Thank you. Only one of my comments made it through the New York Times spam filter (and it had a typo ).Thank you, Wally, what you wrote is terrific! Thank you for persisting. Thanks to everyone who tries to correct and expand upon these reports.
I have tweaked some of my comments (that were posted above at Post #58) in order to correct some of my pesky typos and to add a few more reference ideas for information that might be helpful to include in a comment (either for current or future articles). Feel free to use any of these comments in whole or part.
The second comment is quite long because of all the references. You may need to pick and choose what you are able to fit into a comment box. Alternatively, you can split up the comment and try to submit multiple comments (this is why tag teaming comments with a buddy or two can be quite effective).
Also, some sites might not publish the comment(s) if they think you are a "spammer". By submitting more than one comment or if you add links to a comment, their software might label you as a possible spammer. If this happens your comment could sit for awhile in moderation and either eventually get posted or just never show up. Each site is different, so what will make it through moderation and what will disappear into their trash bin is a bit of a guessing game.
I wonder if patients (and our supporters) will be considered "spammers", if we try to sell the truth about this illness through the comment sections of online papers/journals or if this could be a great advocacy tool for a group of patient warriors?
Here are the three comments that I have drafted. Perhaps others will add a few of their own suggestions?
(Note – References could be added to this comment to identify top physicians and scientists who are working to try to solve this illness, but they need help from both private donors and the government to fund these projects. Here are some examples of research projects/institutes that people might want to reference - Open Medicine Foundation (http://www.openmedicinefoundation.org/), Stanford (http://med.stanford.edu/chronicfatiguesyndrome/about/projects.html), Columbia (http://cii.columbia.edu/research.aspx?8Fo92f) and, Simmaron (http://simmaronresearch.com/research/).For many patients, the illness (known as “Myalgic Encephalomyelitis” (M.E.), which was renamed in the U.S. to “Chronic Fatigue Syndrome” (C.F.S.), is a complex neurological, endocrine, immune illness with a suspected viral etiology and possible genetic, inflammatory and environmental toxicity components. (Chronic Fatigue Syndrome (C.F.S.) is the name that the Centers for Disease Control ("CDC") gave this illness following two large cluster outbreaks that occurred, in the 1980's, in Incline Village, Nevada and Lyndonville, New York.)
Many of the symptoms of this illness have similarities to other illnesses such as Acquired Immune Deficiency Syndrome (AIDS), Multiple Sclerosis (MS), Amyotrophic Lateral Sclerosis (ALS), Autism, Gulf War Syndrome (GWS), Arthropod Borne Illness Diseases (i.e. Lyme, Borrelia and other tick associated bacterial pathogens), Chronic and Acute Herpesvirus Illnesses, Parkinson’s Disease, Chemical and other Environmental Sensitivities.
These types of illnesses seem to be expanding exponentially around the world. We don’t have any more time to waste to try to push the science forward to crack the code on why we seem to be plagued with such chronic and devastating illnesses.
(Note - I have rec'd a comment from a Forum member (whose opinion I respect) that the word "exponentially" may not be very effective (regardless if it can be supported with facts) because it may not seem believable to the target audience. So, you may want to consider removing or modifying this word if you decide to use this comment.)
Understanding and change will not happen unless we are willing to open our eyes and see the real truth about this illness.
Please consider taking a few extra minutes to watch this short video to help open your eyes to the real story of this illness.
For more information about this video, see the Facebook Page and Website for this documentary.
If you want to know more about research into this illness, check out what these world-renowned physicians and researchers are working on. http://www.openmedicinefoundation.org/
(Note - The references to books written about the illness may not be something you want to include in a comment. These books may also be controversial to some in the ME/CFS Community, but I believe they both provide an interesting historical perspective (at least through the eyes of each author) to this illness. There may be other books that have been written, which might also be worth mentioning, but these are the two that I have read that set the stage for what was happening with this illness during different points in time.)The bottom line is that this Report from the Institute of Medicine about M.E./C.F.S. will only be more words on paper, if the U.S. Government does not adequately fund research, treatment and education of this illness.
Perhaps one or more of these four short videos will help people understand the obstacles that patients face in trying to find answers for this illness.
1) “Forgotten Plague" -
2) “Canary in a Coal Mine” -
3) “Voices from the Shadows” -
4) “Primetime Live” (1996) - http://youtu.be/AW0x9_Q8qbo
For information about “Forgotten Plague", go to the film’s website at http://mecfsdocumentary.com/ and Facebook Page at https://www.facebook.com/CFSDocumentary
For more information about the “Canary in a Coal Mine” documentary, go to the film’s website at http://www.canaryinacoalminefilm.com/#!and and Facebook Page at https://www.facebook.com/canaryfilm/info?tab=page_info
For more information about the “Voices from the Shadows” documentary, go to the film’s website at http://voicesfromtheshadowsfilm.co.uk/ and Facebook Page at https://www.facebook.com/VoicesfromtheShadows
In addition to the videos identified above, there are several books that have been written to provide some historical background about the illness.
1) Osler’s Web by Hillary Johnson. For more information about the book go to http://www.amazon.com/Oslers-Web-Labyrinth-Syndrome-Epidemic/dp/051770353X .
2) Plague by Dr. Judy Mikovitz and Kent Heckenlively. For more information about this book go to http://www.plaguethebook.com .
*Edit - If you watch the videos that I have selected, I think you might understand how these short videos can express some of the information that we want people to hear in a much more effective way than only relying on written words.