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

[OneDoorCloses]

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 ?

My diagnosis is neurological M,E and I tend to leave it to last in my list of physical/neurological illnesses mainly because of the changes in attitude and bad treatment I have had as a result when first diagnosed.

I have it, it's absolutely real and it's hell trying to convince a world that can only think in terms of visible illness/disability.

King Kong, we do not know what causes me/CFS. We do not know if the cause is auto immune, chemical, mh, or any combination. Each sufferer had their own experience, and their own suspicions about what triggered their own illness.

I can understand and appreciate the debilitation that patients face whilst suffering with these conditions.
Not one medical professional I know would dispute that the pain is real.
I feel patients are missing out on really, really effective treatment because they refuse to accept that the condition they suffer with daily is predominantly due to a mental health condition.
Hey, what do I know

Oh, and low dose antidepressants are often prescribed as pain killers. It doesn't mean the recipient is depressed. But thanks for the input. Bloody hell.

Yes picking and for PMT

Picking, we do know that it isn’t autoimmune, neurological or a disease that effects musculoskeletal system.
That is a fact that is found by numerous tests/scans etc undertaken.

Causes of CFS/ME
It's not known what causes CFS/ME, but there are a number of theories – for example, it may be triggered by an infection, or certain factors could make you more likely to develop the illness.
Suggested causes or triggers for CFS/ME include:
viral infections, such as glandular fever
bacterial infections, such as pneumonia
problems with the immune system
a hormone imbalance
mental health problems, such as stress and emotional trauma
your genes – CFS/ME seems to be more common in some families

I was dx'd with CFS before getting my MS diagnosis and that was only because I pushed and pushed for an MRI scan!

Exactly my point picking, CFS/Fibro/ME isn’t depression, anxiety, or any other mental health condition.
They are separate, specific mental health conditions.

@KingKongNoWrong "commonly treated with low dose antidepressants (which are EXTREMELY effective)"

Not for everyone. I find that a bit of a sweeping statement. I was prescribed amitriptyline and it made no difference whatsoever so I stopped taking it as there was no point (with GP's knowledge). I take nothing for ME/CFS or fibro because they say there's nothing else they can give me and have been told there's nothing they can do. The hospital said that unless I was in a wheelchair they couldn't (wouldn't) do anything, so I have to manage it myself. I'm sure there are many others who have also been abandoned without treatment.

So nerve pain treated with amitriptyline is actually a mental health condition then. I wonder why they bothered doing carpal tunnel surgery on me that time then 🤔

(Since that seems to be the basis of King's argument)

With respect , kingkong what makes you so sure it’s a mental health condition ?

Even the medical professionals can’t agree on what causes it - but you seem sure enough it’s a mental health condition?

As a sufferer , I can assure you , it’s not my mental health that’s the problem

I’m reading through all of the responses and the advice is appreciated

My boss called me back at lunch but I was sleeping

She left a voicemail saying they’d arranged cover but we will need to meet to discuss my absence .

I know I’m going to have my contract terminated

But right now I’m too exhausted to care .

That’s because your carpal tunnel was damaged and the CT scan, alongside your symptoms confirmed this; hence why the surgeon operated to attempt to correct the damage.

kingkong your view doesn’t keep in line with the many research studies which have shown there are physical changes and bio markers in the blood / brain etc in CFS / ME patients .

m sure there are many others who have also been abandoned without treatment

Yep

I have this. The shit I used to get from people was ridiculous when I was still working FOR someone. I was forced to leave work because even on good days, I couldn't necessarily be reliable due to my symptoms.

She sounds horrible and I'm sorry. It's absolutely 100% real, and fuck anyone who says otherwise.

Psychiatrist told us that dd mental health issue was BECAUSE she had ME

Not that it was the cause of the ME

OP, it’s disgusting how you’ve been treated by your employer and completely unacceptable. You shouldn’t have to worry about calling your boss if you’re too ill to work, the same as any other person who has any other illness.
You’re grouping all mental health conditions in one box. Having a Mental health condition does not mean that you are depressed or have a personality disorder (for example). It means you have a mental health condition that causes you to feel widespread aches and pains, often accompanied by severe fatigue.
I’d love to disclose my profession but I’m afraid it’s too outing and I quite like my username.

Of course it exists. It is just the cause hasn’t been defined.
I suppose you could have a situation with someone who has undiagnosed anaemia or hypothyroidism and it might be called ME until the cause was found. I would have thought this is unlikely, but possible.
Likewise low levels of vit D or other deficiencies might be thought to be this if they aren’t tested for an diagnoses.
But the cause isn’t known which is why it has different names and is also sometimes called post viral fatigue.

Jaxtellerswife

It cost me my entire education due to an unsupportive school. I am very bitter about it, it's a shame people don't understand

Same. I was fortunate to recover in my 20's but M.E stole my teenage years.

Yes, I believe it exists. I can likewise see why employers would rather employ someone else though. Sorry you are facing this :(

Well thank you KingKong. Weird that two types of antidepressants I tried have not made any difference at all. I'm not even depressed. Never was.

Are you aware the classification of ME/CFS has changed & from October in the UK, it will be listed as 'supertype SCTID: 118940003 Disorder of nervous system'.

Thank fuck we're moving away from previous classifications under Mental Disorder and Multisystem Disorder. Current NICE guidelines are also currently under review and -thankfully- there is less push for Graded Exercise Therapy & Cognitive Behavioural Therapy which destroyed my life & put me in a wheelchair. All because it was believed I was depressed & just needed to work through it & get back to work!!!