congress for other things in my earlier days).

    Also consider sending to your own representatives.
    http://www.usa.gov/Contact/Elected.shtml
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  9. readyforlife

    readyforlife Senior Member

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    I also just sent emails to my congress woman and representatives. Also to the white house/Office of Science and Technology Policy/Executive Office of the President. This took me about 45 minutes to do, but worth the time and effort.
    Readyforlife
  10. Nielk

    Nielk

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    Thank you readyforlife!:thumbsup:
  11. Sasha

    Sasha Fine, thank you

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    I wrote a lead para saying I was too sick to compose my own letter so was copying that of another patient whose text expressed my opinion. I also said they'd probably get a lot of copied text because so many of us are too sick to manage to write for ourselves and that they shouldn't discount those emails - it's a sign of our illness.
  12. readyforlife

    readyforlife Senior Member

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    Good idea to remind people to add a short sentence of their own the the beginning of the email. I always do this to send a personal touch, I make it short and sweet.
    Sasha and WillowJ like this.
  13. readyforlife

    readyforlife Senior Member

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    I'm sure the government satellites have just zoomed on to my house and I will be tax audited, put on a watch list, no fly list, have my voter card retracted. :p
    Rrrr and Nielk like this.
  14. Nielk

    Nielk

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    But. they will still accept your tax money!:confused:
    alex3619 and readyforlife like this.
  15. Sparrowhawk

    Sparrowhawk Senior Member

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    Sent email last night, customized first paragraph, will do again tonight.
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  16. Nielk

    Nielk

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    Thanks Sparrowhawk - we need to band together here for a strong action!
  17. Sparrowhawk

    Sparrowhawk Senior Member

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    Last time we did this there was an almost immediate response on the CDC website. Any motion along those lines this time?
    Also, I know there is that cc on the emails so that group can count how many are sent, anyone know how we are doing on that versus last go round?

    My concern is everyone rallied for the first push, and then said job well done, and put it out of their minds. So we may not be getting the same participation level this time? I'd like to be wrong...
  18. medfeb

    medfeb Senior Member

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    Hi Sparrowhawk.

    About the number of messages...
    We had about 100 a day for the first few days and then they tapered off after the original solicitation request was canceled.

    Yesterday, we had almost 100 but its down today. I know some people have shifted to contacting congressional leaders but I dont have a way of counting that.

    For anyone who is able, please keep those letters going to congressional leaders, the president's science advisory and HHS.

    Mary
    Sasha, Bob and Sparrowhawk like this.
  19. Sasha

    Sasha Fine, thank you

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    Maybe people think that they don't need to send an email because it's the weekend - but we do!

    And we need more emails. If you haven't sent your email yet - from anywhere in the world - please do it now, and keep doing it daily!
  20. readyforlife

    readyforlife Senior Member

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    Sent mine out this morning. If they ignore us, it will be an interesting CFSAC meeting in November.
    Nielk likes this.

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