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"Intimidated, Frightened, Threatened with Eviction" - CFSAC Spring 2013, Day Two

Discussion in 'Phoenix Rising Articles' started by Mark, Jun 14, 2013.

  1. Sasha

    Sasha Fine, thank you

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    Nielk likes this.
  2. SOC

    SOC Moderator and Senior Member

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    I'm not surprised that advocates are already working on this. :) I certainly don't want to duplicate anyone else's work -- there's little enough energy among us -- but I'm willing to pitch in if my experience can help any ongoing effort.
  3. Nielk

    Nielk

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  4. 5150

    5150 Senior Member

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    This disease should be Front Page News everywhere in America. The NIH and the CDC (The U S Government) has the power to do it. But they delay, linger, and wait. Meanwhile, lives are in ruin. Many face cancers and heart failure, and ad infinitum-ad nauseum. This process is All Wrong. There needs to be a rapid urgency, as with AIDS, in getting to the causal agent, treatment, and God willing: a Cure.
    Meanwhile, we are living lives of unthinkable low quality. And ultimately, it is a killer disease. It's just that the journey is long and tortuous. This kind of foot-dragging , "convince-the-committees" process, is so wrong. Having to Beg for Help at this stage is immoral on the part of the US agencies.
    Question: where are our AIDS community brethren? We helped you!
    taniaaust1, Shell and ukxmrv like this.
  5. Nielk

    Nielk

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    I think that one of the problems is that as Dr. Munos stated at the FDA meeting - "there is nothing sexy about Chronic Fatigue Syndrome.

    It is a boring, misunderstood, understated, complex disease that very few seem to care about. Like someone said - it is not a death sentence, it is a life sentence. Because of it's nature, it is also very isolating so people don't see us suffering. How to change all this? That is the million dollar question.
    vli and SOC like this.
  6. Sasha

    Sasha Fine, thank you

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    But there's nothing sexy about any disease!

    It's the well-understood diseases that I would have thought would be boring for researchers.
  7. ukxmrv

    ukxmrv Senior Member

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    CFS could be made "sexy" but showing people who are prisoners in their own homes and comparing to solitary confinement or unlawful imprisonment.

    If the front pages of newspapers showed people unable to leave their beds and their homes being tube fed and the suicides I think that the "sexiness" would be associated with it. The homes of course, need to be crap. We need to show the poverty. Well people don't feel sympathetic or are terrified that they get to stay in their nice warm, comfortable large homes with someone looking after them. Even if that means they have to give up their professional jobs.

    I'm reading "sexy" as being terrified that it might happen to them.
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  8. Nielk

    Nielk

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    That's a good point. This is one reason, I think that there was such panic regarding AIDS, specially in the beginning. No one was sure how it was transmitted and everyone thought they might be at risk for contracting it. This definitely raised people's interest. I don't think that people out there feel threatened that they will be stricken down with Chronic Fatigue Syndrome. Many think that they already have it. (witness the claims of many saying "I'm always tired too...yet, I go on and function in my life) Others think that it's a matter of choice. (One chooses to be lazy and lie around all day) The rest think that even if they are at risk, it is a benign, mild condition where you just have to take some supplements to strengthen yourself. My own GP who has been in practice 40 years says that I am the only patient that has ever "claimed" to suffer from CFS. Since he is not too concerned about me and has no other patients like me why should he bother to educate himself about this illness?

    I hope I don't sound too cynical here. I have had a real hard day.
    Shell, vli, Bob and 2 others like this.
  9. Gypsy

    Gypsy Senior Member

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    My. After 10 years of this crap, this thread once again has me totally confused.

    Nielk

    Is there any way you can find a new GP who might be more understanding of your illness? I am thoroughly confounded that someone practicing medicine for 40 years says that you are his only patient who "claims" to have ME/CFS. That really makes me angry for you. "Claims" to me means disbelief. I have seen so many doctors and after explaining my history almost every one has said that they have heard of/seen other patients like me who got mononucleosis and went on to develope continuing health problems, call it CFS or not. I don't think we are a bunch of rare patients honestly!
    Nielk likes this.
  10. Bob

    Bob

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  11. Nielk

    Nielk

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    If you want to watch the "intimidation" section, it is at 00:42:20 of this video

    .
    Valentijn and snowathlete like this.
  12. Tom Kindlon

    Tom Kindlon Senior Member

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    Thanks, Mark, for your two reports.

    I've now highlighted both of them to 8 mailing lists, my 875 followers on Twitter and on my Facebook and G+* pages. Thanks again.

    *I've almost given up on G+. Don't get many +1s, shares, etc.
    ukxmrv likes this.
  13. snowathlete

    snowathlete

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    Eileen started talking at 42:10 and only 12 seconds later at 42:22 she was told that she had only 2 minutes left. The chair didn't even say to her that she had her three minutes the same as everyone else (which if he didn’t know what was coming, could be deemed reasonable), instead he actually tried to reduce her time to 2 minutes 12 seconds in total (a reduction of 48 seconds - about a quarter of her allotted time). It seems to me he knew what was coming and as she said was "trying to shut her down".

    And I guess it worked because she actually only continued talking until 44.14, a total of 2 minutes and 4 seconds, not accounting for interruptions.

    Pretty appalling.
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  14. Mark

    Mark Acting CEO

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    Thanks Tom. :) I hope people find them helpful; I know a lot of us don't have the time or energy to watch the full video.
  15. Bob

    Bob

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    In case anyone wonders about the chair saying that Eileen was 'out of order', the term was used formally. It wasn't a casual remark. I think the Chair is referring to Eileen's attempt to overrule his decision re the 'two minutes'. 'Out of order' is chair-speak, for ruling something 'in order' or 'out of order' in terms of committee proceedings.
    Valentijn likes this.
  16. Nielk

    Nielk

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    Regarding CFSAC's committee (was it Unger?)statement that the CCC definition is too complex for clinicians, I have been reviewing the definition of Lupus and came upon this:

    This sounds pretty complex to me. Not only do patients differ in the way their symptoms present but there is variety in the outcome of lab test results. Why can't they give us the same type of comprehensive adjustable evaluation for our benefit?

    We just have to fit into the cookie cutter mold which they initially set up for us and if it doesn't fit us, we are discarded?
    Valentijn, SOC and Purple like this.
  17. Ember

    Ember Senior Member

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    Intimidation is unacceptable. But the “drama regarding threats and such” might lead someone less committed to your version of “moderate and realistic advocacy” to invoke your own first requirement: “When you endlessly repeat [your views] and refuse to accept reality, then you are creating a problem where there doesn't need to be one. Regardless of what is ideal, our first requirement is to pursue goals which are achievable.”

    In November 2011, Dr. Unger wrote, "Opinions of advocates, clinicians and researchers remain divided about whether CFS and ME are the same or different entities. However, we are following the discussions with interest and would consider any consensus that is reached by patient groups and the scientific community going forward." You dismiss the engagement of such a consensus as a “hardline stance,” creating “headaches and unpleasantness for the rest of us.” Yet it's hard to imagine a posture more distressing and disempowering than our present one.
  18. Nielk

    Nielk

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  19. medfeb

    medfeb Senior Member

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    Bob
    I just wanted to followup on your comments...

    At an earlier point in time, Eileen had asked for time to give a report on her subcommittee.

    But at the time that Snowathlete referred to, they were specifically talking about the CFSAC case definition recommendation. Dr. Lee said there had been controversial discussion in subcommittee calls and said she did not want any more discussion on the definition in the CFSAC meeting. Dr. Marshall said he would allow for three more people to speak. After Dr. Fletcher expressed her concerns, Eileen spoke and said that the case definition topic was too important to only give it 3 minutes. Dr. Marshall told her that she now only had two minutes taking away 45 seconds of her time. It was at that point when she said she would take the time that was needed. He replied that she was out of order.
    I agree with Dr. Fletcher, Steve Krafchik and Eileen - the case definition is the most important issue that the CFSAC could deal with. But nothing was done about it at this meeting and we are left with only vague and conflicting information about what DHHS is planning.
    Nielk and ukxmrv like this.
  20. Bob

    Bob

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    Agghh... How is it that I manage to invent information, and then convince myself that it's a memory? Stupid brain!
    Thanku, medfeb for explaining it to me... And I've just rewatched it, after reading your post...
    Apologies to snowathlete... Your interpretation was spot on, as you know...
    I'll go back and delete my post.

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