sillysocks84
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Are there ways of relieving co2?
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New paper: Aerobic Energy production and lactic acid excretion inhibited in severe ME
- Thread starter Countrygirl
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The "exertion" he is talking about is walking a few feet to the toilet and back from bed, to which he is confined. It takes him 12 hours to recover from walking to the toilet and back. If that's not real ME I don't know what is.
The findings in this article corroborate and validate previous findings, the study has relevance and importance as it was a severe case of ME. Most studies do not include severe ME patients. The study corroborates and validates other findings in relation to the mitochondria, the most consistent finding across studies being abnormal levels of lactic acid for overly long periods of time. And it also highlights the underlying metabolic problem in severe M .
The criticism here on this page lacks substance, abnormal lactic acid levels are abnormal which the author ties in very well with lots of other pieces of research and it's impossible to understand what lack of objectivy has got to do with abnormal lactic acid levels and as professor Barry Marshall who won the Nobel Prize for experimenting on himself always says it is very important for medicine to move forward that doctors test things on themself and report about it.
Don't engage in aerobic exercise?
sillysocks84
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That kind of sucks when you have a 2 year old
SOC
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The argument that an n=1 study does not tell us about whether the results given in this article apply to all ME patients hardly lacks substance. Example: I have very low IgM and CD8+ cell number. Repeated lab tests document that. I have ICC ME. People with ICC ME have immunological abnormalities. This in no way proves that all PWME, or all people with severe ME have low IgM and low CD8+ cell number. All it means is the one person has both ME and those particular immunological findings. Maybe more PWME have it as well, maybe most do, maybe no others do. We don't have statistically valid research findings to confirm or deny that this is a universal finding in ME. The same goes for the study this thread is discussing.
It is also a substantial scientific criticism that the author extrapolated far beyond his data. That does not lead to a valid scientific conclusion.
No, that is generally NOT considered an important scientific technique. Yes, it has been done in the past. That doesn't make it sound science. Sometimes it works. Often it doesn't. Objectivity is important in science.
There is no question in my mind that the observations made in this one specific case of severe ME are very interesting and potentially useful as a springboard for further scientific research. I'm glad Dr Vink made these observations and wrote them up. Where he went wrong was in assuming that his conclusions about his particular situation can be extrapolated to ME in general. What he has is an interesting hypothesis based on very limited observations, not a scientific conclusion. His hypothesis could be right. I suspect parts, if not all, of it are right. The key word is suspect. There is simply not enough scientific evidence to verify his hypothesis yet.
It could easily be some form of exercise intolerance as a result of OI. That's just as likely given that recovery is relatively quick (12 hrs) compared to much longer recovery more typical of PEM. That is not to say that a PWME cannot have both exercise intolerance from OI and PEM, just that exercise intolerance is not a definite indicator of ME. It is an indicator of dysautonomia (and possibly other things) that may, or may not, be part of an ME presentation.
Let me be clear that based on what Dr Vick has reported, I would guess he does indeed have severe ME. I am not questioning that. I'm just saying taking 12 hours to recover from walking across a room is not definitive evidence of ME.
Bob
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Cort Johnson has written about this paper...
How Walking to Bathroom Can Be Harder Than Running a Marathon: A Doctor’s ME/CFS Case Study
By Cort Johnson on September 25, 2015
http://www.cortjohnson.org/blog/2015/09/25/walking-marathon-me-cfs-case-study/
How Walking to Bathroom Can Be Harder Than Running a Marathon: A Doctor’s ME/CFS Case Study
By Cort Johnson on September 25, 2015
http://www.cortjohnson.org/blog/2015/09/25/walking-marathon-me-cfs-case-study/
MeSci
ME/CFS since 1995; activity level 6?
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There have been some studies on using sodium bicarbonate to improve endurance in athletes, the presumption (sometimes tested objectively) being that it reduces acidity and thereby improves mitochondrial function. But ironically it has also been found that sodium bicarbonate also increases lactate production. Maybe the carbonic acid connection could explain this. This page gives very technical detail on carbonic acid/endogenous bicarbonate interactions.
There have been numerous threads discussing the possible pros and cons of taking sodium bicarbonate, but I don't think any firm conclusions have been reached. I feel that I benefit from it, sometimes significantly, in terms of energy, but I by no means have a lot. It once recently made a big difference to my ability to walk up a long steep hill into town on a day when my legs had been feeling too weak beforehand. It was as though someone had suddenly put in fresh batteries!
No one symptom is definitive evidence of anything but the clinical picture presented in the paper clearly is consistent with infection-triggered ME. It was stated that the 12-hour symptom exacerbation couldn't be PEM because it's not delayed. I doubt that PEM is always delayed for everyone. Some severe patients I've met say that the crash from exertion is immediate or almost immediate for them.
The main characteristic of ME as documented by Dr. Melvyn Ramsay is an abnormaly delayed muscle recovery after doing trivial things.
And 12 hours for Vink's muscles to recover from walking to the toilet and back is a classical example of this. Whereby recovery means that they only go back to being able to walk the same trivial distance again. Which is a far cry from restoring full power.
I must say I do not understand your reasoning; if you test something on yourself it's not science and not okay to do so but if you test the same thing on a patient then it suddenly becomes science and is fine.
Some very interesting things about self experimenting doctors etc:
"One could regard it as rather unethical to not try a new procedure on yourself first," asserts Michel Ter-Pogossian, a radiation physicist at Washington University in St. Louis who helped create the PET scan and first tried the machine on himself. "If you are going to ask volunteers to be tested, you should be willing to do it yourself."
"The personal payoff for taking a chance on a self-experiment is big. Take Marshall\'s pivotal H. pylori experiment. At first, his critics lambasted both his ulcer theory and his approach, denouncing him as "crazy" (T. Monmaney, "Marshall\'s Hunch," New Yorker, Sept. 20, 1993, pages 64-72).
But further experiments soon showed Marshall was correct."
"is a good self-experiment worth the risk? Marshall doesn\'t hesitate: "You bet.""
http://mobile.the-scientist.com/article/17693/testing-the-most-curious-subject-oneself
And Barry Marshall went on to become a professor, won the Nobel Prize and stimulates doctors to continue to use self experiments.
And if you read the article by Vink you can see that the research was cleared by a governmental Medical Ethics Institute, so a non-for-profit Institute.
"Objectivity "is" important in science." Vink uses a lactic acid analyzer and just wrote down what the machine says. He is not relying on patient questionnaires like the psychiatrists do which is subjective.
Interestingly enough a well-known researcher has just posted the following comment about the article somewhere else:
"I've just finished reading the paper on aerobic energy production and thought that the results deserved wide readership."
SOC
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As I said, dysautonomia (which most PWME have) can cause an immediate crash. People with dysautonomia and not ME can also have an immediate crash from exertion. There's some question about whether the symptoms from a dysautonomia crash are identical to the symptoms of PEM. The differences may be onset delay, recovery time, and flu-like symptoms. Headache, cognitive problems, exhaustion, muscle weakness, and GI symptoms are common in both.
I have no doubt that some PWME have an immediate crash from exertion. The question is whether that "crash" is the result of dysautonomia or whether it is PEM, which a PWME will have as well.
The point is that people while with ME and dysautonomia can have an immediate crash (due to dysautonomia) after exertion, people with dysautonomia alone (no ME) as well as some other conditions can also have an immediate crash after exertion (exercise intolerance), so that kind of crash is NOT a definitive diagnostic for ME. It could be the result of a number of different conditions, some of which are often misdiagnosed as ME.
All too often exercise intolerance is mistaken for PEM. They are not the same thing, although many PWME have both. While there are definite similarities between the two, there are some distinct differences as well.
That's the part that causes people to question a 12 hr recovery as PEM. That doesn't mean it isn't serious, just that it's more likely to be exercise intolerance or something else rather than PEM.
From the ICC
An immediate crash from exertion can be a part of ME symptomology. It is not at all definitive any more than a sore throat, swollen lymph nodes, or cognitive dysfunction are.
lansbergen
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For me there is a difference betweem a crash and a flare.
A crash can happen even during activity but the flare comes later.
In the beginning I had a reference point and that told me the flares occured 7 to 10 days after the event.
At the beginning of a flare the symptoms were mild but could become sky high within days.
@Jonathan Edwards How likely is it that the antibodies reach a high enough level to start causing flare symptoms 7 to 10 days after a certain event?
A crash can happen even during activity but the flare comes later.
In the beginning I had a reference point and that told me the flares occured 7 to 10 days after the event.
At the beginning of a flare the symptoms were mild but could become sky high within days.
@Jonathan Edwards How likely is it that the antibodies reach a high enough level to start causing flare symptoms 7 to 10 days after a certain event?
Jonathan Edwards
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They wouldn't. They would be there all the time. The 7-10 day timescale would have to be because whatever the antibodies bind to are involved in some process that takes 7-10 days to evolve.
Ah, this is the substrate idea, isn´t it? That some change in the body gives the autoantibodies the chance to do more harm than usual. The problem I have with this, with my very limited understanding of body chemistry, is that surely the substrate already has to be inside you in some form if they are auto-antibodies? So they can´t be acting on lactic acid, for example, but rather on something that the lactic acid changes? The only pathway that I can envisage is something like the one Maes suggested, where oxidative damage, possibly caused by alterations in gut permeability, creates oxidative epitopes that auto-antibodies bind to.
Jonathan Edwards
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Antibodies need to bind to peptide chains to have any specificity and signalling capacity on the whole. So lactic acid would not be an antigen. Oxidised proteins or lipids are I think too heterogeneous to make much sense and one would expect them to appear very quickly I think. More likely to my mind is that certain mediators, or their receptors may be expressed up to several days after exertion during the process of repair and re-organisation of tissue such as muscle. Macrophages go through a sequence of activation and deactivation change sin muscle after exercise over several days. maybe a receptor that normally mediates deactivation and return to stable state is targeted.
Couldn't agree more
