Article: Unraveling Post-exertional Malaise By Jennifer M. Spotila, J.D.

You can view the page at http://www.forums.aboutmecfs.org/content.php?198-Unraveling-Post-exertional-Malaise-By-Jennifer-M-Spotila-J-D

 

Hi Cort,

IMHO. I'm not so sure that we need to spend more money on research when we have info like this article listed below available. Simply making this known would eliminate much of the confusion around PEM and CFS. IMHO, Articles such a the one referenced in this thread or other articles where questions like this are raised that already have answers only add to the idea that we don't know what's causing PEM when in fact, IMHO we do know how this happens. Correcting PEM is a whole other bucket of worms especially if Cheney is correct and those with PEM also have dysautonomia.

I found many other articles like this while googling CFS Cheney peroxynitrate ... We know more than we think we know ... : ) .. Thank you google !

I only copied in page 5 and most of page 6 but to understand this you need to start on page 1.. FWIW. I see Dr. Cheney and Dr. Myhill as saying the same thing ... Loss of ATP = PEM. Cheney just goes into further detail on how he thinks this happens. I would think that by the looks of the Kreb's cycle that this can happen at various other points too. I say this because it appears that taking the B12s that Fred recommended have lessened my PEM. KOW ... I want to avoid the "I'm Feeling better" curse ... lol ...

I found it very interesting that Cheney understands that our bodies are going into organ failure when we're upright. I knew this from my own experience because when I lay down after being upright for an extended period of time, I can feel the blood going back into the organs in my upper body ... I have orthostatic intolerance and have to lay down every few hours in order to think straight or take a deep breath. After laying down for an hour, I ALWAYS have to urinate right away when I get up. And while laying down I can actually feel my lungs and heart muscle begin to relax as the blood, etc re-enters these organs. I can take a deep breath again. If you don't have OI, try holding your breath and pay attention to how your body feels as you allow the air to re-enter your lungs so you can understand this. Or pay attention to how any part of your body feels as it wakes up from the loss of blood aka falling asleep.

Note to self ... Don't eat BBQ chicken at 9 pm if you want to sleep ... lol ... I sure hope this all makes sense ... good night ... X

http://www.cfids-cab.org/MESA/Cheney.pdf

Great stuff and I too think dysautonomia and orthostatic intolerance are key facets of this disorder. (I the CAA has a webinar coming up on OI). I wonder if OI is as key a part of this disorder as PEM actually. PEM is more noticeable for me and I apparently past a tilt table test (altho Dr. Cheney said that not all the tests were done) but I felt horrible afterwards and I often try to sit down or lie down when I talk to people because I can talk better (more blood to the brain) and when I was working I had quit several jobs because they required that I do a lot of bending up and down - so I think its there and present even in those of us with more moderate cases of CFS.

I think your post, though, makes my point about research. Dr. Cheney got his initial ideas from Dr. Natelson's research group at the NIH. After the NIH disbanded the three CFS research centers about 10 years ago the work on the cardiac involvement in CFS completely stopped. That's 10 years lost! Over the past couple of years a little work has been done but the scientific community will never believe the heart or any other organ is involved in CFS in less papers are published in scientific journals.

For the all creativity and perseverance that Dr. Cheney has shown he's never apparently attempted to publish his theories in a medical journal. Nor, unfortunately, as he attempted to publish his results. So his theories have never been properly explored and haven't had any impact in the scientific community at large. (Neither has Dr. Peterson for that matter. Unfortunately he is no longer tied to the WPI I don't imagine that he will)

 

What is CFS if it is not ME and a wastebasket diagnosis? The Canadian criteria used the term ME/CFS because it was for ME patients, CFS was included in the term because people in the USA and now in the UK can no longer get an ME diagnosis. Therefore PEM was an issue that Ramsay mentioned. He was even talking about mitochondria problems as early as 1977, if not earlier.

I think CFS really is a wastebasket diagnosis - at least so far as it is practiced. Dr. Komaroff has published or will publish a study showing that a good portion of the people doctors think of CFS actually do not. I've always been very wary of the mitochondrial theory but Dr. Komaroff, who is nothing if not pretty conservative, is now interested in it, which really says something.

 

There is something terribly wrong when we have known that there is a mitochondria problem for more than 30 years, and yet little progress beyond this conclusion has been attempted. I don't think there has been any other convincing explanation for PEM than mito problems.

 

That's one reason, Recovery Soon, I think this disease is so fascinating - something really happens. For me it happens more quickly -but generally builds up until it is worse the next day....I wonder if its histamine for you. Some findings implicate the complement system, one section of which trips off a histamine reaction. Maybe something in exercise makes that portion of the complement system go crazy in you

Histamine is definitely a possibility Cort. I am hoping we can find the one link that we all share in common. Like you, I became convinced of the organic origin from PEM. I meditate every day (and have meditated regularly for years prior to CFS), did the Gupta Program, and have done everything to reduce my stress load. And yes, this lifestyle change does bear some fruit, as it would with any physical disease. As a result, there were times, when I questioned whether my thinking was the culprit- but PEM has disproven that beyond any reasonable doubt.

As an example- 2 years ago I was on a 5 day Silent Meditation Retreat. By day Three I was as peaceful and stress free as a human can get. To test the organic theory, I went on a couple hikes in this condition (nothing crazy- but pushed myself beyond my usual bounds). My theory was that if stress is the main culprit, then I could handle a triathlon with the bliss I was experiencing.

Uh uh. The PEM swooped in and knocked me out. It made the remaining time at the retreat unbearable.

To give some context, prior to coming down with CFS near 4 years ago, I was in incredible athletic shape- so my physical body is still rather strong considering. The hike was not the product of a deconditioned body, as some PEM dismissers try to assert.

Anyway, I am excited about this series and the research. I believe like Cort does, that PEM is at the heart of CFS.

 

Remember what it was like when you pushed yourself beyond your normal bounds - which you must have surely done before CFS when you were health..... A little extra tiredness, a little more sleep and then you were fine! Now if I exercise too much I can't sleep! What a world of difference.

I've seen little overweight old ladies - carrying 20 or so extra pounds of fat, just yakking away, enjoying the scenery - while there I was, 20 years younger, lean and looking as fit as could be - just struggling to put one foot in front of the other...its ridiculous! Its absolutely crazy!

 

There is something terribly wrong when we have known that there is a mitochondria problem for more than 30 years, and yet little progress beyond this conclusion has been attempted. I don't think there has been any other convincing explanation for PEM than mito problems.

I would strongly disagree that we've known there is a mitochondrial problem for over 30 years. That's an idea not a proven theory and there has been little work to validate the mitochondrial hypothesis. Until that occurs its an unproven theory. For myself I could see a number of other reasons, autonomic dysfunction, immune problems kicked off during exercise, even problems in activating muscle fibers correctly. I do agree that its very unfortunate that little research has been done on mitochondrial issue - but, welcome to CFS . That problem pervades many areas of the field unfortunately.

 

Well Ramsay and others thought it was probably the case, that was in 1977. It's merely a matter of research. There has been too little, and too much of it has been wasted were it should not to have been.

 

Hi Cort,

My crazy moment was getting off a bus and walking up a hill to my flat. A hundred meters, total. Around the corner came a very old lady in a walking frame. She passed me by, and accelerated up the hill and away. She almost had a fiendish grin on her face - huh, someone I am faster than! - and she was gone before I got to my flat. That was post exertional malaise, it was when I was studying to get my last degree.

People have been pointing to the mitochondria for well over a decade in the circles I am aware of. A lot has been discovered by CFS doctors but not published. I think Cheney tried to get a few papers published but he had great difficulty - I think reviewers were of the opinion that he had been hit with the crazy stick. Once you are considered to have opinions that are extreme, publication becomes close to impossible.

For example, the recent publication that relapses are linked to vitamin E depletion (oxidative stress) came as no surprise to me. One local CFS doctor routinely tests vit E levels and can't even find vit E in some CFS patients - a zero result! This is of course unpublished, but now we at least have the Japanese study that shows the problem. Oxidative stress is critical to CFS and PEM, and is very closely linked to mitochondrial function.

As an aside, I suspect that lactic acid is a good thing for us unless we become excessively acidic - because lactic acid helps energy production. I have never heard of a CFS patient developing lactic acidosis, which is the really dangerous thing that can happen when you have too much lactic acid.

Bye
Alex

I've seen little overweight old ladies - carrying 20 or so extra pounds of fat, just yakking away, enjoying the scenery - while there I was, 20 years younger, lean and looking as fit as could be - just struggling to put one foot in front of the other...its ridiculous! Its absolutely crazy!

 

Well Ramsay and others thought it was probably the case, that was in 1977. It's merely a matter of research. There has been too little, and too much of it has been wasted were it should not to have been.

I would entirely agree that there's been far too little research on this and other theories - why we all need to band together and support everybody who's working in this field.

 

Hi Cort,

My crazy moment was getting off a bus and walking up a hill to my flat. A hundred meters, total. Around the corner came a very old lady in a walking frame. She passed me by, and accelerated up the hill and away. She almost had a fiendish grin on her face - huh, someone I am faster than! - and she was gone before I got to my flat. That was post exertional malaise, it was when I was studying to get my last degree.

People have been pointing to the mitochondria for well over a decade in the circles I am aware of. A lot has been discovered by CFS doctors but not published. I think Cheney tried to get a few papers published but he had great difficulty - I think reviewers were of the opinion that he had been hit with the crazy stick. Once you are considered to have opinions that are extreme, publication becomes close to impossible.

For example, the recent publication that relapses are linked to vitamin E depletion (oxidative stress) came as no surprise to me. One local CFS doctor routinely tests vit E levels and can't even find vit E in some CFS patients - a zero result! This is of course unpublished, but now we at least have the Japanese study that shows the problem. Oxidative stress is critical to CFS and PEM, and is very closely linked to mitochondrial function.

As an aside, I suspect that lactic acid is a good thing for us unless we become excessively acidic - because lactic acid helps energy production. I have never heard of a CFS patient developing lactic acidosis, which is the really dangerous thing that can happen when you have too much lactic acid.

Bye
Alex

Passed by an old lady in a walker - that would get your attention

Mitochondria, mercury and other heavy metals and I'm sure there are others exemplify the huge divide between many ME/CFS doctors and the research world. I don't think there's been one study that looked at heavy metals and CFS. I'm also certain that mercury plays a role in CFS for me - but not one study has looked at that. Its kind of amazing that a disconnect there is.

 

Post Exertional Relapses do not feel to me like anything to do with a shortage of something needed to function.....such as may be needed for the Kreb cycle, Cardiac output, non compliant mitochondria, etc. It doesn't feel like I'm not getting enough of something...rather, it feels like I'm getting too much (Cytokines, NOO?). It feels like my body is being flooded with a poison that peaks in concentrations around 48 hours post exertion. I have found the problem to be cumulative too. It's not just an issue of doing too much today that may cause a crash....it could be the total for the week....like a "kindling effect".

Bottom line it seems everyone agrees on is that PEM is key to solving this riddle. How could it not be....not only is it exclusive primarily to ME/CFS, but it seems so directly connected to etiology. And many PWC's I have talked with would be able to work if not for the PEM.....and you would think that would get some attention from government health agencies.

I get really excited to see any research in this direction.

 

I know what you mean by poison. Somethingd is ramping up and something else shoots down is how I might describe it.

 

Hi Cort,

Great stuff and I too think dysautonomia and orthostatic intolerance are key facets of this disorder. (I the CAA has a webinar coming up on OI). I wonder if OI is as key a part of this disorder as PEM actually. PEM is more noticeable for me and I apparently past a tilt table test (altho Dr. Cheney said that not all the tests were done) but I felt horrible afterwards and I often try to sit down or lie down when I talk to people because I can talk better (more blood to the brain) and when I was working I had quit several jobs because they required that I do a lot of bending up and down - so I think its there and present even in those of us with more moderate cases of CFS.

In the last few years my docs have been looking into what's been causing my CFS/ME/FM and diagnosing me with celiac, leaky gut, candida, food intolerances, orthostatic intolerance, adrenal fatigue due to hormone deficiencies, etc. etc. I'm not sure but I suspect if we can figure out what's causing my OI and PEM, I'll completely lose my CFS/ME/FM diagnosis. My doc has resolved some of her patients CFS/ME via the candida treatment, etc. I'm not sure just how bad those patients were though ...

I've just had the poor man's tilt table test several times now and have been positive each time. My test results and my degree of OI vary though. Twice in recent years it's been dramatic and once it was barely noticeable. I've read that dysautonomia can be from allergies / mast cells, toxin or a viral component but a freind of mine just told me to look at "sticky blood" too. Have you been evaluated for types of dysautonomia other than OI ? Dinet has some good info on dysautonomia. I don't get dizzy anymore from bending up and down. That went away when my ataxia did. I have a freind who has diabetes and high BP who's doing what you're doing though. Have you had those checked ?

I think your post, though, makes my point about research. Dr. Cheney got his initial ideas from Dr. Natelson's research group at the NIH. After the NIH disbanded the three CFS research centers about 10 years ago the work on the cardiac involvement in CFS completely stopped. That's 10 years lost! Over the past couple of years a little work has been done but the scientific community will never believe the heart or any other organ is involved in CFS in less papers are published in scientific journals.

I wasn't aware that Cheney got his idea from anyone else. I would think that he's seen enough CFS patients to know that their hearts are being overworked ... Don't we all get winded easily ?

I was thinking that the heart problems in CFS/ME could be from a variety of things like low blood volume, missing nutrients or slight damage caused by a virus.

My cardiologist says that other than my LBB my heart looks good. I asked but he said he wasn't interested in doing a tilt table test for me or looking at Cheney's info on the heart. He did tell me though that since I'm a celiac, it's possible that I missing certain nutrients that our hearts need. The Methyl B12 and AdB12 that Fred recommended appear to be helping me with my PEM, muscle weakness and cognitive issues and I'm sure that would never have been picked up on with any of the tests available ... do they even test for these ?

For the all creativity and perseverance that Dr. Cheney has shown he's never apparently attempted to publish his theories in a medical journal. Nor, unfortunately, as he attempted to publish his results. So his theories have never been properly explored and haven't had any impact in the scientific community at large. (Neither has Dr. Peterson for that matter. Unfortunately he is no longer tied to the WPI I don't imagine that he will)

I was curious about this comment and found this ... this says that he has published several papers. Is there a difference in what you're saying ?

http://www.cheneyclinic.com/about

FWIW. If it weren't for the internet, I'd still be VERY sick with CFS/ME/FM and all the various other symptoms my diet, candida and nutritional deficiencies was causing me. From what I've seen this appears to be the trend in medicine. Patients healing themselves or loved ones despite their doctors. I have a great integrative doc now but I'd certainly feel a lot better about my protocal if all of my docs were aware of holistic treatments and traditional. I'm still a dummy ... lol ... TC ... X

 

Its been 13 years since Cheney published anything and even then he was a co-author because he was contributing patients to the study. What we're really missing are papers elucidating his own theories and showing his own results. Last year a mother of a child with CFS got her theory published in a review journal; if she can do that then Dr. Cheney certainly could. Real studies are alot harder to pull off - but at the very least I would think a theory paper is appropriate. He's got alot of interesting ideas - it would great to see a formal paper from him.

Hey I think gut problems could do it; in fact one of the CAA's intertwined group of studies puts gut problems right smack in the middle of the whole thing.

 

Hi Cort,

I am fairly sure that there was one study on mercury and CFS. It was an Australian study, I think in the 90s, and concluded that mercury poisoning does not cause CFS. What they didn't look at was whether or not it is either exacerbated by CFS (poor detox) or contributes to symptoms.

Bye
Alex

Mitochondria, mercury and other heavy metals and I'm sure there are others exemplify the huge divide between many ME/CFS doctors and the research world. I don't think there's been one study that looked at heavy metals and CFS. I'm also certain that mercury plays a role in CFS for me - but not one study has looked at that. Its kind of amazing that a disconnect there is.

 

I would entirely agree that there's been far too little research on this and other theories - why we all need to band together and support everybody who's working in this field.

You're so right about banding together and speaking out.

In the 1990's Dr. Natelson and SueAnn Sisto put patients thru published exercise studies measuring immune function, hormone responses, cognitive function but no markers were found. Some concluded PEM was psychosomatic--patients "thought" they couldn't exercise, adopted "avoidance" behaviors, became "deconditioned" for which GET was the solution.

We need to ensure researchers understand PEM and look for its physiological cause.

Gemini

 

Its been 13 years since Cheney published anything and even then he was a co-author because he was contributing patients to the study. What we're really missing are papers elucidating his own theories and showing his own results. Last year a mother of a child with CFS got her theory published in a review journal; if she can do that then Dr. Cheney certainly could. Real studies are alot harder to pull off - but at the very least I would think a theory paper is appropriate. He's got alot of interesting ideas - it would great to see a formal paper from him.

Hey I think gut problems could do it; in fact one of the CAA's intertwined group of studies puts gut problems right smack in the middle of the whole thing.

good point ... I'd love to see this from Cheney, Klimas, Lapp, etc ... They've certainly been at this for a long time.

I'm leaning heavily towards gut problems + nutritional deficiencies leading to CFS/ME and other chronic illnesses too. I've been researching gut bacteria lately and it appears to be more relevant than I realized in terms of neuro symptoms. I'd be giddy if it turned out that all I needed was some bacteria or fungus that would allow me to eat what I wanted ... : ) ... X

 

As Cort mentioned there have been several research papers in the last several years that have implicated the complement system (specifically C4a) in PEM. Here's a link to the board discussion of one of these recent articles:

http://www.forums.aboutmecfs.org/sh...ment-C4a-and-interleukin-1β&p=78566#post78566