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Latest model on what CFS is, and implication for treatment

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
Interesting post from Ken Lassesen's blog...
Latest model on what CFS is, and implication for treatment

This is a statement of what my model is, which will revised(typically tuned) as more facts come:

CFS (and likely IBS and FM) is a case of mild to severe Lactic Acidosis. Lactic acid is typically produced exercising.
The associated change of pH has been attempted with various breathing techniques (I did Hale’s breathing during one onset of CFS, it was popular for a while) with some reduction of symptoms. By altering of pH alone by breathing is unlikely to address the root cause.
The cause of this lactic acidosis appears to be a shift of gut bacteria [2009] [1998] 2001] (see my earlier posts for more references). Gut bacteria is well known to shift due to stress, viral infections, bacterial infections, and even immunizations. In general, the shift returns to normal in > 99% of the cases, but 0.1 – 5.0% do not within 6 months (depending on infections), with roughly 50% of these returning in the next 6 months (with decreasing odds after that). The low incidence of the gut bacteria being stuck in a dysfunction often falls in the experimental error rate of studies and thus “no evidence”.

Lab results: With a shift of bacteria, the ability for bacteria to extract and process food is altered. In short, increases and decreases of amino acids, vitamins, minerals can all be explained by this — including contradictory results because the shift of bacteria will not be identical for all CFS patients.

He makes some treatment recommendations in the remaining part of the blog post.
 
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Bansaw

Senior Member
Messages
521
The article goes on to suggest a protocol for shifting gut bacteria to achieve remission.
I've always believed it to be gut-related (at least for me). Trauma + infection(Typhus) + antibiotics = CFS for me, and I am convinced that restoring good gut balance is essential.
I sense that vitamins, minerals are not being extracted from my food and thats borne out by my mineral test results.

She mentions fasting as a way of starving the unwanted bacteria. Thats hard. I tried a two-day fast last week and it was hard on my body, keytones, got very cold. I wonder if there is a certain diet that encourages the right gut microbiome?

"Lactobacillus acidophilus"
Darn, so I guess thats my Kefir out then? And dairy products to be avoided?
 

Gondwanaland

Senior Member
Messages
5,092
Darn, so I guess thats my Kefir out then? And dairy products to be avoided?
Do not avoid food that makes you feel good just for a principle. I went to hell for going dairy free. I definetly can't get enough calcium out of vegetables - probably the same issues as you mentioned -
I sense that vitamins, minerals are not being extracted from my food and thats borne out by my mineral test results.
much better now eating dairy again (no milk though)
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Latest model? Latest version of an extremely old idea maybe. I recall discussing this many times.

The evidence does not stack up.

My own model, circa 1998-9, was also a hypoxia model, though via a different mechanism.

Lactic acidosis, when chronic, is fatal. There is a shift in oxygen dissociation, followed by death. Very low levels of lactic acid are metabolized in most cases very rapidly. I have yet to see convincing evidence that we have that problem.

We do have an issue with lactic acid clearance from muscle etc. We do make too much lactic acid during activity. There is a claim, and I am still waiting for Julia Newton to publish this (or did I miss it?) that we are alkaline at rest. In other words, we overcompensate for excess lactic acid.

One implication of this might be that pushing an ME patient into overactivity, constantly, could result in lactic acidosis and death.

Its also implied by Julia Newton's research with muscle tissue removed from the body that this problem continues. In the absence of gut bacteria. In adequate oxygen.

What is more likely from a shift in gut bacteria, if that is a cause, is that it causes either mitochondrial damage or an epigenetic shift to compensate for something.

Similar arguments count against central models of ME, psychogenic models, and brain infection or inflammation models. They still have to account for long term changes in muscle metabolism even when removed from the body.

That does not mean that lactic acid is not an important part of the problem. Its just not the whole problem, unless there is something important missing.
 
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bsw

w/r/t
Messages
45
I recently found out that low stomach acid (or Hypochlorhydria) is common among CFS sufferers, people with celiac or gluten intolerance and other illnesses. (Keep in mind that the only source I could find for it being common among CFS sufferers was on Sarah Myhill's site, so take it with a grain of salt.)
Finding out low stomach acid is common among CFS sufferers was extremely important as it explained why I felt so much better in the morning before eating. It also explained the bizarre stomach upsets I was constantly having and the constant constipation.

I think that failure to properly absorb nutrients is the essential problem with CFS. Once you fix that, everything else becomes much easier.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
I just want to put in a good word for Ken Lassesen. I met him in 2005 when I joined the local support group, and can testify that he is a man FULL of energy, and a really nice guy. You may not agree with his various protocols (and I don't agree w/everything either -- as we're all different), but I can assure you, he's the real deal.

The last time I saw him in person was probably fall 2011, when we agreed to meet for dinner. He had walked up the hill from Amazon -- probably a 4-5 mile walk -- and was ready to walk another six-seven blocks up to the restaurant until I told him I couldn't do it and we'd have to take a cab.

And while he relapsed in the spring of 2012 (complete with abnormal spect scans), he recovered again (or went into remission) in about 8 months and went back to work, full of energy in his mid-60's, but also fully cognizant that too many stressors could cause another relapse.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I do not doubt that Ken Lassessen is a really nice guy but what is quoted from the blog makes no scientific sense. It is just bits of science ideas all muddled up with no understanding of what they actually mean. Science does not work by seeing the same word in two sentences and saying 'aha that must be it'! You actually need to understand the processes involved.
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
I do not doubt that Ken Lassessen is a really nice guy but what is quoted from the blog makes no scientific sense. It is just bits of science ideas all muddled up with no understanding of what they actually mean.
I should mention that he suffers from ME/CFS and has put himself into remission at least 2 times. So he has a lot of n=1 experience to back up his theories, which actually counts for a lot in my book.

No offense, but you guys don't even seem to understand the mechanism behind why Rituximab is effective in some patients. How does that square with the "need to understand the processes involved"? If something works, does it really matter if it's supported by scientific evidence? Seems like most of the progress that patients have made with this illness, has been by trial and error n=1 experiments anyway. Science and medicine have only been of marginal help as far as I'm concerned.
 
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Jonathan Edwards

"Gibberish"
Messages
5,256
I should mention that he suffers from ME/CFS and has put himself into remission at least 2 times. So he has a lot of n=1 experience to back up his theories, which actually counts for a lot in my book.

I mean, no offense, but you guys don't even know why Rituximab is effective in some patients. How does that square with the "need to understand the processes involved"? If something works, does it really matter if it's supported by scientific theory or papers?

At least we know that rituximab removes B cells and that if it does produce a response that is likely to be the way it does it! We understand a lot about how B cells are made, what they do and how long they live etc. This lactic acid stuff does not even join up at a basic biochamical level. There is confusion between lactic acidaemia (high lactate) and acidosis, which is then muddled with respiratory alkalosis from overbreathing and again muddled with lactate metabolism in bacteria in the gut which as far as I can work out has nothing to do with lactate in muscle and exhaustion at all.

So the difference is that for rituximab we are using what is known in science as a basis for understanding mechanisms, but what is being used here is not what is known in science, just adding together sentences with the same words in to be honest.

The problem with 'if something works' is that we have no idea what it was that worked. If I think bacon fat is bad for my heart I might get better from not eating bacon - but because I am not eating so much salt and my blood pressure improves. And there are all sorts of versions of the placebo effect where something works because cortisol levels go up a bit or something like that completely unrelated to what is being used as the treatment. N=1 does not back up any theories, it just backs up what happened at that time. And even if it might suggest that if you do the same thing you might get the same result another time but that has nothing to do with theorising, it is just an evidence base - those two often get confused.

To test a theory you have to make predictions about steps along the way that you could test with blood samples or some such. And the further problem with the lactate theory here is so garbled that one could not actually predict anything from it. The biochemistry does not actually follow real biochemistry. With respect there is all the difference in the world between this and what the Norwegians are doing. This is a bit like playing Scrabble and making up words to fit the letters you have on your rack. You are not really playing Scrabble.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Interesting post from Ken Lassesen's blog...


He makes some treatment recommendations in the remaining part of the blog post.

For me personally I have a lot of problems with accepting that gut bacteria is the cause of my ME. When the disease struck it was an acute onset upper respiratory tract / serious flu. There were no gut symptoms.

I didn't get any gut problems until after the rounds of antibiotics to fight the repeated tonsillitis and other infections after that ME onset in the first 2 years . Then a course of antidepressants (supposedly to help pain and sleep - but they didn't) caused new stomach problems.

Fasting makes me much worse and doesn't provide any short term relief
 

Jonathan Edwards

"Gibberish"
Messages
5,256
The reply to a question on the blog even explains how rituximab works! It reminds me of a five year old kid wearing a bow tie and a white coat and mad scientist glasses explaining how Martians fly their flying saucers through wormholes using superconductivity. It would do well for a Monty Python sketch. I am sorry to be so snooty but it would be nice to think that stuff that gets aired on PR made at least some sort of sense and I would hate to think that any patient took this seriously. I don't mind magic. If I was ill I might well kiss the Madonna of the Rosary. But science has to be science to be science and this isn't.
 
Messages
19
N=1 does not back up any theories, it just backs up what happened at that time. And even if it might suggest that if you do the same thing you might get the same result another time but that has nothing to do with theorising, it is just an evidence base - those two often get confused.

To test a theory you have to make predictions about steps along the way that you could test with blood samples or some such. And the further problem with the lactate theory here is so garbled that one could not actually predict anything from it. The biochemistry does not actually follow real biochemistry. [...] This is a bit like playing Scrabble and making up words to fit the letters you have on your rack. You are not really playing Scrabble.
Are there any layman's guides to designing better experiments? I enjoy experimenting on myself but I'm aware how worthless the results of trying something are, due to the placebo effect mostly, and because my knowledge of biochemistry is lacking (mostly gleaned from this forum, synthesising different viewpoints until one pov seems common).

It'd be great if I could turn this hobby into something for the greater good.
 

Effi

Senior Member
Messages
1,496
Location
Europe
Are there any layman's guides to designing better experiments? I enjoy experimenting on myself but I'm aware how worthless the results of trying something are, due to the placebo effect mostly, and because my knowledge of biochemistry is lacking
hi @Beagle
there's a group of people on PR talking about possibly doing an informal study of blood lactate levels, using a lactate meter at home and then gathering everyone's data. For more info see this thread:
http://forums.phoenixrising.me/inde...-study-to-measure-blood-lactate-levels.40152/
 

knackers323

Senior Member
Messages
1,625
I recently found out that low stomach acid (or Hypochlorhydria) is common among CFS sufferers, people with celiac or gluten intolerance and other illnesses. (Keep in mind that the only source I could find for it being common among CFS sufferers was on Sarah Myhill's site, so take it with a grain of salt.)
Finding out low stomach acid is common among CFS sufferers was extremely important as it explained why I felt so much better in the morning before eating. It also explained the bizarre stomach upsets I was constantly having and the constant constipation.

I think that failure to properly absorb nutrients is the essential problem with CFS. Once you fix that, everything else becomes much easier.

@bsw what do you mean by the myhill thing? Is she thought of a bit of a quack?