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.

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Wednesday, February 4, 2015 will be a day the close-knit Myalgic Encephalomyelitis community will long remember as being extraordinarily painful. Activist Vanessa Li succumbed to heart failure during the night. She was 34 and had fought M.E. for 15 years. A shockwave could be felt running through social media and M.E. forums as news of her death spread. In the M.E. patient’s’ world, where emotional stressors are paid for in physical pain, Vanessa’s death felt literally like a gut punch.

Vanessa was a superb activist and, although frequently bedbound, she worked tirelessly to advance the M.E. cause. She instigated the Microbe Discovery Project and raised almost a quarter of a million dollars for Dr. Ian Lipkin’s research. She knew the science behind this disease and shared that knowledge freely. Her opinion was valued and many considered her a treasured friend. Vanessa touched many and she is sorely missed.

A day after Vanessa’s death, grief is turning to a slow burn of anger. M.E. claimed Vanessa before she could see the results of her hard labor. She deserved that and more. Vanessa deserved to live her life with M.E. far better than she was allowed.

Vanessa deserved solid, tested M.E. treatments, established by well-funded research teams. She deserved her government to recognize the disease and not turn a blind eye to her suffering. She deserved medical professionals who had received training in M.E. in medical school. She deserved doctors who realize M.E. is not going to be cured by exercise and positive thinking and who worked for her instead of against. And, Vanessa deserved a public who knows about M.E. and who give the disease the same credibility and empathy as MS, Parkinson’s, Alzheimer’s, Polio and AIDS.

On February 10th, the Institute of Medicine Committee on Diagnostic Criteria for ME/CFS will spend an hour unveiling their long-anticipated report. The Pathways to Prevention (P2P) has issued their draft report, collected responses and the final report is due to be released soon. HHS has stalled the patient population for over eighteen months waiting for these reports; this on top of years without advancing a single step toward helping the M.E. community. Now, the reports are done and the waiting is over. It is the government’s time to act.

Congress must be made to hold HHS/NIH and CDC accountable for their neglect of M.E. patients and Congress must ensure that reasonable recommendations from CFSAC and M.E. experts are enacted. Every unreasonable recommendation made by the IOM and P2P must be loudly discredited by patients and the experts. Media needs to finally step up and do their part in educating the public and showing M.E. in an honest light. Benefactors need to recognize the tragedy of M.E. and start donating as they do other chronic diseases, including the establishment of a M.E. Society. The hard work is just beginning and every M.E. activist is needed to join the common cause.

Vanessa Li will be sorely missed as the M.E. patients take on this next fight to better their lives. It is tragic she did not live to see real change made in how the world treats M.E. patients. She deserved better. Everyone living with M.E. deserves better.

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Please join me in remembering Vanessa Li by donating in her memory: http://www.microbediscovery.org/  http://www.meadvocacy.org/