Thank you for your comment. You may find our online support groups helpful. They take place the 2nd and 3rd Tuesdays each month at 1 pm MT. batemanhornecenter.org/events/
So sorry you have lived with this illness for so long. We invite you to our support groups to connect with others who understand. batemanhornecenter.org/events/
I developed ME/ CFS after a delayed treatment for lyme-disease. I suffered from severe fatigue for two years before they tested me for lyme. The test came back positive. After 8 years of treatment, I still suffer from fatigue
My healthcare provider? I've seen soo many Drs over the past 40 yrs and they are all clueless. I've finally diagnosed myself. Mine began after childbirth with hemorrhaging.
Thank you for sharing your experience. We are so sorry. Please keep trying to find a clinician who will partner with you on your healthcare. Many find that sharing information from Bateman Horne Center can help bridge the gap of understanding with their provider.
If someone is in PEM >50% of the time that suggests that unless they have to care for children or others, work unhealthily to survive, they're not pacing. It's either quite a significant redefining of what PEM means relative to older diagnostic criterion (CCC for example, of the 2014 ICC) or it's explained somewhat inconsistently in relation to past discussions of PEM. Ideally, PEM should be avoided as much as possible, and someone experiencing moderate-to-severe PEM >50% of the time, as PEM has been conceived of in the past, would be on a fast-track to being bedbound in a quiet room with blackout curtains. Such a reframing of PEM without sufficient explanation is somewhat confusing, and makes it difficult to understand what NAM means by it, relative to earlier diagnostic criterion. Defining "moderate to severe" here would be useful as well - these words have wildly differing meanings to doctors and patients alike. It's a good video otherwise though, and appreciate it can only be as good as the NAM criterion it's based on, and the NAM criterion itself is unhelpfully vague on what they mean here.
20 yrs, moderate to severe. Bed bound, home bound. Struggle to shower, fix simple food, do housekeeping and more.
Thank you for your comment. You may find our online support groups helpful. They take place the 2nd and 3rd Tuesdays each month at 1 pm MT. batemanhornecenter.org/events/
Thank you 💙🩵💙🩵 25+ years I live with this illness.
So sorry you have lived with this illness for so long. We invite you to our support groups to connect with others who understand. batemanhornecenter.org/events/
I developed ME/CFS after contracting EBV. That was 27 years ago 😞
Thank you for your video 😊
Thank you for your feedback. We invite you to our support groups to connect with others who understand. batemanhornecenter.org/events/
Your informational video content is outstanding. Thank you for doing what you do!
Thank you for your feedback. It's helpful to know how our content is received.
I developed me/cfs after one shot of Pfizer, over 3 years ago now. This video sums up my life currently
So sorry this happened to you. We invite you to our support groups to connect with others who understand. batemanhornecenter.org/events/
I developed ME/ CFS after a delayed treatment for lyme-disease. I suffered from severe fatigue for two years before they tested me for lyme. The test came back positive. After 8 years of treatment, I still suffer from fatigue
Thank you for watching and sharing your experience. I am so sorry for what you are going through.
Have you looked at the Perrin Technique?
Snake oil alert, snake oil alert ...
My healthcare provider? I've seen soo many Drs over the past 40 yrs and they are all clueless. I've finally diagnosed myself. Mine began after childbirth with hemorrhaging.
Thank you for sharing your experience. We are so sorry. Please keep trying to find a clinician who will partner with you on your healthcare. Many find that sharing information from Bateman Horne Center can help bridge the gap of understanding with their provider.
If someone is in PEM >50% of the time that suggests that unless they have to care for children or others, work unhealthily to survive, they're not pacing. It's either quite a significant redefining of what PEM means relative to older diagnostic criterion (CCC for example, of the 2014 ICC) or it's explained somewhat inconsistently in relation to past discussions of PEM. Ideally, PEM should be avoided as much as possible, and someone experiencing moderate-to-severe PEM >50% of the time, as PEM has been conceived of in the past, would be on a fast-track to being bedbound in a quiet room with blackout curtains. Such a reframing of PEM without sufficient explanation is somewhat confusing, and makes it difficult to understand what NAM means by it, relative to earlier diagnostic criterion.
Defining "moderate to severe" here would be useful as well - these words have wildly differing meanings to doctors and patients alike.
It's a good video otherwise though, and appreciate it can only be as good as the NAM criterion it's based on, and the NAM criterion itself is unhelpfully vague on what they mean here.
Thank you for your insightful comments.