1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

CRITICAL MASS IS NEEDED AGAINST THE IOM CONTRACT!

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Ecoclimber, Oct 5, 2013.

  1. alex3619

    alex3619 Senior Member

    Messages:
    7,073
    Likes:
    10,924
    Logan, Queensland, Australia
    Ecoclimber, to deal with corruption or unfair influence, you need mechanisms for transparency and accountability. Secrecy is the enemy of fair dealing. Even if the intentions are good, and the outcomes are good, the methods used potentiate corruption and unfair dealings. Allowing them to be used is therefore an indirect promotion of curruption of government processes.

    I regard the insurance industry opinions on these things as stupid, backward, and doomed to failure. Insurance companies could funding good research and get good public relations benefits accordingly. Trying to bias government policy using unproven and dangerous research is a huge problem.

    We see what a psychogenic agenda has done in the UK. We do not have to imagine it. Disabled people are committing suicide in droves. Thats a saving to the government, but on a program that is actually costing more than it saves. You can't save money by denying a problem, that just allows the problem's issues and costs to get worse, but it might indeed move the cost to other parts of society, including the average taxpayer.
    Delia likes this.
  2. readyforlife

    readyforlife Senior Member

    Messages:
    136
    Likes:
    135

    I am feeling your frustration!!

    This morning I posted multiple indentical threads across the forum. Trying to get the attention of other members and get them involved. Unfortunately it is against forum rules to do that so they were all deleted and my thread was put under advocacy. I didn't put my thread in advocacy because everyone in advocacy already knows what is going on.

    The name of my thread was.
    Are you aware we are fighting for our lives? IOM panel Death Panel


    Readyforlife
    Delia and Ecoclimber like this.
  3. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,150
    Likes:
    8,613
    Amersfoort, Netherlands
    Blatant hyperbole might get the attention of a few patients, but the vast majority of the public will just roll their eyes and ignore whatever comes after that sort of sensationalism.
    jspotila and Bob like this.
  4. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    621
    Likes:
    1,025
    Mercer Island Wa
    The only thing that gets people's attention these days is shock and controversy. Alex Jones, Rush Limbaugh, Sarah Palin, Michele bachmann just to name a few in the national media to galvanize support otherwise people will tune out.

    I'm believe linking to those advocates who have died would support our premise that the decision of this panel will have fatal consequneces to those who suffer from ME. In memory of those: https://tinyurl.com/nnzd7zu

    In the U.S., the culture and the people are different. What gets attention is the provocative, the Lindsay Lohan, Miley Cyrus etc.

    It puts them on the defensive and shifts the power and control with us, to shape the discussion.

  5. alex3619

    alex3619 Senior Member

    Messages:
    7,073
    Likes:
    10,924
    Logan, Queensland, Australia
    We discuss this on our terms, or we discuss this on their terms. They have discussion on their terms all sewn up. We have to set our own agenda, discussion, terms etc.
    Delia likes this.
  6. alex3619

    alex3619 Senior Member

    Messages:
    7,073
    Likes:
    10,924
    Logan, Queensland, Australia
    The structure of PR is not set up for this. The only way to do this is to post multiple threads on multiple sites. It does not have to be PR. PR is not really an advocacy site. You can do advocacy here, but its not the only goal of the site.
    readyforlife, rosie26 and Valentijn like this.
  7. Nielk

    Nielk

    Messages:
    5,198
    Likes:
    4,986
    Queens, NY
    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.
    Delia likes this.
  8. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    621
    Likes:
    1,025
    Mercer Island Wa
    The fact of the matter is that the community as a whole, is not backing nor supporting those ME/CFS researchers/clinicians who put their signatures and their honor on the line by continuing the action of protest until we prevail.

    They believe that we will tire, we will falter, and we will fail.

    I found the same situation in political activism for various causes. There is this expection or mentality within human nature to let the other guy do all the work. The problem is, if eveyone has that attitude, nothing will ever get done.

    There is a poignant reminder from a from time in history that demonstrated so clearly the results of inaction.

    First they came for the communists,​
    and I didn't speak out because I wasn't a communist.​
    Then they came for the socialists,​
    and I didn't speak out because I wasn't a socialist.​
    Then they came for the trade unionists,​
    and I didn't speak out because I wasn't a trade unionist.​
    Then they came for me,​
    and there was no one left to speak for me.​
    Delia, Nielk and beaker like this.
  9. Keela Too

    Keela Too Senior Member

    Messages:
    185
    Likes:
    366
    N.Ireland
    Ecoclimber - You are preaching to the converted here. Please don't rattle those who are helping as best they can.

    I have tweeted, FBooked and shared this issue too. Getting folk to vote on any petition is not easy, but the best way to get signatures is not to issue guilt trips to those already doing their best. Much better to praise what IS happening and encourage more.

    Yes I totally feel your frustration. Why do petitions with pictures of cute animals, or a single mistreated child get more signatures than our huge issue? I don't know, but that is what happens.

    Let's keep shouting our just cause and applauding all those who ARE helping. ;)
    Delia likes this.
  10. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    621
    Likes:
    1,025
    Mercer Island Wa
    This is excellent for those that helping. But their are a few who are working behind the scenes to help and they are getting burned out. We ask for help and no one volunteers. There is effective advocacy work that will bring results so that message get out to the general public. By posting on threads concerning the IOM contract, having a robust discussion on the material just release about IOM, gets our ranking up in the Google search engine.

    Is it to difficult for those who have blogs to be posting on this every day? Is it to difficult to post in the dicussion threads on this topic so we can gain visibility. We need volunteers to contact other patient communites but there has been no response. There is only a 10% response from the rest of the community. We have several campaigns but no one to start them. There is a decline in our ME community to persist. We are losing visibility and pressure. All of the people are working 24 hours with many days without sleep are getting burned out. If this effort does not generate more responses, then people will start pulling out. Asking for singnatures is great but we don't have the numbers so we musht go outside the community but we do not have number of people to help with effort.

    We have to get this issue to the general people and other patiend communities but no one has volunteered. I mean how difficult to register in the Lyme patient fourm as post a thread as for their help. We have the material to go but no one to do it. This is why the fustration. We need to crowdsource so this take the pressure off out limited sources and gets others to help. There is smart ways to advocate out position but we lack the resources.

    And this message is coming from those working behind the scenes and the blogers out there have been the most effective. Those bloggers are getting discourage and disheartend by the response. Unless, we get more volunteers, we are going to pull out including the bloggers from this effort.
    Marty likes this.
  11. leela

    leela Slow But Hopeful

    Messages:
    2,383
    Likes:
    2,774
    Couchland, USA
    Eco, may I suggest you soften the extremes?

    This may not actually reflect fact, but a perception.


    Who is "they" and can you really know what "they" believe? And does it matter in reality what they think?

    "No One" seems like an exaggeration, given that there are volunteers working now.

    It might generate more response if messages encouraging people to participate were not loaded with language pointing out problems, but focused more on suggesting solutions. People overwhelmed already with illness and related life concerns might become yet more overwhelmed by communications peppered with images of despair, resentment and frustration (which is understandable.) I sympathise with your POV, but I suspect you'd get more response with a simple shift of emphasis.

    I would suggest keeping the communications free from the despair etc, and focus on specifics of what people can do, an open call for more suggestions, and a clear sense of collective power and possibility. Let people feel that they can be contributing to an effort that can bring results, not a lost cause full of angry burnt out people who are losing hope.

    In my direct experience it is always most fruitful to focus on solution-oriented thinking, rather than reiterating problems.

    Again, I understand where you are coming from and think you can rally more support with a small shift in vantage point.

    jspotila, Snow Leopard and Keela Too like this.
  12. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    621
    Likes:
    1,025
    Mercer Island Wa
    We tried that approach and failed asking for patients help, to get involved to create change, to create Critical Mass but received only a tepid response. I don't believe the message is extreme considering. There is a sense of urgency to the message, because there is one.

    The only way HSS wil rescind this contract will be if they are severly impacted by an uprising, by a roar of patients protesting which reaches out to the general public and across patient communities. This takes time, we don't have time. This contract is being rushed through. After stating they rescinded the contract to keep us off guard, they renewed the contract within a few days. It blindsided us.

    Lipkin referred to the tactics used by HIV activist 'Act Up' Tom Hennessy advocated this approach. It is the correct approach as 35 years of prior advocacy work has gotten us nowhere other than CBT/GET. When XMRV was the raging topic, we had hundreds of posting per thread with fewer people then we do now.

    This is the defining moment in the history of this illness.

    Yes, there are many who contribute and yes there are many who are too ill to participate which I have communicated in prior messages that I am not speaking to them. I stated this before.


    However, there are many patients that sign on the forums to post messages about treatment options or complain and despair about lack of treatment, their symptoms, and their life. There are people who come on here to chat and socialize or read through the various posts. If they have the time to engage in these activities, certainly they have the time to help us in our advocacy work which is a positive aspect to bring about the change we are all seeking. By helping in this campaign, they are helping themselves. They are helping others and future generations. What is more uplifting and noble than a cause to get better treatment options and recognition? We have advocates working behind the scenes that are quite sick as well but they are still helping because they know the conseqences of inaction and silence. But, there are patients that have friends and family members that can log on here and ask, how can we help! Look at the threads on the Pace Trial and EDS, showing a robust discussion on these threads. What is the reason that patients do not post on the threads for the IOM contract?

    We been asking the community to participate through discussion. We cannot understand why their is a lack of not only robust discussion concerning the previous actions of the IOM concerning another patient community. There is no the discussion on the IOM, itself based on all the material provided? There is hardly any one viewing these threads. Just by merely discussing the various issues with these threads, it raises the level of ranking in the interent search engines. How can that be too difficult for people?

    Who knows more about the tatics of government than investigative reporter Hillary Johnson of Oslers Web. These are her tweets.

    Hillary Johnson ‏@oslersweb Tweets Messages

    16 Oct IOM "experts" should be experts in pathogen discovery. But IOM is hauled in to solve CDC's political problems: autism, Gulf War and now M.E.

    16 Oct "The results of their efforts frequently form the basis of public policies for decades to come." From IOM website, describing committees.

    14 Oct For conspiracy freaks only: Sebelius, Fauci, Frieden etc. actually know EVERYTHING about this disease. Why they need a do-over--and fast.

    14 Oct Demand feds read CCC. Q+A can follow, led by Drs. Peterson, Cheney, Maryann Fletcher, J. Montoya, Martin Lerner. Okay, just another fantasy.

    14 Oct Sebelius and Unger know zero about this disease, as will majority of putative expert panel. That's the whole point. Roll back history.

    14 Oct Pandora's playing patty cake with gov? Sorry to hear various politically inept folks are in DC speaking on behalf

    14 Oct Just read Pandora's take on IOM. IOM avers those with "strong bias." CDC said same in 80s/90s-they meant anyone who believed disease existed

    13 Oct IOM contract has nothing to do with science. Once you understand that you will know how to play this. No cooperation, only resistance.

    13 Oct Per John Herd: "If advocates sit on committee, they will be played." Do not cooperate with Fed's scam artists. Nor should the 35 experts.

    12 Oct What Mindy said. http://www.cfscentral.com/ New experience to see people who have been screwed by Feds for 3 decades starting to "get it."

    10 Oct Check out Erica Verrillo's blog on IOM: http://cfstreatment.blogspot.ca/2013/10/clearing-air-or-breaking-wind-comment.html

    10 Oct Whoops, I misspelled Kathleen Sebelius's name in earlier tweet.

    8 Oct Support the signatories to the Sebellius letter of opposition to the IOM contract. Support advocates working for U (which excludes CAA).

    8 Oct $1 million wasted is not the point. DHHS will save billions in research, disability payouts, etc., in long run if IOM succeeds.

    8 Oct IOM contract most aggressive act by DHHS against patients in years. Very serious matter. Fight or live to regret it. IOM? CDC's handmaiden.

    4 Oct Emancipation proclamation! CDC shut down. A fond fantasy of 25 years come true. Tea party, want to save money? Eliminate CDC, not Obamacare.

    2 Oct IOM to utilize "behavioral health" experts? Two words: F*** off.

    2 Oct I don't want consensus--I want science. Consensus building resulted in fraud of "CFS." Did Pasteur or Koch or Charcot worry about consensus?

    2 Oct CAA sez IOM to use "consensus building methodology." That's not SCIENCE, that's just more politics, which is all HHS has ever done re ME

    1 Oct CDC is mostly shutdown, thanks to tea party loons. Now comes concerns agency will be unable to respond to disease outbreaks---AS IF!


    29 Sep "...Viral infection..." Why CDC/NIH can't let CCC stand and needs to rebrand via Institute of Medicine. This is war, this is crunch time.


    29 Sep CCC: "While the pathogenesis is suggested to be multi-factorial, the hypothesis of initiation by a viral infection has been prominent."

    29 Sep http://www.thestate.com/2013/09/29/3006173/king-the-importance-of-getting.html … AMEN

    29 Sep If U think IOM contract is being rigged up to screw U--U R 100 percent correct. HHS needs CCC definition to go away forever. This is war.

    29 Sep IOM a waste of money? Of course. But when has DHHS ever NOT wasted $--or in fact, STOLEN it by the multi-millions over a decade at CDC?

    29 Sep Re IOM mess: look to Unger's comments at FDA meet up last December: Canadian definition "too scary" for doctors. IOM and CDC: joined at hip

    29 Sep CAA supporting IOM rigged game of new definition? Telling experts to withdraw their opposition? What more do you need to know about CAA???
    Marty likes this.
  13. Keela Too

    Keela Too Senior Member

    Messages:
    185
    Likes:
    366
    N.Ireland
    Stop wasting your energy being angry with the wrong people.

    You will frighten all help away.

    I will continue to do what I have been doing, but will not waste more energy on this thread.
  14. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    621
    Likes:
    1,025
    Mercer Island Wa
    Don't reframe the issue by perjorative attacks on my motives. If you had taken the time to read the post, it doesn't apply to you. I am informing and providing information on the seriousness of the issue and the urgency of the situation. There is effective advocacy and ineffective advocacy. Instead of personal attacks, it would have been better if would have thanked me and others for taking time to research the information and providning that information to the community. Offering to get others to help in this cause would be the proper response.
  15. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,780
    Can we take any lessons from "Derek Sivers: How to start a movement?"

  16. Helen

    Helen Senior Member

    Messages:
    476
    Likes:
    424

    Nielk, thanks! Dr. Daniel Peterson, Simmaron Inst. who lectured two days ago in the city near where I live stated the importance also for people living outside U.S. to take action if we don´t agree to the IOM contract as the result will have an impact on all people with ME/CFS whereever we live.

    I think this is an easy way to protest, to sign the Avaaz petition. Petions before, for many different actions, have made change.
    You can sign the petition to stop the IOM contract HERE.
    Delia, Nielk and Ember like this.
  17. Delia

    Delia Senior Member

    Messages:
    137
    Likes:
    231
    Iowa

    For coalition purposes it's Importent to align with other similar groups. It's not about medical classification. It's grassroots organizing.

    It doesn't make us all have the same disease.

    It means they face the same political reality impacted their illness and it's treatment.
  18. Delia

    Delia Senior Member

    Messages:
    137
    Likes:
    231
    Iowa

    This reminds me if a cartoon I saw during my advocacy training. It was a boat with a hole in it, filled with representatives a major oppressed groups. African Americans, gays people with disabilities etc.

    And they were not wanting to be associated with the other groups.


    Well they are in the same boat.

    Politically. Medically autism et al is different.

    But bringing groups together who face the same political interference in getting their needs met, there is no difference. Same sinking ship.
    Esther12 likes this.
  19. Delia

    Delia Senior Member

    Messages:
    137
    Likes:
    231
    Iowa
    What about just letting the letter from the 35 speak for us and that we stand behind it, no matter what any other organization that claims to speak for ME/CFS patients say.

    We have the illness.

    This is what we believe.

    The letter is consise. To the point.


    Re/physical protest.

    Most of us can't do stipuff like this physically. And or can't get to DC on the date.

    Why don't we use technology and those who can't go to DC go to their local DHS office. (Though state run they are both fed and state funded) so they are like DHHS satellites in some sense.

    And use Skype like video and twitter/Arab spring/social media.

    Each group that does one in the city or state office can also send a press release to media they will be there on that date and get media coverage.

    What day is the conference?


  20. Delia

    Delia Senior Member

    Messages:
    137
    Likes:
    231
    Iowa
    My brain is mush. Can you tell me how and where on this to make a complaint?

    I will then make a new thread calling for and showing others how to do so, as well as call on my family and friends. I think this is another excellent avenue to take.

    Thank you!

See more popular forum discussions.

Share This Page