Loudly Snub the IOM

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

The Marketing of Justina

After a year of review hearings keeping Justina Pelletier in foster care, the dependency court judge is due to give a ruling Tuesday on motions he heard at a March 19th hearing. It is expected he will transfer the dependency action to Connecticut and Justina will be transferred to a treatment facility near Tufts. I have lived with Justina in my thoughts for a year and I tell her story to all who will listen. What Boston Children’s Hospital and the State of Massachusetts is doing to Justina and her family is deplorable. People need to take notice, educate themselves, speak out and keep the conversation going in order to stop this from happening to any more children. People need to get the message and spread the word. But what happens when that message gets marketed in a manner which is not helpful to the cause? Is the recent marketing of Justina Pelletier a good thing?

If you are unfamiliar with Justina Pelletier, she is fifteen years old, suffers from a little known disease and has spent over a year in the custody of the Massachusetts Division of Children and Families (DCF), mostly as a patient in the psychiatric unit at Boston Children’s Hospital (BCH). She was removed from her parents after an ER doctor at BCH disagreed with Justina’s mitochondrial diagnosis and treatment plan. She was under the care doctors at Tufts in her home state of Connecticut and fell ill with the flu while visiting Boston. In the span of less than 24 hours, BCH psychiatrists examined Justina and made a determination she suffers from a mental disorder, caused by over-attentive parents who were over-medicating her with an assorted batch of supplements. When the Pelletiers refused to sign a treatment plan requiring them to dramatically change their daughter’s course of treatment, DCF was called and Justina was placed in the custody of the State of Massachusetts, where she remains.

If you wish more history on the Pelletier case, the Boston Globe has been following Justina’s story for months, as has Fox Connecticut and Glenn Beck.

Since early days of Justina’s confinement, the pediatric psychiatrists and BCH have been targeted by advocates. The psychiatrists misused their privilege by making a medical recommendation to DCF and Dependency Court guaranteed to get Justina removed from her parents, with medical power of attorney to the State. This procedure was not new to these particular doctors or BCH; it had been done before. The psychiatrists are able to use these kidnapped patients in their somatoform disorder studies with the luxury of no interference from parents. They are only accountable to the State and the State will always bow to their professional recommendations.

Advocates have also focused on raising the awareness of mitochrondrial disease. The best way to help patients like Justina is to make the basics of mitochondrial disease common knowledge. The reason Boston Children’s Hospital and their psychiatrists were able to get away with these types of dependency actions is because the public knows so little about the disease. It is hard to bring mitochondrial disease to public view; research dollars are scarce and the disease is relatively rare and misunderstood. Medical school education is essentially non-existent so few doctors recognize it.

Lou Pelletier broke the court’s gag order on the Glenn Beck show a year after Justina was taken. Although I’m not a fan of Glenn Beck, I applauded Mr. Pelletier’s courage and, at the time, was grateful for the attention being paid to the cause. Within a matter of hours, Fox News picked up the story, as did ABC. Wire services were alerted and it became international news in mainstream media outlets.

The protest quickly moved away from the core issues and became a marketed referendum on religious freedom, right to life, parental rights and an fevered attack on the entire child services system. A vigorous protest has been mounted in a relatively short time but it has not hastened the progress of the dependency action.

Other people jumped into the mix within days. Reverend Patrick Mahoney, of the Christian Defense Coalition, bought a one-way ticket to Boston and immediately stepped forward as the Pelletier family spokesman. Rev. Mahoney has enlisted the aid of his followers to organize prayer vigils and protests. He is called upon for frequent updates and his opinions are shared widely on social media.

Not all of the Reverend’s activities have been helpful to the cause. For example, he accompanied the Pelletiers on their once weekly visit to see Justina, seeking entry as her spiritual advisor. Rev. Mahoney had to have known the facility is bound by a court order to limit visitors to immediate family only. The family-only visitation rules have been a point of contention for months and have been publicly debated. Instead, he went to the facility, was denied access to Justina, and broadcast that fact as an injured party. Weeks later, this incident involving the Reverend is still being continually portrayed as a violation of Justina’s constitutional rights regarding religious freedom. Facility staff were classified as enemies on social media. Telephone campaigns were launched, encouraging people to register their objection and demand Justina have access to a spiritual advisor of her own choosing. When it was brought to Rev. Mahoney’s attention that tying up facility staff with telephone calls could result in poor care for Justina, protesters were asked to flood DCF phone lines instead. Apparently, no one considered that the stunt likely caused Justina more stress at the time because her parents entered the visit fresh from confrontation. Did any part of that incident help Justina? No, but it did give the Reverend a desired talking point.

Mat Staver, founder and chairman of Liberty Counsel, joined in the fight. He made a motion to the court to be allowed to represent the family but Judge Johnston has not yet ruled on his motion. Despite his not being recognized as counsel for the Pelletiers, today Mr. Staver filed a motion for contempt against the DCF for failure to allow Justina to be seen by the doctors from Tufts. DCF has publicly stated they are holding off making medical appointments at Tufts pending the court’s decision. Judge Johnston has publically stated his intent to render that decision by close of business Tuesday. Filing a motion for contempt one day prior to the decision, which will likely make the issue moot, accomplishes nothing except draw publicity to Mat Staver.

Dr. Phil taped a show with members of the Pelletier family and Rev. Mahoney. Coincidentally, the show aired the same day as the latest court hearing, which many felt would be the day Justina would be given her freedom. To his credit, Dr. Phil presented a balanced show and discussed the core issues. There was a lot of interest generated online prior to the show and he likely enjoyed good ratings that day. I imagine a follow-up show, taped after Justina is returned home, is in the works and it can expect good ratings as well.

A handful of lawmakers in Connecticut and Massachusetts, acquiescing to demands of constituents, gave interviews promising to attempt legislative action to free Justina, while knowing, but not saying, they lack the jurisdiction to override the dependency court’s order. Lawmakers are promising parental rights legislation, as well as an overhaul of children’s services, but are forgetting they make these same promises every election year. They can’t help Justina but have instilled good feelings in their voters, so it is a win for them.

Following the lead of Glenn Beck, Rev. Mahoney and Mat Staver, Christian conservatives have vigorously embraced the Pelletiers and their cause. Facebook groups supporting Justice for Justina have ballooned in size. Twitter campaigns are ongoing, as are telephone campaigns. Instructions have been given on how to file formal complaints against the hospital, the doctors, the DCF staff and Judge Johnston. There is an all out social media blitz to make life difficult for anyone who has had a hand in Justina’s ordeal. Today, in anticipation of Tuesday’s court ruling, specific instructions were given to Justina’s supporters to telephone the judicial offices to make clear “the whole world is watching.”

The amount of vitriol in the Facebook groups dedicated to Justina’s case is overwhelming. Everyone from Judge Johnston to DCF to the people caring for Justina are being vilified. Anyone who disagrees with the new hardline conservative stance is pounced on and chewed up on social media. Advocates, sick themselves, who have worked tirelessly on Justina’s behalf have grown weary of having to defend themselves and have slipped into the shadows. This kind of activity does nothing to get Justina home and I hope she never reads the comments on the pages dedicated to justice for her.

In summary, how successful is this new form of protest? Has all the new activity from the Pelletiers’ legal team helped move the dependency along? Not at all. Plans to transfer Justina’s case to Connecticut DCF jurisdiction were well underway before Lou Pelletier broke the gag order. It is entirely possible Judge Johnston would have signed the order transferring the case to Connecticut on March 19th had he not been inundated with new motions.

Justina was transferred from BCH to a temporary juvenile housing facility about six weeks ago because she proved to be a poor study subject, NOT because of public pressure. She was not showing improvement after a year under the BCH treatment plan and the psychiatrists could no longer justify her confinement. Her doctors recommended a transfer back to Tufts for further treatment and DCF and Judge Johnston set the transfer process in motion.

Are banging the drums of religious freedom, right to life and parental rights helping Justina come home? No, but it is garnering publicity for some, paving the way for lucrative civil lawsuit contingency fee retainers for others and guaranteeing press and TV show ratings. Will there be a book? A TV-movie? A spread in magazine? Does she need an agent? How soon before Jessica is asked to go before the television cameras and talk about her captivity? Has anyone asked Justina how she feels about all of this?

The pieces are in place for Justina to leave Massachusetts and such an order could be signed tomorrow. She has a long road ahead but will soon be recovering in the arms of her family. The circus will quickly move on to the next photo op and vows to change the system will be forgotten. For Justina, I wish her a steady physical and mental recovery. Mostly, I hope the world will allow her to quickly achieve closure so she can resume normal life, out of the public eye and away from the storm.

Meanwhile, M.E. and other invisible illness advocates will continue to work hard to make sure another patient is not kidnapped in the name of medicine. Karina Hansen in Denmark still needs to come home.