Abnormal blood lactate accumulation during repeated exercise testing in ME/CFS, 2019, Lien et al

PubMed:
https://www.ncbi.nlm.nih.gov/pubmed...CuH6dCpOO5Y9YnfCJS3T3yvtc0gD14JRi7ITrXZ8zhlMc

 

We wouldn’t, I misread what you wrote earlier about the encouragement provided. (I missed the “is quite inconsistent” and that changed what I thought you were saying)

The authors don’t claim to achieved VO2max. They use VO2peak throughout. An RER >1.1 meets the claim for VO2peak and is adequate to make comparisons.

 

Not really. The main result that was shown in almost all previous studies - a decreased workload or power output at the ventilatory threshold - was confirmed in this study.

We're not cherry picking - it's not that the previous study indicated VO2peak at VT would be the main outcome and that we now switched to another outcome or something like that. Here's what I tweeted when the previous CPET study came out, in March:
https://twitter.com/user/status/1106303847708921859

 

I suspect that this would be because participants were not consistently encouraged to go give everything they have as Snow Leopard suggested, making the peak values less reliable than those at the VT. The authors might have been cautious to not push patients too far and might have done the same for controls to have a reliable comparison. The article says:

Given the results of CPET studies we now have, I wonder whether it is really necessary to produce peak values at the second exercise test. Perhaps values at VT are sufficient. This could reduce the negative impact these tests have on patients.

 

Congratulations to the Norwegians for making this possible! I saw that the study was funded by patient organizations.

Is there anyone who was involved with this process who can share some of the details (perhaps in PM) so we could try to copy this success in other countries? I'm interested to know how you got the research team involved and prepared to study on ME/CFS, how much such a study costs etc.

 

What would be the difference between obtaining a sample from the arm vein and artery?

My lactate level was in normal range during PEM (18 hours after exercise).

 

As you say, VO2 at VT is reduced in all but one of the studies, but not always by very large amounts. Only half look significant (the ones you've bolded). That raises questions of reliability. A measure that only produces a clear result half the time is worrying.

 

Others probably know more than me about this, but Katharina Lien did (possibly still ongoing) her PhD on ME and has been involved for several years, I don't know how she became involved to begin with. I believe she is largely the reason why there's a research group at the University of Oslo working on ME. She is a part of the research advisory board for the Norwegian MEA, which advises the charity on what studies to fund.

The Norwegian MEA fundraises continuously and hands out small grants every May, mostly for small pilot studies or small grants to expand or improve existing studies. One recent example is the actiometer pilot at Haukeland.

 

Very good point. I actually think u might need training over a longer period to see that response in mild/moderate-patients, which then e.g could be tested for lactate and general functioning level like a month after etc. This would probably be unethical though, and then there's the issue of not being able to say with certainty that x caused y

 

Lay persons write up, by a severe ME-patient. Includes quotes and comments by main author Katharina Lien.

There was a short presentation of the study on the radio this morning, link in the blog, and a longer interview coming up tomorrow. Hopefully the publication will spark some usefull debate here (after a bit to much recovery norge and bps-proponents stuff going on in may, as per usual... :-/ )

Katarina Liens Lactate study is published - a comment. (google english)
Katarina Liens Laktat-studie er publisert - en kommentar. (norwegian - well, duh...)

There are more comments by Lien, scroll about halfway down.

 

Debate in this twitter thread between researcher Katarina Lien and prof. Kristian Gundersen and Henrik Vogt. It's in Norwegian, but the tweets can be translated.
https://twitter.com/user/status/1136254631103909888

 

I see Vogt and Gundersen are still arguing it's all deconditioning.

2 days ago I did a nice walk and felt ok.
Yesterday it was a little shorter.
Today I can barely manage 1/3 of the same distance, walk slowly, feel like crap. When standing up, I also had a moment of such low blood pressure that I fell down again.

Maybe this is all just a coincidence and the change is for reasons other than activity levls but this kind of pattern is typical and I've had it for 20 years now.

How could deconditioning possibly explain this? I admit that I know little about the topic but as far as I know deconditioning a) improves with exertion, b) does not suddenly get worse like this, c) doesn't produce such delayed effects.

 

"One cannot use exercise to treat ME patients. Still, she would like to emphasize that activity that can be tolerated over time without triggering PEM is probably sensible"

Unfortunately this gets us back to the slippery slopes of activity programs.

I can't self care without PEM and yet this is about activity being tolerated.

It doesn't go far enough to protect us or give the right impression that it's every day basic activities that are beyond the scope of many of us

 

A renowned good radio show “Ekko”, had a lengthy interview today with a former top cyclist and psychologist, now patient (6-7 years).

K.Lien explained the newly published study and Tronstad in Bergen added information about the pyruvat dehydrogenase and the mitochondria and such. These things are well known to many, but probably quite interesting for the ordinary listener.

It was interesting listening to the cyclist. Guess most patients can relate to most of what she told. She had, after chaotic years, come to the conclusion that the only thing helping her was pacing, minimizing everything, this after the usual advice of “just carry on”, which evidently made her much worse. She now measures lactate levels everyday and quite often, and use that as a tool. It helps her, she’s progressing quite nicely in ME-terms. So that’s uplifting for her, guess also for everyone able to stabilize as soon as possible.

We all know that implementing such knowledge, getting good advice early on may impact the chance of recovery a lot. So this kind of knowledge must be taken into clinical practice. This kind of advice is the best investment you can do to prevent harm and increase chances of recovery. In that way this study and other such studies are important. Patients have known this for a long long time, but we obviously need studies backing up that pushing patients through is wrong and I would add, also dangerous.

 

I think she is just saying that exercise we can't manage is bad for us but giving up movement we are coping with is not going to help. The ME community was attacked by them saying the advice we gave was complete bed rest for everyone. She is not giving them ammunition to say we are anti exercise, we are just saying there is a varying individual capacity that the patients must be allowed to decide for themselves.

 

This is such a delicate matter. Agree that explaining that patients should go for some “activity” if possible, is something that need to be explained in greater detail. The stupid and dangerous myth of deconditioning (as cause) is a problem. I always feel a little sad when stating the obvious in the beginning of trials, “that what we’ve found is not due to deconditioning.” Of course not. But it probably need to be said over and over again when someone wants to give that impression. Along comes the “should probably do activity”, almost as a reflex. A physician has to say that if wanting to have any credibility. That’s fine. In principle everyone understands that activity is good for you, but it should be clarified very closely what level we are talking of, that many patients do their “activity” simply by being upright for a while and doing the most basic things.

 

It still doesn't feel quite right even with that explanation. If PWME feel better with bedrest (and I am one of these) then we surely have the right to say this. Aggressive resting has always been the best form of treatment for me.

I am anti-exercise as it doesn't do me any good. It's like being told that spending is OK when one doesn't have the money. I'm anti bankruptcy in the same way. If that is used against us it's no reason not to say it if true.

The "other side" don't like a lot of things we say and ordinary doctors need to address their automatic assumptions and knee-jerk type statements to fit the facts. I know if it hard for them to cope with a group that responds badly to exercise, exertion, activity etc but that's the fact they need to come to terms with.

People who have some physical functioning left over in credit from their day-today activities obviously do exist and if they feel better for it being active physically with that extra strength that's wonderful. It's bring us into the area of Pacing and long term movements in health.

I've never had enough physical functioning to be able to say that my current activity level is "tolerated over time" as there is always something that I cannot do and that's usually simple like having a bath or cooking a meal.

Her words seem to hark back to the often difficult to find "baseline", which she said in her previous statement was impossible to find as some patients did not know from one week to the next what they could tolerate.

I'd rather she hadn't said that last bit but I am probably nit-picking.

 

It's not a coincidence. I've had the same experiences for over 28 years.

 

The "patient organisation" Recovery Norge (for patients who have improved from ME by their own efforts and which is lead by MD Henrik Vogt) has asked 9 anonymous members whether it's true that ME patients can't tolerate activity. It believe this is meant as a critique to Lien's study.

google translation of the replies
Recovery Norge answers: Can't ME patients tolerate activity?

https://twitter.com/user/status/1137268840235175937

 

I agree. My wife actually pushes herself hard within her limits, but she always seems to understand those limits well. My impression is she typically pushes herself to the edge of PEM and maybe into it slightly, unless external circumstances (family visits etc) mean she gets loaded further, then dips more heavily into PEM. This is a major part of my wife's staying-sane strategy.