Sallysblooms
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I enjoyed both videos! I was hoping to hear more about treatments. Just pain killer and help for sleep. Strange. He seems caring and knowledgeble in many areas though.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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My point being -- my daughter, young and healthy, clearly developed CFS when I did and had a fairly mild, level course until the time her HHV-6 reactived, after which she declined. I wonder if this is true for other people who don't get the quality of care Dr Komaroff provides....
Ouch! I don't know if he said that nobody gets worse but I 'm not worried about him pushing a CDC agenda. Did you see the video? He was all about documenting brain problems, immune problems, pathogen problems legitimizing CFS as a physiological disorder...he even said he thinks mitochondrial problems are important - that's a big step for a pretty conservative CFS researcher. I don't see the CDC calling for more pathogen studies or saying that active HHV-6 infection is a problem or even hinting at the possibility of mitochondrial problems. I would not put him in their category at all; they have quite different viewpoints. He may be conservative in some areas and he may make a mistake at times - but that presentation was what I wanted to see.
( I hope this thread doesn't come to be about his one mistake (I would note that I'm still not sure exactly what he said).
Personally I was struck by his enthusiasm for all the interesting efforts going on right now in CFS and his belief that things will improve quickly for us over the next couple of years. I hope he's right. When you think how little funding CFS gets the amount of innovative and interesting research that's going on is pretty impressive.
''Almost everyone that I've have cared for is afraid they are suffering from an illness that is going to go progressively down hill. And I will say over 25 years and 450 patients, I have never seen one person who went progressively down hill. The trajectory is people feel really bad in the first year and gradually function better for the remaining years but relatively few have returned to full health and some of them who have gone onto full health have then go onto have relapses.So the good news in my experience is this is not an illness that keeps getting worse. Infact, 5 years out people are functioning better than they were 1 year out, but it is also a chronic illness which means it remains significantly hobbling people for many many years.''
Huh. So much for my theory.
Then does seem odd to me, too, that he hasn't seen progressive cases. Quite the puzzler, actually, as I'm sure we're not a miniscule part of the CFS community. Or are we?
One of Dr. Komaroff's points was that ME/CFS doesn't have a steady downward course. He said that what he had seen was that patients were typically worse off in the first year than in subsequent years. He said that some even had periods of remission but that these were almost always followed by a relapse. So he implied that ME/CFS appears to be a sustained condition which follows either an even or a slowly failing course.....He used hand gestures to try to outline this.
I wanted to add onto his findings with my experience. My worst period was the first 3 years before any treatment and before I had worked out what I needed to for self care (diet, rest, pacing, etc.) But then, with medications for some of my symptoms and increasing self care, I improved--my quality of life improved for a while. However, HOWEVER, aging and other physical issues not only took their usual tolls, but they also have combined with my ME/CFS to impact my system considerably more and sometimes differently than would be expected in a healthy person. For example, the aging brain or the aging digestive system or the aging energy picture will not be at all the same for someone with ME/CFS. So I would see that steady or gradually descending line of functioning going definitely downhill at the time when aging or any other forms of debility or challenge comes into the picture.
Sing