Article: Lannie at the Pacific Fatigue Lab: Part III - The Test Results!

You can view the page at http://www.forums.aboutmecfs.org/content.php?271-Lannie-at-the-Pacific-Fatigue-Lab-Part-III-The-Test-Results

 

Honestly I start to tear up when I read this.....that burning lactic acid feeling - I feel that almost all the time. THIS is CFS and for the life of me I cannot understand why this research hasn't turned the research world upside down. I love XMRV but -the repeat exercise tests - they were the XMRV for me..they really fit things together for me.

How long ago did they do their paper? Five years?.....Just imagine if these tests had been given a 20th of the attention XMRV has garnerd - and this is not to put down XMRV - this is to cry, really about the shoddy attention given to CFS. The Stevens Protocol is revolutionary - it demonstrates problems that Staci says have never been seen in disease before - and they CFS to a T.......and yet there are no teams at the NIH pouring over this to figure out what's going on. Staci laughed when I asked if the CDC had called about their findings.....and then the NIH turned them down for a grant. The pain.....

This is great stuff. A recent paper did validated the Pacific Fatigue Lab's results and researchers in the CFS field are using exercise tests all the time now. I'll have a report on that paper soon.

Thanks so much Lannie!

 

These results are striking confirmation of the reality of your condition.

There is a measure which has been useful to me which I don't see mentioned, except in terms of the time spent in fetal position afterward. (Been there, done that.) Did anyone monitor the time it took your heart rate to recover to that day's baseline heart rate? A fingertip reading of O2 saturation in peripheral blood would also be interesting.

For me, at least, these are very sensitive indicators of how long the backwash from exercise will affect me. The longer they stay away from baseline readings, the longer my perceived hangover from an effort will extend. The first times are measured in minutes, the latter in days.

 

Just for a comparison, my AT results are here
test1 test2 %change
W 60 41 - 32
VO2 11.5 9.9 -14
HR 133 113 -15
VE 27 25 -7
SBP 156 172 10

% pred 59% 50
AT%act 67% 57%

VR=VE max/MVVx100
65% -100
I was put on LTD right away, back-dated a year, and your #s are a bit lower.

anciendaze, on my report they only recorded VE, RQ, vo2, HR + BP at 5 min post and 10 min post, not until recovery, although they did keep monitoring for what seemed like a long time

 

Hi Helen,

Going through the data just trying to compare. I see Lannie's Heart Rate at AT is:

"HR= Heart Rate at AT on day one was 100. On day two, post-exertion, my AT was only 87 "

What were yours if you don't mind me asking?

 

so sorry. When I initially wrote this, it all lined up as a graph, but I didn't check it again after posting. The first # is test one, then 2 , then the last is the % difference.
At my anaerobic threshold my HR was 133 during the first test and 113 during the second. I have been told to wear a HR monitor and to set it to alarm at 113.

I didn't post this, but my max HR was 165 during the 1st test, the 161 during the second.
hope this clarifies...
Also, I don't think it should be "post exertion". The AT is a measure found during exertion, when you move from one type of work to another, making you deplete your energy reserves, without the ability to regenerate.

 

These results are striking confirmation of the reality of your condition.

There is a measure which has been useful to me which I don't see mentioned, except in terms of the time spent in fetal position afterward. (Been there, done that.) Did anyone monitor the time it took your heart rate to recover to that day's baseline heart rate? A fingertip reading of O2 saturation in peripheral blood would also be interesting.

For me, at least, these are very sensitive indicators of how long the backwash from exercise will affect me. The longer they stay away from baseline readings, the longer my perceived hangover from an effort will extend. The first times are measured in minutes, the latter in days.

Great question. They were measuring these - HR and BP til recovery as well as the fingertip O2 saturation. I haven't received the full 10 page disability report. Assuming this will be in there? I'm not sure if everything they collect is provided in the report, or just the info to make the case for disability? As soon as I have the full report I'll scan and post.

 

so sorry. When I initially wrote this, it all lined up as a graph, but I didn't check it again after posting. The first # is test one, then 2 , then the last is the % difference.
At my anaerobic threshold my HR was 133 during the first test and 113 during the second. I have been told to wear a HR monitor and to set it to alarm at 113.

I didn't post this, but my max HR was 165 during the 1st test, the 161 during the second.
hope this clarifies...
Also, I don't think it should be "post exertion". The AT is a measure found during exertion, when you move from one type of work to another, making you deplete your energy reserves, without the ability to regenerate.

Hey Helen. I think it's interesting, hearing what others' AT is... It's significantly higher than mine, but something we all have to keep in mind is that everyone has a differnt resting heart rate too. For example mine is pretty low 58-60. So with an "AT alarm set" at 90, I still have a 30 beat wiggle room. Not great, but I'm sure it could be worse. I find there's always someone else out there who could beat me in this crowd

Also, great comment re post-exertion. The way I wrote it wasn't very clear. When I said: "HR= Heart Rate at AT on day one was 100. On day two, post-exertion, my AT was only 87 " I meant that day 2 was post-exertion. Meaning day two was the "recovery day" from day one. I wasn't meaning that AT = post-exertion. Hope that makes more sense, and I'll watch how I write it next time.

 

THIS is CFS and for the life of me I cannot understand why this research hasn't turned the research world upside down.

How long ago did they do their paper? Five years?

This is great stuff. A recent paper did validated the Pacific Fatigue Lab's results and researchers in the CFS field are using exercise tests all the time now. I'll have a report on that paper soon.

I also think this whole approach is fascinating and potentially revolutionary in the way it shows up the real differences in ME/CFS. But wasn't the original paper a bit light on numbers, I can't remember? Glad to hear there's finally validating research on the way. As you say, this would have been a prime candidate for investing research funding.

 

Thanks, Lannie for fascinating article. I'm heartened by the way the tests provides hard evidence of dysfunction to not only the neutral but also the highly sceptical (disability assessor) observer; convincing such doubters has always been the problem with this illness. Hope it sorts out any issues with your insurers.

 

Lannie,

Great reporting on your experience. I have more confidence in the whole process knowing that you thought you did so well on the testing and finding out that abnormalities were detected anyway.

How is the resting heart rate measured? Laying down or sitting? and for how long?

 

I also think this whole approach is fascinating and potentially revolutionary in the way it shows up the real differences in ME/CFS. But wasn't the original paper a bit light on numbers, I can't remember? Glad to hear there's finally validating research on the way. As you say, this would have been a prime candidate for investing research funding.

I don't know what happened. They thought they had a good paper and were surprised that it didn't make more waves outside of the CFS community. It certainly did INSIDE the CFS research community. I hope they will try to resubmit their grant under the new CFS SEP.

 

I had that test and did piss poor. Not through the Pacific Fatigue Lab, but it was the same kind of test.

Was told I should easily get disability, but I don't want to be disabled (even though I truly am). The results ranged from moderate to severe disability.

Now if I can only get the skeptics to believe that I do in fact have chronic Lyme disease, and that my tests aren't all false positives. Hopefully that's validated next, because it's real, disabling, and can probably be co-morbid with CFS in my opinion. It's just amazing to me that the mainstream "experts" on both CFS and Lyme could be so idiotic for 25 years+. They say history repeats itself. I guess that's true.

My cognitive dyfunction is my worst symptom. I am not a wuss and can handle being bed bound from post-exertional malaise. Now the cognitive stuff I can't handle, and the chest pains are worrisome. But guess what? That's getting 100x better with antimicrobial therapy and proper detoxification.

 

Very informative and easy to understand. Thanks Lannie.

Really glad to see this testing growing in acceptance by the SSA, regardless of ongoing political BS elsewhere. The results of this testing seems most reliable for ME/CFS biomarkers.

The only test I have done along these lines was the VO2 max without a follow up test the next day. I got a 69% of predicted.

 

But guess what? That's getting 100x better with antimicrobial therapy and proper detoxification.

@kday,
I'm sorry you've had such a tough time. But I'm happy to hear that antimicrobials and detox is helping for you though. Fingers crossed it continues improving. Oddly enough, I just started both an antimicrobial and detox program. What specifically are you taking?

 

This stuff is amazing, just amazing! Thanks for posting it, Lannie - it's great to know about for those of us who don't have access to such a test. It's criminal that this research isn't more widely known outside the community.

I have to say that the test really scares me, though. I'd be terrified of causing myself a permanent setback. You've mentioned that you're still not back to normal after two weeks. Does the lab do long-term follow-up on the people they test to make sure they're not permanently damaging their health?

 

Did Staci or anyone there give their ideas of why your (or anyone else's) ability to generate energy dropped so significantly the second day? Just what do they think occurs after you exercise that wipes out either the mitochondria or the ability to deliver oxygen to the tissues?

I forget, but will you get the nasal rhinometry (or whatever its called) results back?

 

Sasha, they stayed in touch with me for about 10 days after. You have to fill out a form that reports how you're doing the first 7 days and if you've recovered. And then they get in touch to remind you to fax it back. To your question regarding causing a permanent setback, that has to be a decision you make. I was confident I'd be fine in a week. I always figure I'll be fine in a week. But my recovery periods have gotten longer. I'm starting to feel normal again. So it probably took me 3.5 weeks.

 

Cort, we did discuss but frankly all I could remember were the big picture ideas. The discussion kept going back to the fact that they were exercise based scientists. They teach exercise physiology there. And they were leveraging the zone training that athletes use. It came down to the science of what your body does at AT. Once you go over AT, all bodies go into oxygen deprivation and production of lactic acid. The difference is how a healthy body vs. a PWC body handle those. When an athlete goes over AT, their workouts are deemed "less productive" as they're not working on endurance once into those high levels. They might "feel it" more the next day with sore muscles due to lactic acid production. When a PWC goes over AT, oxygen deprivation causes serious side effects and lactic acid production causes extreme pain.

Here's a pertinent snippet from: Davenport TE, Stevens SR, VanNess, MJ, Snell CR, Little T. Conceptual Model for Physical Therapist Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Physical Therapy. 2010; 90; 4; 1-13

“Evidence suggests that disruption of the aerobic energy system may be associated with a combination of genetic, cellular and systemic metabolic deficits. Investigators also have found evidence at the cellular level of mitochondrial dysfunction and impaired energy metabolism, oxidative damage to mitochondrial deoxyribonucleic acid, and poor recovery of adenosine triphosphate after exercise, which may be responsible for the observed deficits in repeated exercise test performances. These cellular and systemic impairments in the aerobic energy system lead to a reduced functional capacity that limits an individual’s ability to sustain and repeat functional activities.
Aerobic system impairments appear to be related to maladaptive sympathetic autonomic responses, perhaps in response to a triggering event, such as an injury or illness, in people with an apparent genetic predisposition. Over time, these maladaptive responses are suspected of causing dysregulation of the normal hypothalamus-pituitary axis and sympathetic autonomic responses and an overall reduction in tolerance for physical effort. Autonomic dysregulation is thought to be responsible for the orthostatic intolerance and abnormal heart rate responses to exercise exhibited by some people with CFS/ME.” p.4

 

Very nice! Thanks Ann