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 ?

So you don’t get PIP or you do? I think your manager is out of order for the way she questioned you but I can see the frustration a work place would have if you phone in sick a lot and at random intervals, rather than havng one long period off whichnthey can cover. Don’t most work places have a policy about how many periods of sickness you’re allowed over a year? This would be the same for any type of illness.

I think the issue is that ME/CFS is seemingly used as an umbrella term for an undefined illness, iyswim? I have IBS, and it's the same with that. My IBS was diagnosed after they tested for everything else and only a diagnosis of IBS remained. I personally think, anyone with chronic pain/fatigue is suffering from something that doctors are unable to diagnose (for whatever reason) so they are given this diagnosis to cover their symptoms. So in that regard, no I don't think it is "real" as in a real diagnosis. I think all of the symptoms are real, for sure. But therein lies the issue I think.

I have it myself, as well as fibro and a couple of other things, so clearly I believe it exists. I did once get told by the company Ops director, who also ran HR, that it was a made up illness and there was no proof it existed. I'd been diagnosed by the hospital, mentioned it to my new boss (so she knew why I did things like wear fingerless gloves to keep my joints warm when they were playing up etc) and she said I should inform the company to cover myself if I needed any adjustments in future. So I did as she asked, got a doctor's letter saying what I was diagnosed with and basically spent a meeting getting shouted at ("what do you want us to do about it?!") when I'd warned her how the meeting would go and wasn't asking for anything. My boss was so upset with how I was treated that SHE cried afterwards.

I have it, have had for about 30 years. Over that time I have been bed ridden and I have also managed to become a fitness instructor, a teacher and am now self employed.

For all of that time I have been very careful to manage my symptoms, you get to know them really well, don't you?

I don't know anyone who is not bedridden to get PIP. I certainly have never had any support beyond my GP and DH. It is not a well understood condition at all!

Have you passed on Action for ME or ME Association info to her?

www.actionforme.org.uk/

www.meassociation.org.uk

PS I've never taken time off because of it and have had it since 2010.

I worked with a girl with fibro and the eye rolls and snide comments she got was unbelievable. I used to see her sob in the toilets because she couldn’t read a simple document, and the agony she was in sitting in a badly adjusted chair. If she was acting (which so many people accused her of), she deserved an Oscar as I could see the exhaustion in her eyes. I’m so sorry you are going through this.
If you can, ask your manager to read the spoon theory, available on Line. It helps those without a chronic illness to understand how important pacing yourself is

I did get PIP at enhanced rate .

I spend most of my time at home if I’m not working as I’m too exhausted for anything else .

My PIP was then removed at review - I lost out by 2 points ; this was in spite of there being no changes. In fact , I was worse ans reported this . I’m waiting for a tribunal date.

I do understand my absence causes problems , we always need two people for the task so they will get agency cover but I know I’m a burden to them.

I have another thread going about how I’m trying to resolve this.

I definitely believe it's real, my family member really struggles with it. She's incredibly hard-working and dedicated but she's recently had to give up her job because even part time (she works in education) the workload and stress made it impossible to manage her symptoms effectively. I agree it's a very misunderstood illness.

psuedo you’re very “lucky” to not have had to take any time off with fibro - I understand that can be very painful .

I realised I was at the end of the spectrum when I couldn’t manage a trip to the doctors without needing to rest for hours afterwards .

I had it. It's real. Like many I was very active until I became ill, and then it was like running into a brick wall. I was ok and then I wasn't. Screwed up my teens, meant I missed out on going to University and I didn't recover until I was in my 20s.

People generally aren't sympathetic as they don't understand the difference between being very tired but a good nights sleep will help and being absolutely exhausted and sleep doesn't help. They also think it's just about being tired, and don't realise about the brain fog and the muscle pain and all the other crap that goes with it.

My teen ds has ME.
School have no fucking clue what he goes through. .
And they don't seem to care.

I worked with someone with a similar type of condition that meant she could only work part time. The powers that be got rid, so be careful.

Well I know its real because I have it OP.

Most people don't get it, the ME/CFS. It can be a bit soul destroying on occasion to get so little sympathy or understanding. Its like I have an imaginery illness, almost . I can't imagine having any other illness where people never ask you how you are. Really, my few friends, never, ever do. Something I can't imagine doing if it were the other way around .

One friend i couldn't go for a long walk with her because of my ME/CFS. She said well I get pain after walking, we just have to put up with it! I think this was reference to some arthritis in her legs - but load-bearing exercise (within reason) is good for her - my condition it can make everything worse. Another friend said to me "have you tried counselling" and when I said I had but it doesn't make any difference to my illness, she was most surprised. These are intelligent women! I think my illness has made me much more isolated because of the lack of understanding, not just the illness itself, if that makes sense.

I wonder whether to tell people now. Often you get blank looks and zero sympathy (sometimes both). I have wondered recently if people have stopped calling their illness "ME" as I have seen a lot more use of the term "fibromalgia". I think ME probably never recovered from its yuppie flu and Dr Simon Wessley's psychological labels.

I'll come back to you OP about your work situation later, but I'm tired now. But just wanted to say I do so get where you're coming from and how disappointing and difficult it can be.

I have fibro cfs lyme type symptoms have done for a year after previously fit and well, find work can see I am ill but made me get signed off as recurring absences too much. Doctors dreadful its either you'll be fine next week, its anxiety, you look fine or you need to be on 2ww for this cancer, its like there's only cancer or anxiety or you just imagined symptoms. Meanwhile no prospect of getting better and likely to lose job so feel for you. Its grim.

p.s. your boss sounds awful. you need to take it to the next level, HR, or whatever to clarify things, get the support or whatever that you need. i don't know if you are in a job with a trade union. either way, get it all out in the open - things will only get worse otherwise . by taking the initiative you at least have a chance of resolving things in your faviour.

My dd has had CFS for the last year, she wasn't in school for the last two terms as on most occasions she could barely get out of bed, even a small amount of activity could sometimes mean a few weeks of doing practically nothing, she has had constant headaches and pains in her joints as well.

Over the last few months she has got progressively better and is now back at school and I am keeping everything crossed that she continues to improve.

I have no doubt what so ever that it exists, it affects people differently.

But when I have mentioned to people about it I have had a lot of comments about how I just need to be firmer in getting her to school and how she just needs to see how much fun she can have once she's up and about - but it really doesn't work like that.

I absolutely believe it's real and I've known three or four people over time who suffer with it. I totally sympathise with you OP. Does this not come under the EQA / DDA ? The problem is, is that there are those out there who self diagnose and 'use' it when in actual fact they do not suffer from it. I have been involved in cases at work where this was proven and in a couple of cases, was admitted by the person who was central to the issue... I am NOT suggesting in anyway that anyone on here, or their relatives, are doing that, I hasten to add!!

I have a diagnosed MH condition (and therefore is 'unseen'), which can be debilitating (and it comes under the above legislation for reasonable adjustments and disability sick leave categorisation), but there are times when I am perfectly well, and look it. Who would believe me at those times? It's only because I (within a network) have worked tirelessly over the years to raise awareness at work of these matters that policies and training have happened on the subject of MH (I'm lucky enough that my job has wide enough perimeters to be able to do this). It's criminal the way that some workplaces treat those with recognised and diagnosed illnesses, whether they are physical or mentally based.

As said, OP, you have my full sympathy and I hope you go to HR when you feel well enough, and perhaps suggest some form of awareness training for managers and colleagues alike.

I think it's real, but that there is an unknown cause and CFS is what they use to label this mystery list of symptoms.

I also think it's often misdiagnosed. Look at the bloodwork of everyone with CFS and I bet you they won't have had near enough everything tested. Just a suspicion.

If you are regularly calling in sick because of your condition, you're going to trigger a sickness review at some point (if you haven't already) so HR are going to have to get involved to discuss what reasonable adjustments could be put in place to facilitate you staying in your job. (I assume you think that's feasible long term - you don't provide any detail on the nature of your work so it's hard to comment.)

TBH, HR getting involved might be for the best, as they will then be able to explain to your manager what is and isn't an acceptable way of line managing someone with your condition!

I don’t have ME/CFS but I believe it exists. I also believe some people use it a bit like some people use migraine as an ‘excuse’.

When I get a migraine I get vocal auras and can’t speak. I slur and mess words up, if it gets bad enough I physically can’t speak. So no, senior manager, I can’t take an aspirin and power through .

Your manager is totally in the wrong and has either encountered people clearly swinging the lead or literally has now idea what it means.

hope you’re feeling better soon.

I don't really understand the "excuse" thing - everyone I've ever met with diagnosed ME/CFS clearly had it, it caused such wreckage in their lives and they spend years picking up the pieces. only one person was questionable - and she just said she had it for 6 months in the past (though usually you have to have it for more than 6 months for it to be diagnosed). do you mean a friend just says I don't feel like going out tonight, I've got ME/CFS?

I’m on a “red status” for my absence which means further sickness is guaranteed dismissal .

I have had all the reasonable adjustments I can be offered . I know my sickness is unacceptable but it’s also genuine so I see no way out

I can’t afford to quit with 3 children (one who has SN) , a low earning husband and a cat to support .

I work in project management - it’s not highly demanding in my department but I’m exhausted all the time .

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

I believe you.
I'm typing this on my phone whilst my eyes are open after a sleep. So far it's taken me nearly five minutes and I've dropped the pgone twice. My eyes are closing again.
It's so hard to describe that bone crushing fatigue to someone who's never experienced it. It's so much more than just being tired, and no amount of rest helps.

*understand