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 ?

Ive had CFS and it’s absolutely real. Mine was less serious than you and I had to put everything I had into work which meant I didn’t do anything else for a year, but at least i was able to do that to keep my job.

To be honest, any long term illlness is a PITA for your employer. I doubt she doesn’t understand it, the reality is she probably just doesn’t want to deal with it. You know you can still be dismissed if your Illness means you can’t perform your role? You need to agree reasonable adjustments now. Good luck

Having seen my mother, who is a tough cookie with a high pain threshold, in tears from the pain of CFS/ME – yes. Having seen her bedbound for three months and then housebound for another three after a total collapse – yes.

CFS/ME is definitely real, but it’s definitely complex and affects everyone differently. My mum is able to manage p/t irregular work and doing things by pacing herself, but pays the price for too much activity and has been living like this for over three decades. A late friend of hers who also had it was physically not too badly off and could remain fairly active, but had extreme difficulty concentrating and had to give up his high-pressure high-achieving job. Another family acquaintance with it has not been able to go out of the house without a wheelchair for over 20 years. Through working with Action for ME she has come across nurses, teachers, bike mechanics, businesspeople, stay-at-home parents etc with it, so it’s not ‘Yuppie flu.’

I’m sorry your manager is being unhelpful OP - maybe you could find some sources from CFS/ME charities to send her and explain why you're not just fine after a rest?

I used to be sceptical about it until I had a colleague who had suffered with it for decades. There's no way he was putting it on; he was incredibly dedicated to the job and hard working. And it was so obvious that he hated having it and hated having to take time off, feeling like he was letting people down etc. Fortunately, we had a really great boss who (I felt) really went the extra mile to make adjustments for him. Sometimes my colleague would even ask for an air mattress to be provided so that he could attend a meeting lying down, and nobody batted an eyelid. Because the boss took it seriously, everyone else followed suit. I'm sorry that your boss is so useless, OP :(

@OneDoorCloses I suppose I am "lucky" to have managed not to take time off, but honestly I've worked hard at managing my conditions to achieve that. There have been many days where I really should have had time off but didn't. If you want a laugh (not really) there was a time when one foot was so swollen and painful I could hardly walk - I wore slippers in the office (the knitted boot kind) because I couldn't get my shoes on.

I always book annual leave after anything that I know will be more taxing than an average day (e.g. if I have to attend an event, or travel anywhere) to try and recover. Fatigue is so difficult to explain to people. It's not tiredness - you can power through that to a point. It's more "if I keep doing this I will collapse" kind of thing, but people don't realise and say things like "just do this and then you can have a rest later". The problem is you can't "just do this" as if it's a choice.

I have ME but I don’t really talk about it to people because it’s so misunderstood and I feel like I’m being judged for just being lazy.

But yeah, when you have to choose whether you will go to the post office or the supermarket that day because you know you won’t be able to do both, and when either of those activities leave you so exhausted you’re shaking and need to sleep for hours to recover, it’s pretty real.

Yes I have to say I never told work about it because I didn’t want to appear weak. That’s awful and probably unconsiously tell you that I acknowledged it wasn’t well understood

I believe it exists. A school friend I have known for over 30 years has it and most days needs a mobility scooter to get about.she was denied pip at first but won on appeal.
She is always tired even after making a sandwich and suffers so much pain she is on a cocktail of tablets.
She used to work full time in an office but now struggles to go upstairs.
She is definitely not making this up.
I feel sorry for you OP having such an unsympathetic manager.
And like a pp earlier I get migraines where I can't see, slur my words and throw up. Some of my managers in previous jobs have been like take some painkillers and just come to work. I will give you easy jobs for today.
Err no I can't see to drive and I m not risking killing myself or anyone else on the road.

I think that the symptoms and debilitation caused by them are absolutely real but agree with a PP that the 'diagnosis' is given when doctors are unable to find any other cause for the symptoms so I'm not sure that CFS/ME is a distinct condition but more of an umbrella term used for people who are clearly suffering but no other physical or mental illness has been diagnosed which accounts for the symptoms

I certainly have sympathy for all affected by this but can ynder

I believe it exists. I think a significant number of people who have CF actually have depression etc and have been misdiagnosed (although I imagine there is some chicken and egg there) but I also think that everyone else genuinely has it. I think that sometimes it is easier to say people are making it up because we don't know what it is or what causes it or how to treat it. Just because there is not a blood test for it or a tablet to cure it doesn't make it less real

My relative is a consultant in rheumatology and they runs CFS courses. It must be real for the NHS to have treatments surely! There's a poster in my surgery advertising a learn to live well with chronic illness and I noticed fibro was on there. Hope you are OK OP.

OP the way your manager has handled it is awful. Make a diary and keep any evidence you may need incase she does take it further. I'm currently off work due to CFS/ME. It's destroying my life. I love working hard and then enjoying my family. I am able to do neither right now. The hardest thing I find is you start to question yourself when there are so many doubters! They make you feel like a fraud. Then you feel that overwhelming exhaustion or you do something small like grab a drink and you need to go back to sleep and you realise you are not a fraud. I never realised how worthless you can feel.
Remember to look after yourself. Stress will do you no good.

Sorry that should say fibro and ME

I believe it exists yes.

I can see why employers find it hard to deal with because a) all long term sickness is a pita for them and b) it's less predictable than other illnesses and can flair up/down at will.

I'm not sure what the answer is, but sounds like you need to get HR involved.

I think the problem with ME/CFS/IBS/Fibro and now lymes and hypermobility, is that although the symptoms are real for the person experiencing them, there is nothing clinically for the Drs to observe , often people are given this diagnosis by a gp because they cannot treat the person as there is nothing to treat other than subjective pain, fatigue anxiety and because it is comorbid with anxiety and depression it is often perceived as having a psychological component.

I personally believe its used an umbrella term for 'we have no idea what's wrong/cba to do further tests'. Top a&e consultants I worked with believed that too. My Mum was diagnosed with fibro myalgia, I kicked up a bit of a fuss and she eventually got tested more thoroughly and diagnosed with severe osteoarthritis and needed 2 full knee replacements. She then lost 6 stone for her op and now her 'fibro' symptoms have disappeared...

I believe it is real, as a social worker I've assessed many people with the condition and I've seen how it can affect people.

Equally however, I've also assessed a small number people who have/claim to have that diagnosis and whilst I do believe they are genuinely unwell, their behaviour in regards to other aspects of their lives has made me question whether there is an psychosomatic element at play.

Having numerous members of my family diagnosed with a variety of autoimmune conditions (coeliac, ulcerative colitis, RA) I also wonder how often CFS is given as a convenient diagnosis to women to make them go away rather than properly investigating for a range of autoimmune conditions.

It is real. A friend's DP had an awful few years over 10 years ago. She felt helpless not knowing how she could help him. He is so much better now-sails, runs and works for himself which he likes as he's in control. He is careful to keep to good sleep habits and eats sensibly. He feels he wants to stick to this as he doesn't want to relapse.

Yes I believe it’s real

DH and I run a business and one of our employees has CFs. I’ll be honest, from a business point of view it can be a bit of a PITA, but we suck it up and deal with it.

We’ve seen how much she struggles and how it’s affected her life. She is brilliant at her job and we don’t want to lose her

She’s part time with us at the moment as she wasn’t coping full time and we pick her up/take her home - one of her big worries is getting to work and not being fit to drive home.

I agree that I think it’s an umbrella term. She thinks that her CFS dates from when she caught a nasty flu bug a few years ago and has never really got over it. She’s had various tests but they can’t find anything definitive

I too have it along with fibro & RA (plus lots more) and over the last 12yrs I've been.
Diagnosed I've realised that "Unless you get it, you won't 'get' it"

Absolutely 100% yes it's real.
Dd's friend's mother has it and has been effectively disabled for decades, going back to illness after a tick bite in her 20s. I am hugely admiring of her and her husband and how hard they work to make sure their kids don't miss out.
And I think a lot of the time when the symptoms are blamed on depression, the doctors have it the wrong way round and it is the physical illness that is causing the sufferer to be (quite understandably) depressed, but because they can't find a cause they write it off as psychosomatic.

I very much hope we will improve our understanding of this kind of illness soon.

I was diagnosed with ME at 15. I made it through school at Uni barely... I slept from coming from school to the next morning every day and all weekend. I had no social life at all and felt continuously ill. I had to be collected from Uni part way through my first term having run my mum saying I couldn't get out of bed and thought I was dying.

I am 41 now and manage my much milder symptoms well. I am sure it exists however and have a huge sympathy with those suffering with more severe symptoms.

You need to:

• send the boss the NHS info on your condition - www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/ They might listen most to the NHS info rather than the various trusts etc. involved with the illness.

• speak to your union.

Good luck - it's misery isn't it.

I have CFS and have 2 friends with fibromyalgia. I believe both are true illnesses, though CFS is an umbrella term and probably includes 2 or 3 conditions. I had a busy weekend and am now paying for it, and will do for several more days. A good sleep doesn't make any difference, though bad sleep can make it worse.

I am lucky in that my colleagues have seen me deteriorate over the past year and understand that I am doing my best. It's not easy for an employer, but it's much worse for the sufferer!

...but because they can't find a cause they write it off as psychosomatic.

This highlights the misunderstanding among doctors and, by extension, society. I have ME and was practically bedbound for years in a dark room. I also have many psychiatric diagnoses all trauma based. Now, I could say that I can tell the difference between tiredness caused by a depressive episode and that caused by true physical exhaustion (the shaking going to throw up type) but really, what difference does it make (apart from treatment pathways)? They are both 'real' as I am experiencing them.

I think those who say ME isn't real is either claiming everyone who has it is outright lying (and as a pp said, looking at the destruction it leaves what would be the point - you'd hardly do it for all the 'sympathy') or are betraying their true beliefs regarding mental illness ie that anything psychosomatic is all in the mind. Just like depression and schizophrenia and PTSD is all in the mind.

There was a story recently about a young woman who was granted euthanasia due to, in part, psychosomatic disorders that meant she was unable to walk and had to be carried from room to room. Would anyone really say about this woman, whose symptoms were so unbearable that she chose to end her life, that they weren't 'real'.

Personally I don't give a shit whether something is deemed psychiatric or physical beyond what treatment and help is most appropriate. I once had a psychiatrist that said 'the mind is the body'. People need to start thinking a little deeper around these issues.

OP, sorry for what you're going through

I have a diagnosis of CFS and it is very much a ‘real’ condition. By keeping daily activities low level where I can, I am generally able to manage the symptoms. However, if I then overdo activities or have a particularly heavy work schedule, I recognise the signs which indicate that I need to allow myself more resting time or to try and scale back on activities. My symptoms present themselves as slurring speech, mind fog as well as muscle pain and at its worse I feel that I just can’t function at all or I’m unable to keep awake or keep my eyes open.

I don’t feel depressed, more very frustrated that I can’t always be as active as I’d like and then feeling guilty that I’m letting my family down.

On the surface, I look ‘normal’ ( healthy appearance), average weight for my height which I think makes friends who don’t understand the condition feel sceptical about CFS. What they don’t realise is that they will generally only see me around in my more well days as I tend to retreat and rest when the ME is at its worst.

It’s really difficult explaining to other people that it’s not simply not just a case of ‘feeling tired’. The condition can really be debilitating!