Search results
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Fluge/Mella Take out Patent on Nitric Oxide Treatment for ME/CFS
I have experienced, Cort, that burning on the skin and in the muscles. But the fire in the blood vessels I feel just in the blood vessels. They hurt, are tender to the touch, and I think of them as inflamed. I wouldn't say it is a burning sensation, but, rather, that the word "fire" equals... -
Fluge/Mella Take out Patent on Nitric Oxide Treatment for ME/CFS
Interesting, @JennyJenny. I have seen the video and remember the woman's comment that she feels like she has cement in her veins. I focused on the cement rather than cement in the veins and thought she meant she feels heavy and slow, nearly immobile. You describe your veins as being filled with... -
About leading researchers being turned down by NIH - the facts?
But the edit button is only available for a short time, less than an hour. As the proofreading and editing part of my brain works on delay -- I wake up in the middle of the night and realize I've chosen the wrong word in a post written hours before -- this lack of access to the edit button...- Merry
- Post #7
- Forum: General Discussion
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Fluge/Mella Take out Patent on Nitric Oxide Treatment for ME/CFS
On one visit to the doctor who diagnosed my CFS (1990), I mentioned the pain in my blood vessels. He said, oh yes, CFS patients have vasculitis. A few years later when I saw a gastroenterologist, I mentioned the vasculitis, and he burst out laughing: "You don't have vasculitis!" What did I... -
NIH analyses funding vs. disease harm
In a Washington Post blog titled "Why the diseases that cause the most harm don't always get the most research money," Carolyn Johnson writes about the National Institutes of Health's analysis of its research funding...- Merry
- Thread
- Replies: 1
- Forum: Health News
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Poll Do You Have Progressive Chronic Fatigue Syndrome (ME/CFS)?
Like you, Katie, digestive problems (life-long according to my mother) and problems standing (some form of orthostatic intolerance?) preceded the chronic condition that feels viral. I grew up in a house that got its water from a shallow well at the edge of a field, so I, too, would have been... -
Poll Do You Have Progressive Chronic Fatigue Syndrome (ME/CFS)?
My illness has been progressive as was my mother's. The last few years of my mother's life were a nightmare: lymphoma (in her breasts), myelodysplasia, cirrhosis (non-alcoholic). I guess the good news is that although I'm now near the age she was when she died, I don't have lymphoma... -
Brian Piening explains OMF's severely ill big data study
Stanford researcher Brian Piening created a video to explain the data that is being (will be?) collected on severely ill ME/CFS patients in the OMF's study.- Merry
- Thread
- Replies: 1
- Forum: Chronic Fatigue Syndrome (ME/CFS) Research
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Living on Empty: Newspaper Story Highlights Whitney Dafoe's Severe ME/CFS
I understand that some of the people who have contributed to this thread are so shocked and horrified at how very ill Whitney is that they want something to be done right this minute to make him better, but implicit (in some cases more than implicit) in the suggestions is criticism of his...- Merry
- Post #24
- Forum: ME/CFS and FM News
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Living on Empty: Newspaper Story Highlights Whitney Dafoe's Severe ME/CFS
Unless he comes in to fill out paperwork? This is so sad and infuriating.- Merry
- Post #19
- Forum: ME/CFS and FM News
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Living on Empty: Newspaper Story Highlights Whitney Dafoe's Severe ME/CFS
This video which is about Whitney and his family and, to a lesser extent, two other ME/CFS patients, may have been made to accompany the news story, although I didn't find it at the Palo Alto Weekly website but on Facebook:- Merry
- Post #10
- Forum: ME/CFS and FM News
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Per Fink complains about IOM ME/CFS report
For those of you who have not been following the Karina Hansen story (taken from her home, incarcerated in mental hospital, parents forbidden contact: https://www.facebook.com/JusticeForKarinaHansen?fref=ts ), Per Fink was her doctor in the mental hospital. She has been moved to another...- Merry
- Thread
- Replies: 2
- Forum: ME/CFS and FM News
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Simon Wessely's Big Shift? CBT Icon Calls For Big Rituximab Trial
He's smart in the sense of always maneuvering to make himself look good, in control, on the winning side. I have puzzled over what exactly he means. What's tragic? What does "tragic that it might take a study like this" mean? What's "a study like this"? I considered the possibility that...- Merry
- Post #3
- Forum: ME/CFS and FM News
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Moving New Brochure from the Open Medicine Medicine Foundation
I intend to donate this month to the OMF in honor of Whitney Dafoe. I remember him from Phoenix Rising and am distressed to find out how very ill he is now. Last week someone posted on Facebook a youtube video of Janet Dafoe, Whitney's mother, speaking about him and the role of caregiver that...- Merry
- Post #3
- Forum: ME/CFS and FM News
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Contest Help National ME/FM Action Network Win $2000
The National ME/FM Action Network is now in first place. Thanks, everyone. Just a little over two more months to go. Keep voting! The $2000 will fund research. http://www.karmacanada.ca/contest/organizations/national-mefm-action-network/?search=helen Other, smaller Canadian ME/FM...- Merry
- Post #5
- Forum: Advocacy, Contests and Events
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How to survive a Plague?
Thanks for bringing up this film, Folk. I saw it a couple of years ago and would certainly recommend it. People in the ME/CFS community have often asked why can't we be more like AIDS activists. What struck me while watching the film is how functional the activists were. They could get...- Merry
- Post #8
- Forum: General Discussion
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Contest Help National ME/FM Action Network Win $2000
http://www.karmacanada.ca/contest/organizations/national-mefm-action-network/?search=helen- Merry
- Post #4
- Forum: Advocacy, Contests and Events
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Post Ebola Syndrome or ME/CFS?
Thank you, Cort, for speaking up for our community. That was a well-written response.- Merry
- Post #8
- Forum: Health News
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Post Ebola Syndrome or ME/CFS?
Vincent Racaniello, in a blog post yesterday, 18 June 2015, discussed a study of the long-term health consequences for some people who survive an Ebola infection:- Merry
- Post #5
- Forum: Health News
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![ME/CFS lecture | Dr Nancy Klimas | 2011 [Chronic Fatigue Syndrome / SEID / New Zealand] - YouTube](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
