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.
Hi. Yes (sadly) it is an OUCH!

I agree fully he is person who is trying to help and very well read, exceptionally so. Yet knowing this, his statements are very puzzling. Maybe he gives his patients immune drugs, and other medications? Maybe his patients get great care? This is possible.
So to the fundamental point. There are countless cases reported by Action for ME, The ME Association, and the 25% group in the UK
of patients who get progressively worse.Some of these people
kill themselves, or die from infections or heart attacks/cancer. We all know this, hence I was shocked that after presenting such brilliant research on showing CFS is a condition affecting immune/neuro/cellular function - he hasn't 'twigged' what this might mean for many people with this type of illness.
I can only think he has never seen a severe patient, yet we all know 1 in 4 people are severe! (In the group of severe patients, by logic, some will be progressively ill). Are these the minority? Most probably, yes.
Now the rest of Dr Komaroff's presentation was flawless!!!! I listened to every word, and have spent days absorbing what he showed us. Great work.
If Dr Komaroff has never once seen one single patient that is getting worse - is this statistically possible for what he calls ME? (A neuro disease). At the end of the talk, he calls CFS - ME! (Hence we're back to the 1 in 4 people severe affected again). So there has to be a reason he said this because ask anyone; be it Dr Klimas, Dr Peterson, Dr Bell, De Meirleir, Dr Hyde, Dr Lapp, Dr Cheney if in a group of 450 CFS patients how many progressive patients would there be.(Every single one of these ME CFS specialists will confirm there will be at least a few).
Why did Dr Komaroff feel the need to stress the idea there are none? He said it with his own words. I can only think that CFS is not ME, and thus he doesn't see people with ME? Yet he describes ME, and concludes CFS should be called ME. Now myself (as a patient) I have met 4 people with ME. 1 of them is dead already, the other is having bits cut out of her for cancer. So out of 4 random people. 25% of my ME folk are dead, 1 has progressed into cancer, the other is losing vision (optic neuritis), and one is stable.
He says he's met 450 people ( 446 more than me) and yet met a progressive case. LOL! Is this statistically possible for a neurological immune disease? Maybe he treats them all? This is one possibilty.
Before saying no one he's met has ever gotten worse, he emphasis what he is about to say by saying, 'This is very important''. and then went on to say what I have quoted below.
This first two lines below is against everything leading ME CFS charities say about the course of the illness. For this reason Dr Komaroff is (sadly) misleading the public, which is very disappointing when the rest of the presentation is accurate, informative and educational and actually helps patients fight their cause.
Source: Video Q&A of Dr Komaroff presentation on CFS - 'trajectory of the illness' -
Available online at:
http://www.masscfids.org/videofiles/Questions/Questions.html
''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.''
This needs to be pointed out, as many patients are being made invisible by denying they don't exist. Hence the importance to bring it up. If you live your life on a feeding-tube in a dark room with no medical or social input (as people with progressive ME do), it's somewhat awful to hear these people being denied - literally, to a group of people with CFS by an expert in medicine from Harvard. On a personal note, he also denying me as an ME patient. It took me 5 years to end up in a wheelchair, then in hospital, and then in ER's. So I am progressive. According to Dr Komaroff I also do not exist. As a big fan of his, this is unfortunate.
Yes. Let's not dwell on this too long, but lets say it's somewhat out of conventional wisdom in CFS and so I want to stand up for people who are being 'deleted' by him.
Myself, I am really interested in the EEG study he mentioned, and I am wondering what this research may show? I am guessing if Dr Komaroff and Dr Kimas (twice) on video have now said CFS causes ''low grade brain inflammation'' then this presumably causes EEG changes? Also the Mitochondrial work. Dr Sarah Myhill in the UK has already done a
paper on this. Also I noted he was respectful of the failed XMRV attempts to detect XMRV, but I see he didn't think they were of much importance.
I think of all people I've ever seen, he is the best public speaker I've seen on this illness and I look forward to another presentation.