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....
My illness started out severe but got better within a year although I only reached 50% of my normal functioning. I wasn't able to work but could cook, do housework, light gardening, and daily living activities. I was not diagnosed properly at the time so I had no idea what was truly wrong. Doctors were, for the most part, dismissive. I got frustrated 6 years later, still no better, and pushed myself to exercise more so I could somehow 'snap out of it.' I had no idea what could result. I got so very sick, bed-bound, unable to bathe myself, feed myself etc.
I am certain if I had gotten proper care and was told how to live so that I would not relapse, I would not be so ill today. I am much sicker 10 years after the initial onset of my illness. So sadly, it can be progressive. I had changed states 1 year just prior to the relapse so I was correctly diagnosed 4 years ago in my new state. I can only imagine what would have become of me had I remained in New England.
I think the limited view of CFS/ME Dr. Komaroff expressed is partly due to medical specialization and unintended selection effects. As currently defined, he can't really treat patients who develop really serious consequences, like cardiac problems. It would be irresponsible for him not to send such patients to a cardiologist. If a heart problem is due to viral infection of heart muscle, the CFS label is removed, and the patient goes into a new diagnostic category. A patient with hepatitis would also likely be transferred to someone else. As soon as a life-threatening problem is revealed, the patient ceases to be a CFS patient. Thus, his view that CFS does not get worse, and primarily involves neurological abnormalities, would correspond to his experience.
His policy on antiviral treatment limits him to infections which respond to short-term antiviral therapy, shingles being a good example. If Dr. Lerner is correct about a non-permissive viral infection, then short-term therapy is unlikely to do much. He is essentially keeping infected cells from passing virus on to other cells until those cells die of the cellular equivalent of old age. This is outside the scope of treatment for Dr. Komarov.
There is one other aspect of long-term CFS which prompts me to go beyond the fairly mundane explanation above and speculate. After decades of hearing that my problems had no physical cause, I began hearing that my symptoms were a natural consequence of aging. They certainly sound similar, but they started in my teens. How many people struggle with long-term disability due to unknown infections until declining immune function precipitates a crisis which kills them? The entire medical profession might be unable to see the forest for the trees.
I had really progressed after finally getting a diagnosis years after the onset. I was doing yard and housework, even driving a brand new convertible that hubby got me since I could drive again. Not far, but to the groc. store and dentist. Well, a couple months after getting my car, the Disautonomia hit as well as very high blood pressure! WHAM! I then got help again three months ago and I am getting better slowly from that with lots of great supplements. I expect to get better and maybe worse down the road.
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.
''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.
I am a patient of Dr. Komaroff. Not sure I can add a lot of perspective but I can tell you he is on the conservative side of things. Even before XMRV he had a particular interest in viral issues in CFIDS. I believe he will treat with anti-virals if you have HHV-6. I don't know what his position is on XMRV in regards to treatment. My take has been that he is more of a research doctor than a treating doctor. I will be seeing him on June 25 and will let you know if he has anything interesting to say. I haven't seen him for 4 years now.
My take is that many people actually don't get much better. they just learn to deal with their misery better. I think Dr. Cheney or another noteworthy CFIDS doctor found this. Many people get pretty good at slogging through the day. This is sometimes mistaken as an improvement in health.
I agree fully, we all 'get used' to horrible neurological and immune symptoms.
E.g. we get used to sneezing and coughing having blood shot eyes and not going to a doctor to report this -then progresses to blurred vision - we still don't report it.
E.g. we get used to having a numb face (realising we aren't having a stroke) and not going to a doctor to report this - then progresses to chronic severe pain - we still don't report it.
E.g. we get used to having low blood sugar attacks - learn to keep coca cola close by, and not going to a doctor to report this - then then progresses into obesity - we still don't report it.
E.g. we get used to being out of breath when washing the car at the weekend, and not going to a doctor to report this - then progresses into unable to walk - we still don't report it.
E.g. we get used to being confused navigating a shopping mall, and not going to a doctor to report this - then progresses into confused at night time in own house - we still don't report it.
CFS symptoms are thus (as you explained) under reported.
All of this under reporting doesn't mean the symptoms resolve, indeed they could be or often are progressive. We just 'adjust' as humans to realise the situation from the CDC is futile (being told to exercise and do CBT), and have to severely limit what we can do - in order to cope. (E.g. leave work, have home help, not go out the home etc).
At first all these limitations and 50+ other symptoms scare us, and we go see the doctor a lot more. Eventually we accept our lives are ruined, and keep quiet as there is little to no help out there and by now we have the functional capacity of someone aged 80 or worse.
So you make a good observation that Dr Komaroff could (wrongly) perceive (or is quoting CDC figures?) that within 5 years people get better (not cured). The good news is from Dr Komaroff's presentation he is quite clear that CFS should be called ME (as it causes brain inflammation), and that CFS causes cell, immune, mitchondria, autonomic nervous system dysfunction, brain wave changes.
So the next question is, now this is being said by a gentlemen so learned and so influential - is the CDC going to listen to Dr Komaroff and fund bio-medical research into the areas he highlighted?
You are right Dys, we stop complaining. I think that when we go downhill we become invisible to doctors. Useful in the UK - no one sends you to a clinic :Retro smile:
Ramsay spoke of 50% of ME people reaching a sort of plateau of ill health. If you are lucky it will be a fairly high one, if you are bed bound and tube fed you lose.
ME isn't usually progressive in the way that, say, MS is. You can't look at someone and tell how long they have been ill by what they can do.
My own view, is that we mainly get worse because of outside influences rather than the internal disease. Every time I got the flu I came out of it at a lower level of functioning.
The worst thing is that over exercising makes us much worse. If the psyches had not got involved and people had been encouraged to rest when they first got ill, most people would plateau at a reasonable level of functioning. It is the natural response to push ourselves in the days before we are diagnosed and then the encouragement to exercise afterwards that is causing so much permanent damage to our group.
Personally, I was one of the unlucky ones who gradually got worse but there has been no expert round to see it.
Nevertheless, we have to accept that our "champions" all have feet of clay and let the good they say stand. At least he isn't recommending exercise. :Retro smile:
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.
I think your last paragraph would accurately reflect my experience, except that I think it took me 5 years to get a handle on things. I just tried to live my life, as my PCP and Dr who diagnosed me told me to, obviously at a much more sedentary level than before. I was diagnosed with Fibromyalgia about 2 years ago and I have to take things down another notch. Un/fortunately I am still working but do not do much else than that, not much of an existence.