I read most of this in a CDC study.....
Gotcha. Just kidding. LOL Come on guys, we have to have some humor in all this debate, criticism and science talk.
I really am not feeling well and I hate to look up studies, but I put my foot in it and now have been challenged. Let's see how I do.....
Ok, there is something here about improvement with chocolate...
Oh, and here is something about lightening? So is this saying that I should stand under trees?
Sorry, I am still having fun. Disregard the last two sentences.
Ok, most of the studies I am seeing say, "__________ has been shown to improve....."
There is a study I found that showed CFS patients with short duration of complaints had a more favorable outcome. (Now call me stupid, but if your illness is long duration, then how can that have a favorable outcome? Am I missing something. It's like saying those people who have paint on their face reported discoloration of the face. A person who has complaints of symptoms in a shorter duration would naturally have a more favorable outcome.) This is S. van der Werf
Anyway, I saw another that said 5% have full recovery. Improvement was seen in 39.5%. And 5-20% saw worsening symptoms. These had no treatment, I think. I know you all likely are familiar with this study. It is Professor M. Totopf, published in Occupationall Medicine in 2005.
CAA says on their Web site, "Based on limited research data available, it appears that the majority of patients with CFS improve within five years of becoming ill." and... "Based on statistical data from the Centers for Disease Control and Prevention, if symptoms last for five years, it is unlikely that the illness will improve significantly in subsequent years."
So I bet you will say these are questionable studies. Given the varying criteria for CFS, can we trust any study that says a percentage will see improvement, even if it says 0%? I give up. Until we know what CFS is and all studies use the same criteria, we can't trust any of them.
I am getting frustrated by all the efforts to pin anything down in such ambiguity and controversy with this illness. No wonder so many don't want to get involved in studies or treatment.
I guess what I can go on, which is not suitable for publication, is my own experience and the reports of others and clinicians specializing. I trust Klimas, Komaroff, Peterson, and the like that they know what CFS is and what it isn't.
I have a friend who has CFS. She gradually recovered over many years to the point of working part time. She had to rest after she got home, but she could work. She got pneumonia and relapsed and had to quite work.
I guess I just hear those stories so often, and it was my experience, that I thought it was accepted, given, that a percentage recovered (small percentage) or improved (larger percentage). With some (small percentage) that never make any improvement.
So, Dr. Yes, I don't have anything that we can all agree is credible to refute this statement you made:
"A few have reported improvement in such programs, but nowhere near "most", and the scientific validity of many of these trials is questionable."
And this is what I meant:
"as many people have at various times regained some or a great deal of their previous health, and a fortunate few appear to have entirely recovered."
So I guess I failed to find a study that we could all agree on that says some or a majority (over 50%) people see some improvement.
I think the debate is whether the improvement is a result of increasing levels of body activity. I guess we can say that there is no consensus or unquestionable study that shows this. As I said, any study that did would bring up the issue as to whether they actually had true CFS.
So any statements on body activity at this point should not be under treatment. I think this is where I made my mistake in the earlier post. But such statements should be under lifestyle adjustments.
I think the difference also, from what I understand of the UK promoted GET, is that you push past the point of fatigue, which is absolutely not what I am saying at all. I am saying opposite. Pace to stay within the "envelope." And don't push to point of feeling fatigue. But your point that even that has not been proven to have an effect is well taken. Just as one could say it is the body activity that makes for improvement. Another could say it is the rest periods in between that actually makes for some improvement.
And even if there is improvment. There would have to be study of some people not doing any body activity and others doing regular exercise as a healthy person does to see how those who pace and increase within their envelope do in order to show it causes improvement beyond either of the other two options.
I saw the GP training video where the woman said the patient needs to push beyond the fatigue to see that their symptoms are not caused by the exercise. This is what we have to fight.
Whereas it would be nice to just not mention body activity, we have to because of such misinformation. So maybe under a lifestyle adjustments it could mention activity, however small in the beginning, to prevent atrophy, but not push and include periods of rest. So take the earlier recommendations of what could be in such literature and put it under lifestyle adjustments instead of under how to improve or treatment.
I think the push through fatigue message is much stronger in UK than here.
Sorry if this is not well-thought out post. I am not at my best.
In the end, you guys were right and I spoke beyond what the science shows or I put the comments in the wrong category.
Tina