Discussion in 'General ME/CFS News' started by Sasha, Aug 14, 2013.
Thanks for the notes everyone.
I agree that it was full of news and organized but, as a patient with cognitive issues, it was almost impossible to follow. They spoke so fast. By the time they were on their fifth sentence, I was still trying to figure out the first. I'm sure I'm not the only one with this issue. It is much easier for me to follow when #1 someone speaks at a slower pace and #2 I have a visual of their face.
I guess it's definitely better than not having at all.
Did you also hear him say that they found an "allergy aspect" as a dysfunction? I'm not sure what he means by that?
I was asked to put my notes up for this here - ask and I shall deliver: afraid I stopped note taking at the QandA but I can get that down in the morning if required!
Hornig and Lipkins search for pathogens and potential biomarkers: simply put they found little evidence of active infections in 281 patients with ME agaisnt 201 controls (and they did quite a large number of commonly discussed ones in ME/CFS) - believe in 85% they found retroviral sequences but it was made very clear that they do not know whether these are important to ongoing disease and made a comment that they believe this will not be significant, however they found a few interesting leads signalling immune activation.
These include: in Plasma
in patients with less than 3 years of disease, increased Eosinophil in blood - allergy aspect?
differences in cytokines/chemokines:
decreases in IL17, 2, 8 and TNF
increases in leptin and serpin
less than 3 years specifically: frequent elevation in cytokine IL17 compared to those after 3 years where it appears to then become deficient
very different pattern:
patients elevated IL10, IL 13 (TH2) and 4 generally regarded at TH1
only difference between classic cfs patients those who go on to develop other diseases later (such as lymphoma) was FGH beta increased in those who developed lymphoma.
Fundamentally, after approximately 3 years the profile seems to change quite substantially with regard to this ongoing immune response at least in terms of biomarkers, obviously this work is ongoing but it would be a very interesting part of the disease.
They concluded that they believe the problems could lie in the gut microbiome and it is still their theory that an infection is at the root, they are collecting and looking at fecal samples with regards to the microbiome hypothesis - from a personal view I don't believe the answer lies here but you never know.
You are absolutely right that an application from Lipkin, especially with cohort samples in hand, should be successful. I wonder if he has submitted an application? The next CFS SEP meeting to score grant proposals is next week.
This is separate from the definition issue, to an extent. My point is only that a broken definition (Fukuda) is a significant barrier to quality research. A better/clearer definition with wide support would promote better research. But the advocacy efforts to get a definition are in a separate stream from efforts to get more funding.
I was a bit surprised by Dr. Unger's characterization of Dr. Snell's support for the one day exercise protocol in the multisite study. I reached out to Dr. Snell and got a swift response. Check it out here:
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.
sounds promising for the people newly diagnosed but not the people who have been very sick for decades. this moves at a snail's pace.
I would be impressed by the presentation from Dr. Unger were it not for the fact that I saw her lie twice at CFSAC meetings, and that was without even seeing everything she said. So when she lays out some very nice-sounding stuff, I also know that it's probably laced with CDC-speak.
I really don't know what to do about any of this. I no longer have the focus to take as much action as I used to. But I felt the need to do something, and so I sent an email to Dr. Snell. I'm thinking of sending something similar to Dr. Unger, but I don't see the point.
Here is my email to Dr. Snell.
Her stated logic is horribly flawed. Most definitions of "severely affected" patients are home-bound and bed-bound. I fall very solidly into that demographic and feel reasonably qualified to speak on the subject. I couldn't possibly travel for such a test and she's worried about an additional night in a hotel and the second day of testing? I also couldn't perform even a one day test if it were conducted in my bedroom. I think I can speak for most of the home-bound and bed-bound on this point - otherwise we wouldn't be stuck in our houses and beds.
So the tradeoff is testing marginally more patients with an "easier" test vs. the fairly standardized and more studied two day challenge which is significantly more meaningful in M.E. I would argue that the sickest of the sick can't even do a one day test and therefore we need to collect the best data possible data on the patients who can ride the bike via the two day challenge.
We need to study the severely ill patients. Blood and other sample collections should absolutely be made.
I'm concerned that pressure to study this important demographic may have resulted in this misguided approach to an exercise challenge, however.
I hear your concerns, but once Conie explains it it all makes sense for CFS I wish the people who has done the one day test with her remember more than me and explain here so people can feel at more ease. Results Do show and Very fast.
The test was so low key (less effort than when I go up a flight of stairs) that if you worry, just exercise a bit the day before so you get the worse case for yourself!!!
Argh... I fell asleep half an hour before the event, and missed the whole thing... it sounds even more interesting than I anticipated. With hindsight, it would have been a good idea to have recorded it. Thanku to everyone for all the notes posted.
I've had other cytokines tested but not those ones, except TNF and mine was pretty high. I'm kind of hoping someone with half a brain does some good research on these different markers, what has been reported in ME/CFS before and speculate on what it might all mean.
I enjoyed some of what Lipkin said. He has told us more than once that we need to apply political pressure. He was also very open about saying he only has 10% of the money he needs for the bowel tests, and that he considers these among the most important tests. I wish we knew, though, how much more he needs.
But nothing really new, except for the differentiation between ME/CFS patients who have been sick for less than three years versus more than three years.
All interesting, hopefully it buts a giant spark under other researchers to find answers before lipkin etc hopefully this has started a race??
I've only got 2 data points 9 months apart, and I have to agree that some cytokines changed substantially during that time period. However, cytokines that have been consistently low or very low (and got lower over 9 months) are the Th-17-related ones -- IL-17 and IL-23 -- which is consistent with Dr Lipkin's observation. My IL-2 was normal on the 1st test and low on the 2nd. My IL-8 is consistently normal.
My daughter has only 1 cytokines result from a year ago. Her IL-17 was also very low. Her IL-2 was normal. Her IL-8, rather than low as Dr Lipkin observed, was very high. Her results for this year's tests are do soon. It will be interesting to see if they've changed.
FWIW, we also consistently have high or very IL-1beta, which Dr Lipkin didn't mention. Anyone else have this? Know what it means?
I wonder if the cytokine abnormalities Dr Lipkin observed (that might be biomarkers) will be found to be a group biomarker (you have to have all of say, 3 cytokine abnormalities), or if it will turn out that any of several abnormalities would be characteristic of ME/CFS.
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.
I agree that this could be less of an issue than is thought. but to fix this historical problem, they'd have to cut some other disease, which would be awkward. There is a case to be made for re-allocating among existing projects based on disease burden, but they don't have our QALYs down right.
I also think is it not a very large percentage of a federal budget to just add new funding for us (seriously, 12 million is nothing in a federal budget and would make a real difference, although it should be $150 million or more)
With a one day test how do they determine that the lower function is not simply due to deconditioning?
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).
I don't know the technical details, but I was told our "lower function" is of a completely different type from that of people who are just deconditioned.
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