Thank you so much for this interview. It was very interesting to hear what Jan had to say about her journey with ME/CFS. I've had this illness since May 1999. I got a terrible virus, which morphed into ME/CFS. Like so many others, when I first got sick, I had a couple of doctors who told me it was all in my head, even though I was extremely ill. I thought I was going to die. But I knew THEY were the ones who were crazy--not me. I went to a specialist (a nephrologist, of all people!) at UCLA, who immediately diagnosed me. So I was very lucky to get diagnosed within about 3 months of onset of symptoms. I had to go out on disability from a job I loved, and for a few years, spent my entire days in bed and on the couch. Now, I'm able to do more, though am still mostly housebound. I put a lot of hope in researchers like Ron Davis. Also, I think COVID-19 "long-haulers" will be studied, and the result will be more attention, more research, and perhaps, some drugs, finally, for ME/CFS. Thank you so much, Llewellyn, for this series. I greatly appreciate what you do to help shine a light on this horrible illness.
I find this video very touching. I have ME/CFS since 1998 after a mono and a cytokine "explosion". However Hypersomnia drugs can help, if it's a ME/CFS with hypersomnia. Fatigue and PEM, cognitive dysfunction are terrible. We want to live life, but can't. Thanks for posting this video.
Llewelyn, Could you let Jan know about some wonderful new videos from Bateman Horne Center on RUclips. There are two parts on Orthostatic Intolerance. Part 1 is more of a definition and part 2 is for Medical Care providers on treatment. I think that Orthostatic Intolerance is what Jan means when she says, “ low blood stuff”. Also there is a 3 part educational series of videos aimed at medical care providers,( Unraveling Complexity of Chronic Pain & Fatigue)..Thanks
![Life with ME/CFS | Professor Warren Tate [Chronic Fatigue | ME]](http://i.ytimg.com/vi/GZh_dv15gvg/mqdefault.jpg)
Thank you so much for this interview. It was very interesting to hear what Jan had to say about her journey with ME/CFS. I've had this illness since May 1999. I got a terrible virus, which morphed into ME/CFS. Like so many others, when I first got sick, I had a couple of doctors who told me it was all in my head, even though I was extremely ill. I thought I was going to die. But I knew THEY were the ones who were crazy--not me. I went to a specialist (a nephrologist, of all people!) at UCLA, who immediately diagnosed me. So I was very lucky to get diagnosed within about 3 months of onset of symptoms. I had to go out on disability from a job I loved, and for a few years, spent my entire days in bed and on the couch. Now, I'm able to do more, though am still mostly housebound. I put a lot of hope in researchers like Ron Davis. Also, I think COVID-19 "long-haulers" will be studied, and the result will be more attention, more research, and perhaps, some drugs, finally, for ME/CFS. Thank you so much, Llewellyn, for this series. I greatly appreciate what you do to help shine a light on this horrible illness.
Lovely interview. Thank you. 💛
I find this video very touching. I have ME/CFS since 1998 after a mono and a cytokine "explosion". However Hypersomnia drugs can help, if it's a ME/CFS with hypersomnia. Fatigue and PEM, cognitive dysfunction are terrible. We want to live life, but can't. Thanks for posting this video.
Thank you.
Thanks for the video!
In what dosage should you use the Amantadine until you get a possible effect?
Best regards,
Oliver
Thank you for sharing ❤️ my first comment was deleted dont know why, maybe i wrote the C word... linked to the time we are living in now.
Llewelyn, Could you let Jan know about some wonderful new videos from Bateman Horne Center on RUclips. There are two parts on Orthostatic Intolerance. Part 1 is more of a definition and part 2 is for Medical Care providers on treatment. I think that Orthostatic Intolerance is what Jan means when she says, “ low blood stuff”. Also there is a 3 part educational series of videos aimed at medical care providers,( Unraveling Complexity of Chronic Pain & Fatigue)..Thanks
Thanks to all involved.
Could you share the link to Jans RUclips you refer to. Not able to access as written.
If you write to me at llewellynking1@gmail.com I will try and help. I don't fully understand the problem.
Cheers,
Llewellyn