Beyond the Roll-Out

The Institute of Medicine rolled out their report, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Refinding an Illness” on February 10th, and it is pretty much as expected. First glance gives readers the impression the committee nailed it but closer inspection reveals some serious flaws. But, at least, it is better than the 1994 Fukuda criteria clinicians are still using. And the committee gave us a close variation of the Canadian Consensus Criteria, which surprised more than a few in the M.E. community. The IOM committee also made it clear they do not expect this criteria to stand the test of time and recommended it be changed as new research studies are completed, in no later than five years. In the meantime, they tell us the report is a solid foundation from which to build.

Also, the IOM, almost apologetically, christened the disease with a new name: Systemic Exertion Intolerance Disease, or SEID, thus replacing the name hated by all, Chronic Fatigue Syndrome.  Now, instead of people making jokes that they must be sick because they are “fatigued”, they are making jokes that they must be sick because they are “intolerant to exertion”.  Hardly an improvement but at least we don’t have a “syndrome” anymore; at last, we have a “disease”.  However, apparently the committee did not give thought to the fact SEID spelled backwards is DIES, which, I have to say as a patient, is kind of alarming.

In a move which still has advocates scratching their heads, the committee reported they could not justify joining most of the rest of the world in calling the disease the much preferred name, Myalgic Encephalomyelitis. They claim they could not find research to justify muscle pain and brain inflammation as dominant symptoms as the name M.E. implies. Advocates were quick, however, to point to the studies they could have referenced but chose to ignore. There are studies currently in progress which could provide further justification for use of the words myalgic and encephalomyelitis, so it begs the question why not simply defer renaming the disease until their recommended review in five years or less?  At least one committee member has been quoted as saying the committee fully expects the name to change at the future review, so why throw SEID into the mix at all?  Many patients, including myself, have decided to stick with M.E. when referring to the disease.

With the IOM report roll-out came a media blitz like nothing the M.E. community has ever seen. Hear ye one and all! The Institute of Medicine today declares Chronic Fatigue Syndrome is a real disease!  And, a real disease deserves a new name! Goodbye CFS, hello SEID. Articles appeared in print as soon as the press embarkgo was lifted at 11:00 a.m. EST. Publications ranging from major medical journals to home town newspapers published articles reporting the big news. Nearly every article featured a picture of a pretty caucasian woman, sporting beautifully manicured nails, well-coiffed and well-dressed, resting her tired head on her delicately placed hand so as not to smudge her perfect make-up; a stark contrast from the typical housebound, unkempt M.E. patient lying on a couch.

Each online article garnered its share of “expert” commentators.. As usual, there were arrogant doctors dismissing the disease and calling us simply depressed. And, there were the folks who used to have it for a few months but got better by doing x, y or z and those who exercised their way back to perfect health. The postive thinkers and nutrition nuts were out in force  And every article had an ample share of bullies calling patients lazy parasites on society, opining that it must be nice to lay around all day, doing nothing but collecting disability money.

Nightly news on all the major networks gave the IOM report release at least ninety seconds. Television news anchors generally looked amused as they dutifully read off  teleprompters that chronic fatigue syndrome is a real disease and that patients are no longer fatigued but exertion intolerant instead. Network news called in their television doctors to add their professional confirmation, although glaringly clear the doctors knew nothing about the disease and had not read a word of the report. NBC had to issue a correction after their television doctor reported that exertion intolerant patients frequently get better with exercise.

A television outlet, KOAT in Albuquerque, New Mexico, livened up their morning news segment by asking people on the street how much sleep they got the night before. No one bothered to read the report there either and they fed their viewers eighty seconds of outlandish “facts” and ten seconds of truth. The woman anchor ended the segment by telling her co-anchor, as an aside out the side of her mouth, she had been tired for 13 years. In a helpful touch to us tired sufferers, they announced they are going to feature their favorite Wakeup app in a future report.

This evening, two days after the roll out, the M.E. patient community was in a reflective mood on social media. It is as if we are experiencing collective post-exertional malaise. The IOM report had been much anticipated, and hotly contested. Now that we have it, and have had a chance to read and digest it, exhaustion from the exertion is taking a toll. We have fought hard for this disease to be recognized and validated. Now that the IOM committee gave us that validation, it leaves us pondering our next move or even if we have the physical and emotional ability to move at all.

One thing the IOM report roll-out made glaringly clear is how M.E. and M.E. patients are perceived in the eyes of an unknowing public and prejudiced medical profession. It is going to take so much work to turn those perceptions around. We won a big battle but it pales in comparison to the war that rages on. Advocates are questioning how much they have left to give to this cause. Some are leaving the fight, realizing their health will no longer permit them to give of themselves for the greater good.

IOM committee chairman Ellen Clayton, near the conclusion of the roll-out meeting, took a moment to speak personally to the M.E. community. She urged us to take this report and use it as fodder to secure the much needed research funding. She urged us to ACT UP, as the AIDS activists had done; to rise up and fight to make our government help. I understand others are urging the same. It is unfortunate they do not realize M.E. does not allow us to ACT UP. We are too sick to march on Washington D.C. We are too sick to lobby Congress as extensively as will be needed. We are too sick to stage awareness concerts. We are too sick to do much more than write a few letters, compose a few tweets and forward some e-mails. Our families give their all as our caregivers and have little left to fight for the cause on our behalf.

Every other major disease–and make no mistake M.E. is a major disease–has at least one celebrity spokesperson but, what celebrity wants to be associated with a disease the general public finds as fodder for jokes? Every major disease has at least one rich philanthropist to provide a financial base for their awareness and research efforts but who can afford being associated with a disease that invokes laughter? Every major disease has at least one corporate sponsor to underwrite awareness campaigns but what corporation wants to sponsor a bunch of tired, lazy people? And, as was made crystal clear over the past three days, unless M.E. has actually touched their lives, members of the general public are more inclined to make light of the disease than fight for the sufferers.

The Institute of Medicine panel formed a unanimous consensus and gave us a report which will be respected by those with the power to invoke real change. We have the needed validation to draw the attention of Congress and get the desperately needed research funding.  It is a tragedy the M.E. community may be too sick to use it and no one else cares enough to help.

 

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