ME/CFS After Mono
My experience with EBV started with a Mono episode when I was 20 years old. I got Mono on the first day of military basic training, so for 4 weeks, instead of resting, I did the exact opposite x 10. After I got home from training, I did a lot of resting, but the EBV was firmly entrenched. I never recovered from that fatigue episode, and to this day (30 years later) I continue to have relapses of EBV, as shown by the IgG and IgM titers. These German researchers are onto something important. Obviously we aren’t going to get this kind of research done in the US (after all, ME/CFS is a psychological disease, right??), so I hope the German guys get all the funding they need and publish soon. And also start looking at how to combat the EBV once and for all. For now, all I know about is Larrea RX (filtered Chaparral), and I have been using it for almost a year now with good results. Not great, but good enough for me to survive day to day until the actual cure comes along. ~ Posted by: Sandy10m, May 11, 2014
What is “fatigue”?
As Dr. Jason points out, what is “fatigue” etc.? Using objective measures, oxygen uptake, decline in exercise performance parameters at a second exercise test 24h later, cognitive test scores, blood pressure and heart rate for orthostatic intolerance etc. instead of using subjective measures, could resolve many of the problems due to “vague notions”: See: “The status of and future research into Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: the need of accurate diagnosis, objective assessment, and acknowledging biological and clinical subgroups.” It probably would resolve the controversy about the “success” in CBT: a (small) reduction in fatigue, but no objective improvement. ~ Posted by: franktwisk, May 4, 2014
Sympathy and Condolences
Re: David’s Story
My heart breaks for you, David’s parents and loved ones. Thank you for sharing the goodness of David’s life and character in your account of his situation. A young man who was a good student and cared for birds and nature must have been blessed with exceptional parents, and David carried forth your goodness in his own way and own life.
As to the medical account, I am drawn to one statement: “All his hormones were very, very low, nearly alarmingly low. We showed the results to the doctors and asked for follow-up, or for more testing. The answer was that the tests were designed for detecting an overproduction of these hormones, so these results are meaningless.” By sharing this one important fact, David’s situation may help point the way to the millions who suffer with ME/CFS throughout the world.
To those who are suffering from ME/CFS or caring for someone who is, consider seeing a health care provider who practices hormone replacement therapy. Typically this is not an endocrinologist. Instead, it is a doctor who has been trained in the benefits and practice of raising hormone levels to improve health. ~ Posted by: me/cfs, May 15, 2014
The family is in my thoughts, and their passion to change things in Germany, and perhaps beyond will be greatly appreciated by many who suffer alone and without help! ~ Posted by: gcubed, May 15, 2014
Please pass along my condolences to this family. My heart breaks for them. Their struggle is way too familiar. Please tell them thank you for sharing this story. I will share this story. Please let them know the effort they put forth to write this will make a difference. ProHealth, thank you for leading the way in sharing such relevant and important information. Your organization does great work. Thank you. ~ Posted by: Coachme, May 14, 2014
Recommend this article for all people who have ” supportive ” family & friends
Each time, I read something that validates my feelings, behaviors, and frustration, I feel better. When some unknown person’s words describe my life, to me, is a gift. This article validates symptoms I experience but, have unsuccessfully made believable to my family and “friends” before they disappear. Thank you for helping me. ~ Posted by: fuganuts, May 7, 2014
Very nicely put – if only this could become reality! I just cannot figure out why people will do nearly anything to negate the ability of an individual to have tender care and complete rest. Is it some type of awful ‘my life sucks, so you’ve just got to deal with it’ kind of thing? Kindness would make dealing with this so much less ugly. ~ Posted by: Juloo, Apr 22, 2014
More Research Needed
We need more fundamental research into the relationship between Leptin dysmetabolism, syncetin-1 and HERVS which typically underlie these abnormalities in many autoimmune illnesses. ~ Posted by: IanH, Apr 27, 2014