Newbie Aspie Male, Age 39

Also, The Beast (from The Chase) saying, "Go with ya gut!"

This discussion reminds me of Yakult ad, where a Singleton dates a Physics Nerd.

It's more subtle than just adrenal glands - it's all about us being basically the same as monkeys in the forest - low stress most of the time until the tiger jumps out - the body goes into hyper-drive - cortisol, adrenalin - everything kicks off - shutdown unnecessary systems and prepare for damage control / bleeding and to ignore pain and - things like tunnel vision, immune-system switch-on, speeded up thinking and - voiding of bowels to dissuade the attacker - and then if they survive, it's back to normal stress-free life again.

Unfortunately, us aspies do it totally backwards - we're all about stress, stress, stress, stress and then a few hours of relaxation - and then back to the stress-grind again the next day and the next - it soon completely wrecks the body - from there on, you're just painting over the rust.  

Also remember seeing something about there being experimentation with rats on reducing stress hormones. The things ontop of the kidneys produce stress hormones so the experimentation simply removed some of those glands.

While I admire your in-depth analysis of your position, I'd disagree with you - There's a lot of thought into linking the gut with the brain - like a second mini-brain - so stress is the key to almost all gut-related issues being triggered - how the biology works from that is just fire-fighting trying to rebalance the damaged system - things like Tumeric would need to be taken in unmanageable volumes to actually have any effect.

Stress does really bad things in your body - and as aspies can't process stress, we're screwed.     bowel and digestion problems are really common for us..

From an engineering perspective I'm also wondering whether the Corona effect exists in neurons and conduction pathways in the brain too... possibly from either an over-volting incidence/scenario or from demyelination effects caused by lack of nutrient absorbtion or perhaps demyelination caused by something else in the myelination process being hampered in some way :/

Pan-nerdist, definitely a term I'm going to unapologetically steal from you!

When it comes to managing CFS symptoms I'm determined to get back to a "normal" lifestyle for the 2nd time as I've managed it once before

I've read quite a lot about the subject but ultimately the best medical scientific minds don't yet appear to understand the causative mechanisms at play or how to counteract them so ultimately that's made me look in slightly different directions I guess.

Most of my problems I believe started with the gut so that's where I am focussing my efforts. And this seems to align with what some doctors are now starting to believe about Autism too, that it's caused or impacted largely by the species of bacteria in our guts.

So this is quite a complex issue, because "healthy" people in African tribes for example have MANY more strains of bacteria in their guts than we do in the western more civilised world....

There is always a battle happening in our bodies between competing bacteria, each using the foods we feed our body as fuel to support them in gaining or losing ground in that fight to become the dominant bacteria inside us. So for example when we eat lots of carbs we feed the carb thriving bacteria and starve the other types of bacteria, and when we eat lots of greens we feed all the green eating bacteria and starve the carb eating bacteria.

Whenever we change our diets significantly we end up starving a lot of the existing bacteria which leads to their ultimate demise, and when bacteria die they release toxins which our bodies really struggle to get rid of... and about 15% of people apparently are simply unable to remove these toxins at all. These toxins are called cytotoxins which are eliminated by the liver if possible.

So as well as eating a "healthy" diet, consisting of lots of green foods such as spinach and cabbage and peas etc I also try to provide some support for the liver too, which can include things like Milk Thistle, Tumeric etc.

Ultimately the bacteria is causing a problem because it is either absorbing the nutrients our body's need thus resulting in vitamin and mineral deficiencies in our body cells.... or the chemical excretions from the bacteria present is causing unwanted chemical interractions in our cells or perhaps even brains, similar to how other chemicals such as those in magic mushrooms etc cause the effects they have on the brain :/

So the way I think, there seems to be a few trains of thought here...

1) The bacteria present is the wrong bacteria so we must somehow make our bodies become more dominated by different more healthy bacteria.

2) The bacteria is a problem so simply remove all of it... including the yeasts etc too which are much harder to get rid of.

Hmmm I need to eat now but I hope this provides an insight into how I try and manage my symptoms.

But one thing I will say is I believe everything is cause and effect. And people with ME/CFS seem to go through periods of apparent remission and relapse... so I believe they are causing these positive and negative effects in their bodies somehow... it's just that nobody knows how they are doing it yet.

Personally I got back to a very good place... a much more normal place once before and I managed to sustain my body in that good place for about 18 months before declining again. And the approach I took was to try and completely wipe out all the bacteria and yeasts present in my body.

Why else might this have worked.... perhaps the immune system is always overactive in ME/CFS patients and so it over reacts to the bacteria and yeasts in our bodies and also other allergens like pollens, dust, household chemicals etc etc too... and not in an anaphylactic way, but a different way not yet understood.

All I know is I stopped feeding my body the sugary foods yeasts thrive off. I stopped eating Gluten containing foods because they prevent nutrient absorbtion, I stopped eating cows milk containing foods because I remember reading somewhere that most Gluten intolerances are caused by an initial dairy intolerance, and then with all those foods removed from my diet I started eating much more protein rich foods and green leafy foods and vegetables like potatoes, and supplementing with both Calcium and Magnesium as it was apparent these minerals were lacking in my diet.

It's not extremely scientific, but I got back into a much better place... we're talking from struggling to walk small distances, such as from the bedroom to the kitchen.... to walking miles each day, being able to exercise as much as I wanted without any negative fatigue effects etc.... then I changed my diet back to my old unhealthier diet full of bread and pasta and cakes and ice cream etc and within a few weeks I was nearly back to being bedridden again... then I switched my diet back to the one which had been working and within 2 weeks I was back to doing all the exercise again. So it's not scientific but from a simple cause and effect perspective it does seem like the diet caused those changes.

I'm not trying to remove all the bacteria from my body at the moment and haven't been trying for the past 2 years... because the way I was using can cause heart problems later in life, so my energy levels plummeted again. I've now started eating differently again and have made some positive gains so am hopeful they will continue.... after being in a place with hardly any energy for a few years it seems like the path to more energy always takes much longer than if the body has just crashed for a few weeks and then rebounded.... so this makes me wonder about the nutrient profiles WITHIN cells.... and it also makes me wonder about the health of the Mitochondria WITHIN cells too, as Mitochondria are essentially living organisms which reside inside our cells... so if they get damaged or die etc then I imagine it would take time for them to regrow to the numbers they once were or to repair themselves, and perhaps the Mitochondria cannot repair themselves and we have to wait for those affected human cells to die and be replaced... which if the problem was bodywide then I can imagine this repair process taking years as each and every cell in the body was replaced.....

anyway, this is how my brain works, and this is thedirection I have been focussing it in.

Also a professor called Ron Davis is worthwhile looking into and keeping an eye on as he is a well known successful professor of medicine whose son became very ill with ME/CFS and since then he's devoted his whole lifes work to making his son healthy again... and he does seem to be making positive steps to finding a pharmaceutical cure

Nice to meet you - I'm a pan-nerdist so pretty anything technical floats my boat - I used to manufacture radio pharmaceuticals with a well-known big company (very hands-on with the guts of cyclotrons)  but I have more than a passing interest in motor-sport - my friend manages touring car teams and is into a few other types of racing.    My fascination is with suspension systems and grip levels.

I'm into all planes and cars - embarrassing levels of nerdism there - and models - Technical Lego, RC, Airfix, Hornby - you name it.

How do you manage your CFS?

Nice to meet you. Also a fellow engineer here. If you want to share your knowledge on nuclear physics I'm more than happy to learn. I followed more of a motorsport path in life, although really wishing I'd continued down the medical route instead of being tempted by the engineering world 

Hiya

Welcome to the forum.

I'm an aspie bloke -  mid 50s - I, like you can do everything - I'm a CEng, nuclear physicist and rocket scientist -I developed ulcerative colitis about 20 years ago when my life was getting too complicated and I wasn't able to manage the stress.

I developed CFS some years ago after a period of unbelievable stress - it ruined my life and eventually cost me my job when I just couldn't manage full-on active days.     If it was a gentle, desk/computer day, I was knackered when I got home - an active day meant I couldn't get out of my car when i got home - sometimes had to crawl to the front door.

I left work 5 years ago (they paid me off) and since then, using my aspie super-power of organisation and measuring my body, I've found I can plan my energy consumption to do pretty much what I need to do and fit in the down-time in the gaps - but only if I run my calendar to my clock - I can't work to other people's schedules without a lot of preparation.       Planning a day out with friends means I need to pre-sleep and have a couple of quiet days before and afterwards to restabilise back onto my calendar.

On the plus side, in the last 5 years, I've completely refurbished a house - just in very small, well planned steps at a time.

It's all about managing the energy available vs. what you want to do.

there are loads of people here with autism here.  They will be more around > 6 pm 

welcome to this forum