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.

Quo vadis, Science Media Centre?

Living with M.E. is an extraordinarily difficult existence. Blessings are hard to list at times but I am ever thankful I am not living with M.E. in the UK. In that country, M.E. is not considered a physical disease and those who perpetrate that myth reap huge financial rewards from keeping patients sick. Utting Wolff gives an outstanding critique of the UK media release of yesterday’s good news from the Hornig/Lipkin study. Also, if you have not already read it, Mr. Wolff’s recent post on hate speech and Prof. Shorter is excellent as well.

Utting-Wolff Spouts

Yesterday saw some positive media headlines for the ME community. The research from Columbia University by Hornig et al, concerning the level of cytokine activation as a potential biomarker for ME, looks promising[1]. ME research indicating a biological pathology is often dismissed due to the small number of participants but this was a study comprising 298 ME patients and 348 controls, which will hopefully give it more weight in scientific circles[1]. Unfortunately, as is usual with UK media coverage, reporting was not unequivocally positive; the difference in tone between the UK and US media coverage was marked. In the former, most of the usual suspects promoting the psychogenic paradigm were quoted, aided by the Science Media Centre (SMC). There is little hope of this group of psychiatrists going quietly into the night and we will probably experience a backlash from that quarter; they have much to lose if and when…

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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.

Vanessa Li Update

We got the news this morning. Vanessa Li took her own life. Her brother posted a notice on Vanessa’s Facebook memorial page.

https://www.facebook.com/vanessali19812015

The family found a note addressed to them on her email account a few days after her death. The pain from M.E. had become too much and, with no cure, she could no longer go on.

Vanessa wanted us to know a few things, stated in her brother’s notice:

Here are a few messages that Vanessa wished to share with you all.

For Vanessa, the pain from ME was impossible to describe. She could not go on anymore, not like this without any cure. It was too painful. She felt that ending her life was simply a practical solution.

She wanted the world to know that she ended her own life and she wanted her death to serve something. She wanted to spread awareness of the truth about ME, and the lack of research into the illness as a result of neglect from medical authorities worldwide.

She wanted her body to be donated for the purpose of researching ME. We have already arranged for this to happen.

Lastly, she wished to say sorry to all her friends, to whom her passing comes as a shock.

Vanessa said ending her life was simply a practical solution. Those words gut me and I am not alone. To those of us she touched, even in the smallest of ways, losing Vanessa was anything but a practical solution.

Suicides are too common in the M.E. community; each one a stunningly tragic loss. We are becoming too accustomed to this kind of unique heartbreak. Every M.E. patient lives with the knowledge that decades of neglect by our world governments lead to these kind of deaths, making the grief cut that much deeper. This unjustice has to stop, now, for Vanessa and for the others who find the same practical solution to the pain of M.E.

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There will be an online vigil for Vanessa tomorrow (Wednesday) at 1:00 pm EST on her memorial page, linked above.

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.

 

Link

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/