May 12th M.E. Awareness Day – Just Another Year Older #May12BlogBomb

Happy May 12th M.E. Awareness Day, my friends. We meet again on this day to share our knowledge, tell our stories, raise money for our own research and hope this year our awareness day will open the eyes of the healthy. Always hopeful, may this be the year M.E. goes viral.

I wish I could say this past year has brought improvement to the lives of those of us with M.E. The year brought hints of promise with exciting research findings but no substantive change in the quality of our lives. Future research is promising and the possibility the puzzle will be solved is tantalizing. But in the rest of our story, our experience has been bleak. The only thing a M.E. patient can say was really gained was the addition of a year to their age and to the length of their battle. I am angry and cynical and it is tough to not ooze sarcasm in my words.

A year past in the U.S. and the government continues to maintain our status as lower-class citizens.  HHS continues to give nothing but lip-service to the patients while ignoring every recommendation put forth by their own advisory committee, CFSAC. The NIH, CDC and SSA got their million dollar study by their hollowed IOM and the majority non-expert committee produced as instructed. The criteria is overbroad and sure to encompass many who do not actually have the disease. They have ensured the present confusion shall continue unbridled.

The IOM report rolled out with fanfare and a media blitz three months ago. None of the contracting agencies have since uttered a word in response. Only the CDC took action by slightly retooling their toolkit, but leaving it still wholly lacking. NIH responded to the IOM’s call for increased funding by allocating their usual yearly $5 million, or $5 per patient. I have loads of suggestions for what the NIH can do with my $5 worth of research.

Also, in the past year, the NIH continued their jury model Pathways to Prevention, recruiting a committee of people totally ignorant of the disease and telling them what they want them to know. In the process, they committed an error so grievous it taints whatever the committee produces. The NIH was forced to disclose the P2P committee failed to review a substantial amount of written response materials. Naturally, the omitted material happened to be a great deal of that provided by the patient community. Also, naturally, the omission was “inadvertent.” The NIH maintains the committee does not need to be reconvened and their ad hoc review of the patient responses will suffice.  As an observer of the actions of the NIH over the past 30 years, I am sure the final P2P report will be just what the NIH requested and any findings advantageous to patients will be ignored. The NIH continues to do nothing to earn my trust.

The Social Security Administration reworked their ME/CFS. disability criteria but continues the status quo when it comes to approving the disability claims of M.E. patients. The six people I personally know had pending disability claims last May 12th still have pending claims this May 12th. The only change is they each received another denial and are one step further in the appeal process. Financial pressures from the unjust denial of benefits add another dimension to their suffering.

As a patient community, we had more than our share of sorrow since the last May 12th M.E. Awareness Day. Too many needlessly lost their battle in the past year. Over the course of three weeks in February, three deaths took place in the M.E. community which shook my world. One after the other, I mourned the loss of a brilliant advocate who did much more than her share in the fight for a cure; a young man on the cusp of life who had been sick for years and saw no change in his future; and, a middle-aged wife and mother who always had an encouraging word for her fellow warriors until she had none for herself. They each died by their own hand.  As a M.E. patient, I long ago accepted this disease is unrelentingly painful in every possible way and when the pain erases hope, people choose to die. I grieve each such loss with sorrow and an upwelling of anger at the injustice of their suffering. In my eyes, the government is culpable each time a M.E. patient commits suicide. It is not an accident there is no M.E. biomarker, no effective treatment for the average sufferer and no cure.The government’s intransigence when it comes to M.E. is purposeful and, I am firm in my belief it equates to nothing less than voluntary manslaughter. There are people in my government with blood on their hands and no one is asking why.

This year, I met the mother of a 20 year old young man newly diagnosed with M.E.. He fell ill while a student at one of the most prestigious universities in the nation. His career path laid before him and success was his for the taking. Now, he can hardly communicate. Her son continues to worsen as months roll by. She asks me questions about how the disease progresses and when she can expect him to turn a corner. I have no answers and have little in the way of hope to offer. I share my resources and my knowledge, I encourage her to contact Congress and advocate for her son. I try to support her as I quell my anger at those responsible for there not being any treatments available for this newly sick young man. Too many young people fell ill with M.E. this year. Each new diagnosis breaks my heart because I know the road ahead.

Internationally, 24 year old Karina Hansen is still held hostage in a psychiatric facility in Denmark. Her only crime is having M.E. in a country influenced by a psychiatric lobby holding firm despite the science. Her parents are still denied any contact. A legal challenge was lost this year and the fight churns on at a snail’s pace. The 2nd anniversary of her being abducted past last February and what little news we have of Karina’s present condition is heartbreaking. I hope 2015 is the year Karina goes home to her family and receives proper treatment. Mostly, I hope she lives to see her freedom.

The 400,000 M.E. patients in the United Kingdom experienced some validation when the IOM report stated unequivocally ME/CFS is a physical disease. The psychiatric lobby, however, doubled down this year by trotting out new interpretations of the discredited PACE trial, including their conclusion that a fear of exercise is keeping us sick. When the research results from the Lipkin/Hornig study were released, the UK press dutifully obtained comments only from the dinosaur psychs, and each called for caution in celebrating the very preliminary results of a “small” study. Cognitive Behavioral Therapy and Graded Exercise Therapy are still the go-to treatments despite mounting evidence talk therapy does not make sick people well and exercise harms M.E. patients. In other words, nothing has changed in the UK in the past year.

As for me, mid-June will mark the 27th anniversary of my developing M.E. Nothing has changed in all those years to make my life easier. My doctors can only offer relief for a few symptoms and I am left to deal with the rest as best I can. The NIH still thinks my disease is not worth investigating and their five million dollar funding allocation is an insult. The CDC still trivializes the disease and ignores the need for medical school education so, once again, I had to educate a new doctor. Society as a whole is ignorant of the truth about M.E. and the media fuels their misperceptions. I hope I never have to convince another person my disease is as real as MS or Parkinson’s but I know that is just a dream. It will take a paradigm change to make things better. I beat back the feeling that I will not live to see that day.

Another May 12th M.E. Awareness Day and just a year older. Cynical, I know. Thirty years ago or yesterday, the history of M.E. is exactly the same. That fact breeds cynicism. These days, I am fighting hard to make that elusive change happen but now I am too sick to be very effective. I am not so pompous to believe my words are being read but by those in my choir. My little blog is not going to get a world view but, I have to admit, while singing to the choir is nice, just once I would like the congregation to hear my message, open their eyes and do something to help. I sincerely hope I will not be saying the same things next May 12th but the cynic in me does not see it being otherwise. For all of us, I hope the cynic is wrong.

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