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 ?

o 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

Consultant told us that it was viral

Im going to go with its not a mental health issue

As the therapist, consultant, bone fide websites and psychologist have told us that its not a mental health issue

She does have issues now CAUSED by the ME...not the cause of the ME

How did she get to do that bonnes

It doesn't really matter what illness or disability you have - if you cannot do your job after all reasonable adjustments have been made, they are allowed to dismiss you.

It doesn't matter whether they believe you. This is the problem. If you have a chronic illness, particularly a relapsing/remitting disease it makes keeping a job very difficult. At some point you are likely to fall foul of an attendance policy.

Why are CFS sufferers so determined to cling to a "biomedical" vs psychosomatic viewpoint when what goes on in the brain is known to drive biomedical changes in medical circles and also in people's lived experience?

Because the psychosomatic viewpoint leads to the wrong approach for treating ME, which is ineffective and in some cases harmful. Effective treatment will never be found, if basic understanding about the illness is flawed. So it is pretty important to get that right, I'd say.

@Rufustheyawningreindeer A lot of the sports clinics at universities will do it. They all have the equipment but some scientists don't know the test protocol, but you can get it from the Workwell Foundation website and ask them to follow it. Link here and and here

Thank you very much

@Nutkins24

Nowhere on my thread have I suggested mental health conditions are less valid or more of a stigma etc .

If the cause of ME after research suggested it is a mental health condition then I, along with many others would be grateful for a cause and then treatment to be found .

As it happens , research has found it has a physical cause but they don’t know what .

It is listed in medical literature as a neurological condition .

You wouldn’t tell a person with Parkinson’s that it was a mental health condition because they know what causes it .

I have not suffered trauma , or abuse and I’ve never suffered depression in my life .

I was however , hospitalised with a nasty virus known to be linked to ME , many moons ago . And I never recovered from it .

That makes a lot more sense than the causal factor being mental - and recent research backs this up .

We know there is a physical cause , we just don’t know what that physical cause is.

It surprises me that people are still trying to cling on to the idea that ME is a mental illness in spite of there being no research to prove it is ; yet lots of research to say it’s physical.

To do that is ignorant and frankly insulting.

Perhaps I am wrong, but isn't stress accepted as being a major cause of some cancers? Which is just to say that stress, or psychological factors, can have profound and devastating impact on our bodies. I don't believe a brisk walk and some positive thinking will cure cancer. But it's true we only know a fraction of what our minds can do

Arthuritis has it spot on there I think

Zoomzoom I’ve not heard that about cancer but it’s interesting .

I think most people will agree that stress exacerbates ME symptoms , but it’s not known to be rooted as the cause of it .

If it were the cause, then CBT / counselling etc would help , but a lot of ME sufferers and the results of a recent trial show it doesn’t work .

I agree with a few previous posters. I don't actually believe that ME/CFS or Fibromyalgia exist (despite my mother having fibro).
I genuinely believe that they are diagnosed when the doctors have nothing left to offer in terms of tests, and I think they are blanket terms for a slightly larger group of illnesses which are as of yet undiscovered. They are of course, muddied by the fact that for a small minority of lazy people, they are the ideal 'illness' which decreases the credibility of people who genuinely suffer.

I feel for you OP. Your manager will never really understand unless she suffers herself, and I'm sure you'd not wish it on anyone else.

Fully agree it's a real thing. One of my loved ones has had ME for 15 years & i have seen his suffering & fear of telling others incase they judge/disbelieve

I don’t think you have directly suggested that, but the assertion that someone suggesting ME might have psychological factors is automatically insulting kind of suggests some sort of hierarchy of causes, with some being more ‘valid’ than others. To be fair, the NHS does still list these (below) as possible causes, so I think you could forgive some people for thinking phsychology is at play. I don’t believe your boss is right to question you like she did though. It’s incredibly rude and crossing a line. I think there’s still much to explain, and a lack of research. For instance post viral fatigue is debilitating but why do some people suffer the effects of this for 20 years, where as some will suffer only a few weeks?

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

OP, I'm so sorry you're going through this, it's bad enough knowing that you aren't able to do the job to your best ability, without having others also question the reality of your illness.
To the people who don't understand the anger around the mh theory, I don't think anyone has denied that stress can be a factor. It can also, apparently be a factor in cancer, acne, susceptibility to infection, etc. But research into cancer continues. Cancer sufferers aren't expected to cure themselves with a positive attitude. The level of research into ME is pitiful in comparison to the number of people affected.
Without the research, there will be no effective treatments. It's one of those situations where the patients have to educate themselves and keep up with the research, then meet with gp's and HPs armed with a copy of the latest research paper. Luckily, there are many many good HPs out there now, and I thank them. But still too many who think like kingkong, and like op's boss.
In a way, it wouldn't matter what ME CFS was categorised as, if the resulting treatment worked. If taking an antidepressant cleared up the symptoms of me/CFS, we could all hang out the bunting, and OP could stop worrying about her job.

My mum has a rare liver-based auto-immune disease called (primary biliary cholangitis) PBC, which has CFS as a symptom.

I've seen the horrible reality of living with an 'invisible' illness. My mum had a job in finance and loved it, working her way up to project management roles. Her boss at the time was very understanding and gave her a laptop to work from home as much as she needed to (she couldn't necessarily work all the time, but many mornings she could feel that even the journey to work would cause her to crash.)

Then her boss was replaced with a new one, who revoked the right to work from home and told her "everyone gets a bit tired sometimes." My blood still boils thinking about it.

Luckily she was able to retire early with a worthwhile enough pension that she can enjoy the days she's well.

My dad's done a huge amount of research to try and support her as best he can. He told me once to hold both my arms in the air for ten minutes, then imagine the fatigue in them over my whole body, with nothing I could do about it. It might not be exactly the same, but it's a lot closer to what my mum suffers from than 'tiredness.'

My son had glandular fever at 16 and just never got better - with a diagnosis of CFS / ME some months later. He's now almost 30. It is heartbreaking when I think about what he has lost - no 6th form, no university, no job, no girlfriend, only online friends - no-one ever comes to visit. He is doing an OU course - very slowly. It is heartening to hear of people getting better. If I had a magic wand...

So yes I believe. And much sympathy OP for your situation. I hope your boss gains some empathy overnight.

Interestingly, my Mum has fibromyalgia and I've also been diagnosed with it - but that's what I say (not 'I have it') to protect myself from those who 'don't believe in it'!

e. 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

Because there’s a long history which isn’t exactly consigned to history. The belief that it’s a mental health issue is still driving treatment and research in this country. That may change once the CBT/graded exercise papers are retracted but if you’re not looking for an underlying cause and treatment, then you won’t find it.

Mental health disorders can be serious and debilitating. I don’t think anyone with CFS would deny that. I doubt most of them would disagree that if you were also depressed, that might make symptoms worse, like it does in many other physical diseases. But classifying a disease as something it isn’t is unhelpful especially when the proposed treatment is essentially treating yourself and the fact that you are still ill is seen as a value judgement on how much effort you’ve got into making yourself better.

If we added everything that was allegedly less symptomatic with CBT to the list of mental health disorders it would be a very very long list not limited to asthma, excema, cancer, arthritis etc etc etc

I believe you, OP.

My niece has Ehlers Danlos Syndrome.. an element of that is chronic fatigue.

She’s 14. In pain most of the time. Low attendance at school. Sobs most evenings and just wants to do what her classmates do - go to school, go out, be a typical teenager.

I really feel for you OP. I have huge sympathy and understanding xxx

I have RA, fibro, CFS/ME and they also suspect EDS.

So yes I believe it exists. It rules my existence.

I'm not depressed by the way. I've been depressed before now I'm seriously not. No amount of psychoanalysis will help.

Having said that most of it apart from the EDS symptoms massively worsened after a prolonged period of stress trying to sort the kids' education etc out (they have SEN) and my life is never not stressed to the max tbh. I seriously think there's a link with cortisol (which is out of whack in some people who have EDS)

I believe it's real. It's awful not to be believed. I suffered from stomach migraines for a few years and I always felt like people thought I was exaggerating the pain of them. It's like, you can tell people, and explain the pain until you're blue in the face, but until they experience it themselves they just don't seem to get it.

Writing this from bed as I have CFS.

Pretty sure mine was triggered by stress. Lots of it, really tough, over a number of years, involving serious illness of people close to me. I was fit and active and kept going through all the trauma, digging deeper and deeper to find the resources to do that.

The stresses have mostly gone now. I’m relaxed and generally happy. But I’ve been left with debilitating fatigue. If I go for a short walk one day, I have to spend 2 or 3 days in bed recovering. I’m unable to concentrate. Work is out of the question.

Sadly knowing the cause (for me) doesn’t help the treatment. Much like if a tree falls on top of a car and crushes it, you’re left with a squashed car. You can take away the fallen tree but the car is still a wreck.

I find one of the worst things about it is because you're always ill, you're just expected to carry on. If you have a bad headache then it's 'meringue you always have a headache, it's no surprise, get on with it' whereas someone else with a bad head gets to lie down as 'they're never ill - it must be serious'

To those saying if there's no known cause it must be a mental illness. If you've suffered with this you just know. In my case my eyes go bloodshot and I get a pounding headache - if you had the same and someone told you it was in your head would you accept that or would it make you angry and frustrated that people tell you to do mental illness therapies that don't work. I've had cbt, been assessed for depression and looked into mindfulness etc. I sometimes get anxious but I recognise this and am good at managing it. No mental health person found anything that might cause cfs symptoms at all. I was discharged early from cbt as he said I was showing completely rational and appropriate thinking and there was nothing to work on. So telling me it's mental health related isn't helpfull.

One of the main things is if you feel good and it's a nice day and you think you'll go a walk. It's all pleasant until you get back and then you feel dizzy and sick and achey for a couple of days. I think most mental illnesses wouldn't have this reaction to light exercises. Also the fact that for a lot of people this followed glandular fever there is definitely a link there and glandular fever is 'real'.

There is medical research in a million of different fields and new discoveries in all areas of medicine all the time. Just because we currently don't understand something doesn't mean it doesn't physically exist! Everyone probably knows someone who had physical symptoms that were dismissed by doctors as being all in their head. A close relative of mine has had pain for the last 10 years (don't want to say too much as identifying). It was dismissed by doctor after doctor, they were told to have cbt, put on amitriptiline, pain management clinics etc etc. All the things that cfs sufferers are told to do. Suggestions it was all in their head. Until she found a specialist in this area and was diagnosed with an (admittedly rare) purely physical condition that requires surgery to correct. Internal damage has been done though since its been going on so long so surgery may not actually help. The point is, doctors often suggest mental health when they don't know what's wrong. It doesn't mean there is nothing physical wrong. In my relative's case getting a physical diagnosis was such a relief. They just knew it was physical - people know their own minds and bodies better than anyone else.

So if someone says they know it's not mental, please listen to them. It's their body and symptoms, they know best

@Nutkins24

No.

The assertion that it might have psychological causes when evidence suggests it doesn’t is the reason it is insulting.

If there was evidence to say it was a mental health condition, I’d be very accepting and would want treatment .

You have mis interpreted my post .

And mental health is a suggestion for the cause and that’s fine .

The issue is that when all the other factors are ignored in favour of it being mental health .