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
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
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.
CFS can absolutely cause mental illness though - constant fatigue, and sometimes pain, can take a terrible toll.
Everyone I know who has recovered (including myself) has said that dealing with psychological issues is the most important factor in recovering.
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.
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.
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.
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.
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.
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.
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".
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.
And I never said it was "primarily mental". I think it is primarily stress, which can cause mental symptoms (but not always).
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.
https://me-pedia.org/wiki/PACE_trial#Allegations_of_harassme...
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...
Also, none of the above implies that the mind is the cause of all disease.
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://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.
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.
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.
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
For all these people to know there's something actually physically wrong with them is massive.
IMO the broader issue is the stigma against mental illness. The leading hypothesis remains that chronic fatigue syndrome is a mental illness. Both your comment and the linked article imply a false dichotomy between "real" physical illness and "imaginary" mental illness. Mental illnesses are every bit as "real" as physical illnesses. They cause real suffering, real disability and real death. If chronic fatigue syndrome happens to have a psychological etiology, then sufferers still deserve compassion, effective treatment and proper research.
The research in question has a relatively small sample size and only compares CFS patients with healthy volunteers. Identifying abnormalities in immunological or stress-response functioning may not be particularly useful in proving that CFS is "real" (i.e. non-psychological), because we have identified similar abnormalities in patients with depressive disorders. Some researchers argue that major depressive disorder may be an autoimmune disorder, although this is far from a mainstream opinion.
https://doi.org/10.1073/pnas.1901274116
https://doi.org/10.1371/journal.pone.0138904
https://doi.org/10.1016/j.it.2005.11.006
https://doi.org/10.1016/j.pnpbp.2004.11.003