Pacific Fatigue Lab disability testing

[November Girl]

At one point, ALJ hearings had a physician present to interpret the test results. Is this no longer the case?

 

[missjanny]

My Pacific Fatigue Lab report + LTD

The fatigue testing was so, so worth it for me. I had been denied twice by disability and was waiting for a final review scheduled for next Feb. My last resort before court.
I submitted my Fatigue Lab results to the review panel who forwarded them to my insurance company. Today they called and have reversed themselves. I have been put on LTD retroactive a whole year! I was told that their medical expert reviewed the report and was "fastinated", plus they suggested I might want to consider seeing an endocrinologist as my results were unusual. (I held myself back from saying "told you so")
What a relief!

Im within 6 week of the end of my first two years of disability, and am waiting to see if I am extended beyond the two years for permanent disability. Im hoping and praying that the report from Pacific Fatigue Lab (which is clear scientific proof of the severity of my disability) will be enough evidence for them. Great West life wants to send me for a "Functional Assessment Test" which will be a waste of time as it does not show PEM or any of the statistics that the CPET report already showed. Anyway - keep your fingers crossed for me......as I approach the deadline I find my stress level increasing over the whole thing. However, your story Helen gives me hope!

 

[Kati]

Miss Janny I would be curious to know what their "functional assessment" entice. please ask questions. Will it be performed by a physio, will PEM be recorded? Will it be a standard test assessing grip strength and ability to carry 20 lbs across a hallway? i have done this within the first year of my disability- the conclusions from the physio was that I should be ble to return to work after an intensive 6 weeks of physio. They never asked the impact of that functional assessment on my life-I crashed for 3 month and had horrible generalized joint pain.

Ensure you have a dr apt within days after this assessment and make sure your dr records the symptoms you have. Make sure you hold a daily record of all of your symptoms. And if you can afford it, go to the Pacific Fatigue Lab. While it may not give you your disability, it will provide another point of view from the real experts in our disease.

good luck and let us know how it goes.

 

[eric_s]

Oof, Kati, the test you describe does not sound like something we should have to do. Unfortunately not doing it might lead to not getting any benefits, i guess...

What just came to my mind, after reading your suggestion to go see a doctor after the test, so that he can record the symptoms, was that it might also be good to do some testing before and after the physical challenge. I'm no doctor, so i can't tell you which ones, plus at this moment i'm not in very good shape because i just returned from town, but i can remember Dr. Peterson saying they do immune system tests before and after CPET. That sort of tests might be able to show an adverse reaction to the physical effort. Or a SPECT-Scan, i remember Dr. Komaroff showing an example of a person who had abnormal SPECT scans during a period of a couple days when he was going through a bad phase. But i guess SPECT scans will probably be harder to obtain and to do.

 

[Kati]

Thanks Eric, this test I was describing was done initially for my insurance claim. Hve been cut off after the 2myear mark, which is under appeal at the moment, and have just completed a neuro-psych assessment, which was scheduled on one full day. knowing this would be brutal on me, I managed to get the neuuro-psych to get it done over 3 consecutive week sessions (still brutal).

As for requesting testing before and after, I am at a lost, because here in Canada we get either positive or negative on viral testing, no titers and don't een get access to NK cell count or function. The best we can do is a trustee dr visit after testing and ensure they are aware of PENE (PEM), and that they document symptoms.

 

[missjanny]

Miss Janny I would be curious to know what their "functional assessment" entice. please ask questions. Will it be performed by a physio, will PEM be recorded? Will it be a standard test assessing grip strength and ability to carry 20 lbs across a hallway? i have done this within the first year of my disability- the conclusions from the physio was that I should be ble to return to work after an intensive 6 weeks of physio. They never asked the impact of that functional assessment on my life-I crashed for 3 month and had horrible generalized joint pain.

Ensure you have a dr apt within days after this assessment and make sure your dr records the symptoms you have. Make sure you hold a daily record of all of your symptoms. And if you can afford it, go to the Pacific Fatigue Lab. While it may not give you your disability, it will provide another point of view from the real experts in our disease.

good luck and let us know how it goes.

Hi Kati - sorry for not replying earlier, I've only just read your comments.
The "Functional Assessment" was done by a company specializing in returning accident victims to work, and the owner is listed as being a "Disability Manager". The two days of testing involved lifting a container weighing 5lbs from floor to waist height, and back down, then repeating with increasing increments of weight. Then the same process only from waist to eye level, repeated over and over. Then I had to carry a 5lb container across the room and back, then increased weight repeated over and over. Then carrying a bag weighing 5lbs back and forth, then increasing the weight and repeating. There were 5 minute crouching exercises, 5 minute kneeling exercises, 5 minute stretching with arms over the head while looking up at your arms (this one really killed my neck and shoulders!). There was stair climbing, ladder climbing, step-ups. There was pushing a cart with weight and increasing the weight in increments, then there was pulling a cart with increments as well. There was a 10 or 15 minute typing test. Enough exercises to keep me busy for a day.

The testing was specifically a two day test (because I discussed post-exortional malaise with my case manager) and so the tester was able to see the after-effects of the previous day of testing on me. Of course, he didn't get to see that the testing affected me poorly for weeks post-testing. As expected I was in agony on day 2 after squirming most of the night in pain and unable to get any relief or sleep. Day 2 most of the tests were repeated, with the exception of range of motion, typing, and a few others. The disability insurer had sent along a copy of the Pacific Fatigue Laboratory report to the FCE tester, which surprised and pleased me. He didn't say much about the report, only that it was "really interesting".

I asked my (last) case manager how the report from The Pacific Fatigue Laboratory was received by their medical board and she said "Oh well, its just one test"....... and I said, "yes, but it is the test that shows, scientifically and without question what is going wrong in my body when it comes to activity (of any kind)". No response. I will ask my new case manager as I would really like to know how it was received.

With that said, with the report I provided from the Pacific Fatigue Lab, along with the Functional Capacity Evaluation done by their provider, my disability was approved beyond that 2 year mark of "change of definition" from unable to perform MY job, to unable to perform ANY job. I believe that the report from PFL is, so far, one of the best scientific ways to show the PEM component of CFS/ME and that makes it worth every penny. I really hope that this kind of testing becomes available here in Canada,.....perhaps in the new Chronic Illness clinic due to open up here in BC (at some point...???)

 

[Kati]

Congrats on getting your permanent disability.
I am really glad that more and more are getting approved following the PFL or 2 consecutive days VO2 max testing (I got mine done in Miami). The results are not arguable.

I am concerned that Functional assessement are done on us, are not specific to our disease, not providing much relevancy for us, and causes undue harm which is not even taken into account into assessment of disability.

My own functional assessement had for conclusion that I was deconditionned, that I needed 6 weeks of intensive physio then I should go back to work, despite a second day assessment where I mentioned I felt like run over by a truck. What the physio didn't see or hear is that I had a major crash, generalized joint pain for 3 long months. I still had the insurance company after me for physio, then backed down and sent an occupational therapist, who gave up on me because I was too focused on my symptoms and not enough on the process. ( I told her I refused to go walking if I had chest pain)

We can only hope that in the future, the way patients get tested for disability becomes more efficient and less harmful. Having a few biomarkers would help this greatly and yes I agree, having access to VO2 max testing in Vancouver would be an awesome asset.