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 ?

But do all the pp saying that ME is a 'real' illness think that we need a discussion as to what a 'real' illness constitutes?

Does it mean that there must be physical indicators? And if it does, does that mean that it must not be a psychiatric illness, seeing as there are about as many physical indicators in ME as in, say, depression (that they have so far found given the miserable funding afforded ME)?

If ME is a 'true' illness, as in there is a visible evidenced organic process happening, does that mean that depression, where there is no blood test, no brain scan and very little in the way of visible evidence is not a 'true' illness?

For the record I believe there are physical processes going on in ME (I believe the HPA axis is out of whack for one, combined with the link between ME and heart problems). I just worry that by insisting that ME is a 'true' illness it by default starts to suggest that there are conditions that aren't 'true' or are somehow less.

Even if everyone with ME were making up their symptoms that would still be evidence of something wrong and something that should be attended to in a compassionate manner. As I previously said, I personally feel the only real reason to categorise ME should be so that the right treatment can be developed not so that we should be helped to decide whether to take the person suffering from it seriously or with compassion or disdain.

It reminds me of the way people with mental health conditions used to be treated over a century ago. One of the reasons psychiatry fixated on the biochemistry aspect (the belief that it's chemical imbalance) is because they felt at the time it was a way to stop those with mental illness being treated as moral/spiritual failures and locked up in appalling conditions. If they could argue that these people had a 'true' illness then they would hopefully be treated with more compassion. I see many parallels with the discussion with ME.

The believe it is real in that it's not an 'excuse' or all in the mind etc, but CFS is a problem with how the body functions and that impacts on psychological experience and is impacted on by emotional factors too. As in, just because we can't see it on a scan doesn't mean it isn't happening. Does that make sense?

There is a very intetesting series on Netflix at the moment with regard ME/CFS, Lyme disease and chemical sensitivity.
It's called 'Afflicted'. Fascinating.
Sorry to everyone suffering 💐

Recently had my 20 year anniversary from when I first got ill with ME and also recovering from the worst relapse I've had in years. If people knew how exhausting and painful this condition is they would never accuse us of making it up. And I don't have depression, I'm just annoyed and frustrated that my body doesn't want to work properly.

FFS, I thought things had moved on. I had ME for 5 or so years back in the day when it was referred to yuppie 'flu and we said CFS rather than ME.

I remember sitting on the floor and not knowing how i was going to lift my arms to put babygros on the clothes horse let alone get up and change my toddlers nappy.
I remember waking up knowing I'd had a good night's sleep but not feeling in the slightest rested.
It's an exaustion very different to any other and it's very difficult to explain to those who have never experienced it.

It definitely is very real.

Sorry you are having such a shit time of it. As a ray of hope, it is possiible to recover.

The only way to survuve is to pace yourself, which is easier said than done.
I found that a really high dosage of GLA in the form of starflower capsules helped a little.

Hope your symptoms reduce soon.

’I think a significant number of people who have CF actually have depression etc’

Can I ask why you think that? Have you ever experienced the diagnosis process in yourself or supported someone else through it? As IME a diagnosis of ME will not be made without a thorough investigation into mental health issues, and a guarantee that if any exist they are already well managed.

M.E is definitely real and whilst there do seem to be more medical professionals now believing it the general public still find it so difficult to grasp just how hard it is for people with this illness. I don't have it myself but I spent much of my childhood helping to care for my mum who could barely move for months at a time at her worst. Thankfully she has had a period of 'remission' for a number of years so as long as she is careful and stays within her limits she manages ok. But it took years and years to get a diagnosis and that had to come from an expensive private M.E specialist in the end. My best friend who is in her thirties now struggles immensely with this and is coming to terms with the fact that she may not be able to keep hold of the job that she is so passionate about and loves. It's hard to see her going through that. I don't really know how it works with HR etc as I have never been in a normal work environment but I really hope you can find someone in your workplace who might be able to support you or at least be willing to try to understand your symptoms better and then in turn be able to relay this to your manager.

I do believe it’s real and your boss has not behaved in a reasonable way. I’m sorry you’re struggling

I dislike this perception that just because something might be classed as as a psychological illness than it is less "real" or have less of an impact. this needs to be stamped out by health professionals but also the public. There may be biological reasons behind CFS that are not fully understood but I also think people shouldnt be dismissive of mental health treatments/ psychological therapies as they could help.
Im sorry that you have had a hard time OP and your boss shouldnt have treated you like that.

Can you get a fit note from your doctor to say you are only well enough to work 50% of the time for the next month to give you some recuperation time but work also gets an employee in?

I do believe you. I have autoimmune conditions and it seems that unless something can be seen, people don’t believe and even then they doubt things are as bad as you say.

Can you also complain about your manager to HR?

I have it. It's so hard to explain that it's not just tiredness. The 'just go to bed early' or 'go to the gym, it'll give you more energy' comments are hard to take.

A few people have been more understanding after they've had proper flu or have been pregnant as the tiredness experienced with these is much closer to the tiredness with cfs. I've felt better on a couple of hours sleep with a newborn than when my symptoms are bad.

I stopped arranging stuff with some friends who were annoyed at me having to cancel - they said they knew that I couldn't help it but were still angry at me which just made me feel more guilty and awful about letting everyone else down.

My symptoms are mainly extreme fatigue and headache. Some people can tell by looking at me when I'm having a relapse as my eyes go bloodshot. It gets worse just after my period and much worse in the winter.

I have tried changing stuff in my diet, coming off hormonal contraception,various supplements, acupuncture, reflexology, cbt,cutting out caffeine, mindfulness, grwded exercise etc. Mindfulness and going gentle walks regularly and pacing probably help me the most but still only to a small extent.

I found my work tried to understand but they just didn't get it. I sent them some fact sheets but they seem to struggle with the whole thing about getting better and worse and flare ups and I could see they were frustrated there is no cause or cure. Saying that, they did let me work from home a day a week to pace myself better which helped a lot. Interestingly they a lot better with similar conditions that are physical eg back pain that comes and goes so sometimes I wish I'd said I have that! They do know I work very hard when I'm ill though. And I feel I am stuck there - despite the cfs I have a good track record (I look after myself well and rarely take sick days for anything else) and I just feel like I can't move company incase I have a flare up, it would be such a bad first impression

I manage to work but only by doing pretty much nothing outside work. I can socialise about once every couple of weeks.

My symptoms went away when I was pregnant with my first and haven't come back til now (I have a second who is10 months old). I've had a flare up the last couple of months and am getting very worried about how I'm going to cope returning to work. With the way I'm feeling now I just couldn't cope

*work v hard when not ill!

Oh and no way I am depressed. Only get fed up when symptoms appear. The rest of the time I'm actually v happy with my life - get on great with family, building my own little family, like my job, like my colleagues, nice friends, no money or other worries, i like where we live, i eat well etc and no other issues. When I'm not having a flare up I score very low on all depression indicators

Sorry i havent read the thread yet i just have a question for curious

Over that time I have been bed ridden and I have also managed to become a fitness instructor,

Was that in periods of wellness

If dd cant act she wants to be a personal trainer and i really dont know how she is going to manage it if she doesnt get better

I believe it to be very real.
I suspect it's actually several different illnesses that have either been missed or we aren't able to spot yet.
I have fibromyalgia. It sucks and I really wish they could pinpoint what causes it. Instead I get things like "Have you tried homeopathy?"
Mmm, a non existent medicine.
Or "Oh, you hide it well!"
This from the person who branded someone in terrible pain with a kidney stone a "drama queen".
I have concluded I can't win.

ME is without a doubt in my mind a real condition. I started getting symptoms at 15. I'm now 26 and I'm on 11 medications a day, most at the highest possible dose. I'm also in receipt of PIP due to the limitations it puts on me. I feel incredibly guilty for the effect my condition has on my wife, who is basically my carer. I'm incredibly lucky that my boss is very understanding and makes allowances where she can so that I can continue working, but it's very difficult. I had 8 hours of sleep last night for the first time in weeks, and I'm still exhausted. My joints hurt, my skin is burning like I'm on fire. In school I was top of my class every year, now I'm lucky if I can string a sentence together due to the confusion it causes. Nobody would choose to make something like this up. It's hell.

I absolutely believe it exists.

My then 5 year old DD had it quite severely. It took 2 years to get the diagnosis - seeing specialists around the country. She would sleep for 16 hours a day sometimes. Anything she did no matter how small, wiped her out for days.

We were referred by Great Ormond Street to a great doctor in Bath who put her on a CBT plan. I was very skeptical. She basically had to start over from scratch with activities. Everything she did on a daily basis was given a traffic light colour. Green = Good / Amber = OK / Red = Bad. For example:

Brushing Hair = Amber
Watching a (not previously watched tv show or film) = Red
Watching a previously seen tv show or film = Amber
Reading = Red
Colouring = Amber
Walking upstairs = Red

The list goes on. But once we'd identified the different groups she was only allowed to do 2 Hours of Red activity & 1 Hour of Amber activity per day. This included school. So she started going to school for an hour a day. Every few weeks we increased the red activity by 10%.

It sounds so utterly bizarre and out there, and I didn't believe it would work - but we gave it our best shot. The school & LEA were on board, her education didn't suffer. It took a year of this 'therapy' but then she was back to a normal child (energy wise)

I've rambled - but yes - it absolutely exists, and people do not appreciate how awful it is until they've seen it or been there.

Hugs for you OP.

I know one lady that definitely has it but lots who use it as a way to stay on benefits.

Sorry to everyone afflicted

Have you tried homeopathy?

^I've had that many times too, Cigars. I try not to be insulted, its just ignorance I suppose .

I'm also someone who's not 'depressed' - though when I'm shattered, ill and in pain I'm hardly feeling on top of the world. But on days when I feel physically better (good days) I'm much more lively and fun than your average person I would say.

I've always suspected there's quite a lot of women with ME/CFS on MN. Its kinda something you can do thats not too demanding , but vaguely keeps you engaged with the world. But I often think there are other things I'd much rather be doing.

I know one lady that definitely has it but lots who use it as a way to stay on benefits

I am assuming you have evidence of this quite nasty assertion oldgimmer? I am sure I am someone people might comment on with 'there is nothing wrong with her' because I am a master of masking my symptoms and I only see people maybe once a week.

As a pp said, if you make a fuss you're a drama queen and an attention seeker and if you hide your symptoms as best you can then you are faking it and on the end of comments like yours. Unwinnable.

That should have read, if you hide your symptoms you are accused of there being nothing wrong with you

I'm surprised someone saying they know lots of people use it as a way of staying on benefits, is this common?

AmIRight
well it depends whether old gimmer can back up their claims with evidence or whether he/she has seen these people on their good days and assumed they are lying. Statistically it is unlikely. As it stands benefit fraud remains at around 1%. Sadly we live in a time where we disbelieve disabled people first and ask questions later. Just look at the amount of people on this thread saying they are not believed. Here is an interesting quote from the BBC on benefit fraud rates and shows a sad insight into people's ill-founded beliefs around it. I imagine it's even harder to defraud the system since that survey seeing as legitimate claims are being turned down.

What percentage of benefit payments do you think is lost to fraud?
A survey in 2013 by Ipsos Mori suggested people believed that £24 out of every £100 spent on benefits was fraudulently claimed.
What do you think - too high, too low?
Want to know the real answer?
It's £1.10 in every £100.