Hey everyone, I was part of a small team to collaborate on this letter addressing both the successes and failures of the ME community during the past year. Obviously as one of the co-authors of the letters, I think it raises a variety of relevant issues worth discussing among the ME community moving forward. Here is the final version of the letter.
"As we approach International ME/CFS & FM Awareness Day on May 12th, the event provides an opportunity for the Myalgic Encephalomyelitis (ME) community to evaluate both our successes and failures during the previous year. The most important news for ME patients this year was the scientific breakthrough made by researchers at the Center for Infection and Immunity at Columbia University’s Mailman School of Public Health that increases the potential of better diagnosis and treatment for ME patients in the near-to-mid term future. Their study highlights immune signatures in patient blood indicating distinct disease stages among ME patients. The immune signatures provide additional robust evidence to reinforce what the entire ME community already knows, that Myalgic Encephalomyelitis is a crippling chronic illness with biological origins. The results of this study were recently published on the internet in the new American Association for the Advancement of Science Journal, Science Advances, demonstrating how ME is increasingly gaining recognition among the scientific community. With more and more researches around the world increasingly conducting innovative studies and new clinical drug trials, ME patients have more reasons than ever to be optimistic about the future.
Unfortunately, as an internet advocacy movement, we have recently become distracted from our main objective of assisting these researchers to acquire the necessary funding to achieve their objectives. Due to the numerous challenges that ME patients face, we must rely on internet advocacy as our primary method of raising awareness and funds to combat this crippling disease. Unfortunately, many of the current leadership of the ME internet advocacy movement have lost sight of what is in the best interests of the community. Instead of making funding research and drug trials their number one priority, these groups have focused on building unnecessary infrastructure and Google plus hangouts that fail to address the real issues impacting the ME community. In addition to syphoning away resources and effort from other advocacy projects in the community, these groups have failed to provide sufficient results considering the vast amount of effort and resources dedicated to them. Some of the individuals in leadership roles have also come to prioritize building their personal brand over promoting the best interests of the ME community. As a result of this unfortunate situation, it's more important than ever that new leaders emerge from within the ME patient community to take on a prominent role in the internet advocacy movement. Courageous leaders who are looking to achieve tangible results for ME patients and are willing to put their ego aside to collaborate and help fund the most promising research projects available.
If you are also frustrated with the direction and lack of progress in the ME internet advocacy movement over the past couple of years, I would encourage you to support grass-roots internet advocacy campaigns aimed exclusively at funding researchers moving forward. One of the strategic advantages to using grass-roots internet advocacy is that it can achieve tangible results with few resources. Despite claims to the contrary, successful grass-roots advocacy does not require excessive resources, elaborate infrastructure or years of planning to achieve results. One of the many inherent advantages of grass-roots internet advocacy movements is that it allows for numerous, small, targeted campaigns to achieve success with limited resources. However, it is obvious that this has not been the strategy followed by some of the more prominent ME internet advocacy groups. I encourage everyone who can contribute to become involved in the ME internet advocacy community moving forward and help ensure that our leaders focus primarily on funding research. As the great Noble Prize winning novelist William Faulkner once wrote, "Never be afraid to raise your voice for honesty and truth and compassion against injustice and lying and greed. If people all over the world....would do this, it would change the earth." Never have those words been more applicable to the ME community. It's time that the ME community seizes back control of our internet advocacy movement and ensure that funding scientific research once again becomes the primary objective of our movement. Most importantly, it's time for the emergence of new leaders in the ME community."
"As we approach International ME/CFS & FM Awareness Day on May 12th, the event provides an opportunity for the Myalgic Encephalomyelitis (ME) community to evaluate both our successes and failures during the previous year. The most important news for ME patients this year was the scientific breakthrough made by researchers at the Center for Infection and Immunity at Columbia University’s Mailman School of Public Health that increases the potential of better diagnosis and treatment for ME patients in the near-to-mid term future. Their study highlights immune signatures in patient blood indicating distinct disease stages among ME patients. The immune signatures provide additional robust evidence to reinforce what the entire ME community already knows, that Myalgic Encephalomyelitis is a crippling chronic illness with biological origins. The results of this study were recently published on the internet in the new American Association for the Advancement of Science Journal, Science Advances, demonstrating how ME is increasingly gaining recognition among the scientific community. With more and more researches around the world increasingly conducting innovative studies and new clinical drug trials, ME patients have more reasons than ever to be optimistic about the future.
Unfortunately, as an internet advocacy movement, we have recently become distracted from our main objective of assisting these researchers to acquire the necessary funding to achieve their objectives. Due to the numerous challenges that ME patients face, we must rely on internet advocacy as our primary method of raising awareness and funds to combat this crippling disease. Unfortunately, many of the current leadership of the ME internet advocacy movement have lost sight of what is in the best interests of the community. Instead of making funding research and drug trials their number one priority, these groups have focused on building unnecessary infrastructure and Google plus hangouts that fail to address the real issues impacting the ME community. In addition to syphoning away resources and effort from other advocacy projects in the community, these groups have failed to provide sufficient results considering the vast amount of effort and resources dedicated to them. Some of the individuals in leadership roles have also come to prioritize building their personal brand over promoting the best interests of the ME community. As a result of this unfortunate situation, it's more important than ever that new leaders emerge from within the ME patient community to take on a prominent role in the internet advocacy movement. Courageous leaders who are looking to achieve tangible results for ME patients and are willing to put their ego aside to collaborate and help fund the most promising research projects available.
If you are also frustrated with the direction and lack of progress in the ME internet advocacy movement over the past couple of years, I would encourage you to support grass-roots internet advocacy campaigns aimed exclusively at funding researchers moving forward. One of the strategic advantages to using grass-roots internet advocacy is that it can achieve tangible results with few resources. Despite claims to the contrary, successful grass-roots advocacy does not require excessive resources, elaborate infrastructure or years of planning to achieve results. One of the many inherent advantages of grass-roots internet advocacy movements is that it allows for numerous, small, targeted campaigns to achieve success with limited resources. However, it is obvious that this has not been the strategy followed by some of the more prominent ME internet advocacy groups. I encourage everyone who can contribute to become involved in the ME internet advocacy community moving forward and help ensure that our leaders focus primarily on funding research. As the great Noble Prize winning novelist William Faulkner once wrote, "Never be afraid to raise your voice for honesty and truth and compassion against injustice and lying and greed. If people all over the world....would do this, it would change the earth." Never have those words been more applicable to the ME community. It's time that the ME community seizes back control of our internet advocacy movement and ensure that funding scientific research once again becomes the primary objective of our movement. Most importantly, it's time for the emergence of new leaders in the ME community."
