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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To ask what your views are on ME/CFS - do you think it’s real ?

312 replies

OneDoorCloses · 11/09/2018 11:32

I’ve just spoken to my boss to let her know I won’t be at work again today as I’m suffering with symptoms .

I’ve worked all weekend ignoring the signs that I’m ill and now I’m worse .

She’s fairly new to our department but knows I have ME/CFS and our conversation went something like this :

Me: “I’m so sorry I can’t come in again today , I’m suffering with symptoms and I’m exhausted “

Her : “Is this to do with the mental health issues you have?”

(I don’t have any mental health issues)

Me: “No. It causes x, y, z and I’m exhausted”

Her: “You’re not due in until 3pm . Have a hot bath and a sleep and I’ll call you at 1pm to check you’re still coming in.”

Me: “It doesn’t really work like that ; I’m sorry I won’t be in.”

Her: (huffing and puffing) : “I’m going to need to speak to (higher manager) as this is getting a bit much . X has managed to come in with a fractured wrist so I can’t see why you can’t come in after some rest !”

X is my working partner . Each task is assigned two people .

To and fro it went with me trying to explain but it was clear she doesn’t understand .

I feel like this all the time when trying to explain to people !

Now I feel guilty and useless .

There is so much disbelief around this illness . The PIP responses I have to counteract are full of a tone which suggests disbelief - but it’s not that I’m lying - it’s that they haven’t understood how this illness works .

I wondered what other people’s views of it are ?

Do you get fed up of friends / family / colleagues with it ?

OP posts:
ItLooksABitOff · 11/09/2018 23:07

Version2 hahaha. So, because you know a tiny bit about 2 people who are diagnosed and you judge those 2 tiny bits of information, now you're skeptical of the diagnosis.

Guess what - not doing exercise is typical of ME sufferers. Exercise makes it worse.

Fuck off with your judgement.

Imamouseduh · 11/09/2018 23:10

I’ll be honest: no I don’t believe it is an illness in and of itself. I think there is a psychological component to it and that sufferers honestly feel unwell but I don’t think it is a purely physical condition. I would never, ever venture this opinion IRL though or treat sufferers in any way other than with compassion. My sister suffered from it for years as a teen.

Rufustheyawningreindeer · 11/09/2018 23:13

Dds muscles are as hard as rock at the moment

She played netball on monday and now she wont be able to do anything for a week

MarcieBluebell · 11/09/2018 23:15

I don't see the problem with what version two said.

AbsentmindedWoman · 11/09/2018 23:18

I have a fibro diagnosis myself, which started with sudden onset joint pain over two years ago that has never gone away. I've had type 1 diabetes for over 20 years and in the last decade have managed chronic fatigue of varying degrees.

I do think the same as a lot of posters - that if you have never experienced it, or have not seen it at close quarters in somebody you love - you can't quite understand it.

Babyroobs · 11/09/2018 23:20

It seems like every other person I meet has fibro, yet I've been a health professional for over 30 yeas and barely heard it mentioned years ago, so is it just a general term to cover generalised pain ? I understand you need to have a Rheumatologist diagnosis, is there any treatment for it?

AbsentmindedWoman · 11/09/2018 23:22

I attend a pain management clinic, and treatments there include pain meds, TENS machines, hydro therapy, and support groups.

maxthemartian · 11/09/2018 23:25

I think it's absolutely a real physical illness and that the medical establishment just hasn't found the underlying mechanism or mechanisms yet.

MarcieBluebell · 11/09/2018 23:34

Remembered another thing a cfs therapist said, that it's social contagion. That in a village there was an experiment where one villager said he felt ill and then slowly more and more people had his symptoms. They believed it but it wasn't real.

There was no arguing with her. All my friends are active and happy. My flatmates are well. I want to join in but can't...

Ollivander84 · 12/09/2018 00:19

I have an invisible illness (well more than one but the main one!) of autoimmune neutropenia. So I'm immunosuppressed and inject myself once a week with a drug. The side effects are bone pain and "flu like symptoms" - for that, it should read "feels like the worst flu you've had"
I get shivery, can't cope with even clothing touching me, back pain, headache, sweating. And extreme fatigue

Undiagnosed for 8 years and my sickness record was shocking which is hardly surprising given I had no bloody immune system Hmm

I can empathise Flowers

doublehelix · 12/09/2018 00:39

Read Suzanne O'Sullivan's book "it's all in your head". (Nb title is ironic!!) which has a very good explanation of how psychosomatic illnesses are real illnesses with real not-faked symptoms that can be very disabling, but no physical disease process. Best responses are to a psychological or behavioural approach rather than drugs etc. But there is no quick easy fix and they are serious conditions.

thisisalliwant · 12/09/2018 00:42

My sibling has had ME since early teens. Left school at 14 as teachers couldn’t cope with the constant absences. At nearly 40 there are so many more good days than bad, in fact weeks can go by without them being severely exhausted. It’s only been like this for the past 5 years though. They went through nearly 20 years of feeling shit every single day. Our parents are incredibly supportive and my sibling still lives at home, and is now able to contribute both on a monetary and cerebral level to life with them.

BackToTheFuschia7 · 12/09/2018 01:02

The World Health Organisation classifies ME as a neurological condition, who knew we had experts such as @KingKongNoWrong on mumsnet to disabuse us of that silly notion and remind us it’s all in our heads.

AlmaGeddon · 12/09/2018 02:28

I think it is caused by stress hormones attacking the body. If you change your thoughts and mindset your stress hormones reduce, your symptoms reduce. But people are so ill with it they can't believe it isn't a disease inflicted on them from outside. And if you pay lip service to my view that it is stress hormone caused, you won't improve. You have to change your thinking. Most can't believe it is something their thinking can affect so it gets worse.

9amtrain · 12/09/2018 03:15

You "think" it's caused by stress hormones, based on what? Because if it was as simple as putting your mind to it, then congratulations you have won the Nobel Prize in finding the cure for a debilitating illness destroying the lives of millions worldwide. Are you seriously suggesting something akin to CBT will cure ME/CFS?

Bizarre.

Original poster
OneDoorCloses · 12/09/2018 06:45

I’m all for different theories but some of the subtle “it’s all in your head comments” on here are purely ignorant Confused

Stress hormones ?! Seriously ?!

I think I’ll leave it in the hands of qualified researchers to find a cause .....

OP posts:
CuriousaboutSamphire · 12/09/2018 06:47

Thank god for Toga or I'd have had to spend all morning typing what she said!

Alma if you think CBT can cure ME then I am sure you also think the power of positive thinking cures cancer, or aloe juice, or similar snake oil stupidity!

I won't even 'pay lip service' to your ridiculous self aggrandisement as that penultimate sentence And if you pay lip service to my view that it is stress hormone caused, you won't improve. is exactly how con men threaten and scare seriously ill people into all all kinds of harmful behaviour.

I'd report you, but maybe leaving that sentence there, for all to see, will be more useful!

CuriousaboutSamphire · 12/09/2018 06:48

Bold fail - the nastiness was And if you pay lip service to my view that it is stress hormone caused, you won't improve.

AlmaGeddon · 12/09/2018 06:58

Oh well, I didn't realise it was only pople with the same views who were to post here, you should say that at the start.

Beesandfrogsandfleas · 12/09/2018 07:02

I don’t have ME and I haven’t rtft.
I believe it’s a real illness in the same way I believe the earth is round. Why wouldn’t I?

Nutkins24 · 12/09/2018 07:11

This thread is interesting. I admit to knowing very little about these illnesses and I dont really have any opinion on causes as I’m not a researcher/doctor. But @OneDoorCloses no one has found a cause or a cure. Is it insulting to compare it to a debilitating mental health condition given the absence of evidence for it having a physical cause? Why? Are mental health conditions the bottom of the pile when it comes to deciding which illnesses are worthy and which aren’t? I imagine lots of people also struggle discrimination at work for having mental health conditions, are they less deserving and of sympathy? Pretty much all the posters here who have ME/CFS have balked at any suggestion that there could be psychosomatic factors at play. So there’s an interesting narrative going on where people are saying ‘of course mental health conditions are just as ‘valid’ but that’s not the cause of my condition’ well what is the cause? ‘We don’t know, there’s no known cause’. Basically what I’m getting at in a round about way is that you can see why some people may form the opinion of it having possibly psychological causes (whatever that actually means, chemical imbalances? trauma? As there’s also limited understanding of what causes many psychological illnesses) given the current evidence we have at this point in time.

CuriousaboutSamphire · 12/09/2018 07:12

Oh well, I didn't realise it was only pople with the same views who were to post here, you should say that at the start. Erm... are you saying that nobody is allowed to rebuff your view? Cos that would be, you know, hypocritical!

Yogagirl123 · 12/09/2018 07:18

Yes I totally believe OP.

I have Multiple Sclerosis, I often don’t leave the house for days due to fatigue and pain.

CuriousaboutSamphire · 12/09/2018 07:20

Is it insulting to compare it to a debilitating mental health condition given the absence of evidence for it having a physical cause? Why? Are mental health conditions the bottom of the pile when it comes to deciding which illnesses are worthy and which aren’t?

There is a narrative, one that informs medical opinion, and that is ME starts with an infection - like many I had glandular fever. ME itself is NOT an infection but an immune response gone wrong.

ME is a coverall term for a list of fluctuating symptoms that not all sufferers have all of at any given time, which causes all sorts of issues with diagnoses and treatment.

But the reason ME sufferers dispute the mental health tag is that is doesn't feel right. Take myself for example: After getting ME I have been bed bound, got married, got 2 degrees, worked as a fitness instructor, a Uni lecturer and am now self employed.

The only time I have suffered stress, anxiety and depression was in my last 2 years teaching, I stayed too long. For the other 30 some years I have been proactive, active and happy, just not always capable of remaining awake after physical exertion. Yes, one of the things that for everyone else improves mood absolutely floors ME sufferers. THAT is the issue.

To say it is psychosomatic ignores the lived experience of the sufferers and has often stymied further research.

BonnesVacances · 12/09/2018 07:34

DD has has ME for nearly 3 years. We have physical proof of it as she was recently able to do a 2-day Cardiopulmonary Exercise Test (CPET) which showed categorically that her metabolic energy systems were dysfunctional and her test results showed that she was moderate-severely disabled.

There are thousands of pieces of evidence that ME is a genuine physical illness. It's really not a question of belief, but whether you are informed or ignorant. I really recommend anyone in the latter camp, including OP's manager, watch Unrest on Netflix.