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Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
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Fighting For a Stake! FDA Cold Shoulder = More Action On Treatments For ME/CFS

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 19, 2012.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog
  2. K2 for Hope

    K2 for Hope ALways Hoping

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    Jacksonville, FL 32258
    Just to confirm, I copied the email addresses and put all into the cc: section of my email letter except I pulled the one for Dr Janet Woodcock out and put it into the to: section (janet.woodcock@fda.hhs.gov,).

    I then copied the Subject "Request for FDA Stakeholder Meeting on Chronic Fatigue Syndrome" and pasted into subject line of email.

    I then copied the rest of the letter from "Dear Dr. Woodcock:" to the last paragraph.

    I then signed with my name and address, city, state and zip code per sample.

    Thanks for the notification. We MUST continue to advocate for our cause.
  3. karmajinpa

    karmajinpa

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    Don't know how or why, but all the addresses, with the exception of Dr. Woodcock's would not go through as they were copied and pasted. I re-checked with the originals and couldn't see the problem. Did anyone else experience this and, if so, what are the correct emails?
  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    Is this a one time deal or is it supposed to be daily?

    GG

    PS I thought this similar action was supposed to be daily.
  5. Sing

    Sing Senior Member

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    New England
    I will write and cite as an example of a drug which could be very useful to us, the still not FDA-approved "Northera" from Chelsea Therapeutics. The FDA would not approve this drug, although it has been used for years with success in Japan and Europe, because of the risk of supine hypertension. Well, any drug which increases blood pressure is apt to do that too. Midodrine, which has been approved for years, does that, though it is considered a less effective drug for NMH.

    See this link http://www.fiercebiotech.com/press-...complete-response-letter-food-and-drug-admini
  6. Grape Funk

    Grape Funk Senior Member

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    how many letters did we send in last time around and from how many different email addresses? I am curious to see how many people are sending emails and participating. Main Organizers should know as we attached the me action email address.
  7. medfeb

    medfeb Senior Member

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    That's fine, K2. You can also just copy all the addresses into the 'To' box
  8. medfeb

    medfeb Senior Member

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    I just tried it and all of the addresses did work - at least I didn't get any 'no delivery' emails

    If you still can't get it to work, can you copy from this message?

    To: Kathleen.Sebelius@hhs.gov , margaret.hamburg@fda.hhs.gov, janet.woodcock@fda.hhs.gov, howard.koh@hhs.gov , brian_ahlberg@harkin.senate.gov, Michael_Barnard@menendez.senate.gov, Alex_Stern@mikulski.senate.gov , jeff.carroll@mail.house.gov , monica.volante@mail.house.gov , Annie_Walden-Newman@murray.senate.gov , mecfsaction@yahoo.com
  9. medfeb

    medfeb Senior Member

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    Grape Funk
    A few hundred emails were sent to the MECFS Action address but some organizations used a different tracking address and some removed the address. So the total was more than that.
    Mary
  10. karmajinpa

    karmajinpa

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    That did it! Thanks so very much. :)
  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    Any one know the answer to this?

    GG
  12. Sing

    Sing Senior Member

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    APOLOGY: I forgot to say the most important thing which is that "Northera" is a drug for NMH, Neurally Mediated Hypotension, Orthostatic Intolerance.

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