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Pacific Fatigue Lab disability testing

helen41

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The most dramatic number is my workload in watts at AT: it was 42 on Day 1 and 16 on Day 2. That's a 62% drop.
Aside from being sore and crashy, you must feel so validated! My workload was 60, then dropped to 41 on day 2, about the same as you on your best day. I presume you will have some very strong evidence to support your case now. Take care
 

*GG*

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The summary of my tests are:

"Test 1 was a steady -state test for 14min at a constant workload of 25 watts (W). Test 2 was a maximum exercise test that began at 25W and increased 25 W/stage to a maximum workload of 225 W, after which GG could no longer continue due to fatigue. Exercise duation was 18 min for test 2. VO2max for test 2 was low in comparison to both age-matched active and sedentary males. Exercise ECG was normal during both tests. Immediate post-test ECG was normal."

GG

PS My testing was done on the East Coast, so not sure how easy it is to compare to others? I tried to look for comparisons to Urban travels, but having trouble figuring this out!
 

urbantravels

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OK, some more on my preliminary results.

For reference, you can look at Ann Cavan's "Lannie" blog post where she discusses her preliminary results - the little chart that Staci gives you at the end of the testing to give you a "snapshot" before they do the heavy number-crunching and generate the full reports. I have the same little chart for my results, and I've also been trying to look up background info about what some of these numbers mean.

http://lannieinthelymelight.blogspot.com/2010/11/part-3-stevens-protocol.html


First section - Peak Values
1. Watts - Total workload expended over the entire test. The goal is to have you get to the same workload on both days. I didn't quite make it, but I got pretty close (and was reassured that the main thing was maximal effort...I definitely gave my all, especially on Day 2.)
Day 1: 102
Day 2: 96

2. VO2 Peak Value - aka VO2 Max, maximal oxygen consumption, a measure of fitness and your body's capacity to use oxygen to generate energy.
The average VO2 max for a woman my age would be 31-33; below 22 is considered "very poor."
Day 1: 17.2
Day 2: 15.4 (decline of 10%)

3. Respiratory Quotient (I believe anncavan made an error calling it "response quotient" in her blog) - This is the ratio of CO2 eliminated to oxygen absorbed. Any number above 1 means you are in anerobic metabolism.
Day 1: 1.28
Day 2: 1.49 (increase of 16%)
Staci said of that second number "You were hurting me there - that's why I kept asking you if you wanted to stop the test." I got the same explanation as others have about how this shows lactic acid buildup and demonstrates a very high tolerance for pain.

4. HR - Peak heart rate
Day 1: 167
Day 2: data missing (they had problems with the heart rate data on day 2 and will have to manually get the numbers off the EKG for my final report.)
I don't know the significance of this one; not sure what it should have been for a healthy subject.

5. VE - I don't remember what this one is.
Day 1: 62.3
Day 2: 57 (9% decline)

6. RR - Respiratory rate, or breaths per minute.
Day 1: 30
Day 2: 32

7. SBP - I believe this must be peak systolic blood pressure
Day 1: 178
Day 2: 161 (10% decline)

Second section - AT (anerobic threshold) Values
Staci kept saying during both tests - "What a beautiful graph! Look at that nice break." She showed me printouts of the graphs afterward (but I didn't get to keep them). Basically there is a line of data points that goes up at a constant angle until it gets to a certain point and then veers way up in a steep curve. At that point there is a line that says "AT." The "break" she kept talking about during the test is my AT, which showed up so clearly on the graph.

8. Watts of workload at AT
Day 1: 42
Day 2: 16 (62% decline)
This is the number that really made my eyes pop out. I had heard that any variation of more than 8% was abnormal and that CFS patients were often getting declines of 30 or 40 percent, sometimes as much as 50 percent. 62 percent seems huge. I'm not sure exactly how many minutes into the test I reached 16 watts of work, but I think Staci said it was within the first two minutes. So I was in anerobic metabolism for the whole rest of the test. May I just say OW OW OW.

9. Vo2 at AT
Day 1: 8.7
Day 2: 7.3 (16% decline)
This is the other really magic number for disability purposes, because it demonstrates functional impairment. At 8.7 on Day 1 the number already showed "moderate to severe" impairment - 7.3 is well into "severe" (any number below 8 is "severe.")

10. Heart Rate at AT
Day 1: 117
Day 2: 108 (8% decline)
This is the number to know for pacing with a heart rate monitor. I've already been doing this for several months and it's been enormously helpful. I've been using 108 as my limit just as a guesstimate: and check it out, 108 is my AT in the post exertional state. Staci said that this means I should use 108 as my limit on bad days but on good days I could go up to the higher number, 117.

11. VE at AT
Day 1: 19.8
Day 2: 16.4 (17% decline)

12. SBP - Systolic blood pressure at AT
Day 1: 156
Day 2: 144 (8% decline)
 

urbantravels

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A few other random notes on my testing -I'm trying to take things slow today - although really, this is far from the worst PEM I've ever had. Not sure why I don't feel worse - maybe because I was SO careful in managing my energy both before and after the test, and because over the last few months I've already been pacing with a heart rate monitor and mostly avoiding major crashes? I think some of my worst episodes of PEM have come about because of several cumulative days or even weeks of over-exertion.

They didn't do the response time test at the start to establish a baseline - only at the end. It appears to me that they're not focusing much on the response time test at all; I kind of got the feeling they might be phasing it out or trying to come up with something better.

They didn't take my temperature after the tests, only before. I was wondering about that since one of my major symptoms is a feeling of extreme cold in my muscles - chills, but not the shivery kind. So I was curious to see if my body temperature dropped after the tests. Didn't think to ask about this.

Staci was very excited about this paper and gave both me and my dad a copy (of course we got a sheaf of other papers, but Staci popped out of her office as though this was brand new; I think she had just gotten the new PDF or something)

http://www.iacfsme.org/BULLETINFALL2010/Fall2010StevensDavenportCaseReport/tabid/446/Default.aspx

I've seen this paper before (and I think it's been discussed around here?) but now I think I will look at it much more carefully in terms of discussing next steps with my physical therapist. And I need to go back and read the thread about the "Stevens Protocol" exercise plan.

Everyone at the lab was super nice; I think I said that already. It really is a small place and they clearly operate on a shoestring. But they have gotten some new equipment - some of their computer stuff was new (hence Staci being so excited about my "beautiful graphs" - I don't really get credit for them except for having provided the raw data!) It seems they are doing as many disability evaluations as they can handle - they can only schedule 2 per week and they spend the rest of the time generating the reports and doing the research.

I was very glad to get an answer from Staci about a question I had about taking beta-blockers. I used to take them for my borderline high blood pressure but my doctor discontinued blood pressure meds when I got sick with CFS, on the off chance that any of them might increase fatigue. I still had beta blockers around the house and tried taking them once or twice on days when my HR was just crazy through the roof, and my heart rate went down. So I asked Staci if this was really beneficial or just "masking" symptomh. She said the beta blockers would "blunt" my heart rate response but not do anything to decrease PEM, in fact they would deprive me of the feedback I get from using the HRM. On those days that my heart rate is chronically elevated, that just means I need to lie low and recover some more - no free pass from taking a beta-blocker. That's kind of what I thought but it was good to have that confirmed.

I just have to give all the props and kudos and loving thanks in the world to my dad, who not only paid for the whole thing - testing, travel, the works - but flew out from North Carolina to LA to accompany me to Stockton, carried all my bags, brought me food in the hotel room, etc. etc. I can't imagine trying to go out there and do this on my own.

The University of the Pacific campus is really nice - we got there early on both days and looked around the campus a bit, and I zoned out on the patio of the student center during the few hours of sunshine that happened that day. I wish we had stayed somewhere in Stockton, which is a more interesting little town than I had expected - my opinion of the Central Valley being generally based on very bleak visits to Fresno and Selma (when i was married my in-laws were there). We stayed a few exits down the freeway instead, in Lathrop, which is apparently nothing but some offramps and the usual offramp businesses. I sure don't like the Central Valley winter weather, with the cold tule fog, and something in the air kept making me cough and hack. (Ironic enough, since I live in LA! But I live near enough the ocean that I have good air in my neighborhood. And there's tons of dust and fungus and agricultural chemicals and heck knows what in the Central Valley.

Can't think of what else, so ask if you have questions! I sure do want to spread the word about the PFL and the work they're doing.
 
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I thought the people at the lab were very supportive and helpful. Sounds like you had the same experience.

I also expected the worst ever PEM. It was bad enough, and the noise sensitivity persisted, but not the worst PEM I've ever had. Maybe because of all the rest, and I followed their recommendation and carbed up a lot more than i would at home.

The test results sure show where the problems are. There is a lot of data on activities that use "METS" - or energy referenced to rest. Short version - divide VO2 @ AT by 3.5. So after the second day, you were at 2.1 METS. Very many activities of daily living require 3 METS. Are you able to grocery shop or do laundry?

Well, you knew there was a problem - it's just nice to have some test data that show it. Hope your PEM doesn't last too long.

I've given myself permission to rest more. The other day after massage therapy, I was really getting tired and didn't feel well. Instead of walking home, I waited at the library (just down the street) and my wife picked my up when she got off work. Before .. I'd have figured that I should push thru it and walk home.
 

urbantravels

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Well, the PEM seems to be getting worse this evening - but it's more the tired and sore PEM than the kind where you feel just deathly ill. I've taken long naps two days in a row now, which is almost unheard of for me....and I pretty much have the attention span of a gnat right now.

I do manage most of my daily living stuff on my own - with the exception of cleaning my apartment; I did have to hire a cleaning company because I just can't do a thorough scrubbing. Laundry and dishes (I don't have a dishwasher, alas) I really really carefully pace myself with. Groceries I mostly do in very short runs for a bag or two at a time - the urban single-girl method. I can drive short distances around town, but long drives are very fatiguing. So I'm just sort of on the cusp of being able to live independently, as long as I stay within some pretty restrictive limits.

As I said I've had some improvement already by wearing a heart rate monitor and getting more serious about pacing myself and breaking activity up into very small/short chunks. If I had tried to take this test last summer or fall, I believe I would have done even worse, because I was in a constant rolling state of crash where I couldn't quite come back even from normal chores that eventually had to be done.
 

urbantravels

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Wowee...major, major PEM today, Day 5 (counting the first testing day as day 1.) Can't do much but lie around and stare at videos: when I stand up my heart rate goes up as high as 130. And I've got to take back everything I've ever said about not having brain fog - right now I can barely keep track of typing a sentence.

I guess I'm not usually aware of this much delayed reaction in starting a bad PEM - but then I'm not always aware of exactly what I did to set one off. This time I can really pinpoint the damaging activity - but was it Test 1 or Test 2 that did most of the damage? I will find all this very interesting when my brain again becomes capable of analytical thought.
 

Francelle

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This is such an interesting thread Helen41 and Urbantravels. I also read AnnCavans blog (I think it was) about her assessment at the PFL which piqued my interest in this topic initially.

Altho' I haven't yet got an HRM I fished out my O2 sats monitor the other day from a cupboard, which has heart rate reading capability as well, so have been doing spot checks. It's a little awkward as it is around the finger but it's giving me an idea of what is happening. I have learnt such a lot about the relationship between the objective readings and what I am subjectively feeling.

While doing this somewhat 'primitive' monitoring I have become more aware that some days my HR spikes much more quickly with minimal effort and this corresponds with those days of feeling like the centre of my chest or the core of my being is dropping out of me. Altho' I haven't yet elicited what my AT is, I am resting more when I see a big HR spike. When I did this religiously one day, the next day was a good day.

Anyway thanks again for sharing all that you have experienced and learnt through this process. It is invaluable!
 

floydguy

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Thanks for taking the time to do this UT. I hope that they are able to expand on their work and that PEM becomes easier to document.
 

Francelle

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Just to follow-up on my previous post regarding HRMonitoring - I ordered my HRM last week on Thursday am and it arrived by courier from interstate even before I was out of bed on Friday morning!

So I have been wearing it for one week now and can't believe how the most minimal effort causes the HR to go up. Just to walk to the kitchen sometimes it goes up to 120 or 130. I have it set at 105. Just an arbitary guess but interestingly I often look down just before it goes off because I feel palpitations.

Is an elevated HR a common feature of M.E/CFS/FMS? Can someone explain the physiology behind this?
 
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Is an elevated HR a common feature of M.E/CFS/FMS? Can someone explain the physiology behind this?
Yes, very common. The numbers I have seen said that 80% of PWC have orthostatic intolerance in some form. One common form is POTS, which refers to an increase in HR by 30 bpm or more when going from supine to standing. There are many factors that can contribute to this. I recommend watching Dr. Rowe's excellent webinar on orthostatic intolerance for more info (he goes into the physiology): http://www.youtube.com/watch?v=5iF30TVLaRE
 
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Your PFL Lab Results

I went to the Fatigue Lab at the University of the Pacific to have my PEM measured to help support my disability appeal. I'm hopeful now, the first time in a long time. Here is the journal of my visit if anyone is interested in taking the same approach.
Pacific Fatigue Lab trip

Fri
Flew out of Vancouver early in the morning, and arrived in Stockton, Cal around 1pm. I layed around in the hotel resting up for Mon. I'm excited.

Sat
I slept about 11 hours- quite a few awakenings, but only for a few minutes at a time. I thought maybe I got away with yesterday and the sleep was enuf, but by 11 am both my thighs have charlie horses that won't ease up and I'm too tired.

Sun
Yesterday was brutal. Turns out the room service is discontinued, but luckily I bought some fruit at the station because by late in the day I could hardly stand up, let alone go out for dinner. My toilet had a leak and they had to change my room. My brain wouldn't work, I couldn't figure out how to use the room key even tho I've done it hundreds of times. A housekeeper came by and let me in. I burst into tears and she took care of the move for me while I sniveled.
Awake many times in the night. Today I'm not as sore as I was, hopefully I'm getting over the hump.

Mon
1st day of testing.I was asked if I minded an audience, which of course I didn't, so an internist and an exercise physiology grad student observed. They did a reaction time test, then measured my lung and even nostril capacities. I was hooked up to an ECG and had a mask put on my face to measure the oxygen and CO2 output. A thermometer went on a finger and a blood pressure cuff on an arm. Finally I went on the exercise bike. I pedalled until there was nothing left in me, while the team monitored the various readings.They then assisted a very wobbly me to lay down and monitored me until I recovered.

I returned to the hotel with an appt to return the next day for repeat testing. As was my usual, I actually didn't feel too bad the next morning, and was nervous that the tests wouldn't show anything. It is standard for me to crash 2 days after exertion. I didn't need to worry.

Tues
I was hooked up to all the same paraphenalia, went back on the exercise bike and again pedalled madly until I couldn't continue while they monitored me. At one point Dr Stevens pointed at the monitor and said "It's here" and the 2 observers seemed quite enthralled by what they were seeing. At the end they again measured my nostrils and had me do the same reaction time tests that preceded the tests the day before. Meanwhile, the 2 doctors excused themselves to run some preliminary results. Other than that one statement it seemed to me like I performed about the same both days.

Preliminary Results
Dr Stevens said my results were like an "early Christmas present" for her, and everyone seemed very interested, as the results go against conventional wisdom. As I understand it, there is a certain point in exercise where you move from aerobic to anaerobic work. They can measure that based on some formula and the measures of breath. This is an accepted, objective measure. In normal people and in every other disease they have tested, this set point remains pretty much the same one day to the next or improves as people get more fit. A 7% change is considered the outside parameter.

In my case my first test had me within normal limits for a sedentary person. The second day there was a 32% change, meaning I was burning energy with much less exertion than the day before. She said they would predict it would be even less the next day based on my experiences. They will write a report saying I cannot work because altho I can rise to an occasion, I cannot sustain exertion, and apparently they write the report based on calories used in a days work, my weight, age, etc.

Another measure they did was CO2, which is related to lactic acid production, an acid released when muscles are being overworked or damaged. They use this measure to monitor the training in elite athletes. Apparently I give off a lot of CO2 even at rest, which I presume is related to my cramping legs. Dr Stevens told me their measures indicate I actually have a very high pain tolerance, which was so validating to hear when I feel like I spend all my time winging and complaining.

I am to wear a heart monitor and avoid a heart rate of more than 113, as that is the point where I start doing muscle damage. I need to use only aerobic energy, never anaerobic.

The cost of the testing was $2000. At this point I am awaiting my final appeal with my insurance company before I have to go the court route. I think this was the best money I could have spent. It doesn't treat my illness, but it does prove it is real, and the testing is rigorous, with accepted tests that are commonly used for disability claims, but they are simply repeated to show a more complete picture. The outputs are objectively measured, so LTD can't claim I just didn't try or manipulated the results.

Hope this helps explain for anyone who is considering this route
Hi Helen,

I really appreciate your detailed account of the Pacific Laboratory testing protocol. Since I am considering the same test for my LTD case, I wonder if you could post your results (without, of course, your personal details).

Have you read any of Dr. Sherry Rogers' books? She has about a dozen or so that are mandatory reading for people like us. She believes in detoxifying through diet and far infrared sauna therapy. I can speak favorably for the FIR sauna protocol.

Thanks, and best wishes to you.

Brian Dawson
 

fla

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Does this extreme testing cause any long term drop in our health level? I've noticed in the past a drop in my health after exertion that took me out of my envelope. I would like to know what heart rate starts triggering damage for me though and this test gives that number.
 

urbantravels

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I did not have any long term ill effects from the PFL testing. I had a fairly severe PEM that lasted much longer than usual - at its worst for about five days (my usual PEM is about 2-3 days,) and it took a couple weeks to taper off completely. Strangely, it was somewhat delayed onset - it didn't really fully hit me until three days after the test (that is, the second day of the test.)

Since I had the PFL testing in January, I have recently had a tilt table test and been diagnosed with severe POTS. I had a somewhat similar reaction after the tilt table - PEM setting in about 3 days after the test. Not as bad as after the PFL test, but definitely a PEM. You wouldn't think so, since for a tilt table test you are strapped down and not moving, but I had an elevated heart rate and was breathing very heavily throughout the test, and I felt muscle soreness in my chest during the PEM, presumably from all that hard breathing for half an hour, maybe even from my heart having such an extreme workout.


I think when it's a one-time thing and you are able to totally give yourself over to resting and recovering after such a test, the odds are better that you'll return to baseline with no extended ill effects.

The PFL testing is a lot to go through in terms of exertion, PEM, time, money and travel just to get a target heart rate number. I found I had guesstimated my number very accurately before I had the test, and the test only confirmed that. I really wouldn't go through the effort unless you have a disability case to prove.
 

RustyJ

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Hi urbantravels, I have noted delayed onset of fatigue. I think some sort of adrenal reaction may play a role. I work part-time cleaning homes. The only way I can do it is to stress myself by worrying about whether I am doing a good enough job or worrying about whether I will finish on time. The moment I relax, I slip into fatigue and OI. Obviously this only works for a short time. When I get home I am usually bed-bound till I have to work again.

When you did the testing perhaps your system got excited (adrenaline) and this was maintained for several days. When this effect wore off, fatigue set in.

This may also be part of the reason why a lot of people do well initially on a new medication regime, only to regress after a while.

If this is happening, the adrenaline thing that is, then it would confuse the results of many studies.
 

urbantravels

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I am extremely grieved to report that there is at least one SSDI judge in Los Angeles who seems to have no idea how to read a Pacific Fatigue Lab report, and does not seem to think it shows anything particular about my level of impairment.

I have now been rejected at the appeals stage. DAMMIT, this should not be this hard. Not in this day and age. I had a positive tilt table in addition to PFL test showing severe impairment. But I guess it doesn't matter.
 

Kati

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So very sorry Urban Travels. I think this would deserve to be shared with CFSAC, and see if they can pull strings for you.
Perhaps write to Dr Snell too.

I find that doctors do not want to take the time to understand how the testing works and why it identifies sick people from deconditioned sedentary control.

I too have an abnormal VO2 max test, I was told the second day test would be harmful and it was best to not be done. n fact I was already anaerobic before starting the test on day 1. Still cut off from insurance.
 

jimells

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urbantravels,

You're right, unbelievable. How could they reject your claim with that kind of objective medical evidence. What stage was this, the administrative law judge? If so, my understanding is that the next step is federal court, uggh. Some of these disability deniers would see nothing wrong if we keeled over with a heart attack right in front of them. It's a truly evil system.

Reading about your dad flying all the way across the country to help you with the test brought tears to my eyes. I'm glad you have that kind of support from your family.

I'm waiting for a hearing before the ALJ. I've been told it will be another year. But I have no good evidence at this point, so the delay is probably a good thing.

I'm limited to doctors in Maine, since I'm on Medicaid. After reading about the exercise tests, I wonder if there is someone, somewhere in the country who could analyze test results and write a fatigue report, based on some minimum set of stress tests done two days in a row. If such a report could be had for a few hundred dollars, I could probably scrape that up if I had to sit on Market Square with a tin cup and a sign. Anybody ever heard of such a thing?
 

Valentijn

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I am extremely grieved to report that there is at least one SSDI judge in Los Angeles who seems to have no idea how to read a Pacific Fatigue Lab report, and does not seem to think it shows anything particular about my level of impairment.
Most judges know absolutely nothing about anything other than the law. They rely on the parties to bring in reputable experts to tell them what to do, then decide which of the experts they believe. They want someone with the credentials to come in and translate medical results into something they can understand. I'm not sure if a report from a doctor would suffice, without someone qualified to explain it in a disability context.