> 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.
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.
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.
I've used Amazon's One Medical for free-to-members ($9/month) remote visits five times in two months. One referred me to the ER, another refilled a prescription at a different dose. The shortest wait was 30 seconds, the longest wait was about 18 minutes. To get the free visit, you have to scroll down past the regular paid appointment to "Urgent Video Chat", which is weirdly the free option, not a more expensive option.
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"
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.
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.
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.
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.
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
If you search you can see the criteria use for CFS. Seeing a doctor or three (second opinions matter) experienced in CFS would help. Sorry that you having something hard to diagnose too as it is frustrating!
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.
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
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.
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.
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).
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.
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.
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.
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.
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.
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.
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.
> 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?
>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.
> 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.
Whatever the ideal would be, we don't have that. In the world we have, classifying it as "it is in your head" does marginalize the problem.
But on top of that, you think it is a mental health issue based on your experience. There are millions of other people with ME/CFS (yes, I know there is currently no positive test for it, but is arrived at by eliminating other things) and the cause is (causes are) not known. By throwing it in the basket of mental illness, it means there should be no funding researching the physical causes of it.
Finally, there are studies [1] which show mitochondria problems in many people with ME/CFS. That is, modest exercise causes increased cell acidity and/or slow reconversion of ADP back to ATP, starving the cell of energy. How can that be classified as a mental illness?
The problem is, the claim should be based on data. Not having a good mechanism to explain it is not evidence for it being a mental illness. There is very little evidence supporting that it's a mental illness.
For FM, a thing that has been classified as a mental disorder as late as 2016, spinal fluid pressures may have a role [1].
Medicine is just absolutely littered with these sorts of dismissals. This is why, at any point in time, you can look back 20 years to what was "standard practice", and be shocked.
This is surely true, but they certainly different when it comes to treatment and the role of the sufferer. When it comes to mental illnesses, the patient usually has to be an active participant or even leader in their treatment.
That is to say, a doctor can strap someone down and cut out their kidney, but a doctor cant unilaterally change your mental processes.
I think both medically and culturally, when something is designated a mental illness, it becomes more of the patient's problem to solve.
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.
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.
You get the same effect in countries that are less litigious, even in countries where it is really rare for doctors to be sued so I think you can remove the legal risk.
I think it is a combination of social conditions (a job which is high up a hierarchy of respect - well above what in Britain professional people have taken to calling "the gammon" in recent years), plus dealing with the general public, plus knowing one has a high level of training and skill, plus the tendency of any closed profession to strong on consensus.
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."
It's been known for a long time that women are more prone to autoimmune issues of all kinds, and yet as other comments here discuss, there is just not much done in the way of thorough exclusion of rarer autoimmune causes. Many doctors, even rheumatologists, just run a standard set of blood tests that only test for common autoimmune issues, and if none of those turn out positive well then I guess it must all be in her mind! And since portability of medical records sucks in the U.S., one often starts again at the beginning with each new doctor no matter how much has been examined before. The gulf between medicine-as-accrued-knowledge and medicine-as-actually-practiced is very wide.
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.
Sure, but the simultaneous rise of other immune problems (including gut problems) is an interesting coincidence.
The strangest difference between the medical and engineering world that I've seen is that, in engineering, coincidences are signal with significant importance that often expose corner case problems, or something deeper. In medicine, coincidences are usually disregarded. Interesting research usually starts with coincidence, since the only other mechanism is having to wait for someone to, coincidentally, think of that same.
Definitely different worlds. But, practitioners are far removed from research, and coincidence/curiosity isn't actionable, so it makes some sense.
What's the context for these sorts of scales your'e giving? FM is estimated to around 2% adults. CFS is maybe around 1.3%. And, medical reporting is, objectively [1], terrible.
We had a bug at a previous employer that would cause many of the main database replicas to crash. We isolated it to a collision in the code that serializes query predicates, which happened about one time out of 2^32ish queries. So yes, relatively rare occurrences do get investigated.
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.
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.)
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.
Likewise, it's common for physicians to tell patients that their lower back will hurt for the rest of their life even though many cases can be cured through physical therapy.
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.
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.
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.
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.
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.
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.
> 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.
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.
> 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."
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.
Chronic fatigue syndrome seems like a rebrand for ye olde neurasthenia. I have to wonder why 'hysteria' didn't get the PR treatment considering it is the other pole of neurasthenia. It really is the same sort of collection of symptoms under a large umbrella.
Neurasthenia was considered to be a result of lower processes (intake and transformation of food) becoming too demanding for the upper processes (respiration). The upper organisation was thought to be reaching its conclusion before it fully balanced nourishment with respiration. Excessive independence of the metabolic processes from the upper organisation of respiration were thought to bring about ‘hysteria’ - neurasthenia's polar opposite.
Please don't downvote because I don't mean this post as a snarky jab or justification of pseudo-science - I just have to wonder why if you're going to have such an encompassing definition of something like CFS, why would you then dig around in the mud of cellular automata instead of looking at overarching qualities as some did in the late 19th century? It seems to me that you either need to confront the definition or work on the same level as it.
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
