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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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Article: Phoenix Rising Joins Coalition of Non-profit ME/CFS Organizations to Produce Change

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 16, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. SpecialK82

    SpecialK82 Senior Member

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    Cort this is an exciting step!

    Will the Coalition 4 ME/CFS have paid employees? I believe that we need to have healthy people on board that can push hard and are compensated for meeting pre-established goals. I am concerned that a group of only sick volunteers will not create the power that we so desperately need.
  3. Cort

    Cort Phoenix Rising Founder

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    Thanks! We sure could use some healthy paid employees :cool: and that has been discussed but we are quite a ways from being able to do that. Instead we will use the collective resources from all these organizations (and anyone else who would like to help out - just email us).

    We feel that the simple fact that we have a Coalition of non-profits (and the number will certainly grow as more Boards of the different non-profits meet this month) will give us a voice at the federal level. In fact, one member has already been told by an official at the NIH who is behind us that he's been waiting for us to do this for years.

    The governments provides a certain listening to non-profits that it doesn't to other groups. That is one of the reasons that Coalition is focused on non-profits - although other organizations can join at a different level.
  4. Nielk

    Nielk

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    Congratulations!

    What a great idea. There's definitely power in numbers and unity.
    Hopefully, we'll accomplish great things together.
  5. Cort

    Cort Phoenix Rising Founder

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    Thanks Nielk - we're really excited. I don't when the last time a Coalition of ME/CFS groups was formed. There is an alliance of FM groups in Europe and there's a really nice Alliance of CFS/ME groups in Australia but we're like the sleeping tiger here.

    Mike Munoz of the Rocky Mountain CFIDS association was really the driver here. He worked in the non-profit industry before he became ill and has always thought we should band together. He and Marly Silverman plus Mary Dimmock and some others really brought this together.
  6. WillowJ

    WillowJ Senior Member

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    that's really cool

    any chance on hearing who at NIH claims to have been behind us for years? what kind of a position does this person have and is there anything they have been or could be doing for us? do they need a thank-you note or some other kind of encouragement from us?
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    The coalition does have a healthy person helping. But not paid......yet.

    Tina
  8. Cort

    Cort Phoenix Rising Founder

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    I know the story but not the person's name. I suppose it might not be good, given what must be rather negative perception of us at the NIH, for that person's feelings to be known - but hopefully we will a reason to thank somebody over time. We certainly do have our advocates there; Dennis Mangan and Wanda Jones are two of them and Dr. Koh says he is altho, in my opinion, he has produced little. There is the Workshop coming up - which could be huge - but we were way overdue for that.

    What we need is funding and someone who can impact the situation in that area. The Workshop should help there; a major grant opportunity usually follows workshops like that.
  9. SpecialK82

    SpecialK82 Senior Member

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    Thanks Tina, so great to hear!
  10. snowathlete

    snowathlete

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    Well done, thats great.

    I think the work you and the others behind promoting our cause is admirable. If i were allowed to pick who got the noble peace price, it would be you!
  11. WillowJ

    WillowJ Senior Member

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    I wondered if the person's name was secret because of the politicised situation. That's understandable but not very brave. (Unless it's somehow strategic, but that seems rather unlikely.)

    Mangan is new to the Disease and can't be blamed for past transgressions. I believe he's for real, although he doesn't seem to have a very high-level position. Some event like the Workshop is evidently supposed to have been happening every 2 or 3 years. Mangan is doing his job to hold the workshop (seems incredible that merely doing the basics seems a huge concession). He is doing right by us to put it together the way he has. I agree that this could have an important impact in the field.

    I've heard Wanda Jones' name but I don't understand her role. Can you tell me what she does? And who is Koh? You can send me a pm if you'd rather than than in the thread.
  12. Hope123

    Hope123 Senior Member

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    Dr. Howard Koh is an Assistant Secretary at the Dept. of Health and Human Services (DHHS) ; he attends the federal CFS advisory committee and just started last? year. He is suppose to help carry the recommendations and thoughts given at CFSAC (federal CFS advisory committee) to the Secretary of DHHS, Kathleen Sibelius, who is appointed by the President. Sibelius' position is a Cabinet level appointment like Secretary of State. DHHS is important because NIH, CDC, Medicare, Medicaid, FDA, Surgeon General, public health clinics/ hospitals are all under its umbrella. So it's important that DHHS understands what is going on as these agencies actions affect our lives.

    HOWEVER, we've never had a proactive Asst. Sec.; some only attend part of the conference or don't attend it at all. CFSAC has been in existence for almost a decade yet there isn't any evidence I know of that CFSAC ideas have been conveyed to the head Sec. of Health. Pretty weak, huh? Dr. Koh, if you're reading this, I hope you do better -- we need your help.

    Gov't agencies are a tangle and people change from time to time but it's important for people to understand the players as much as possible. Putting ones' thoughts on a forum are one thing but writing to specific people in gov't or even knocking on their office doors/ pounding the pavement on Capitol Hill will be another.

    http://www.hhs.gov/ash/leadership/ash.html
  13. Cort

    Cort Phoenix Rising Founder

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    Thanks for the great summary. We've had Asst Secretary of Health's who have said the right things - they all say the right things but we've had almost zero production from them. KOH is yet another example of that. Yes, the Workshop is being produced but the last one was 8 years ago! So we were way overdue.

    Mangan is definitely working hard. He is the head of the Trans-NIH Working Group - which is a group of Institutes which determine which projects and grants they will fund for CFS. Since none of them are individually responsible for CFS and all of them are responsible for other disease, the Working Group is a recipe for inaction. We HAVE to keep our eyes on them.

    Mangan is trying but he has to somehow corral a bunch of uninterested Institutes into supporting CFS.

    Wanda Jones is the NIH liason to the CFSAC committee. She does great within the Committee but how far she can go outside of that is unclear. I would think not far.
  14. WillowJ

    WillowJ Senior Member

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    thanks for the info. I agree that it's important to understand who is responsible for what. Thanks, Hope, for the link to write to Asst. Sec. HHS.
  15. laura

    laura Senior Member

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    Just wanted to say I'm really glad CFS organizations are joining forces. There are a lot of us, and the more we come together the louder our voices can be heard. I hope more join...
  16. Cort

    Cort Phoenix Rising Founder

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    Thanks Laura, We propose to make a REALLY LOUD VOICE...Of course to do that we need as many orgs as possible. More are on the way....)
  17. Kelvin Lord

    Kelvin Lord Ampligen Journalist

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    Cort,
    This is great, Cort. As usual, Phoenix Rising is on the front lines making a difference. Thanks for all you do.
  18. ixchelkali

    ixchelkali Senior Member

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    Good! Power to the patients!

    Compliments on a well-written piece, Cort. I think you're right that this needs to happen and that the time is now.
  19. Cort

    Cort Phoenix Rising Founder

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    Thanks Kelvin and Ixcehlkali

    Power to the patients indeed. That's the only way I think we can get things done - its up to us to push the govt.. We simply have to learn how to advocate effectively - which takes creating new organizations and structures to do this. Mike Munoz's non profit background will be helpful with that. The nice thing about the Coalition is that it is an organization and we'll go about this in an organized fashion instead of firing off in an ad hoc way. I think that will help.

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