The prestigious Institute of Medicine Committee on Diagnostic Criteria for ME/CFS humbly requests the honor of your presence at their third meeting, taking place in Washington D.C. on the 5th of May, 2014, beginning at 1:00 p.m. EST. That’s right! The IOM is throwing open their doors to the public; welcoming us in to enjoy four hours and twenty minutes of the committee’s otherwise super secret dealings. It will be like a Cinco de Mayo party, without music, food or integrity.
The IOM has invited us to “participate” in person or by webcast. “Participate” is a relative term. The IOM has set the agenda and the only people providing information to the committee will be guests carefully chosen by the committee (I’ll save commentary on the featured performers for a future post. I’m still editing out profanity.) A Patient and Advocates panel, names of whom remain a closely held secret, will have ninety minutes to convince the majority non-experts they are not lazy, depressed and in need of a gym membership. The public is cordially invited to watch in silence.
Public participation is encouraged and, some ask, why wouldn’t we want to take part? This is “our” meeting, Stakeholders. Our chance to see our esteemed IOM committee at work; an afternoon of transparency. They are warmly inviting us to watch the webcast, send an e-mail, participate in the process; the more, the merrier. This is the IOM’s version of seats at the table and they likely won’t invite us again. The IOM friends (most notably, CAA and Pandora) make it sound so lovely. The IOM wants your opinion–you should give it to them! Send an e-mail, or two! Here! We made it easy for you! Just fill out this simple questionnaire and we’ll see they get it! Don’t miss out! You have a chance to make a difference! Wow! Isn’t it great! How reassuring it is to think the IOM will take note of our opinion….everyone likes a chance to make a difference…maybe a quick e-mail…send off that questionnaire real quick…just a peek at the webcast…STOP!!
The moment people think about participating, a bucket of cold, harsh reality should dump on their heads. If think you can make a difference by cooperating with the IOM, get over yourself!! You aren’t that good! Harsh, but true. Participants are reduced to numbers to put on a graph in the final IOM report. That is all. Not patients or family or caregivers. Just plain numbers, configured in all manner of ways to always support the result.
Thinking about engaging the IOM? Remember this: The measure of stakeholder participation will be the number of e-mails received, the number of comments on pages and websites, the number of meeting room seats occupied and the number of webcast views. It does not matter if most of the e-mails and comments protest the IOM and support our experts. It does not matter if people are logged onto the webcast to send the message the world is watching. Every contact is carefully being tallied and used to the IOM’s favor.
Chairwoman Clayton is running the committee according to script and the script says she needs to deliver a high stakeholder participation number. Easiest way to get the numbers up? Use the prestige of the IOM to charm and flatter the so-called patient groups who desire political clout. Ask them to drum-up e-mails and webcast views from the masses, sit back and watch the numbers climb. If they throw in an online questionnaire, they just might get tickets to the wrap party.
Everything about this IOM farce is rotten to the core. There is nothing that will sway them but they insultingly ask us to try. Enough already! It’s time to loudly snub the IOM. Forget about them! Our fight is with HHS and the battle can only be won with Congressional help.
But, shouldn’t we tell the IOM we are snubbing them? Not a chance. Silence cannot be viewed as acceptance if the protest is heard. The committee has already heard enough protesting to know we will accept nothing less than adoption of the CCC; they don’t need reminding. They don’t need to be told about a boycott through IOM e-mail either. They have been told, repeatedly, large numbers of stakeholders refuse to acknowledge the committee’s work. Snubbing the IOM does not mean we stop talking. It means we start talking to someone else, the louder the better.
Snubbing the IOM is easy:
Do NOT e-mail the IOM. Even e-mailing the committee’s administrative staff counts as stakeholder participation. Don’t be lulled by the committee’s agents and friends into thinking you can make a difference.
Do NOT posts comments on IOM social media pages and websites. Any attention from stakeholders, even negative attention, increases the participation number.
Do NOT view the webcast. Hard, I know, but imagine all the stress hormones your body won’t be generating. After the meeting, there will be plenty of commentary, blog posts and articles to satisfy a hungry curiosity.
With the IOM ignored, we need to make good use of our collective energies by focusing attention on our elected officials and the media. Our legislators have the power to stop the HHS from doing us further harm. The media has the ability to make this battle a trending topic. Even if you live life mostly horizontal, you can advocate effectively. Consider joining in on some or all of these advocacy efforts:
Write to your Senators and Representative. And, write to the members of Congress who oversee the HHS and control their funding. Tell them your story. Tell them about our 50 experts endorsing the CCC. Tell them about the conflicts of interest being ignored by HHS and the IOM. Tell them how the IOM squandered the VA money and quit on the GWI definition contract. Tell them how they can help by cancelling the IOM contract.
Provide information to media outlets, especially your local markets. Something as simple as sharing a prepared press release with a local newspaper or television affiliate could lead to a news article or investigative report shared nationally. If we each share information with our local media, the better our chances for widespread attention.
Freely share information about M.E. in all social media forums. A successful campaign is going to require support for our cause from the healthy public. Other patient communities share our problems and teaming up to find common solutions will benefit all. People are usually willing to take up our fight once they learn our desperate situation. We need to take advantage of opportunities to share knowledge and gain supporters.
Sign online petitions and advocate letters. There is strength in numbers. A petition with over 5,000 signatures will garner more than casual attention, as will an advocate letter with hundreds of co-signers.
Join the Thunderclap. Jeannette Burmeister has organized a Thunderclap* and everyone’s invited to join. Twitter is now the most effective and popular way to share information. And, it’s easy. If you don’t have a twitter account, now is a good time to sign up.
Participate in e-mail and tweet storms. Instead of watching the May 5th Cirque de IOM on webcast, use that time to e-mail and tweet our lawmakers and let them know what is going on across town. Do the same for the media outlets. Let them know, loudly, we are snubbing the IOM and why. And, share what you are doing with all your Facebook friends.
(In the coming days, advocates will be providing sample letters, templates, e-mail and Twitter addresses and how-to tips, all designed to make it easy to join in the campaign.)
Friends of the IOM make participating in the May 5th meeting sound so right. Don’t fall for it. The Committee on Diagnostic Criteria for ME/CFS will continue it’s work as planned. The majority non-experts will ignore the advice of the stakeholders, listen to the charlatans and deliver a politically acceptable consensus definition on time and on budget. You are powerless to influence that process so don’t try. Don’t reduce yourself to a number on the stakeholder participation graph.
Snub the IOM and use your precious energy and cognitive function to reach out to those who have the power and motivation to help. Join in. Advocate to stop the IOM contract and adopt the CCC, loudly and with a clear conscience.
*Link to join the Thunderclap: https://www.thunderclap.it/projects/10666-stop-the-iom-adopt-the-ccc