I have been dealing with ME/CFS since I was 16, now 53.. it’s been a long hard road, I so wish that they could find a cure for this thing or at the very least find something to make the quality of life better.. one day, I hope
Here's to sub grouping with larger scale studies! We've known we need this for ages. About time someone (who actually has the funds) actually funds them. We're being held back by this dramatically. Here's also to studying PEM, the NIH feedback from the community was full of people saying why haven't you mentioned PEM, you must study this, it's so important to us as patients, and yet it's so under studied. From my perspective, if I had to choose just a single one of these horrific symptoms that I have, to get rid of, it would be PEM! For sure. It's hell on earth. And almost impossible to get a grip on when you reach the severe end and are having to fight to get the right level of support to help you literally stay alive. You can't pace to remove PEM if you're not able to get the right support. I'd really love some kind of medication that could help manage it. I feel like it's the key to this illness!!! When I remove PEM I improve. When I keep triggering it I get sicker over time. How is it not more of a big deal in the research world???
🔴Anyone help me PLEASE.Is it known/heard of as a Symptom of people with M.E,to be unable to produce CORTISOL?? = Req.cortisone etc meds to vaguely function & also prevent Adrenal Crisis?? Thank you😊
Solve M.E.Thank you for ALL you do.Great info here,thanks Dr. L.Jason😊
I have been dealing with ME/CFS since I was 16, now 53.. it’s been a long hard road, I so wish that they could find a cure for this thing or at the very least find something to make the quality of life better.. one day, I hope
Here's to sub grouping with larger scale studies! We've known we need this for ages. About time someone (who actually has the funds) actually funds them. We're being held back by this dramatically.
Here's also to studying PEM, the NIH feedback from the community was full of people saying why haven't you mentioned PEM, you must study this, it's so important to us as patients, and yet it's so under studied. From my perspective, if I had to choose just a single one of these horrific symptoms that I have, to get rid of, it would be PEM! For sure. It's hell on earth. And almost impossible to get a grip on when you reach the severe end and are having to fight to get the right level of support to help you literally stay alive. You can't pace to remove PEM if you're not able to get the right support. I'd really love some kind of medication that could help manage it. I feel like it's the key to this illness!!!
When I remove PEM I improve. When I keep triggering it I get sicker over time. How is it not more of a big deal in the research world???
🔴Anyone help me PLEASE.Is it known/heard of as a Symptom of people with M.E,to be unable to produce CORTISOL?? = Req.cortisone etc meds to vaguely function & also prevent Adrenal Crisis?? Thank you😊