How Walking to Bathroom Can Be Harder Than Running a Marathon: One Doctor's Answer

[Cort]

A doctor with severe ME/CFS "exercises" and then does blood lactate tests and discovers something extraordinary.

It's a long article - some excerpts are below.

https://sciforschenonline.org/journals/neurology/JNNB-1-112.php

I LOVE how he describes himself

Prior to falling ill with pneumonia, which triggered my ME, I was fit and well, was hardly ever ill and was very sporty. I do not smoke, and hardly ever drink alcohol. I have a brown belt in judo; I’m a former Dutch national field hockey champion, captain of my team; I ran marathons (PB: 3.05), half marathons (PB: 1.19), and competed in quarter triathlons.

I do not have a history of an autoimmune disorder, MS, psychosis, major depression, heart disease, thyroid-related disorders or any other chronic illnesses apart from ME, I had a very happy childhood, no childhood traumas, I’m not a perfectionist, I do not suffer from anxieties, mental health problems were excluded by a consultant psychiatrist and there are no confounding factors influencing my ME.

This is what happened to him (talk about sudden onset)

I developed ME after picking up pneumonia from a patient, who coughed me in the face, and during the first few weeks of falling ill with ME, my legs needed 15 minutes to recover from walking 20 to 30 yards, before I could walk the same trivial distance again, which illustrates the abnormally long periods of rest to recover from minimal exertion. In the days before I developed ME, walking that distance was easy, even though I was still recovering from pneumonia, coughing a lot and still on antibiotics.

So suddenly, from one day to the next, I lost about 70- 80% of power in my legs, about 50-60% of power in my arms, I began to suffer from severe dizziness, I started to have daily headaches, from which I had never previously suffered, and I started to have problems sleeping for no reason, which I never had before either. The problems with walking were even stranger because I looked well, I didn’t feel ill and before the pneumonia I was fit and well, I was hardly ever sick and shortly before I fell ill with pneumonia, I was running 3-4 times a week, with a long run of 20 to 25 km on Sundays and I do not smoke and hardly ever drink alcohol.

............

The pain and symptoms in my legs after a trivial walk feel very similar, albeit a lot worse, to the muscle symptoms I had in the past after a very strenuous training, and the objective therefore was to try and identify the underlying bioenergetic muscle problem in ME, responsible for the exercise intolerance, rapid muscle fatigue and delayed muscle recovery.

He measured his creatine kinase (CK), inorganic phosphate (Pi) and lactate before and after exercise. The exercise this former athlete engaged in? Walking 5-6 yards from his bed to the bathroom.

His normal CK levels indicated that there was no sign of muscle damage and the normal inorganic phosphate means that inorganic phosphate was not responsible for the delayed muscle recovery. His lactate levels before his little walk were normal; after it, however, they were abnormally high. In fact they were so high that they were beyond the level at which healthy people would stop exercising.

Surprisingly another burst of lactate showed in his blood about 30 minutes later. That means his muscles were either producing so much lactate that they couldn't get rid of it early or that his cells are so miserably poor at removing it that even 30 minutes later they still had not gotten rid of it (or both). Of course lactate produces muscle pain, etc.; so his muscles were in pain while the lactate was present in them. ....all from a 5-6 yard walk...His lactate levels were higher than most professional athletes will never reach during the most strenuous exercise. .Remember - his lactate levels were normal at baseline...

This will blow you away

It might sound strange but walking back and forth to the toilet is more difficult than running a marathon. However if you see my lactate levels of 8.0 mmol/l around the 5 minute mark, and 11.8 mmol/l around the 30 minutes mark, both produced by the same exercise, it means that the actual lactate production for this very trivial exercise is 19.8 mmol/l. That is a level that many professional athletes will never / not often reach and that sort of level of lactate makes it easy to understand why this trivial walk is so strenuous an exercise for me and more difficult than running a marathon.

 

[JennyJenny]

I can't get on board with this. I think it needs to be studied but I am not convinced. One patient?

Someone with Leukemia who gets into a bad car accident and bleeds to death from internal bleeding both had deadly blood problems but there isn't a connection.

This patient could have another issue that is producing too much Lactic Acid along with his ME/CFS. Not a co-morbid or direct link, just another issue. I think 25 ME/CFS patients in a study would be more telling, not this. Studies like this get us into trouble because everyone has an AH HA! moment.

I believe they have done biopsies of our muscles in the past and this has never come up. But, throw it into some other exercise study like the one they are doing with follow up MRI's, pull muscle biopsies and blood tests.

 

[Cort]

I can't get on board with this. I think it needs to be studied but I am not convinced. One patient?

Someone with Leukemia who gets into a bad car accident and bleeds to death from internal bleeding both had deadly blood problems but there isn't a connection.

This patient could have another issue that is producing too much Lactic Acid along with his ME/CFS. Not a co-morbid or direct link, just another issue. I think 25 ME/CFS patients in a study would be more telling, not this. Studies like this get us into trouble because everyone has an AH HA! moment.

I believe they have done biopsies of our muscles in the past and this has never come up. But, throw it into some other exercise study like the one they are doing with follow up MRI's, pull muscle biopsies and blood tests.

There's a good amount of evidence for increased lactate production in ME/CFS actually. He points them out in the paper.

 

[JennyJenny]

There's a good amount of evidence for increased lactate production in ME/CFS actually. He points them out in the paper.

Well, I use WOT which is a site reputation report system and people rate the site and it came up with a RED alert. To me this is a "scientific" site that will accept just about anything reported. I have never seen a medical/science journal site with even a YELLOW indicator even though people in general might not like them, like I have seen people say things about PubMed but it still comes up GREEN.

I have heard this theory before but there is no real hard research proving it. What they have found is that we can be in pain and test results show lower than normal lactic acid. I just watched a video on it that covered it very briefly. Basically the doctor was saying that our pain is connected to cellular electrical impulses due to Mitochondrial DNA malfunction and Cytokines but not Lactic Acid.

 

[Tina]

Hmmm... Well, what I can say is what he describes about the lactic acid fits for me. I have said for a long time, especially with my quads, that everyday they feel like I had a major workout when in fact I haven't. Most days I pace by limiting my walking and walking slowly when I do.

His statement, "The pain and symptoms in my legs after a trivial walk feel very similar, albeit a lot worse, to the muscle symptoms I had in the past after a very strenuous training"

After a certain point my legs become so heavy they feel like I have weights strapped to them.

 

[Cort]

Well, I use WOT which is a site reputation report system and people rate the site and it came up with a RED alert. To me this is a "scientific" site that will accept just about anything reported. I have never seen a medical/science journal site with even a YELLOW indicator even though people in general might not like them, like I have seen people say things about PubMed but it still comes up GREEN.

I have heard this theory before but there is no real hard research proving it. What they have found is that we can be in pain and test results show lower than normal lactic acid. I just watched a video on it that covered it very briefly. Basically the doctor was saying that our pain is connected to cellular electrical impulses due to Mitochondrial DNA malfunction and Cytokines but not Lactic Acid.

Thanks for the tip on the journal that was good to know. The paper didn't show up in PubMed at all but I'm not surprised - it was an N of 1 study done by a doctor not a researcher. It was a personal study but there is evidence of increased lactate in ME/CFS and the findings make sense given what we know of aerobic and anerobic energy production problems in ME/CFS... I like it!..

 

[Cort]

Thanks for the tip on the journal that was good to know. The paper didn't show up in PubMed at all but I'm not surprised - it was an N of 1 study done by a doctor not a researcher. It was a personal study but there is evidence of increased lactate in ME/CFS and the findings make sense given what we know of aerobic and anerobic energy production problems in ME/CFS... I like it!..

The CDC is studying blood lactate levels in ME/CFS after exercise in its multisite studies; that is, if it still has a budget next year.

 

[JennyJenny]

It is really a "signaling" problem. Prof. Alan Light 5:20 & 6:44 speaks about the pain. https://www.youtube.com/watch?t=45&v=HkMBIkNGCqA

He is a little hard to understand but basically he is saying the pain is from bad signaling.

If you watch the entire video 14min. or so, it really stays central to Cytokines, RNA, signaling problems and Neurons.

 

[JennyJenny]

The CDC is studying blood lactate levels in ME/CFS after exercise in its multisite studies; that is, if it still has a budget next year.

The budget. The only hope for CFS is that they just push through last years numbers and from what I hear they can do that and just dump this whole bill and I think they say they have done that in previous years. But, I have a feeling this is the year they are going to accept this whole new budget meaning... for years to come ME/CFS/SEID is not getting back onto the books.

 

[Cort]

It is really a "signaling" problem. Prof. Alan Light 5:20 & 6:44 speaks about the pain. https://www.youtube.com/watch?t=45&v=HkMBIkNGCqA

He is a little hard to understand but basically he is saying the pain is from bad signaling.

If you watch the entire video 14min. or so, it really stays central to Cytokines, RNA, signaling problems and Neurons.

He could be right! I love Alan Light!

 

[Cort]

The budget. The only hope for CFS is that they just push through last years numbers and from what I hear they can do that and just dump this whole bill and I think they say they have done that in previous years. But, I have a feeling this is the year they are going to accept this whole new budget meaning... for years to come ME/CFS/SEID is not getting back onto the books.

We'll see. What's his names resignation may mean the House will not try to force a govt shutdown and back off on their budget cuts. My guess that Boehner fell on his sword to ensure that a govt shutdown will not occur in an election year. One theory is that that budget was a Republican ploy to shut down the govt although why they would want to do that is beside me.

 

[Cort]

I even did a blog on the paper

• http://www.cortjohnson.org/blog/2015/09/25/walking-marathon-me-cfs-case-study/

We'll see how it turns out

 

[tatt]

I think it's interesting. Of course a study of one patients doesn't prove a thing but many medical discoveries come about from observing something odd and investigating it further (penicillin being the well known example). Also sports experts query how important lactate is in fatigue http://www.sport-fitness-advisor.com/lactic-acid.html

The machine in the uk costs £200 but the test strips £35 and are only valid for 2 months. I probably wont pay that as I cant see a long term benefit but I'm thinking about it.

Meanwhile maybe things like stretching, breathing exercises (since oxygen seems to be important) and lactate buffers http://www.getridofthings.com/health/athletic-health/get-rid-of-lactic-acid/ might enable a little more activity.

Sports researchers are worth watching

 

[Cort]

I think it's interesting. Of course a study of one patients doesn't prove a thing but many medical discoveries come about from observing something odd and investigating it further (penicillin being the well known example). Also sports experts query how important lactate is in fatigue http://www.sport-fitness-advisor.com/lactic-acid.html

The machine in the uk costs £200 but the test strips £35 and are only valid for 2 months. I probably wont pay that as I cant see a long term benefit but I'm thinking about it.

Meanwhile maybe things like stretching, breathing exercises (since oxygen seems to be important) and lactate buffers http://www.getridofthings.com/health/athletic-health/get-rid-of-lactic-acid/ might enable a little more activity.

Sports researchers are worth watching

They certainly are...Thanks for the link

 

[Abrin]

Sports researchers are worth watching

I've been following some sports research lately and have been fascinated with how often the symptoms of over-training and the symptoms of ME cross over.

 

[Cort]

I've been following some sports research lately and have been fascinated with how often the symptoms of over-training and the symptoms of ME cross over.

Very similar. I guess the big questions are what is happening with these people and what percentage do not recover and what is different between them and those that do. I'll it would tie right into ME/CFS.

 

[minkey]

Does salt help - i take about 4 g /day but not sure if im doing myself any good or bad! Does salt alter blood pressire?