Esther12
Senior Member
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Thanks for the notes everyone.
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The entire 1 hour of the call was highly organized and information packed. It was better than any hour of a CFSAC meeting by far.
That's good you're on the case, Jennie!
Bit Lipkin already has his cohort - he just needs the money. Isn't the NIH always claiming they don't have enough high-quality studies to spend the money on? I don't think they're likely to turn Lipkin down on that basis. It seems well worth someone working with him on this - he must have all sorts of insights into how this could be done.
I think this is a separate issue to the definition issue.
Dear Dr. Snell,
Today I listened to the telephone conference hosted by the CDC. According to Dr. Unger, the physical response stress testing will be a 1-day test instead of a 2-day test. She added that you prefer two but you also think that one day will be of some value.
This greatly concerns me, considering that available information indicates that ME/CFS patients do not show differentiation until the second day. If the people at these research sites go along with this, it will result in one more study that overlooks where the problem really is. Furthermore, it will also carry the prestige of being a multi-site study conducted by ME/CFS experts, thus giving it more weight to discredit the illness.
The justifications offered by Dr. Unger are inadequate. The difficulty of the extra strain this puts on patients does not outweigh the fact that this will skew the data so much as to be misleading. This problem has not only been demonstrated by your Pacific Labs research, but also by the gene expression studies by Light and Light at the University of Utah.
Because you are on speaking terms with the other researchers, perhaps you could ask them to apply needed pressure to change the nature of this part of the test. It really needs to be two days, or not at all. Or perhaps everyone could break the sample into two matched sets, with one set doing two days and the other doing one. That would make it easier to find subjects who can stay for two days.
Sincerely,
She did mention that she has gotten several letters concerning the 1-day vs. 2-day exercise challenge coming up in Phase II of their multi-site study. She explained some reasons for choosing the 1-day study including the fact that it would be likely that severe ME/CFS patients would not be able to participate in day-2. I think that it is a valid concern and one that I did not take into consideration. She also consulted others about this. Of course, Dr. Snell prefers the 2-day but he does think the 1-day will provide good info.
She is also looking at protocols to include the housebound patient. I believe that is new, and if memory serves, there may have been pressure from the patient population to include such a group?
OK for those of us having cytokines profiles for a few years. The cytokine profile changes per time of the day and exercising can change the markers. I remember I think it was Montoya or a CFS specialist saying that the profiles were so sentisitive because they got altered so much in cfs. Mine has been different everytime. What I have high one time is not the same the next time, so this generalization picture in time worries me. Also I have never had IL17 low or high has always been normal and I thought that was the Leaky gut sub-group (high IL17 and IL23). But I am not expert.
2) I have had the one day exercise test by Connie and I was in my best day and I have to report that I was very satisfied by it, simple bike and before I felt the bad feeling she stop me and got my AT. I think anybody that can sit and balance in 90 degree can do it. (maybe they will use recubent ones, mine was not). Just for reference my AT was 115.
OK for those of us having cytokines profiles for a few years. The cytokine profile changes per time of the day and exercising can change the markers. I remember I think it was Montoya or a CFS specialist saying that the profiles were so sentisitive because they got altered so much in cfs. Mine has been different everytime. What I have high one time is not the same the next time, so this generalization picture in time worries me. Also I have never had IL17 low or high has always been normal and I thought that was the Leaky gut sub-group (high IL17 and IL23). But I am not expert.
Me, too. Easy peasy test. My AT was 124 -- low for healthies, but on the higher side for PWME. PS: I was housebound at the time.2) I have had the one day exercise test by Connie and I was in my best day and I have to report that I was very satisfied by it, simple bike and before I felt the bad feeling she stop me and got my AT. I think anybody that can sit and balance in 90 degree can do it. (maybe they will use recubent ones, mine was not). Just for reference my AT was 115.
I think sequestration (funding cuts in the NIH budget) are a red herring. If ME got its due share of the current smaller general fund, we'd have a huge increase and everyone else would go down a tiny bit to compensate. Better to have our fair share of a smaller pot than a tiny unfair share of a previously bigger pot.
I have had the one day exercise test by Connie and I was in my best day and I have to report that I was very satisfied by it, simple bike and before I felt the bad feeling she stop me and got my AT. I think anybody that can sit and balance in 90 degree can do it. (maybe they will use recubent ones, mine was not). Just for reference my AT was 115.
Some people can be differentiated on one day alone, particularly with a blunted heart rate response. But my results did not get dramatic until day two - and then it was astounding (to me, anyway).With a one day test how do they determine that the lower function is not simply due to deconditioning?
With a one day test how do they determine that the lower function is not simply due to deconditioning?