Chronic fatigue syndrome classed as psychological illness on work's absence documentation

[OliveK]

I am suffering from post viral fatigue after a horrific year of illness. Obviously I am hoping that this is reasonably short lived. But i am also aware that I could be on a pathway to CFS/ME/long covid.
I was looking into the absence procedures for work and they require you to classify your illness/reason for absence.
AIBU to feel uncomfortable with CFS to be listed in the Psychological category? It just seems to be harking back to all that yuppie flu bullshit. I'm not wildly comfortable with having a long term "Psychological illness" on my record. I mean no disrespect to anyone for whom that may be the case. But I am physically unwell!

What nonsense. For a long time there were no tests to "diagnose" my condition. It didn't magically become a real illness the day a test was invented.

It is critical to distinguish the two things.

If I had anxiety and was regularly experiencing panic attacks that made it hard to breathe, I would not be happy if my employers noted that I had a lung condition and occupational health suggested that I try using an inhaler.

Seriously. ME/CFS patients have suffered in the extreme from certain medical professionals classifying a physical illness as psychological. Be really careful here. If you treat a physical illness as psychological you stop treatment and research into treatment that can heal. So yes it's a huge problem. Not because of what you might imagine, but because people have been forced down treatment pathways that have made them worse, not better. How would you imagine you'd feel if your very physical, pneumonia, cancer, you name it, was treated with CBT?

ICD 11 classifies it as a neurological problem. Link to World Health Organisation info:

https://www.who.int/standards/classifications/frequently-asked-questions/chronic-fatigue-syndrome#:~:text=In%20ICD%2D11%2C%20it%20is,code%208E49%20Postviral%20fatigue%20syndrome.

Exactly!

Absolutely this! ME/CFS was treated as psychological for decades which has meant people receiving treatment that was very damaging (never mind ineffective) and a woeful lack of research.

Having seen my fit, healthy, active teenager become bedbound by this awful, life stealing condition there is not a shadow of doubt in my mind that it physical.

Most of my reading seems to indicate that there is a problem with mitochondria. (The mitochondria are organelles in cells that use glucose and oxygen to release energy. If they aren't working properly then the body does not have the energy it needs to function.)

Interesting bit of research I was reading about earlier...

mecfsresearchreview.me/2024/05/08/researchers-hunting-for-something-in-the-blood-of-people-with-me/

@norasand has said it much more eloquently than me!
Absolutely no prejudice here. If I had a psychological illness I would have no issue declaring it as such. Then my treatment, reasonable adjustments etc if needed, could be properly tailored.

But I have a physical condition. One which is really terrifying,and part of the fear is around people's perceptions.

I'd like it to be properly understood, properly documented...I am desperate to get back to work and will need my employers help to do so.

Psychological illness suggests you can recover if you just think about it differently.

I manage my symptoms with rigorous discipline and mental positivity, but it doesn’t go away. It helps minimise the symptoms, but that’s as good as it gets.

OP literally says in her first post: 'I'm not wildly comfortable with having a long term "Psychological illness" on my record.'

That comment has ZERO to do with being concerned about how her condition is 'treated' and EVERYTHING to do with her own prejudices around mental illness because people judge. Ironic really...

@dammit88 comment is spot on!

We log my cfs/me absences according to the main symptom, so when it was the headaches as the main thing preventing me working we logged as headache category with comment of it being related to xyz. When it’s a cold makes my me/cfs worse we log as cold/flu category with comment about it making my ME/CFS flare up etc

@Jumpingthruhoops I can't tell you how far off the mark you are.
I apologise if my OP was poorly worded - I'm tired, tearful and scared.
All I mean is that the supports which may help someone with a real psychological condition (I don't even like that tern tbh) are just not going to help me.

@Jumpingthruhoops

I would be uncomfortable as well because it's not accurate!

i have both poor mental health (ocd, depression and PTSD) and physical illnesses (CFS). I wouldn't be uncomfortable with my psychological illnesses recorded as that but I would with physical illness, because they are totally different things.

Of course she's not. Did you read the following about yuppie flu? Which was exactly what ME/CFS sufferers have had to put up with. If an ME/CFS sufferer is expected to engage with treatment/ adjustments for a mental illness they don't have they can end up getting more unwell. One example is exercise recommendations which can make them way worse. You need adjustments at work to fit the right condition!

massive over simplification of psychological illness - one can recover by thinking differently. jesus wept

@OliveK , absurdgiraffe has posted a link to WHO definition you could share with your employer? hopefully they should recategorise it

I do get a bit irked by the way a certain proportion of people with problems like CFS and fibromyalgia react sometimes, when others (probably incorrectly) suggest their problems may be rooted in psychological issues, or even when people suggest there may a psychological component or ways that psychological intervention can help them manage. I'm not talking about OP here (or anyone else on this thread) — OP is justified in her objections IMO, and hasn't said anything that does down people with mental health problems. But there are a few whose vehemence and offence-taking and insistence that they have a real condition betray ugly attitudes to mental illness. I understand that they're frustrated, and they feel they're being dismissed (and they probably are being dismissed some of the time TBH), but there's no need to take offence at the idea of having an illness with a psychological cause, or to imply that saying something's psychological is the same as saying something's not real.

Equally, it pisses me off when, any time there's difficulty determining the cause of a problem, and the science hasn't yet caught up with reality, it just gets dumped in the "must be psychological" box. Psychological problems are real and serious and defined. It shouldn't just be treated as a dumping-ground, any more than something like cardiology or endocrinology would be. Imagine if every time somebody had a weird, vague, hard-to-diagnose health problem whose cause is yet to be determined, everyone just went "Well, we can't find any problem, so it's probably gastroenterological." As well as wasting a lot of people's time, it would devalue gastroenterology and make people with actual gastro issues as well as people with poorly-understood conditions all feel they were being dumped on the shit-heap together.

And yet this was exactly the course of "treatment" offered to ME/CFS patients under the psychological model ( and still is in some places that haven't caught up with the NICE guidelines.

Have you any idea how hard it is to get a diagnosis for this life changing, debilitating condition?

What an ableist stupid remark.

That's not psychological though, which is what OP's work are classing it as.

NICE Guideline NG206

Then, respectfully, you may want to edit your OP because that IS how it sounds. I wasn't the only one to notice.

You've also just said in this subsequent post that you 'don't like the term real psychological illness'. Why not? It is, after all, a thing...

The trouble is that people with CFS or fibromyalgia constantly come up against this and often from clueless medical professionals. They get completely worn down with it. If you read up on the history of those conditions you'll see why.

It's classed as neurological. You could correct them. Doesn't change how it affects you though, do you have the energy to fight it?

Well of course it’s an oversimplification.

The fact remains I am not going to get better with therapy.

There may be psychological reasons for my vulnerability to my condition- but my condition isn’t psychological.

You probably need to be clearer about your opinion if you want people to understand what you’re getting at.

@norasand , you’ve nailed it.