August 23, 2014
I am hurt right now and I am angry. I am also having a flare of my MECFS as the price I pay for trying to enjoy a semi-normal holiday weekend with my family.
I just read a facebook post from a desperately ill ME patient that had been turned away from the University of Pennsylvania. She has lost 20 pounds in the last four months and is at 83 pounds. The reason she was turned away: her diagnosis- Chronic Fatigue Syndrome. The hospital was even threatening to call the authorities as she begged for their help.
This post reminded me of the handful of times that I have been so desperately ill and beside myself with ME that I was suicidal. My obviously worried family would beg me to go to the hospital, but I had been down that path before. It would be a waste of hundreds of…
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By Edward Burmeister
I am taking the liberty of posting this entry on Jeannette’s blog.
Many of you know that I seldom become involved in ME advocacy. My wife, Jeannette, is typically capable of holding her own. She has been, health permitting, a relentless advocate for ME for several years and has been effective in holding government agencies and officials accountable when their actions or inaction have damaged the ME patient community, and in particular when they have not lived up to their legal responsibilities. It is true that she has strong opinions on how to conduct effective advocacy and states her position assertively, but I can assure you that she makes it a priority to focus on the issues and to stay away from personal ad hominem attacks on other individuals advocating for ME. On the rare occasion when she has made a mistake, she was quick to apologize…
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A recent addition to the ME advocacy community, Dr. James Coyne, has been celebrated as a savior of ME patients almost immediately since he joined the conversation just a few months ago by attacking the PACE trial. He has been a very welcome ally. So, it was rather bizarre when Coyne gave the ME community an aggressive ultimatum yesterday, in an apparent attempt to silence patients whom he disagrees with. In this particular case, it was my opinion regarding Walitt’s appointment as lead clinical investigator for the NIH study he took exception with. According to the ultimatum, patients can either “do something about [me]” or he “is out of here.” He posted the following about a tweet of mine addressed to NIH Director Dr. Francis Collins in two Facebook groups, “Invest in ME” and “The ME Alliance:”
He then proceeded to call me a “sick crazy lawyer,” tell another patient to “fuck off,” label…
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Please read Jeannette Ketterle Burmeister’s blog post on why Brian Walitt, lead investigator of NIH’s new M.E. (“CFS”) study, should be removed.
NIH has tapped Dr. Brian Walitt as the lead clinical investigator for its intramural study “Post-Infectious Myalgic Encephalomyopathy/Chronic Fatigue Syndrome.” (For terminology, please see the end of the post.)
Only a few months ago—in September 2015—Dr. Walitt gave an interview at a rheumatology conference about his conference presentation on fibromyalgia: “Tilting at Windmills (a rational approach to fibromyalgia).” Rarely have I seen anything less rational than Dr. Walitt’s interview. You simply must watch it because those nine minutes will make you wonder if you mixed up your thyroid meds with some left-over Quaaludes. There is not even a pretense of scientific thinking. The interview illustrates what NIH has in store for us. Watch it, really let it sink it and then tell me that it doesn’t scare the pants off of you. Share it!
Walitt’s claims lack even an inkling of science. In the demeanor of a hokey cult leader…
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So the last week of August I had a relapse of my noise sensitivity, vertigo, and POTS symptoms. The vertigo was so bad I didn’t move my head if I could help it because it’d cause so much discomfort just to move it. The noise sensitivity was so bad even the sound of the A/C or normal ticks that houses make was excrutiating. I spent most of the weekdays in silence (at my house). I’m on LDN now. I should have documented when I started it again. My memory is not so good lately. My work-from-bed job zaps my brain power and then I don’t have much brains left for much else.
The LDN is helping. I try to skip it a couple or few times a week because I think it stays more effective that way / my body doesn’t get as used to it. It’s not helping as…
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On the morning of Monday, August 3rd when I woke up to begin my work-from-bed job on my laptop, I discovered I was relapsing with my ME/CFS.
I couldn’t get to the kitchen or bathroom at all at first. My legs wouldn’t work. My body felt like I had been in a bad car wreck or fallen down a long flight of stairs, from head to toe. I could feel “injuries” on my neck, back, legs and feet. My legs were the worst (usually my arms and neck are the worst). My calves were totally locked up and my knees had huge swelling and red/purple bruises covering them. Perhaps Tonya Harding’s cronies had taken a club to me while I slept.
When I managed to walk that day I used my cane and hobbled slowly with weird backward reverb of my upper body each time I took a step. I…
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On Saturday, July 4th I woke up feeling like my life was turned upside down compared to the functionality of the last 8 months. It took me until 7pm to manage my symptoms well enough to go sit in a lawn to watch fireworks. The next day, Sunday, July 5th was worse. I was shaking life a leaf in church and declined rapidly afterward. Whole body muscle spasms, extreme weakness, moments of neurological paralysis, so much pain, lack of postural control…always hard for me to describe it through brain fog when it was 10 days ago. The day after, Monday July 6th I was terrified at work because I could not work. I had to tell my boss I could only do a little work here and there, which is devastating to me because for the past 8 years I’ve never been able to keep a job. But this one…
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Hard to believe my last entry was only written 18 days ago. But M.E./CFS can rapidly decline in a few hours so it’s no surprise. I feel like I’m losing control of my body and life. I am. When I saw my mom Thursday she said I seemed drunk (she knows I’m not – she’s just saying it seemed like it). I couldn’t hear what she was saying, I couldn’t reply to her, I was dropping things, I was a zombie, etc. I had been feeling improved on LDN (low-dose naltrexone, a neuroimmune disease medicine) and now I am slipping into a sort of relapse. Just now I wondered if maybe I made myself sick by trying to ice skate again (skating was my childhood hobby). I was trying to enjoy as much of life as I could and maybe I should have just rested and enjoyed being able to…
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I’ll attempt to write a diary entry about my illness. I used to be a wonderful writer and in fact it was one of the things I loved the most. My brain broke when I got sick in 2007. The concentration it takes makes me more ill when I attempt it and what comes out on the page is not nearly as well written as it would have been prior to 2007.
So, life has been quite nice lately. I met 3 other girls on the Myalgic Encephalomyelitis Global support group on Facebook. Lindsey posted what if we did an ice bucket type challenge. Nicola said she’d already thought of the Chilli ME Challenge with her husband. I really wanted to make it happen with them and Catherine jumped on board too. So the four of us formed a friendship and dove into this thing unequipped and ignoring what others…
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