M.E. Awareness Day – Humbly Revisited

While I was spending M.E. Awareness Day grumbling about the pitiful lack of headway in the world of M.E., other patient advocates were revealing exciting new ways they are making it better. The day brought the launch of a new worldwide M.E. advocacy platform, the announcement of a new grassroots organization with a novel idea and the release of the theatrical film trailer of a highly anticipated film. At the close of the day, the words of a poet reminded me even the most difficult life can be lived with grace.

First, the announcements:

Extraordinary advocates Jen Brea (Canary in a Coal Mine filmmaker) and Beth Mazur (M.E. patient and self-proclaimed science nerd) combined forces to co-found #MEAction. http://www.meaction.net/ This is not your usual advocacy organization. This is a comprehensive advocacy platform M.E. advocates all over the world can use to launch grassroot projects.

Posted on the #MEAction website:

#MEAction is an international network of patients empowering each other to fight for health equality for Myalgic Encephalomyelitis.

MEAction is not structured like a traditional advocacy organization or patients’ association. We are primarily a platform, designed to empower patients advocates and organizations, wherever they might be, with the technological tools and training to do what they are already doing – better.

We were founded with the belief that while we may find it difficult to advocate for ourselves in the physical world, in the virtual world, we can be an unstoppable force.

Two days in and #MEAction is already promoting worldwide/statewide petitions to Congress, the MEadvocacy.org and Health Rising letters to Congress campaigns, the M.E. Chilli Challenge, the Open Medicine Foundation and The Microbe Project fundraisers, the Australian and DePaul University survey studies and the “retire this image” stock photo campaign. Plus, if you have a project in mind, #MEAction gives you training and a platform to launch your own advocacy event. Plans for expansion are already underway. Acting up for M.E. just got a lot easier.

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Advocating4ME chose the May 12th awareness day to introduce themselves as a new grassroots organization. https://www.facebook.com/pages/Advocating4ME/1606524889591699?fref=ts

On their Facebook page, Advocating4ME describes themselves as:

a new multi-national advocacy group established for the purpose of raising funding for the most promising scientific research studies for Myalgic Encephalomyelitis. We are interested in helping researchers seeking to identify biomarkers in ME patients or those seeking to develop new medical treatments for Myalgic Encephalomyelitis patients.

I am particularly enthusiastic about the first project Advocating4ME will undertake:

We are excited to announce the beginning of our first campaign, which will feature a team of professional writers collaborating to write personalized letters to selected philanthropists and asking them to fund specific scientific research studies in the M.E. community.

I have long maintained if we are able to get philanthropists to step forward and help the M.E. patients, social barriers will crack as a result and the way will be better paved to finally fully fund M.E.scientific research. This project by Advocating4ME seems to be a solid step in the right direction.

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Also, on May 12th, filmmakers Ryan Prior and Nicole Castillo teased us by releasing the first theatrical trailer of their film, Forgotten Plague. The trailer confirms Ryan and Nicole have beautifully captured on film the true pathos of M.E. The full length film will be released this summer. Watch the trailer::

https://www.youtube.com/watch?v=VsQcmKT3zSo&feature=youtu.be

If you wish to stage a screening of Forgotten Plague in your area, you can learn how here: http://mecfsdocumentary.com/stage-a-screening/

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Finally, I learned a humbling lesson on May 12th. While I devoted my #May12BlogBomb post to whining about inaction, loss and anger, better people than I were launching projects to better lives of M.E. patients everywhere. I admit to feeling more than a bit of shame. In one of those moments of contrition, I found the May 12 awareness day contribution of poet and M.E. patient, Sarah-Louise Feather Jordan.

For those who do not know her, Sarah-Louise contracted M.E. as a child in the UK and has spent the majority of her life ill, confined to her home. Exceptionally gifted, she escapes through writing. Her poetry fills the spirit and sustains the soul of M.E. patients around the world and she makes that world a better place.

After listening to Sarah-Louise, I realized hers was the message the world needs to hear for awareness day; not my blather.. So, in closing the book on this year’s M.E. Awareness Day, I leave you with the words of poet/patient Sarah-Louise Feather Jordan:

https://www.facebook.com/sarahlouiselula.jordan/videos/10205913877837804/?pnref=story *

*The video is audio only. The acoustics make listening a bit challenging but the content makes it well worth the effort.

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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.