[smearth]

I think conditioning medical students to race other medical students to label health problems quickly- efectively turning medical school into a sleep deprived game of trivial pursuit for competitive, high IQ, mentally resilient, energetic people - only prepares those people to heal simple medical conditions involving 1 or 2 body systems. This functionality is becoming largely replaceble by llm’s who are also competent at that level of system complexity.

The leading medical solution for CFS is pacing and a web link. Chatgpt could do that.

Once you are past a certain level of system complexity - root cause analysis becomes useless as changing one part of the system affects the other parts unpredictably.

I am diagnosed with CFS. Didn’t seek the diagnosis, denied it initially which is not the norm.I now pretend I don’t have it as that is the best way to cure it.

But beating it was hell as you literally get given an A4 sheet of paper explaining the condition when diagnosed. And your brain is exhausted after reading the sheet. But that is all you have.

So you are supposed to take that A4 sheet of paper and troubleshoot your way out of the condition when the instructions on the A4 sheet don’t even work.

The best way I can describe it is you find yourself in a shame riddled labyrinth, your brain doesn’t work, you are tired and in pain and you are told to accept your new normal.

There are ways out of the labyrinth. A doctor doesn’t have the map though.

The best way to describe chronic fatigue is extreme sensitivity to over exertion. You walk to the mailbox and 24 to 72 hours later your body reacts like you’ve run the boston marathon and the mind reacts like you’ve just pulled an all nighter to manually sort 7 tabs of 3 columns and 10,000 rows of a spreadsheet on a 17 inch monitor under time pressure while hung over, 3 days into the flu in order to resurrect hitler.

CFS exhaustion and brain fog can get triggered by any stress response. And it kicks in 24 to 72 hours after stress exposure.

The Doc says pacing and mindfullness will save you. Except it won’t.

The body can get stuck in unhealthy stable states. I always encourage people to look at the roche biochemistry chart (with about the same success rate as treatment plans for CFS) to understand that the body can be hypersensitive to overexertion (mental or physical) for an infinite number of combinations.

Fortunately there are a quite a number of things that you can do to escape the labyrinth.

- Explain to anyone that cares that there is a medical field dedicated to assessing levels of debilitation and that cfs is as debilitating as cancer. (Very few people care)

- get stable accommodation.

- Get a comfortable supportive bed to convalesce in.

- Eat a diet that minimises inflammation - deeply boiled veges, rice, potatoe or sweet potatoe, grass/algal fed free range protein, olive oil. Maintain steady blood sugar.

- Body strength train.

- Sort out a vitamin and supplement regime with a genetic analysis.

- Take an anger management course to understand the anger of others.

-Understand pain - the curable app on chronic pain management is highly beneficial.

- Learn to forgive. Resentment ruins health.

- Get a career you are capable of. Aim low.

- Get regular physical activity.

- Perform improvisational comedy to condition the mind to cope with an onslaught of public social pressure.

- Pretend you don’t have chronic fatigue syndrome.

What doctors get wrong ( it is hard for them to comprehend the condition as most aren’t susceptible as they were tough enough to get through medical school) is that chronic avoidance is the right strategy until your body can cope with stress without fatiguing.

It isn’t all in your head. I’d say ability to sideplank and neck strength are probably two of the most important recovery metrics. Drs don’t understand the psycho-somatic balance of the illness. There is a psychological component but it is a minor component and is driven by physical constraints.

The sad thing is that cfs is quite treatable but the medical profession says pacing and mindfulness is all one needs to cure something that is as debilitating as cancer.

You don’t need to be mindful to beat chronic fatigue syndrome. I think sarcasm is more beneficial when coping with a bleak future.

And I really like and admire Doctors - it’s not their fault that their system is terrible at creating healing treatment plans for complex chronic health conditions.

[GordonS]

I have CFS too, going on 8 years now. Small fibre neuropathy in my limbs too.

Aside from pain management (opioids, ketamine, cannabis), I haven't found anything else to be helpful, and pacing was the opposite of helpful.

You mentioned strength training... how is that possible? I don't know about you, but I have a constant, lactic acid-like burning sensation in my arms, which becomes much worse upon exertion - for example, if I life a kettle full of water, my arm is burning with a strong need to put it down within a few seconds.

[smearth]

Because the best way to think about the syndrome is that you are a really terrible athlete.

I find it a healthy way to reframe what I’m dealing with.

I laughed at Eric the Eel, he’s laghing at me taking out the rubbish now.

They say athleticism is a reduction in recovery period.

Combine this with the fact the brain burns loads of energy and certain aspects of the brain uses things like the inner ear and vagal nerves and lateral light receptors as specialised instrumentation to save processing power when coordinating one’s balance. (I swear one day they will figure out lying down in the dark convalescing can affect the potassium concentration of your inner ear to the point you get stuck in fatigue cycle but any how).

Keeping your head steady while walking saves mental energy. A stronger thoracic spine and neck keeps your head steady for longer with out fatiguing the muscles or the mind.

Everytime you overtrain there is a inflammatory cascade that goes with the overtraining. Building up physical body strength is the easiest way to generate athleticism.

Once you can recover without fatigue you don’t have chronic fatigue.

I also think stabilising the thoracic area helps get a neurogenesis/cellular regenerationtype response going in the spinal cord that was ravaged by a viral load.

Basically if someone is strong enough to recover from an illness they recover. If they aren’t they don’t. Hunching over screens for long periods with only stress holding you up before convalescing is probably the worst preparation for cfs. Accounting is the worst profession for it. Their low autonomy detailed complex work that is surveyed in 6 minute intervals so they have a large forced cognitive loads for a long time periods combined with minimal physical exertion. It is an anti-athletic career for a lots of people who struggle with the cognitive load.

But the docs are also right anout a psychological component - whinging doesn’t help, there is a grit component to getting better. There is also lots of overtraining while you get better which is helpful to understand. Recovery is 3 steps forward 1 step back. (My whole point is help the poor person in the brainfog choose the next best recovery step and I also understand it isn’t Drs fault they haven’t the tools to do it because there is no profit motive to create the recovery system). Exercise physiologists are really helpful for avoiding overtraining but I also think you are better taking some overtraining hits initially on the strength training side if you aren’t wealthy to get the body to the point that it escapes can escape some of the fatigue.

Strength train to at least the point of sideplanks and throw in lots of propioception band balance exercises. And remember there is 24 to 72 hour delay to overtraining. Docs do have extreme amounts of grit as do successful accountants. They are admirable but also lucky, their dopamine systems are genetically robust.

I started strength training with a fragmented swimmers stretch. 1 limb at a time. The good thing about body strength training is you see progress which is important for hope. Which is another important aspect of recovery and dopamine generation.

I couldn’t sit and work for more than 20 minutes for about 3 years. I tried to design my own cheap reclining chair so I could lie back and stare at a screen for long enough to earn some money.

The other name for cfs is myalgicencephalomyelitis which means inflammation of the thoracic spine up to the brain. Really you are trying to get the body into a band that it can operate comfortably without causing inflammation to the point that you can earn a living. And being physically strong helps with that.

Exercising your arms will aggravate your thoracic spine. I guess I’m saying train for thoracic and cervical stability (strength) accepting some overtraining initially because it is really hard to judge what is overtraining when you are weak. You have to be really patient. 3 steps forward one step back. If you can only hold a kettle bell for a few seconds then don’t. Just work on swimmers stretches and banded propioception and neck and spine strengthening exercises, you will easily overdo it trust me. Try not to. Physios and exercise physiologists deal with alot of overtrained virally unlucky athletes and are probably your best source of guidance on this facet of recovery.

[smearth]

Sorry I misread kettle for kettle bell. But the load is irrelevant.

If you are that weak then start with fragmented swimmers stretches 1 limb at a time. I was in the same situation in 2018 but you do forget once you escape. Just do 1 rep on each limb every second day until you can do two. Or figure out the training periodicity for your body so that you can build up to 30 swimmers stretches. Then add in another exercise.

The feeling of muscular fatigue doesn’t matter - the not overtraining is the important bit.

There’s so many other things to get right also but getting physically stronger will only help. I’d talk with a sports physio first if I was in your situation.

[GordonS]

I'm not "strong" by any means, but I wouldn't say I was weak either; the problem is that I'm not lacking the strength to lift the kettle (or my own arms, for that matter), rather that lactic acid doesn't allow me to use the strength I have for any length of time.

[smearth]

And after writing that I realised strength training is one of the recovery shortcuts for pacing. Smart people probably read this and think Doh, I'd be fatigued if I had that guy's problem solving ability.

There are plenty of other shortcuts.

I think this is the gist of what I'm whinging about regarding CFS treatment options.

More people would recover faster if Mindfullness wasn't the only tool available to shorten the process of pacing one's self to recovery. Being chill and treading carefully will work for less debilitated people. The really debilitated people are sensibly avoiding exertion, they aren't signing up for an underresourced olympic swim team .

[smearth]

Here's a simplification (that I experienced before I dealt with cfs) -

there is long series of stairways up a large hill that people run up.

You can run up the hill slowly every 5th day without it killing you, then every 4th,3rd 2nd then everyday. That process might take 4-6 months and takes grit.

Or you can strength train your legs with barbell squats once a a week for 8 weeks noticing yourself getting stronger each week and then just run up the hill.

I accept I'm a terrible athlete now so I strength train my legs with very amateurish pistol squats so I can walk up the hill without crossing over the lactate threshold.

If you are crossing the lactate threshold lifting a kettle then strength training should help. I know the exact feeling you are describing and used to deal with it. Gradual strengthening helped - with a strong emphasis on the gradual. Aim for fragmented single limb swimmers stretches. I still remember the pure exhaustion after doing 1 rep. Make sure your body has glucose before after and during any form of exertion. The steadier the glucose flow the better. Getting up and down off the floor is a form of strength training.

There's a balance between strength and endurance and I don't have the explanation off the top of my head but exercise physioloogists do.

Zone 2 exercise heals mitochondria. Zone 3 exercise stresses it and requires a recovery period. Exercise physiologists are having good success treating cfs as athletes are really just optimising their mitochondria so they can thrash it harder and longer than their competitors on race day. Exercise physiologists often work in with physio teams at sports academies at univerisities.

Dr Peter Attias stuff he is figuring out and sharing from helping wealthy intelligent people live long debilitation free lives is very useful for understanding lactate thresholds.

Just like athletes take performance enhancing drugs to reduce recovery times - so can we. There are plenty of supplements to play around with. So many people mess up their B vitamins by taking multi-vitamins but getting b vitamins in quanties your body is utilising is a low hanging fruit. Unfortunately it has no profit motive attached to it so you have to guess or work with a Complementary Medicine MD if you can afford one. A low inflammation, glucose goddess style diet with moderate cheating in the mix so you don't get food obsessed as the base helps also.

The supplement reccommendation page on www.perfecthealthdiet.com is a safe base to play around from for supplementation. If you adapt a soft version of the perfect health base diet to the glucose goddess method and gradually strength train I think you must increase the probability of escaping the fatigue trap. Some of it is mental but if you can get small wins you eventually beat the mental side back as well. Dopamine managment is a factor.

My frustration with some medical professions take is that they sometimes expect you to deal with it purely via mental resilience (which helps) without providing any tools to get any small wins which is impossible. If you think about it - an olympic athlete has a coaching team to ascend mount everest, what do we have?

The medical system treats the condition like someone's on a cave dive and provides the support encouragement, training and advice afforded Eric the eel. They are right that you can do it, panick won't help and that you do need to keep moving in some direction but until you run out of air you will be alright. The fact you can't work is irrelevant, lot's of people deal with debilitation. From the health systems perspective maybe they are right - who deserves saving vs who deserves training are different questions. There is alot of suffering out there - maybe placing the onus on the individual to figure their own path is the correct approach.

[wnolens]

> I’d say ability to sideplank and neck strength are probably two of the most important recovery metrics. Drs don’t understand the psycho-somatic balance of the illness. There is a psychological component but it is a minor component and is driven by physical constraints.

Can you explain/corroborate this? The rest of your post really paints a picture of it being about psychological/emotional stress (and suggests different coping techniques akin to avoidance). I was with you until "sideplank".

[smearth]

The physical problem is bigger than the mental problem. There is an underlying physical problem, it just isn’t understood. Because brain fog and pain are the defining symptons then emotional regulation (which is super important also ) gets overblown.

A convalescant event effectively transforms you into a really terrible athlete with shameful recovery periods.

Being physically injured like spraining an ankle is so mentally fatiguing because the brains autopilot modes get temporarily disrupted. It can’t use all its gpu bandwidth and has to switch on other processes to move about.

Proprioception is important, head stability is important, not aggravating the thoracic and cervical spine when moving is important. The stronger you are the more you can achieve without getting to the point of exertion.

There is alot of emotional management necessary for sure - your brain used to work and now it doesn’t. And it hurts to move.

There is also a lot of biochemical management needed to minimise inflammation.

But without a certain level of physical strength then emotional and biochemical management alone won’t allow you to recover.

And it takes grit (which is hard in the face of hopelessness) to get that physical strength back plus a smart diet and supplementation combined with effective emotional management.

If I didn’t have follinic acid in my recovery steps I probably wouldn’t have recovered. If someone hadn’t gifted me a decent bed I probably wouldn’t have recovered. The bed was to support the thoracic spine so I could sleep.

There is a definite physical component to recovery from cfs and this is poorly researched.

[kortex]

> Being physically injured like spraining an ankle is so mentally fatiguing because the brains autopilot modes get temporarily disrupted. It can’t use all its gpu bandwidth and has to switch on other processes to move about.

Ohhhh... this explains so much about why what are otherwise mild injuries can absolutely throw off my rhythm and disrupt my productivity. Having even a low-grade injury ties up cycles and is like a background task set to prevent going into power-save mode, because it's like a constant potential threat/alert.

[JPws_Prntr_Fngr]

When your CNS is at 0%, it's weirdly difficult to hold your spine and head straight against gravity. You start leaning on stuff, resting your head on your hand, etc.

[smearth]

Totally, interestingly they diagnose the illness with a tilt table in some countries.

I had an inversion table atempting to relieve my thoracic pain at the time of my diagnosis. Which was a diagnosis of exclusion. I was gutted by the chronic diagnosis.

I was lucky that the inversion table allowed me to accept that I had the condition post diagnosis because it definitely triggered fatigue after I’d rest at the tilt angles that trigger fatigue.

The awareness of the tilt test and that delayed fatigue onset were the 2 useful pieces of information I got from the cfs support group I attended 3 times. I accepted my diagnosis quickly as I’d accidentally been doing my own tilt table tests with the inversion table. I also quickly realised that regularly whinging about the condition in a support group of people who accepted that they weren’t going to recover from something that seemed treatable wouldn’t help me.