Distinguishing CFS - New Zealand Research

[A.B.]

It's interesting that they're spacing out the 2 day test over more than 2 days, I guess to see how long the effect lasts. That drop in ventilatory threshold, from 156 to 137 is typical for people with ME or CFS, but not healthy people.

I observed that what I believe to aerobic capacity can change suddenly for no reason, due to overexertion, or recently due to a wisdom tooth removal. That it decreases the day after I've done too much is highly reproducible and this has been there since the beginning of the illness onset. However the threshold at which this happens also seems to fluctuate so it's hard to predict exactly how much I can do. I regularly over or underestimate my capacity. Overstimation is much more common though. This dynamic seems to fit the description of PEM, even though I mainly experience increased fatigue, malaise and reduced motivation rather than more specific symptoms such as fever-like feeling or noise sensitivty. A question of severity perhaps?

 

[daisybell]

So, I've done my second test - I was the first person to do the 72hour protocol as far as I know.
No deterioration from the first to the second!

I don't know how I feel about that....slightly disappointed not to have some objective evidence of my PEM - which I do get, but it had worn off by the second test. I feel that if I had exercised harder or for longer, perhaps I would still have felt the effects 72 hours later...

So now I have my partner taking the mickey, saying perhaps I don't have CFS after all, and I just need a graded exercise programme.....

I'm interested to know if they find the same pattern with other participants, but personally I am disappointed as one of my reasons for participating was that I hoped to have objective evidence of how I feel....

 

[Hutan]

Ah, damn, Daisybell. I feel your pain.

Yes, the exercise was fairly mild. As I said to the researchers, doing the grocery shopping and then getting the bags in from the car is a lot more effort than a few minutes on a bike with only some of that time involving hard-ish work. I know the researchers didn't want to hurt us, but I would have preferred to have gone a bit harder.

For all I know, it was the walk I did on the day in between my 48 hour-spaced tests that caused my drop rather than the first cycle...

 

[Snow Leopard]

I'm interested to know if they find the same pattern with other participants, but personally I am disappointed as one of my reasons for participating was that I hoped to have objective evidence of how I feel....

It is indeed disappointing that the test didn't match your expectations...

Pros: You don't feel like shit for four weeks. Cons: no objective evidence.

It seems to me that the methodology is different to the 24 hour protocol done by others - both in intensity and of course the gap between tests.

Still, perhaps their results will show a reduction at 48 hours but not 72 hours?

I would like to see a discussion between those doing this study and Max Nelson at University of South Australia who has done a similar (but 24 hr) study and told me that differences between studies may be due to differences in the intensity of the tests... If you are in contact with those doing the study, I would suggest this to them.

 

[daisybell]

As far as I know, the 48 hr CPET was showing a drop in ability on the second test.
I have no idea if I'm a one-off or typical for the 72 hr test protocol!

 

[HowToEscape?]

Ah, damn, Daisybell. I feel your pain.

Yes, the exercise was fairly mild. As I said to the researchers, doing the grocery shopping and then getting the bags in from the car is a lot more effort than a few minutes on a bike with only some of that time involving hard-ish work. I know the researchers didn't want to hurt us, but I would have preferred to have gone a bit harder.

For all I know, it was the walk I did on the day in between my 48 hour-spaced tests that caused my drop rather than the first cycle...

I've noted that researchers seem to be enamored of a stationary bike test, but I get a worse crash from running errands, standing in line, or something that involves sitting and talking for an extended period of time than anything else. On the bike you are seated, and probably gain blood circulation due to the quads flexing and relaxing on top of the exercise induced pulse and pressure increase.

In my not quite humble opinion a few minutes on the stationary bike confuses the issue more than it reveals. I don't know how to reach the researchers in order to convey this.

 

[Snow Leopard]

In my not quite humble opinion a few minutes on the stationary bike confuses the issue more than it reveals. I don't know how to reach the researchers in order to convey this.

I am confused about the methodology too. It seems like it isn't really a replication. Keller et al, and the other studies attempted to test maximal exertion, which takes around 15-20 minutes and involves exercising for several minutes, sometimes over 5 minutes past the lactate and ventilatory thresholds. Maximal exertion is exactly as it sounds - it's hard and it hurts!

A milder exercise test, which it seems they are trying to do might be more able to be generalised (as it's less harmful to patients), but, well, unless they're testing maximal exertion, they might not find a reduction as they're not truly testing the limits.

 

[HowToEscape?]

I am confused about the methodology too. It seems like it isn't really a replication. Keller et al, and the other studies attempted to test maximal exertion, which takes around 15-20 minutes and involves exercising for several minutes, sometimes over 5 minutes past the lactate and ventilatory thresholds. Maximal exertion is exactly as it sounds - it's hard and it hurts!

A milder exercise test, which it seems they are trying to do might be more able to be generalised (as it's less harmful to patients), but, well, unless they're testing maximal exertion, they might not find a reduction as they're not truly testing the limits.

So there's two problems:
1 Full effort 20 to 25 minute versus lower average shorter time
and
2 The deficiencies of using a stationary bike as the test of exertion.

In my experience I found that running up stairs during periods when I was able to do that brought about qualitatively different and also much shorter post crashes compared to standing and walking, the latter for a longer time at much lower intensity.
e.g Walking slowly and standing brought much longer crashes than 25 min of best effort jogging/stair climbing. Don't try this when you are in a down stretch!

 

[Snow Leopard]

Full effort is unlikely to be 25 minutes for anyone unless they were an athlete and haven't suffered much deconditioning. (the power level keeps ramping up!)

I also find it hard to believe that best effort jogging or cycling doesn't hit as hard as standing/walking!?!

 

[daisybell]

The effort started at 25 watts and went up to 75 watts. 75 felt like hard work but i wasn't exercising at that level for very long. Both times I felt I wanted to stop but I could have gone on a bit longer - so I didn't stop because I couldn't do any more, but because I was told to!

 

[JaimeS]

I mentioned in my email that no one knows if it is actually complicated, it might just be currently poorly understood, and that the word 'complicated' tends to be used by the BPS crowd to indicate that our thoughts and behaviours are involved in maintaining the illness. I also said that extreme fatigue wasn't really the main characterising feature, rather PEM is. And I queried the statement that our fatigue can't be explained by a medical condition, which is probably nit-picking, but readers could assume from that definition that our fatigue must therefore explained by a 'non-medical condition'.

Well-done on all counts.

The exercise physiologist told me (at the time) that some of the differences between the studies could be due to the level of motivation to keep going - eg the person conducting the test is supposed to tell you to keep going unless it's really obvious you've plateaued.

My exercise physiologist at Mayo was very encouraging, and I even rated the level of difficulty as a healthy individual would, according to him. But they were baffled by the VO2 values and had me on oxygen after the test was over. So my 'motivation' was good, for what it's worth!

Some of the comments here make me think that my 'first-day CPET' was already post-exertional. I hadn't been thinking of it in that light, but I'd already had so many tests at Mayo, and you have to walk everywhere. I was constantly hovering at the verge of PEM. Not only that, but the young exercise physiologist had so much trouble finding an artery that eventually the more experienced guy had to come and do it (in five seconds, btw). It hurts and feels weird, even though they numb the area, first; I was in a cold sweat by the time they were successful.

I'm not sure how much I should rely on his expertise, but when I expressed concern that people could just not try hard, he immediately assured me that it wasn't possible that this could not be the case and the physiologist not notice.

I had to take asprin before the second test as my headache was so bad...

I get a wicked headache / encephalitic pain at the back of my neck during PEM too, @Snow Leopard .

I feel that if I had exercised harder or for longer, perhaps I would still have felt the effects 72 hours later...

I'd be able to replicate after 72 hours also, @daisybell ... my PEM shows up 24 - 48 hours after exertion and requires perhaps one more day of recovery after.

Wonder if this study exists, yet? *Checks*. Nope, not yet.

 

[daisybell]

@JaimeS
Do you have any explanation for my results? I've had the written info back now and my HR only went up to 145 on test 1 and 131 on test 2 - so nowhere near my theoretical maximum of 175...
I have been diagnosed by Dr Vallings. I certainly relate to the experience of PEM - in fact I'm feeling lousy right now after a week that was too busy. But, for some reason, the 72 hour test did not show deterioration.

It's so disappointing to have results that not only don't validate how I feel but seem to invalidate it.....
ME/CFS isn't a club anyone wants to join, but now I feel at risk of being thrown out of this club....and where does that leave me?

 

[Luther Blissett]

I hope you don't feel invalidated @daisybell , for me anyway, the PEM is not always predictable. Sometimes I've gotten away with doing something short and aerobic and at other times doing very slightly too much for too long causes much more of a reaction.

It's a fluctuating condition at the best of times.

This test was only a one off (well two off) snapshot of a varying condition and in no way says you don't get PEM at all.

No one's throwing you out of the club without coming through me and Nerdy first.

I'm grateful for all who participate in research like this, especially knowing that it will harm them in some way. Thank you . My hero's. (gender neutral 'hero' usage meant)

 

[daisybell]

Thanks @Luther Blissett for those kind words.
It's daft but I do feel invalidated... I don't feel anyone around me truly understands and to have this test result has added insult to injury...
I'll get over it of course, but just now it's all rather raw....

 

[JaimeS]

It's so disappointing to have results that not only don't validate how I feel but seem to invalidate it.....
ME/CFS isn't a club anyone wants to join, but now I feel at risk of being thrown out of this club....and where does that leave me?

Not out in the cold @daisybell ! I feel there are multiple potential explanations for this, the first of which is to question what you were doing 24-48 hours before the first test!

 

[trishrhymes]

Hi @daisybell. I haven't read all this thread, but wonder whether the test you did with a 3day gap shows simply that the effect seen in the more usual 1day gap between tests has worn off by 3 days.

I understand the usual 2day CPET test for ME is demonstrating that people with ME take longer than normal to recover after aerobic exercise, showing they can't do as much the next day. After 3 days our muscles have probably recovered from the first test, so the study is demonstrating that it's best to do the second test after 1 day, not 3.

This doesn't invalidate your ME diagnosis at all.

I wonder if you could ask the researchers to repeat the test for you using the recognised protocol so they and you can learn from it, explaining the problem their test has left you with. And make sure you are well rested before taking the first test.

 

[daisybell]

Thanks all for your support...
I am thinking of seeing if I can get the test done again - with a shorter time between the two, and getting my heart rate up nearer its maximum.
Resting prior to the first test isn't really an option as I have too many things that have to be done on a daily basis. I can usually pace myself over the day if nothing else crops up.

 

[Hutan]

I feel there are multiple potential explanations for this, the first of which is to question what you were doing 24-48 hours before the first test!

Yes, another relates to eating just prior to the first test. We weren't told not to do that but other instructions I have seen for CPET say that it is important not to eat or to drink caffeine or alcohol in the three hours prior.

Useful things to remember for anyone doing a 2-day CPET.

I do hope you are able to do another set of tests with a shorter interval between them @daisybell. Also, the researchers might share with you whether others on the 72 hour re-test protocol also did not show the decrease in performance.

 

[lauluce]

That was the reaction Workwell researchers had the first time they did it. Then they recalibrated the machines and did it again, with the same results. So they knew they were on to something. The rest is history. Mind you they also decided to use this to test PEM .. which it appears to be good for.

yep, same impression of the doctor that gave me the CPET scan, he never had done it TWICE, so it was surprised regarding the worsening of the energy output on the second study 24 hours later thanth the firs, whose results where borderline normal, but normal nonetheless

 

[lauluce]

yep, same impression of the doctor that gave me the CPET scan, he never had done it TWICE, so it was surprised regarding the worsening of the energy output on the second study 24 hours later than the first, whose results where borderline normal, but normal nonetheless

I must add, however, that despite he was completly puzzled by the result, he still cited "deconditioning" as an explanation of the results, despite he knew very well that was not the case (if I was deconditioned, why did the first result came out normal? did I became deconditioned in 24 hs? did EXERCISE caused a state that is defined as THE RESULT OF LACK OF EXERCISE?), that he was seeing something new to him...