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Are you aware we are fighting for our lives? IOM panel Death Panel, is going to change everything i

Discussion in 'Institute of Medicine (IOM) Government Contract' started by readyforlife, Oct 14, 2013.

  1. readyforlife

    readyforlife Senior Member

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    Are you aware we are fighting for our lives? IOM panel Death Panel, is going to change everything if not stopped.

    I use to only go on the Phoenix Rising forums to read and respond to the symptom and treatments section.

    I’ve never even looked at the ADVOCACY AND FUNDRAISING section. I’ve never been involved in ADVOCACY or really understood the importance of it.

     
    I would go to the forums SYMPTOM AND TREATMENT section daily looking for the magic pill or answer. But the truth is we don’t have a treatment that will cure us.

    I have spent over $10,000 dollars over the years trying everything to get better. Nothing works or it works for awhile and than stops.

    The answer to a cure isn’t in the symptom and treatment section it’s in ADVOCACY.

    With out your participation we are all going to die with out treatment or a cure.

    This is a post from a PR member and I couldn’t agree more. I use to be one of the 230 people posting about treatments. I know his tone is aggressive but we are getting frustrated with the lack of interest or participation within our community.

    The lack of Critical Mass and the tepid response from this community is disheartening. This is a life and death issue for patients. This will determine your care for the rest of their life! We have 230 people signing on PR at any one time and most of you are posting about treatments or complaining about your illnesses.
    So I have become disheartened and I'm disengaging from this cause. I cannot help people that are unwilling to help themselves! I know that most are sick but if you can post on here about treatment options or complain about your symptoms, than you certainly can make a posts to support or discuss this issue and to raise awareness in other social media circles! The postings must be continue until this issue is resolved in our favor! Your life and treatment is dependent on this issue.
    Come over and get involved with ADVOCAY and help save yourself.
    Readyforlife
    Izola, justinreilly and Marty like this.
  2. readyforlife

    readyforlife Senior Member

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    Well I tried to post this on multiple threads to get the word out but do to forum rules they were deleted and posted here. I didn't post this to advocacy because everyone is already aware of what is going on here.
    justinreilly likes this.
  3. caledonia

    caledonia

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    As far as a slow/tepid response from PR, Mark, who is the main guy behind the scenes has been out sick for a couple of weeks, and will probably be out another week or two. He's aware of what's going on, but can't doing anything about it right now.

    Certain parts of PR (such as moderation) work ok without Mark, but other parts, such as we are seeing with advocacy, don't function without his leadership. So when Mark comes back, I have every expectation that PR will be addressing the IOM issue then.

    Any kind of volunteering that anyone can do behind the scenes to help out would be great. The goal is to get all the parts functioning on their own so that Mark doesn't have to do everything himself. I was actually blown away when I found out how much he was doing, and even though he is somewhat higher functioning, no wonder he is sick.

    If anybody knows of any healthy people, such as friends or family members, who would like to volunteer, that would be great. I think everyone is a patient right now.

    Here is a link to the kind of volunteers they're looking for:
    http://phoenixrising.me/volunteering
    SanDiego#1, beaker and SOC like this.
  4. cigana

    cigana Senior Member

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    Hi readyforlife,
    You can try putting some of this into your signature, that way people can read it whatever sub forum they are in.
    I believe we have the power to get treatment fast, but I also think that due to human nature it will never happen. I have lots of ideas but fundamentally people don't get involved unfortunately.
    What really bugs me is that the parents/family of all the sick people haven't done anything remotely approaching what they are capable (even with spending money). I think it is those people we should be encouraging, because they can actually go out and demonstrate.
  5. Ecoclimber

    Ecoclimber Senior Member

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    We are going to have to go outside this patient community. We have about 10% or 25 people who consistingly helping out but that is not enough in one of the most critical issue dealing with this illness in the last 35 years. This is make it or break it time. HHS is not slowing down and are driving this through in warp speed in spite of the Government shutdown. That should tell you something.

    Those of us who are working on this issue are getting burned out. Some had to let go and rest.

    We have a blogger that is working to refute Pandora's statement and is in the process of fact checking their statement
    Asleep is working on getting the message out to other patient groups but we need more people to contact other patient communities to post the message he has written.

    But, quite frankly statistically our response in social media and on the internet is quite weak. 6 -10 comments on blog sites, 2-3 pages of postings on Google is not enough...very anemic. Patients that are working on this issue are a bit discouraged and disheartened. Unless we get more of a robust response from this patient community and other communities, this cause is lost. It has to be the focus of everyone on here and they must keep this focus going until their is a clear resolution in our favor.

    So, we have to change strategies and go outside the patient communities and solicit the help of the genral public to get our message out through crowdsourcing. We have to create a stir. We need to go viral if we are going to get traction. We can't be constantly talking about the issues, we need action. We need to reframe HHS message and put them on the defensive. They have to prove to us that their process is going to benefit not hurt our community. After 35 years, we have the right to mistrust their actions. They have done nothing to assuage our fears, but instead only strengthened them by their actions. They have to guarantee that this is not going to hurt the community in any way, shape or manner.

    So that is why we are developing a strategy of crowdsourcing to get our message out. It might be provacative, controversial but that is what you need to catch the publics attention so they become invested. Most people are clueless concerning CFS. They don't understand the terminology and only have the misconceptions that have been generated by the media over the last few decades.

    If anyone knows of any great ME/CFS videos, post the links here. Videos that are short, thought provoking, catchy or edgy post them on here.

    Remember, that you have to think in the aspects of someone who knows nothing about this illness or what the governent is trying to do. Think what would catch your attention and interest so that you would comment or take some sort of action? We have to do something to get the attention of the public so people everywhere will be talking about it.

    If we can get the public talking about it, than that puts pressure on HHS. It puts them on the defensive. So it has to invoke some shock value, empathy, sympathy or a cause that they can identify with so they become invested. We don't have much time is the main problem.

    A recent example is Bob Miller who gain national attention through his hunger strike. Just to give you a sample of what the patient community is up against.

    If you query YouTube for chonic fatigue syndrome you will get this video at the top of the list. This video has received over 569,000 views, more than any other video on ME/CFS. It talks about the treatment options for ME/CFS. This maybe the future for this patient community. Their treatment option mirrors the recommendation of the IOM board for Gulf War Veterans with CMI.
    Izola and justinreilly like this.
  6. Ember

    Ember Senior Member

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    Pandora lobbied at the June 2012 CFSAC meeting for the development of two case definitions:
    As a result of Dr. Susan Levine's argument at that CFSAC meeting, Dr. Lee began to focus on a broader clinical definition:
    In its September and October statements, Pandora modified its position to read, “At least three different definitions are needed: a clinical definition, a more narrow research definition, and a clinical pediatric definition, and these should be developed together from the same initiative.” The September statement argues, “Numerous researchers tell us that a research definition should be narrower than the clinical definition. A narrower research definition ensures a more pure cohort, which will more likely lead to more biomarker discoveries.” Their statements ignore, however, the experts' position:
    Pandora ignores too the fact that the ICC is both a clinical and a research definition.
    peggy-sue likes this.
  7. Ember

    Ember Senior Member

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  8. Nielk

    Nielk

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    There is something you can do if you don't like or feel comfortable with what is happening with the HHS/IOM contract. Your action will make a difference. Every letter, e-mail, phone call, signing of petition matters. They all get read and there is power in quantity.

    If you would like HHS to cancel the IOM contract, please take action. Please write to your representatives in congress HERE. You can sign the petition to stop the IOM contract HERE. The petition in support of the expert's letter is HERE.
  9. Izola

    Izola Senior Member

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  10. Izola

    Izola Senior Member

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    Besides the basic drugs for pain, sleep, headaches, occasional antibiotics & mild seizures, up until recently my Dr. has been too timid to do much. But for the last 3 months she's put me on light IMG, about 2 Mg/wk. I've known for years that I'm toast. Before, I couldn't even set up an email account nor get into the same one I'd had for years. Oh, yah, mobility is an issue. I had the delightful experience of slipping to the floor in Walgreens recently--couldn't move my limbs much for a while down there on that cold floor. But the EM's were cute and had a great comedy routine.
    Anyway, I hibernate-really-between Dr. visits. 5 days of sleep, 1 day of post exertion adrenaline, & then (chronology mixed up) the Dr. day again. One day at the end of October I lurked around this site & others, but I thought what I read was current and happening as I read it. I must have been my adrenaline day. I grew angry, scared & really militant. And that stuff my doctor was injecting weekly wasn't just saline solution as I was beginning to suspect. I got scared stupid. Now I'm ready for the black arm band.
    On a lighter note, March on Washington? We can do better, We can gather up some of the others who can grab us, blankets, pillows & all and drag us through the streets of Washington, all of us leaving drag marks , like snails, through the city streets and sidewalks.
    I don't think the beaurucrats (sp?) have even contemplated whether some upward towards a million real people might succumb to an early death. Its only been recently that the FDA acknowledged that they didn't realize how really sick we are. Duh.
    When working for the Air Force at one of its Pentagon branches (in an out building a mile down the road, as a lowly clerk with a clearance level slightly below being allowed to know where they put the bathrooms, my boss would go to lunch and point to the long row of "SECRET' I'm ready to fight and working on it. No hibernations for a while. I'm educating myself (w/ this site's help) I just hope I can keep myself w/in the required parameters of civility.
    justinreilly and Nielk like this.
  11. Nielk

    Nielk

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    Hi @Izola - welcome to the forum. I'm hoping the IMG infusions are helpful for you. I wish we could organize some type of demonstration - even if it is only a public sleep-in! Because most of us are so disabled, it is hard to organize anything. Any help from anyone able to do so is greatly appreciated.
    justinreilly and Izola like this.
  12. Izola

    Izola Senior Member

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    Oops. Thanks for the like Nielk. I thought I was on a blog & I sort of went off course babbling, thinking I could delete most and leave something coherent & cogent, but that little pad that replaces my mouse sometime does its own "enter and send." So, its back to doing the things I need to do to be a serious advocate. Oh, yeah, probably "Secret" Pentagon files are still being "protected" by 92 lb 18 year olds. The "secret" is to ignore as much as you can & leave the worrying to the powerless. Izola
    Nielk likes this.
  13. Izola

    Izola Senior Member

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    On the post a few spots above this post, that I wrote in Response to Readyfor life, I rambled irrelevancies and dumb stuff all over. I didn't mean to post all that junk. Most times I have to type dumb to ease to the salient. Then I erase the dumb, rewrite and after all that, post. I know you all must have slogged through the dense bogs and curtains of pain and tripped over the pit holes in your brain trying to get to what you want to write. I apologize to you, Readyforlife, for that inane response, (The thing about being dragged through D.C., that was just to levitate) You are right. This is a life and death issue for us and we better keep fighting.
    To prepare for forum conversations, I need to know if there is a word or time limit? That post posted on its own. I never want that to happen again. Izola
  14. Helen

    Helen Senior Member

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    Thanks Nielk for this post with helpful links. I quoted the link to the most simple way of taking action. More than 17 million people are affected by ME/CFS and only a few more than 3000 have signed this petition!? What´s wrong? Even relatives and friends can act here.

    Avaaz petitions have surely made a change in many cases and shouldn´t be neglected.
  15. Starfive

    Starfive

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    When able to function I designed websites with emphasis on search engine optimization aka SEO. Essentially what we see at the top of search results gets there by a series of complicated formulas I.e. how often a key word (the search term) appears on the page, what order that word is placed in a string of words, etc. I will put some thinking time into how we might as a group place our best consensus definition out there emphasizing that group of words together. Meanwhile regarding youTube...If we had one of the videos posted above chosen to best represent then we could all visit that video often, send that video to friends and family and influence the going viral of the information. Or perhaps someone in the group could make a simple video highlighting the consensus we want to be viewed and the need for research funding then we could focus on making that video the major player on youTube. With the Internet much can be done with one main message that can easily be passed on.
    What do you think?
  16. Izola

    Izola Senior Member

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    Starfive: I would like to see us continue trying with the videos & such.

    I know many of us are burned out by the holidays--the stress of visiting, or visitors, or, maybe more often, being left out of the festivities all together.

    I know I started to crumble even before the new year. I'm finding it problematic to focus on anything serious. I melted down, way down. Alex. in his wonderful kindness pulled me out of the abyss in spite of the fact that I tried to pull him, no, push him into the abyss before me. Thank you Alex for being so compassionate. Thank you for being you.

    We have all had occasions in this illness that we have had to push past. That can harm you.

    But let's all try to "push up toward." Lets all figure out a way to get everyone able to be, involved in stopping the HHS/IoM from making our lives unlivable and very possibly, as already has been done with to our Gulf war vets, be denied any medical care whatsoever other than CBT, antidepressants and God forbid, exercise.

    I can't imagine a life without medical care. I know many of you don't have even that at all. Right now I have pretty minimal, but better than most med care. Now that I'm getting (low dose) IMG injections. There's been improvement. I can now eat. I've been to the grocer twice. Sat up most of this afternoon. That's a first in years.

    With decent Clinical and Research Criteria such as the CCC and ICC, those of you without medical care will finally have a chance to get it.

    If the DHHS and IOM get their way, as they did with the Gulf War Veterans with Gulf War Disease, we will be denied any medical care other than Anti-depressants, CBT -- Cognitive Behavior Therapy and Exercise. No medical care and Exercise. Not almost Dead. Dead.

    I got overwhelmed trying to do my part in blocking the DHHS and IOM from continuing with what is emerging to be an illegal, harmful and unnecessary contract. I keep having to relearn the same Lesson: Neither you nor I have to do it all alone.

    We can't get this done without everybody who is able to help. Your help doesn't have to be great big. It just has to be some. I know we can set up a system, maybe a site for everybody to describe What they can do in two or 3 sentences--not a long description--just enough.

    And then, maybe, after that, a thread to post assignments--with replies available, of course.

    Some of the legal people are getting stuck in the mud of so much writing to read compromised by the "I read it somewhere and now I can't find it back block."

    For example, we need people to comb through certain threads and pull out certain kinds of information.

    and people with an eye for detail.

    Oh, yeah, is there someone(s) out there good at herding cats?

    People who have worked around or in the legal system and have picked up some of the culture and understanding by osmosis or training.

    Or, for the ex-school teacher minded, we could use a few referees--people who give good atta-boys and can kindly redirect attention.

    And a whole lot more. The above list is just what I could come up with in the middle of the night.

    Does anyone have a clue as to how to identify (cite) a particular set of paragraphs or part of a post that contains a lot of information but what you want is the legal reference "contained therein. . . " (this little 2 word quote is a sample of how lawyers talk while scratching their heads.) Remember high school --aarrgh and college, that sneaky way teachers had of making us prove that we didn't just make it up. I think the internet must have been built by the graduates and dropouts who resented the citing rules.

    Duh, I finally noticed, each poster has a number, each Post is numbered. Someone out there knows how to use those numbers plus whatever it takes (thread names?) to quickly lead a dummy like me (I just sometimes don't see anything but the fruit on the tree.) right to where whoever needs to, to go.

    How are pages identified? That's important--ink's expensive and the Commercialites have spared no expense in preventing us from using our injection syringes to refill our cartridges.

    I have just posted this on my own, without group think, w/o anyone's authorization. I was one of those who helped get us stuck in the mud, so I'm trying to use my M.E. damaged little brain to help get us unstuck. This format is the only way, right now, in the middle of the night after a big day, that I have for the time being, to focus with purpose. Izola
    Last edited: Jan 4, 2014
  17. alex3619

    alex3619 Senior Member

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    If you have a mouse you can left click on that number, which for example in the prior post is #16. It then gives an HTTP address specific for that post.
    barbc56 likes this.
  18. Izola

    Izola Senior Member

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    OMG. Thanks Alex. I have a mouse somewhere. My Grandson, Chris, set it up for me. All I have to do is feed the kid tons of food and, if its electrical or mechanical he will fix it. The mice should come with global positioning devices. Iz
    alex3619 likes this.
  19. alex3619

    alex3619 Senior Member

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    Wireless mice emit a radio signal. You need a gadget to wake them up and home in. Then another to find that gadget. Then another .... ;)
    Izola likes this.
  20. Izola

    Izola Senior Member

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    I get what you are saying but the Video seems to be an advertisement for the Wessley Group: CBT, GET and antidepressives. Ok . . . , I get it. Just skimmed the last I guess too sleepy. Many people are going to be as dumb as I am. A little shorter, more direct. Some of us need to be nudged out our languor.

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