Chronic Fatigue Syndrome

[Blade_Runner]

Three years ago I developed CFS. For people who don't know much about it, it's a life killer. One moment you're physically fit and feeling invincible, then suddenly you go down with a cold and feel constantly tired. You never seem to be able to shake the cold symptoms off. After being shoved into a hostile environment (after many years of a peaceful paradise) your grades suffer, your self-esteem goes down to zilch and you feel practically suicidal.

Looking back, I have my suspicions that the Aspergers had a large to play in it. I only found out about it February this year. Some analysing came up with some interesting results:

1. We aspies like our routine - brought up and lived on a farm for 16 years and lived in the middle of no-where. Uprooted and packed into a tiny house in the nearby town.

2. School after 7 years home ed. Teachers who know nothing and get distracted way too easily. Peers who were complete and utter d*cks to put it mildly.

3. Seeing grades fall after success and wondering why...

At the time, I thought I was coping rather well but looking back I basically died - the former "me" disappeared. Now I have to try and rise like a phoenix from the ashes.

Anyone had a similar experience? Just thought it would be an interesting observation.

 

[Franco]

I got CFS at the age of 31. It was the result of years of excessive workload and related stress, which progressively wore me out to the point where one of the typical influenzas I got in winter triggered CFS. It had moderate severity for 2-3 years, in which my quality of life was awful but I was able to keep my full-time job, then mild severity for another 5 years, and then became "latent", in that I do not have symptoms if I carry on a low-energy, relaxed, stress-avoiding lifestyle.

For the first years the symptoms were just a you said, a "flu-like" state whose intensity varied according to my past energy expenditure and exposure to stress. I called it the "pseudo-flu" to distinguish it from the real flu, the difference being that the pseudo-flu did not involve mucosity production in the lower respiratory tract.

In my view, the conceptual framework that correctly describes the etiology and pathogenesis of CFS is the theory proposed in 2000 by Martin Pall, Professor Emeritus of Biochemistry and Basic Medical Sciences, Washington State University. His site is:

Novel Disease Paradigm Produces Explanations for a Whole Group of Illnesses

Within the site, the pages that are most relevant to you are:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome as a NO/ONOO- Cycle Disease

Therapy

He also summarized the theory in this article:

Can We Cure NO/ONOO (Feb/March 2010) Townsend Letter for Doctors & Patients

You will see that it's all about molecular biology. Depending on your background, you might find the subject somewhat dense, and perhaps you might feel somewhat overwhelmed by the portfolio of nutraceutical supplements that may be helfpul. If that's the case, and you would like me to provide a summary of the theory and a shortlist of supplements, let me know. But I advise you to do your own diligence and try to understand this info by yourself as far as you can. Because, from your epistemic viewpoint, I'm just a guy with a keyboard. (Hey, that's a cool message signature!)

 

[Blade_Runner]

I got CFS at the age of 31. It was the result of years of excessive workload and related stress, which progressively wore me out to the point where one of the typical influenzas I got in winter triggered CFS. It had moderate severity for 2-3 years, in which my quality of life was awful but I was able to keep my full-time job, then mild severity for another 5 years, and then became "latent", in that I do not have symptoms if I carry on a low-energy, relaxed, stress-avoiding lifestyle.

For the first years the symptoms were just a you said, a "flu-like" state whose intensity varied according to my past energy expenditure and exposure to stress. I called it the "pseudo-flu" to distinguish it from the real flu, the difference being that the pseudo-flu did not involve mucosity production in the lower respiratory tract.

In my view, the conceptual framework that correctly describes the etiology and pathogenesis of CFS is the theory proposed in 2000 by Martin Pall, Professor Emeritus of Biochemistry and Basic Medical Sciences, Washington State University. His site is:

Novel Disease Paradigm Produces Explanations for a Whole Group of Illnesses

Within the site, the pages that are most relevant to you are:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome as a NO/ONOO- Cycle Disease

Therapy

He also summarized the theory in this article:

Can We Cure NO/ONOO (Feb/March 2010) Townsend Letter for Doctors & Patients

You will see that it's all about molecular biology. Depending on your background, you might find the subject somewhat dense, and perhaps you might feel somewhat overwhelmed by the portfolio of nutraceutical supplements that may be helfpul. If that's the case, and you would like me to provide a summary of the theory and a shortlist of supplements, let me know. But I advise you to do your own diligence and try to understand this info by yourself as far as you can. Because, from your epistemic viewpoint, I'm just a guy with a keyboard. (Hey, that's a cool message signature!)

Thank you for the feedback. It's great to know I'm not the only one. Ever since I realised I had ME/CFS I have been doing a lot of research into recovery methods. Supplements have made a real difference:

Magnesium
Buffered Vit C
D-Ribose (absolute life-saver)

I'm also trying to "pace", work through emotional baggage etc. So yeah, things are looking up at last

I'm really pleased that you recovered to a manageable stage.

 

[EvilPasta]

Yea I think I got something similar to that just before and during my prison stay. I had long suspected that I had aspergers but never went out of my way to get it diagnosed until I was inside. Part of me being in there was drug related and basocally I couldn't understand the world and wanted to turn off my brain so all the dowbers I couldanage then went into disassociatives. But over that period and the first half of my prison stay I was just a slotg, didn't want to do anything. But one day I asked some help from one of my friends in there and asked him to train me to lose weight. I lost 24 kilos in 12 weeks, it was the best feeling, and I was doing it in a good environment (for me), cause everything was routine there, everyday was the same and I loved it. A big part of me wants to go back Cause it feels like I'm falling into bad habits and there is no routine to my life, I don't know maybe I just needed to spout my feelings a little bit.

 

[Franco]

It's great to know I'm not the only one.

If learning of other aspies with CFS feels good, you can re-live that experience many times over by reading the following links, all of which have the pattern:

www.wrongplanet.net/string.html

with string = { postt44912 , postt106141 , postt124477 , postt169579 }

FWIIW, when I compiled those links I made a note on the first (44912) that user "Curiosity" was "exactly my case".

Supplements have made a real difference:

Magnesium
Buffered Vit C
D-Ribose (absolute life-saver)

If you learn the Pall theory, you'll see that the problem is that the body produces a toxic substance, ONOO-, that has two main effects:
- it impairs energy (ATP) production, hence the lack of energy and the "F" in "CFS",
- it activates several positive-feedback mechanisms that lead to the establisment of vicious circles that perpetuate ONOO- production, hence the "C" in "CFS".

You can deal with the energy-production impairment caused by ONOO- in two non-mutually-exclusive ways:
a. bring down the production rate and level of ONOO-
b. optimize the working of mitochondria, so that, for any given level of ONOO-, you can produce more energy.

The Pall-suggested protocol goes way a. The protocols of doctors such as Myhill and Teitelbaum go way b.

Way a is way (pun-intended) preferable to way b because the damage caused by overproduction of NO & ONOO-, which can be described as a state of intra-cellular inflammation, is not limited to impairment of energy production but also plays a key role in the development of cancer, Alzheimer, diabetes, and several other diseases.

Of the supplements you are taking, Vit C works way a. Magnesium and D-Ribose work way b.

Notably, there are a couple of supplements that work in both ways: Coenzyme Q10 and NADH. (As I have already recommended Coenzyme Q10 to IbiPatria to help with her malnutrition-derived heart and kidney problems, you could rightly suspect that I am a professional advertiser for the Coenzyme Q10 manufacturing industry, acting in many forums under an appropriate disguise in each.)

For way a, one of the best substances is green tea. However, NEVER take supplements of green tea extract, as they can cause liver failure. This is not a problem of quality of impurities, but is a side effect intrinsic to high intakes of the active compound (catechin) in green tea. Up to 5 cups a day is fine, more than that causes sleep problems.

Regarding D-Ribose, even though it is heartily recommended by Dr Teitelbaum, it is immediately evident from published peer-reviewed scientific papers that there is a high risk that, over time, it turns out to be an absolute life sinker instead of a life saver. To see why, you have to learn the following concepts, in that order:

1. Glycation (non-enzymatic glycosylation), the Maillard reaction, and Advanced Glycation End products (AGEs)

2. Relative glycation potential of ribose, fructose and glucose (hint: ribose's is the highest)

3. Role of glycation and AGEs in neurodegenerative diseases:
The sour side of neurodegenerative disorders: the e... [J Pathol. 2010] - PubMed - NCBI
Advanced glycation end products and neurodegene... [J Neurol Sci. 2012] - PubMed - NCBI

4.Specific findings about D-Ribose on this subject:
Rapid glycation with D-ribose induces globular... [BMC Cell Biol. 2009] - PubMed - NCBI
Ribosylation rapidly induces alpha-synuclein to for... [PLoS One. 2010] - PubMed - NCBI
D-ribose induces cellular protein glycation and imp... [PLoS One. 2011] - PubMed - NCBI
D-ribose in glycation and protein aggre... [Biochim Biophys Acta. 2012] - PubMed - NCBI

4.1. It even glycates DNA!
Bio-physical characterization of ribose ... [Int J Biol Macromol. 2013] - PubMed - NCBI

And to add more fuel to the fire:
5. Receptor for Advanced Glycation End products (RAGE) and its role in neurodegenerative diseases:
The sour side of neurodegenerative disorders: the e... [J Pathol. 2010] - PubMed - NCBI

6. Relative binding affinity to RAGE of proteins glycated by ribose, fructose or glucose (guess which has far higher binding affinity):
Advanced glycation end product ligands for the ... [Anal Biochem. 2004] - PubMed - NCBI

 

[Thea]

Yeah, I recently developed CFS. Got IBS with it too.

 

[Dwayne]

I got Lyme-induced CFS about 10 years ago and it just gets worse.

 

[blue_bird]

I'm not sure if I have CFS or not, but I'm basically tired all the time. It's probably related to my meds, but I'm not sure.