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.
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 After stating they rescinded the contract to keep us off guard, they renewed the contract within a few days.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???