[HN Gopher] Sweeping chronic fatigue study brings clues, not cla...
       ___________________________________________________________________
        
       Sweeping chronic fatigue study brings clues, not clarity to
       mysterious syndrome
        
       Author : rbanffy
       Score  : 68 points
       Date   : 2024-02-22 19:35 UTC (3 hours ago)
        
 (HTM) web link (www.science.org)
 (TXT) w3m dump (www.science.org)
        
       | spondylosaurus wrote:
       | > But several of those turned out to have underlying diseases
       | that had been overlooked, including cancer, pulmonary embolism,
       | and a muscle ailment called myositis that causes weakness and
       | fatigue. The surprise diagnoses suggest that people told they
       | have ME/CFS often receive inadequate care--something many
       | patients already know. "It's a huge indictment of our medical
       | system that they had to join a research study to find out what
       | was wrong with them," says Mike VanElzakker, a neuroscientist at
       | Massachusetts General Hospital.
       | 
       | You see this a lot with "diagnoses of exclusion," sadly. In the
       | absence of specific tests, you can only reach certain diagnostic
       | conclusions by ruling out _other stuff_ first, but (particularly
       | in American healthcare) we often don 't perform the rigorous
       | well-it's-definitely-not-<x> workup first.
       | 
       | Or, depending on the circumstances, people don't understand that
       | certain conditions are diagnoses of exclusion to begin with and
       | jump to conclusions, like assuming they have IBS when they
       | actually have Crohn's. (Ask me how I know, lol.)
       | 
       | There's the recent rise of "Chronic Lyme Disease," which many
       | physicians have noted is a dubious diagnosis at best, but it
       | seems clear that most of those people _are_ ill--just with
       | something else. And that  "something else" could be a positively-
       | identifiable condition that they haven't been tested for yet, or
       | it could be a legitimate diagnosis of exclusion, like ME/CFS.
       | 
       | The problem, in either case, is actually testing people for all
       | those other things first.
        
         | jjeaff wrote:
         | It seems like the most likely answer is that it is just a lot
         | of different things in different people. Fatigue is a symptom
         | in almost any and all illnesses.
        
           | bombcar wrote:
           | We also like to thing that doctors are able to extensively
           | test and determine what is going on - but with many diagnosis
           | and treatment, it's almost entirely based on patient self-
           | reporting.
           | 
           | We can test the blood for certain things, we can run other
           | scientific tests, but for lots and lots of problems, we
           | really don't have any scientific way to determine.
        
           | spondylosaurus wrote:
           | I mean, TFA (among others) have made the case that ME/CFS is
           | linked to (if not outright caused by) a number of specific
           | kinds of physical dysfunction... but it's true that fatigue
           | is a symptom of countless illnesses, so it gets difficult to
           | figure out which patients are suffering from which
           | conditions. Hence what happened in this study when they tried
           | to narrow it down to a pool of ME/CFS patients :P
        
           | quickthrower2 wrote:
           | CFS is very different. Fatigue as a word alone has different
           | meanings to different people. They use it to describe the
           | effect of driving for too long and you need a rest. Or a poor
           | nights sleep. Or maybe you went hard at the gym or the bar.
           | It is nothing like any of those things.
           | 
           | A good tell is that physical effort beyond a point makes it
           | worse, and you need to stay within an energy envelope or you
           | get severe symptoms. All activity is physical effort not just
           | say running. Putting the kettle on for example or refactoring
           | a line of code.
           | 
           | You know that nice feeling when you feel better after you've
           | been sick. You don't feel that ever again.
        
             | 8A51C wrote:
             | Very accurate. The way I try to describe it, like a worn
             | out recharchable battery- only charges to 80%, runs down
             | quickly when you try to use it and takes ages to charge
             | back up again.
             | 
             | This is in some way trivialising the suffering, but I find
             | helps people understand a little what it's like. At it's
             | worst whilst I might be able to get out of bed and use the
             | toilet, it takes a level of forethought, planning and
             | effort that is unreasonable.
             | 
             | Suffered with fatigue since stem cell transplant in 2011.
        
               | freedomben wrote:
               | Yes, people don't understand that even very basic self
               | care like brushing your teeth or going to the can be
               | completely overwhelming. Just receiving a text or an
               | email when you're feeling can be crushing
        
               | quickthrower2 wrote:
               | Sorry to hear that. I am embarrassing mild compared to
               | most stories I read on r/cfs (which is why I just lurk)
               | 
               | It has taken years to build back up to almost full time
               | work without it being a boom/bust affair.
               | 
               | I can't imagine the more severe cases because you need
               | energy to manage the problem, like a catch 22.
        
             | qwertox wrote:
             | Thank you for sharing this. I won't tell my situation, but
             | at least I know that exercising does help me, so CFS is
             | very likely not the problem.
        
         | jwells89 wrote:
         | To make all this worse, I believe the issues outlined may be
         | magnified by distance from major urban centers.
         | 
         | I have family in a rural part of the US and the quality of care
         | immediately available there is poor, with only marginally
         | better treatment available within an hour's drive. To have more
         | options than that, one is faced with a multi-hour drive and
         | most major metros where quality care is most plentiful is
         | several hours away.
         | 
         | There's been several people I've known or heard of out there
         | who've for years not been able to pin down exactly what the
         | root causes of their ailments are because the local physicians
         | aren't thorough and/or knowledgeable enough. It's especially
         | problematic for those on the older end of the age spectrum who
         | even if they're still able to drive, can't manage such lengthy
         | trips on their own very well.
        
           | spondylosaurus wrote:
           | Absolutely. Hell, I live in a major urban center and the
           | healthcare here _still_ sucks. Years of getting the runaround
           | and _" Wow, that's so bizarre, you should go to the Mayo
           | Clinic to find out what's wrong with you"_ only for an answer
           | to emerge from something as banal as a colonoscopy.
           | 
           | On that note, I maintain that the opioid epidemic hit the US
           | uniquely hard precisely because of the lack of access you
           | describe. (And I'm always surprised how few conversations re.
           | the opioid crisis ever mention it.)
           | 
           | When it's hard to find doctors, when it's expensive and time-
           | consuming to visit them, when tests aren't offered or are too
           | expensive and time-consuming for people to pursue them, when
           | the medication for the condition they finally get diagnosed
           | with is expensive and requires you to jump through a million
           | prior authorization hoops to acquire... of course they turn
           | to cheap, generic painkillers.
           | 
           | We're not good at treating the underlying causes of pain, and
           | the treatments that do exist are too often out of reach. We
           | don't have adequate safety nets. People need to work, and it
           | drives them to mask their symptoms.
        
             | freedomben wrote:
             | painkillers aren't even an option anymore either, unless
             | you're older (by that I mean 60+), and even then a lot of
             | doctors are adopting policies of "we never prescribe
             | narcotics"
        
           | quickthrower2 wrote:
           | Urban centres give you choice but not necessarily better
           | doctors in general. You still need to shop for a good one.
           | Reviews don't help. Cost is not an indicator.
        
         | s1artibartfast wrote:
         | I think people have strangely high expectations from doctors
         | and medicine in general.
         | 
         | They don't just _want_ their problems to be diagnosed and
         | fixed, but _expect_ solutions to be determined and implemented
         | in a way you dont see elsewhere.
         | 
         | People don't go to their accountant and expect them to just
         | find a way to make their taxes zero.
         | 
         | I wonder if it stems from the fact that most medical problems
         | people experience do have trivial and complete solutions, so
         | that it isnt until people get older and more experienced that
         | they realize not all problems are solvable.
         | 
         | I work with dozens of doctors, and none of them are omniscient
         | or omnipotent. They generally work hard, but dont have all the
         | answers.
        
       | notamy wrote:
       | http://archive.today/lmA13
        
       | CPLX wrote:
       | > ME/CFS is unquestionably biologically rooted, says Avindra
       | Nath, clinical director of the U.S. National Institute of
       | Neurological Disorders and Stroke, who led the study. It revealed
       | brain activity differences, along with immune and other
       | abnormalities, in 17 people with ME/CFS compared with 21 healthy
       | controls
       | 
       | Not expressing my own opinion on the condition itself but this
       | sentence makes absolutely no sense.
       | 
       | How on earth can you have a sample size that tiny and then use
       | the word "unquestionably" as if you mean it.
       | 
       | You could fit the whole study in a school bus. Being wrong about
       | one person would be statistically significant.
        
         | bombcar wrote:
         | The sample size worries me less than the cause/effect swapping
         | possibility - people who think they have X might cause
         | abnormalities that show up biologically. We _know_ it can
         | happen with placebos.
        
         | derefr wrote:
         | > How on earth can you have a sample size that tiny and then
         | use the word "unquestionably" as if you mean it.
         | 
         | Because the first sentence is the lead researcher's opinion
         | (that they likely already held going into the study, due to
         | overwhelming _clinical_ -- rather than _scientific_ --
         | evidence); not an expression of the credence that you should
         | hold in the hypothesis, coming from null priors, _due purely
         | to_ the Bayesian evidence presented by the study.
         | 
         | A more pedantic rephrase of the first sentence you quoted,
         | would be something like "no doctor who regularly sees ME/CFS
         | patients would doubt the claim that ME/CFS has an organic --
         | rather than psychogenic -- etiology."
         | 
         | Those doctors now just need to conduct enough studies to prove
         | that claim to the satisfaction of people who _aren 't_ doctors
         | and who _don 't_ regularly see ME/CFS patients. This is the
         | first step of that.
         | 
         | The result that such studies expect to find -- at least to
         | these doctors -- isn't in question. "A pile of 1000 independent
         | anecdotes of case-histories from professional clinicians that
         | all corroborate the claim" just needs to be replaced with an
         | equally-sized "pile of laboratory-condition-verified tests done
         | in a way standardized enough to be aggregated as data and
         | T-tested."
        
         | jdietrich wrote:
         | It also doesn't really mean anything unless you're a strict
         | mind-body dualist, because the brain is an organ. People with
         | depression also have brain activity differences and are more
         | likely to have elevated inflammatory markers. Having an
         | autoimmune disorder increases your likelihood of being
         | diagnosed with depression and vice-versa. There is no clear
         | boundary between the biological and the psychological; emotion
         | and cognition are biological processes in exactly the same way
         | as digestion or respiration.
         | 
         | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9540243/
         | 
         | https://ajp.psychiatryonline.org/doi/10.1176/appi.ajp.2020.2...
         | 
         | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5338810/
        
       | nomel wrote:
       | My mom had this, fairly severely. As with many others, most
       | doctors (and even family members) said it wasn't real, was in her
       | head, etc.
       | 
       | Then, after around two decades, it just all went away. But, in
       | its place were some new, odd, allergies. My theory is that her
       | immune system was perturbed in some significant way, which caused
       | whatever was causing the CFS to be dealt with/managed. Who knows.
       | 
       | Seeing the doctors call her a liar, to her face, really knocked
       | doctors off the pedestal that society lead me to believe they
       | were on.
        
         | agumonkey wrote:
         | some doctors really think too high of their education. very
         | detrimental for everybody with strange conditions
        
           | jobs_throwaway wrote:
           | The modern process to become a doctor 1) selects for
           | incredibly obedient, follow-the-rules type individuals and 2)
           | implicitly and explicitly enforces those norms.
           | 
           | If becoming a professional programmer required 4 years of
           | grade grubbing in undergrad, 4 hellacious years of graduate
           | school, then 4+ more years as a resident, and once you
           | started working your customers could sue you every time they
           | encountered a bug you wrote, I bet you we would see similar
           | risk aversion/coherence to accepted wisdom in the profession
           | that we do in medicine.
        
             | mattgreenrocks wrote:
             | Yep. And doctors often seem to have zero interest in
             | something that doesn't fit their models well.
        
               | onlyrealcuzzo wrote:
               | Why, Margaret, assume you're a spherical cow and take
               | these brown pills twice daily.
               | 
               | You'll be just as new in a jiffy.
        
             | agumonkey wrote:
             | Oh I'm not asking risks off of them, I somehow respect
             | their effort and responsabilities, just a more neutral
             | point of view. They're judgement can lead to long term
             | damage too if they refuse to take your story into account.
             | 
             | A simple "you don't fit the standard grid, maybe there's
             | something else, personally I can't help you, keep digging."
        
             | s1artibartfast wrote:
             | I think there is more to it than that. The process also
             | selects for people who are very hard working and trains
             | them to think in terms of averages.
             | 
             | Everyone wants an unconventional doctor when the convention
             | isnt working for them, but that doesn't mean people on
             | average would be better off if doctors didn't follow
             | convention.
             | 
             | The desire for a doctor that bucks the rules breaks down
             | once you understand that they aren't super-human problem
             | solvers (as seen on TV).
             | 
             | Even listening to and believing patients becomes an
             | optimization problem.
        
         | jordanpg wrote:
         | I also have a mom who has/had this.
         | 
         | It started as fibromyalgia. Then it was multiple chemical
         | sensitivity. Then it was chronic fatigue syndrome. Then it was
         | a autoimmune disorder. Most recently it is an exotic form of
         | lupus with extreme photosensitivity.
         | 
         | Each time, like you said, it just went away but was replaced by
         | the next thing.
         | 
         | I don't have any doubt that my mom's subjective health
         | experience is real and unpleasant, but after 30 years of this,
         | I do have my doubts about a physiological etiology.
         | 
         | The peace I've had to make is that even if it is "in her head,"
         | the pain is real.
        
           | tasty_freeze wrote:
           | > I do have my doubts about a physiological etiology.
           | 
           | I hope whatever is afflicting your mom gets sorted out, but
           | please don't generalize your N=1 experience of your mom to
           | the entire population of ME/CFS sufferers. It only breeds
           | contempt for the condition.
           | 
           | As a N=1 counter example to yours, my wife has suffered from
           | it for 20 years and she is still suffering from it, with the
           | same hallmarks the entire time. She also suffers from EDS
           | (Ehlers Danlos Syndrome), which actually came first.
           | Statistically, people with EDS are far more likely to have
           | ME/CFS. If ME/CFS doesn't have a physiological basis, how
           | would explain this -- perhaps that people with EDS tend to
           | develop the same health delusion?
        
             | jdietrich wrote:
             | _> please don't generalize your N=1 experience of your mom
             | to the entire population of ME/CFS sufferers. It only
             | breeds contempt for the condition._
             | 
             | If suggesting that ME/CFS may be a mental illness breeds
             | contempt towards sufferers, then we really need to reflect
             | on our attitudes towards mental illness. The aetiology of
             | ME/CFS should have absolutely no bearing on how we regard
             | people suffering from it. Mental illness is real illness.
        
               | freedomben wrote:
               | > _If suggesting that ME /CFS may be a mental illness
               | breeds contempt towards sufferers, then we really need to
               | reflect on our attitudes towards mental illness._
               | 
               | Absolutely you are correct on this, but at the same time
               | it doesn't change the reality that to many people and
               | doctors, ascribing it to mental illness is essentially a
               | dismissal, which is wildly unhelpful to the person
               | suffering.
        
           | Aaronstotle wrote:
           | My sister is similar, she has fibromyalgia and now she has
           | another condition which no one in my family quite knows, and
           | neither do the doctors. It hasn't been 30 years for me, but I
           | do hope that some doctor can figure it out.
        
         | boringuser2 wrote:
         | So you ignored a bunch of doctors and feel vindicated?
         | 
         | Doesn't pass the sniff test.
         | 
         | Don't ignore doctors, people.
         | 
         | That said, mental illness can be very debilitating and is very
         | real.
        
           | kazinator wrote:
           | The doctors were denying the existence of an illness though.
           | 
           | Don't ignore the doctors when they diagnose you with an
           | illness.
           | 
           | If they insist you don't, there is a risk in not ignoring
           | them. Maybe you have something and their diagnosis missed it.
           | 
           | (I do realize that from the grandparent comment, we cannot
           | conclude that the doctors were proven wrong. The symptoms
           | went away on their own, and were never diagnosed as being
           | something physiological, which would contradict the "in your
           | head" claim.)
        
           | protocolture wrote:
           | No the doctors ignored her, big difference.
        
           | com2kid wrote:
           | I had a doctor tell me my knee pain was because I had worn
           | away the cartilage and it was just going to hurt for the rest
           | of my life.
           | 
           | I had a personal trainer tell me it was because the muscles
           | on one side of my leg were much larger than the other (leg
           | length difference) and that was pulling my kneecap out of
           | place.
           | 
           | The personal trainer was correct, a few months of focused
           | single leg exercises and the knee pain that had been with me
           | for years went away.
           | 
           | Doctors don't know everything.
        
             | tayo42 wrote:
             | How did they determine there was an issue with cartlidge in
             | the first place
             | 
             | Ime, I've had frustrating experiences with doctors about
             | physical stuff like that.
        
             | s1artibartfast wrote:
             | Doctors are human and medicine isn't mathematics.
             | 
             | Putting the words "I think" before everything they say
             | makes expectations a lot more realistic.
        
         | bongodongobob wrote:
         | Was this after running tests that turned up nothing or did they
         | just say "no, we don't believe you" from the start?
        
           | freedomben wrote:
           | I'm not GP but had similar experience, and yes they run every
           | test they think is "reasonable" (i.e. insurance will approve)
           | given the symptoms.
           | 
           | Problem is it's a game of finding statistical outliers, and
           | often these types of conditions cause only subtle changes to
           | conditions. Mix with the problem that the statistical ranges
           | are based on what labs are seeing in tests, but for some of
           | the tests people usually only get them when they are having
           | symptoms, which artifically pushes the outlying bands even
           | further out so that "normal" includes a chunk of people that
           | have the condition!
           | 
           | And then even if they do find stuff, it's usually all about
           | treating the symptoms and not the causes. Except nowadays
           | only certain symptoms because we've decided that the small
           | percentage of people who abuse some pharmaceuticals are a
           | good enough reason to err on the side of denial to a
           | legitimate person rather than granting to an illegitimate
           | person. In no small part thanks to a DEA who will clap a
           | well-meaning doctor in irons if they give t someone who
           | shouldn't, but there's no penalty at all for withholding from
           | someone who needs. It's no surprise which side they would
           | rather err on and bet their medical license/livelihood on.
        
         | pwthornton wrote:
         | The allergies angle is interesting. I am doing allergy
         | immunotherapy shots right now, and the first few weeks of doing
         | them, I had the worst fatigue of my life. I just had no energy
         | and low desire to do things. Once my immune system adjusted,
         | the shots got a lot easier each week.
        
         | kazinator wrote:
         | > _Then, after around two decades, it just all went away._
         | 
         | That doesn't confirm that the doctors who said it was all in
         | her head were wrong.
        
         | tick_tock_tick wrote:
         | Why especially with
         | 
         | > Then, after around two decades, it just all went away.
         | 
         | are you ruling out it being psychosomatic? It "being all in her
         | head" doesn't mean she isn't chronically fatigued just that the
         | cause is in her head.
        
         | simcop2387 wrote:
         | It's stuff like this that makes me wonder a lot about the
         | studies happening around chronic inflammation and things like
         | that too. I won't be surprised if a lot of chronic illnesses
         | end up turning up as auto-immune and gut/body-biome issues
         | where something has gone awry and now there's too much of
         | something happening.
         | 
         | Things like EBV staying around for long periods of time at low
         | levels is one of the purposed causes of CFS symptoms, among
         | others, in a lot of people, given it's prevalence.
         | https://en.wikipedia.org/wiki/Epstein%E2%80%93Barr_virus#Rol...
         | 
         | I also won't be shocked to find that CFS turns out to be just
         | common symptoms of dozens of diseases/syndromes that are all
         | different and we just suck at identifying them right now.
         | That'd also help explain why it's so hard to nail down and
         | treat.
        
       | btbuildem wrote:
       | ME/CFS sufferers have been pushed to the fringes and gaslit for
       | decades. It's reassuring to see studies that validate these
       | conditions and try to find some answers instead of outright
       | dismissing it.
       | 
       | I wonder if the ever-growing cohort of Long Covid sufferers are
       | making this a problem that can no longer be ignored.
        
         | fragmede wrote:
         | Undoubtedly. Especially, and unfortunately, since doctors and
         | nurses, along with young, previously healthy, active people,
         | came down with CFS after catching Covid, where walking to the
         | kitchen is too much work, watching Netflix is too much work,
         | makes it clear there's a malady that can be cured since these
         | people were previously healthy.
        
       | MyFirstSass wrote:
       | I've had this for some years but it seems to be getting a bit
       | better for some unknown reason.
       | 
       | The worst part is not the fatigue but the PEM, or post exertional
       | malaise.
       | 
       | Took me years to figure out my lifting made me feel like absolute
       | garbage, almost suicidal if i went hard enough, but not right
       | after, felt great the following day, but then, super crash and
       | extreme doom and gloom 48 hours afterwards, so unfair and
       | bizarre.
       | 
       | These days i workout in moderation. Such a weird condition, and i
       | would love to know what goes on chemically as it feels very, very
       | physical, like some hormone/mineral or whatever suddenly runs out
       | and.
       | 
       | Tried all kinds of supplements but have a feeling it's related to
       | the gut biome, inflammation levels and general stress / cortisol
       | also pseudo scientifically known as adrenal fatigue.
        
         | vimy wrote:
         | If you have too much inflammation and if you have a stressor
         | that causes cortisol to go up, like lifting, the conversion of
         | T4 to T3 may be disrupted and you have too much reverse T3
         | instead. This causes hypothyroidism two days later.
         | 
         | Easy test is to take T3 (liothyronine sodium) on such a day.
         | See if you feel better.
         | 
         | https://pubmed.ncbi.nlm.nih.gov/8895357/
        
         | mattgreenrocks wrote:
         | Thanks for writing this. I'm sorry you have to deal with it. I
         | have something similar: once I lift hard enough when
         | [re-]starting lifting, I get a big emotional hangover the next
         | day or so as well. Feels like a truck hit me, basically. No
         | amount of food, hydration, sleep, or anything stops it.
         | 
         | It might be comorbid with my hypermobility, but who knows. I
         | basically expect it to happen at this point and just plan to
         | lay low for 48 hrs.
        
         | freedomben wrote:
         | I have this pretty bad, to the point where even climbing a few
         | flights of stairs will leave me wasted and feeling like utter
         | shit. It's taken 15 years and 10s of thousands of dollars (with
         | insurance) to figure out that I have Hashimoto's. The
         | treatments can help a little bit, but not much, and no doctor
         | can tell me why. I've read a few books that give some plausible
         | sounding examples, but anytime I've mentioned these to doctors
         | they are dismissive yet can offer zero explanations themselves.
         | There are no shortage of chiropractors and functional medicine
         | practitioners that have very plausible sounding explanations,
         | but no real solutions (I've tried every type of diet-based
         | advice I could and it can sometimes feel like things are
         | improving a little bit, but the super hard diets are not
         | sustainable. I've restricted gluten and dairy as those are the
         | two most suggested things that enflame, and I definitely feel
         | better without those things, but it's really, really hard to
         | eat like they tell you too unless you have a personal chef).
         | 
         | If you are having similar, try completely cutting caffeine for
         | a little while. It can be extremely hard when you're already
         | fatigued, but it is like gasoline on the fire for me now.
        
         | rednerrus wrote:
         | Have you had your kidneys tested? This sounds incredibly
         | similar to kidney disease.
        
       | anonymous344 wrote:
       | If it's not any other more-regular ones like the article states,
       | could it be one of these - sensitivity to electromagnetic
       | radiation (if it's even possible) - lack of minerals - gut
       | problem -> brain problem - too much sugar or insulin in the blood
       | 
       | of course normal doctors don't even think of these things because
       | "food cannot make you sick, and pills or knife are the only
       | solutions to any problems"
       | 
       | If you have these symptomps, i'd suggest -intermediate fast -fast
       | - consume seasalt water, most raw quality sea salt (unwhitened
       | etc.) and most clean water from the spring or filtered - then
       | also, high-quality oils. Brain needs oils and our current food
       | contains almost 0 of them. Even lax are fed with soy and other
       | awful stuff
        
       | Eric_WVGG wrote:
       | I've been following a project called Remission Biome on Twitter,
       | sort of crowd-sourced self-experiments run by a pair of doctors
       | who have ME/CFS.
       | 
       | https://twitter.com/remissionbiome
       | 
       | One of their projects I find interesting is the use of nicotine
       | patches to self-regulate. "Nicotine activates AMPK, the substance
       | that tells your body (Mitos) to produce ATP. Without ATP, no
       | energy. Also muscles cannot complete contraction 'cycle'. Ensuing
       | stiffness and fatigue. Inflammation is one way AMPK gets
       | deactivated." IANAD, but inflammation seems like a persistent
       | theme in a lot of modern, chronic conditions.
       | 
       | https://linktr.ee/thenicotinetest
        
       | tomhoward wrote:
       | I've largely overcome CFS with a variety of treatments over more
       | than about 15 years. Most of the treatments are physical
       | therapies (particular nutrition and exercise approaches), but an
       | unconventional subconscious emotional healing modality has been
       | fundamentally important. After a few years of doing just physical
       | treatments, things only really started to change once I tried the
       | emotional healing approach, which only happened by chance when a
       | physical therapist said "maybe this will help"; I didn't go
       | looking for it as I was so focused on the physiological symptoms
       | (pain, inflammation, weakness/exhaustion), and
       | psychologists/psychiatrists I'd seen before said I seemed fine
       | enough.
       | 
       | So, yes, the treatment that worked for me is unconventional. I
       | mean of course it's going to be unconventional: as this article
       | reminds us yet again, the medical establishment has been trying
       | to explain (or dismiss) this condition for decades by adhering to
       | conventional understandings of health and getting nowhere. So an
       | approach that currently seems unconventional is the only way
       | there can ever be any headway with this issue.
       | 
       | I've long said I would like to be involved in research into the
       | condition and into the treatments I've found beneficial. Any
       | researchers who want to talk to me, or anybody interested in
       | supporting or being involved in this kind of research is welcome
       | to contact me.
       | 
       | As this article reaffirms, CFS/ME advocates frequently insist
       | that the condition must be taken seriously because it is
       | fundamentally a physically-rooted condition; as if (a)
       | emotions/traumas can't cause or exacerbate physical symptoms, or
       | (b) that conditions that are rooted in emotions and trauma should
       | be taken any less seriously than those that are primarily
       | physical. Of course both these positions are plainly false.
       | 
       | The real problem is that mainstream medicine just doesn't give
       | much credence to the notion that emotions and physical symptoms
       | can be deeply connected. (And to be clear I come from a
       | background of strict acceptance of scientific and medical
       | orthodoxy).
        
         | polishdude20 wrote:
         | Can you go into more detail on the emotional healing approach?
        
         | fellowmartian wrote:
         | Did you ever come across low dose naltrexone?
        
       | John23832 wrote:
       | Long story short (and TMI), I had an STD (Mgen) that went
       | undiagnosed for (what I think was) multiple years. It's basically
       | not tested for ever. I personally had no symptoms other than
       | being highly fatigued randomly to long periods of time. I tested
       | positive on a panel with a urologist during a visit for something
       | totally different, totally boring. I was given specific
       | antibiotics (you need more than doxy for this one) and my fatigue
       | never came back. To this day, I think all of my symptoms were by
       | body fighting this bacteria.
       | 
       | At first I was pissed at all the doctors who told me it was just
       | in my head. There was nothing wrong with me. But in the end, I
       | came to the conclusion that they just didn't know. Which is a
       | reality... There's just so much we don't know about the human
       | body.
        
       | fellowmartian wrote:
       | No claim on whether it's true (as I have no idea), but there's
       | something called RCCX theory that tries to explain this and many
       | other autoimmune diseases.
        
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