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.

What’s With All The Hate?

A popular M.E. patient activist reposted an epic troll comment, in which she was vilified, on her Facebook page last night. (Purposely not linked) Trolls are everywhere and the comment, though particularly eloquently vicious, was not that surprising. The fact it was made in the first place is what strikes me and leads me to these thoughts:

We are not the first patient community to face public ridicule but, in this age of no bully, no hate movements everywhere, why is it still continuing?  Why it is okay to ridicule an incurable, life-devastating disease and the people who suffer from it? How is that not hate and why aren’t the decent people in the world stepping up to stop it?

I get why it is happening–the public has never been given an honest look at the true nature of the disease, M.E.  Plus, we are all sick, mostly at home, in bed, invisible to society and seemingly insignificant in a busy world. Out of sight, out of mind. I am just having a hard time grasping why my getting sick with an unusual disease with a funny name opens me, and my fellow sufferers, up to ridicule in public and the media? Is it really that inconceivable a disease exists which causes the body’s energy generating system to malfunction? Every other system in the body can malfunction, why not energy? And, how is that funny?

Disparage any other disease or patient and people will call out the bullies loud enough the media provides coverage for the next three news cycles. Never with M.E., ever. This being the case, perhaps we should be thankful our issues are publicly ignored and things like the IOM report media blitz happen rarely.

The hateful behavior of the public towards M.E. needs to stop. People battling M.E. face so much obstruction in their lives; they need an outpouring of support, not a load of hate. Trolls should be called out and shamed.  People with their snarky remarks should stop and realize they are a big part of the overall perception problem. It is a disgrace this is even an issue.

Last night’s troll comment crossed my line in the sand. I cannot watch this happen any longer. I am going to do something about this. I don’t know what yet, and I don’t know where I’m going to draw the energy from to do it, but I’m too angry not to do something.  I am open to ideas and anyone who wants to join me is welcome. “No Hate” needs to apply to the M.E. patient community too.

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.