Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by helen41, Sep 4, 2010.
Very exciting news. We need testing like this to be available everywhere!!
Great news Helen! You must be majorly relieved.
Great news - I'm sure everyone who has ever been denied disability benefits for this illness can sympathise with your situation and is mentally celebrating with you!
Awesome news Helen, unfortunately my results are not so helpful, not as "sick". But sick none the less!
Well kids, I now have booked in my date at the Pacific Fatigue Laboratory for the last week in January. Hooray! Eek!
The "hooray" is that I'm really looking forward to this interesting experience, and the "eek" is for the PEM I will surely experience afterward. But I'm excited!
I really want to thank those who have shared their experiences here and elsewhere, most especially helen41 for being so generous with information, and anncavan for the lengthy and informative blog posts.
By the way, for anyone who's considering it, apparently all the recent online chatter about the PFL has made them very busy - "slots are filling up fast." So if you're thinking about doing it, don't delay. They won't actually book the appointment until you get the paperwork to them including your doctor's referral form, so be aware that you've got to get that organized first.
One of the benefits of the PFL testing was the suggestions Staci made for improving my stretchting/ exercises I've been doing and improving my pacing. The HRM is just one part of it. I'll start working with a PT in Jan to come up with anaerobic exercises. Short duration exercises that use the anaerobic system and then rest at 3/1.
hehe .... she said the first thing I should do is to stop the 25 min walk I was doing everyday. She said that if I was going to walk, to keep it under two minutes at a time and then rest. It does seem to be helping. I think I'm starting to get it - the exercise program should slowly build you up and you get toned up and endorphin release. And without the exercises eating too much into the energy you have for the rest of the day. Imagine that - activity that builds you up and makes you feel better rather than worse.
I'm dependent on walking to get to my clinic and PT place during the day. So I guess I'll just have to do the best I can, take it slow, and rest more on the way. If it reduces what I can do the rest of the day, there's not really anything I can do about it.
This great news for ME/CFS as well
I know this is an old thread, but just wanted to congratulate "Helen41".
I hope everyone that goes to PFL will post their experience and results (if they don't mind). This facility and related test can contribute immensely to our ME/CFS community and I believe this lab will eventually help develop very substantial treatments for us. A lot of us have been sick for quite a few years and if there was a cure developed today we would benefit greatly from a conditioning program that would prevent crashes and help us reach our potential as quickly as possible.
This lab could conceivably develop test that may coincide with testing for the biomarkers to confirm different stages of PEM. Test could be developed to make sure our HPA axis is working properly under physical stress. I can still think of many other uses for a facillty like this.
I hope that some day there will be a PFL on the east coast, Canada, Europe, Australia and etc...............
and is Klimas' clinic doing this, also?
If they can tell me how to excercise without hurting myself, that would be super cool.
I am not totally sure what you mean, I wouldn't believe Dr Klimas is discriminating on the basis of where she sees her patients!
She has recommended meds for me (Imunovir) which is a prescription drug for Canadians, however neither my doctor or the infectious disease dr at the center for excellence in HIV in Vancouver wants to prescribe it for me. This is still a story that needs following.
I'm sorry I wasn't clear... it previously sounded like the Stevens protocol resulted in recommended meds? and that Klimas was perhaps doing Stevens protocol? I have heard a video of her talking about using exercise to provoke a reaction to see how tests differ, but I assumed she was talking about testing mostly other things, say immunological things.
But it sounds like I missed something on the thread. You have been able to see Klimas somewhere besides Miami? That is really great!
I hope you are able to get the medicine you need.
I am trying to figure out how to get testing and treatment.
Thanks Willow- Nancy has 2 clinics, one at university of Miami (who takes medicare, but wait time is long) and a private clinic. (I have been to the private clinic) She also does research, one that you are talking about is the response to exercise by testing cytokines regularily during and after exercise.
She recommends exercise as a way to prevent deconditioning- since it can cause all kinds of trouble, and very much like Staci Stevens, which means (last time I heard) 5 minutes of exercise and 10 minutes resting flat. I haven't done that yet. Just going to the grocery store is hard.
As for medicine, who knows- I hope that clinical trials come sooner rather than later. And I hope science figures something out. It's hard being in limbo.
Testing and treatment: a few doctors understand ME/CFS fairly well. Here is the list:
Dr Peterson, Dr Lapp, Dr Klimas, Dr Enlander (I don't know much about him), Dr Kogelnik, Dr Montoya, Dr Bateman, Dr Cheney.
This list may change drastically when XMRV is recognized as pathogenic and perhaps as potentially causal to ME/CFS. Then a lot of infectious disease doctors will start paying attention. Some are even open to prescribe ART, which is not the case in my area.
As for testing, I personally needed personal validation, but at the moment I need disability testing and that's the main reason I am returning to Miami. That is if I survive the plane trip!
Looking back, I can see how you could get confused. Early in the thread I announced my PFL results, Kati was excited for me, and I asked how her search for a local Dr that would dispense meds was going. We then made the seque back to the exercise testing.
That's interesting- and different from the Stevens protocol. I wonder if it would be useful to have another thread for this. Cytokines were not measured at Stockton- I'd be interested to read more. Is that test retest, or during a single event?
Do you mean aerobic exercises?
Nope. It's the aerobic system that is broken. My VO2 at anaerobic threshold was low to begin with and decreased 23% after the second test. There's no way I can improve by using the aerobic system. Reaching AT one day lowers it for the next and causes the PEM symptoms.
An easy example (NOT what i will be doing to start with) is how soccer players train with the anaerobic system. Hard sprints for 20 or 30 sec and then rest at 3/1.
There's a very good chart in one of the reports they gave me. Maybe i can find a way to link it. There are 3 energy systems - one really short one ( a few secs), the anaerobic system that that takes over and then decreases rather rapidly at the 2 min mark, and then the aerobic system system that starts to kick in at 30 sec and then is dominant as you go over 2 min.
So that what Staci's suggestions are about - anaerobic exercises at 15 sec or less to start with. And as she put it, if I have to walk, keep it under 2 min and then rest.
I think I'm getting this put together. The idea is to tone up and get endorphin release without inducing PEM symptoms. Which means using the anaerobic system.
As exercise time increases past 2 min, even if you are staying under the AT heart rate (115 for me), the aerobic system will be the dominant energy system. This is why ME/CFS people with PEM and low threshold can't work - all your daily work activities last long enough that they normally use the aerobic system.
there was a great thread started by Sasha in March. "CFS anaerobic exercise protocol (Staci Stevens): Can anyone explain it?" Wonko replied with an explanation that I thought was helpful
"any activity which keeps your HR below your aerobic threshold would result in you using the anerobic energy system primarily while it was available at which point your body would switch to using the aerobic energy system - in normal circumstances in a healthy individual this should be indefinately as at that rate of energy usage the body SHOULD be able to convert the sugars used by each system easily - but afaik it may not be indefinately if the conversion process is blocked/damaged [...] but any activity which is close to the threshold will probably result in the threshold being breached in time - even if a gentle walk doesnt shove you over it to start with it will eventually - it's just a matter of when - of course the closer you are to the threshold the sooner and easier this will occur"
Urban Travels, presumably next week is your appt. Good luck (and luck in this case good luck means a spectacular failure so disability gives you what you need). Hope you get through it ok, please keep us updated
Aw, Helen, thanks for remembering! Yes, I will be having my testing this coming Monday and Tuesday. I will be sure to share a report here once I'm home and un-crashed enough to type.
Hi all - I'm back in sunny LA from foggy Stockton. Too crashed to type much, but my test went well. Everyone at the PFL is super nice, Staci is great, and boy oh boy did I deteriorate from Day 1 to Day 2. A few of my heart rate numbers got flubbed up because of a technical problem (they can fix it by getting the numbers manually off the EKG, but this will take a while) but i got the "big picture" results pretty clearly.
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. Staci said this means I hit my aerobic threshold in the first minute or two of the test on day 2; the equivalent exertion to walking across a room. My Vo2 max was 8.7 on day 1 and 7.3 on day 2 - so that's "moderate to severe" functional impairment on day 1 and "severe" on day 2.
I'll post more completely once I've had more of a chance to rest.
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