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Sept 10: CDC 'conference call' including Unger and Lipkin

Nielk

Senior Member
Messages
6,970
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.

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.
 

Legendrew

Senior Member
Messages
541
Location
UK
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?
General group:
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

Spinal fluid:
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.

Enjoy!
 

jspotila

Senior Member
Messages
1,099
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.

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.
 

Seven7

Seven
Messages
3,444
Location
USA
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.
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
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.

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,
 

Otis

Señor Mumbler
Messages
1,117
Location
USA
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.

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.

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?

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.
 

Seven7

Seven
Messages
3,444
Location
USA
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!!!
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
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.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
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.

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.
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
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.
 

SOC

Senior Member
Messages
7,849
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.

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.

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.
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.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
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 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)
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
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.

With a one day test how do they determine that the lower function is not simply due to deconditioning?
 

jspotila

Senior Member
Messages
1,099
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).
 

SOC

Senior Member
Messages
7,849
With a one day test how do they determine that the lower function is not simply due to deconditioning?

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.