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It isn't just that the suffering from mental illness is real, it causes very real physical health issues and deeply disrupts your body's hormonal makeup via the HPA axis.

The strict delineation between physiological and psychological illnesses is mostly a Western construct and the unfortunate effect is that the CFS community has an obsession with proving that it is a 100% physical illness without any mental component. It shouldn't be necessary for them to assert that for them to be taken seriously. The same can be said of chronic Lyme, Fibromyalgia, IBS, many kinds of chronic pain

One fascinating thing is that there are people with non-physiological dissociative seizures (classified as a DSM mental illness). This population is actually much less likely to admit that their mental wellbeing has an effect on the incidence of these seizures than patients with conventional ones

Careful not to swing too far the other way. In situations where physical treatments are an option (even if they would only help, not cure), it is important not to give such treatments if it is a mental illness as treatments have risks. If it is mental, mental illness treatment might actually help.

If you look at the CFS forums they are trying all kinds of crazy experimental therapies, many of which have side-effects and few of which have any effects

Another interesting correlary is the pelvic floor dysfunction world. It is mostly a stress based illness which is best addressed by mental health treatment and relaxation but some people have gotten tons of invasive surgeries with reason to think they would even be helpful

The issue with CFS isn't to do with stigma against mental illness. It's with the mainstream medical community being uninterested in anything other than mental health treatments for a disease that clearly has a physical (viral/immune) component in the vast majority of cases. There are drugs for depression, and vast amounts of research has gone into their development. Why no similar research effort into drugs for CFS? It's not because we don't know what causes it -- we don't know what causes depression in many cases. It's not because there aren't enough sufferers -- there are millions. It's not because of lack of demand, or lack of existing costs to medical systems, or anything like that.

It's because the medical establishment doesn't really think CFS is a thing. They don't care about it, they don't pay attention to it, they don't see it as real. It's not a fatal disease in the same way that cancer is, and its symptoms sound like a teenager complaining about not wanting to go to school. The answer, as far as the medical establishment is concerned, is that nothing's really terribly wrong, buck up, and you'll be better soon. Oh, and take these antidepressants. Any mental illness inevitably brought on by being chronically physically ill (and not really believed) is pointed to as the underlying issue.

(I mean the above to represent how the medical community collectively sees CFS. There are certainly individuals within the community who take it very seriously. There are simply too few of them, and too few in positions of authority. And, to be fair, as I commented below, it can be very difficult to distinguish between CFS and a neurotic who just needs to be told they are fine and sent home, especially if you only have a very short time to interview them.)

It's upsetting, but it's easy to see how a bunch of what seem like tired, unhappy people with normal blood tests aren't leaping out as needing special attention. That's why a biomarker is massive. All of a sudden the medical community has to pay attention, will want to pay attention. It's a huge new drug market, if nothing else...

Let's hope this biomarker holds up under further tests. There's still a long way to go before I get too excited.

I don't think CFS is a mental illness, and I haven't seen evidence that that's the "leading hypothesis" (I've been diagnosed with CFS, although that was before I was later diagnosed with nerve damage), so this is something I've read deeply on.

CFS can absolutely cause mental illness though - constant fatigue, and sometimes pain, can take a terrible toll.

The evidence shows that CFS is triggered by stress or viral infections (which are physiologically stressful), and that it is associated with dysruptions to the HPA axis.

Everyone I know who has recovered (including myself) has said that dealing with psychological issues is the most important factor in recovering.

Some evidence sure, not "the" evidence.

Unfortunately I don't know any CFS patients that have recovered, or even gone into remission; for everyone I know, it's been a chronic condition.

>Some evidence sure, not "the" evidence.

At least 4 studies that looked at it all found that it was triggered by stress or viral infection. If you're aware of any other contrary evidence, I'm interested.

>Unfortunately I don't know any CFS patients that have recovered, or even gone into remission; for everyone I know, it's been a chronic condition.

Here on HN there is myself and tomhoward for starters, and I know lots of other patients who have also recovered. We tend not to post too much in CFS forums, though, due to the negativity and hostility towards recovered patients.

> viral infections (which are physiologically stressful)

There is evidence relating to viral infections, yes. But is it really necessary to refer to such infections being "physiologically stressful"? I just don't see the relevance of that.

> Here on HN there is myself and tomhoward for starters, and I know lots of other patients who have also recovered

Sorry, I didn't mean to imply recovery wasn't possible, but re-reading my comment I can see how it might have come across that way.

>But is it really necessary to refer to such infections being "physiologically stressful"? I just don't see the relevance of that.

Viral infections activate the HPA axis...that is what is meant by "physiologically stressful". See:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1224723/

The relevance is that stress seems to be the common factor as a trigger, and the stress system seems to be dysfunctional in CFS.

How did you recover? (Not an academic question. My wife has CFS.)

You can email me at cpncrunchhn at gmail dot com

You're right, I should've worded this more carefully.

What I meant is, there's people out there who dismiss this illness and I believe there's sufferers who have to fight to convince people that what they're going through is "real".

So for there to be physical evidence of something going on can only help everyone involved.

I didn't mean to suggest that without a clear physical marker that an illness isn't real, just that there are people who wrongly dismiss an illness without a physical marker.

> The leading hypothesis remains that chronic fatigue syndrome is a mental illness.

According to who? At least in the USA I see no evidence of that. The research is all pointing towards dysautonomia, dysimmunity, and metabolic issues.

Those are all well known to be significantly influenced by stress, and all the evidence is pointing towards the stress system being central to CFS.

I disagree with your conclusion that it’s “the stress system”, but even if so, that’s not a mental illness then. Whatever is going on in CFS isn’t causing behavior or mood etc. changes. It’s causing physical changes, such as the measurable dysautonomia, measurable response on the 2day CPET, measurably response in the invasive CPET that Systrom has been doing, so on. Sure CFS patients do often get comorbid mental illness such as anxiety about their health and depression due to their illness, but you’ve got the direction inversed.

If you look at the evidence, all the studies so far show that CFS is triggered by stress and/or viral infections, and that the HPA axis is dysrupted. So it isn't my "conclusion", it's just what the evidence is showing.

Also, mental health is intrinsically linked to the stress system. Mental stress causes depression.

https://link.springer.com/article/10.1007/s00213-016-4218-9

If you talk to patients who have severe CFS and depression, you'll see that it isn't comorbid depression. Instead it is a fundamental symptom related to PEM. (See for example, Whitney Dafoe's description of his attacks). I had the same experience. The depression is not psychological (caused by thinking about the illness). Rather it is PEM, and comes on suddenly after exertion. That is not "comorbid".

I know the HPA axis has been an interesting line of investigation, but not everyone with CFS is showing up with HPA axis issues. I still disagree with the direction that the illness is primarily a mental illness simply because it can result in some mental symptoms. If primarily it is physical in nature, as measured on various tests, and in your case may be caused by an endocrinological dysfunction, and secondarily it causes changes in mood or behavior that doesn't make it a mental illness. (I'm familiar with PEM myself but do not have any severe mood change during it myself.)

Take for example African sleeping sickness. After initial infection the patients have a number of mood and behavior changes, excessive sleepiness, confusion, etc. that might appear mental. But it would be absurd to classify it as a mental illness. It sounds very similar to the logic people are applying to ME/CFS in trying to label it mental.

The difference is that an organic cause has been found for sleeping sickness. Also, patients don't recover after psychological therapies, as they do with CFS. It's important to be open-minded to all etiologies.

And I never said it was "primarily mental". I think it is primarily stress, which can cause mental symptoms (but not always).

The literature published over the last decade or so gives a highly biased picture, because people keep threatening to kill psychiatrists who research CFS. Understandably, most psychiatrists have abandoned the field for their own safety. Lots of people are researching biomedical factors, but nobody has identified a plausible biomedical etiology.

https://doi.org/10.1136/bmj.d3780

So your evidence that the leading hypothesis is mental illness is the debunked PACE trial which caused harm to a lot of patients in the form of contraindicated exercise and denial of benefits, among the emotional harm it created.

And then to go on to claim because there's lack of research into psychological factors that the absence of that research supports it being the leading hypothesis. Oh, and also it's the fault of these mean sick patients that this is the case.

https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome...

https://me-pedia.org/wiki/PACE_trial

>people keep threatening to kill psychiatrists

No they don't. Several psychologists have made claims of harassment, all of which have been shown to be specious at best. In the UK at least the link between psychology and The Science Media Center has massively helped push the, dare I say it "fake news" of threats.

There is no dangerous CFS militant movement that threatens to kill psychiatrists. There are just some psychiatrists who can't handle criticism and get their journalist friends to write these smear articles in the hopes it will silence their critics.

https://me-pedia.org/wiki/PACE_trial#Allegations_of_harassme...

Can you please explain me how can be something that happens physically in white blood cells and their plasma a psychological illness?

Because your mind heavily affects the environment in which your cells live through hormonal and other system regulation (epigenetics). A mind that is constantly stressed (for example) causes your body to be in a different hormonal state than a mind that is relaxed. This in turn can (perhaps) lead to or sustain cell dysfunction (poor immune system response, etc). Mind and body are a system. This is not woo woo, this is documented but poorly understood (placebo effect for example).

Also, none of the above implies that the mind is the cause of all disease.

> IMO the broader issue is the stigma against mental illness

Yeah yeah that rubbish again. I have mental illness (see my posts for boring details) and I've always been open about it, except when it's so obvious that people pick up on it without my assistance.

I've never had a problem. Stop saying there is a stigma. Any stigma may be down much more to the individual's anticipation of stigma which might cause them to not admit stuff, but my experience is society (UK anyway) is very tolerant of it. You're really not helping.

There's no frigging stigma for mental illness alone. If it causes someone to reek or act unpredictably there might be, but it's a reaction to the sad manifestations, not the illness per se.

NB. I contacted a company I'd previously contracted for, explained the situation, met some of the guys, became evidently stressed in front of them (people + noise get overwhelming quickly), and now I'm working for them. It gives me summat to do and to get used to social situations again, and they get a DB guy. Win/win! No drama.

So I repeat, STOP claiming this crap. You're making it harder for people who have to deal with it.

(Edit: no argument with the rest of your post)

https://doi.org/10.1111/acps.12610

https://doi.org/10.1177/0840470416679413

https://www.ncbi.nlm.nih.gov/pubmed/16946807

Studies: now that's a commendable rebuttal. I like that.

OK, I've skimmed these, let's take some quotes.

"People with lived experience of a mental illness commonly report feeling devalued, dismissed, and dehumanized by many of the health professionals with whom they come into contact"

People who have such problems too easily perceive slights that may not be there. I know this, I have to compensate for it. It's too easy to get hurt.

"On the other, they [people with serious mental illness] are challenged by the stereotypes and prejudice that result from misconceptions about mental illness"

And I just don't find this. Bar a few idiots, never have. I find people kind and considerate.

"As a result of both, people with mental illness are robbed of the opportunities that define a quality life: good jobs, safe housing, satisfactory health care, and affiliation with a diverse group of people"

Quite, but that loss in my case is not down to stigma or discrimination by others but my own shortcomings caused by the problems:

I don't have a good job, I haven't been able to work for months. That's not discrimination, that's because I'm unwell and just couldn't.

A while back I got so far behind with the rent (because I couldn't work) the landlord had every right to throw me out. That he didn't only reflected on his decency and trust in me, but for that I'd quite likely be on the streets.

This "affiliation with a diverse group of people" - I don't have that because, fuck, guess why? And loneliness is a terrible thing. I've had few partners in my life, guess again why? It's not because they discriminated against me, it's because I'm not 'normal' to be around (though getting better, thanks for asking). It's not discrimination, it's them picking the more suitable partner. And I just can't blame them!

Does that make sense?

Anyway, since I've read yours, please read mine. You sound like you do actual research, but unfortunately this nastiness is my life.

https://news.ycombinator.com/item?id=19767632

https://news.ycombinator.com/item?id=19767742

https://news.ycombinator.com/item?id=19767906

Surely the 'sad manifestations' are the whole point. If you have never been unable to work because of mental illness, or if you have been signed off but otherwise fairly treated by your employer, then I think you have dodged a bullet that many others haven't.

> In my judgment, the 2017 regulations [...] were blatantly discriminatory against those with mental health impairments and which cannot be objectively justified. The wish to save nearly £1 billion a year at the expense of those with mental health impairments is not a reasonable foundation for passing this measure.

https://www.bailii.org/ew/cases/EWHC/Admin/2017/3375.html

Or in my sister's case, her employer not accepting a sick note because she is "making it up".

I've seen an autistic student being heckled by a member of staff as he should stop being such a baby.

There definitely is a stigma against mental illness. It may not be as bad as some people make out, but it's there.

Regarding your link, I don't have time to read it (did skim it) but I'm talking about personal levels of discrimination, not governmental. If you want to talk about institutional discrimination, some may have it worse, I know a trans girl whose operation is being repeatedly pushed back. I can see why, given the strictures on NHS funding, but it really has made things miserable for her.

Your sister may have just had a shitty employer. Someone I knew told me of finding someone literally crying in pain due to RSI, and the employer's response was telling them to take painkillers. There are bad employers, for sure. Mine aren't.

Does your sister's experience invalidate mine? No. Does mine invalidate hers? No. We are stuck, perhaps on terminology of what discrimination is, or perhaps I've been very lucky. People have been extremely decent to me, that's all I can say.

My fear is that by talking up the alleged stigma, we're reinforcing or even creating it. I hope that makes sense.

I have bipolar disorder. When I was depressed at uni and didn't sit my exams, my mum said "oh, so you couldn't be bothered then?" That's stigma against mental illness.

When my doctor signed me off for 28 days off work and my boss said, "how about taking it day by day? Wouldn't it be better for you to have something to do?" That's stigma against mental illness.

When I have to wait two months to see a consultant psychiatrist, that's stigma against mental illness. I wouldn't have to wait so long to see an oncologist, despite bipolar disorder having a higher chance of killing me quicker than some cancers.