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 ?

amiright

Personally i think its bollocks

I dont personally believe that they throw benefit payments round like confetti

Oooh personally

Obviously my word for the day

iamawoman hypermobility can be physically seen, they use the Beighton score to measure joint laxity. It also doesn't come with the same level of derision as a ME/CFS or fibromyalgia diagnosis so I wouldn't include that at all. Or lyme disease to be honest.

I have fibromyalgia (and hypermobility) and go out of my way not to tell anyone now (if I can) because of the lack of understanding. No one can say I've not had enough tests either because the NHS must have spent a small fortune on testing me over the years. All I've ended up with is more additional diagnoses like movement disorders.

Rufustheyawningreindeer No they certainly don't. For DLA/PIP you need everything backed up by GP and consultants including copies of hospital correspondance and the forms you have to fill in amount to a small dossier.

it is real but (for some go's) it seems to be an easy 'go away' diagnosis for a group of treatable ailments (thyroid, deficiencies, depression).

sorry you feel ill today, I hope you are better soon!

Absolutely chirpy

We had to jump through hoops for special consideration for an exam

And they aren't giving us any money

I sometimes wonder whether some fo the problems with conditions like this is that they can be seen as extensions of 'normal' symptoms, that people 'fight' through each day? I totally appreciate that fatigue is not 'just' tiredness (I have several other chronic illnesses, which cause fatigue), but I think some people are inclined to elide the two, and think if they can 'push' through a bit of tiredness, after a late night or a hard week, why can't you?

In some ways, my other conditions are easier to manage: everybody knows that breathlessness, or seizures are not 'normal'. But 'tiredness' seems so similar to fatigue, that I can think people can think they 'understand', and then dismiss your efforts as not being enough? I think it is something that we can even do to ourselves: why can't I manage more, be more like everyone else etc etc. The symptoms are not so clearly defined, so it is much harder to see the edges of 'illness'....

oxcat

I completely agree

I have an under active thyroid and have had non anemic iron deficiency

Both of those have made me exhausted at times, although nothing like ME!

And the amount of people who told me ' well everyone gets tired Rufus'

Oh and dont get me started on my well meaning friend who told me her son was as tired as my daughter following an activity...THATS COS HE STAYED UP TIL 3AM PLAYING VIDEO GAMES...SHE WENT TO BED AT 8PM AGAIN!!!

And breathe...didnt say that of course, just thought it really loudly

I really feel for you, I had CFS at the age of 14 and luckily got over it by my early twenties. It's so misunderstood.

I felt like I was old aged, everything hurt, my glands were up constantly, my head hurt, my throat hurt and on top of that nobody believes you're ill. I'd have thought things would've moved on by now given there have been advances in diagnosis but it doesn't seem like it.

chirpy it isn't a nasty assertion, they say it themselves. They have no intention of working and fibromyalgia according to them is the easy way out. It can't be clinically diagnosed so can't be disproved. It makes me sick as the person that I know that does have it failed t he ESA 'test' and was deemed fit to work which was laughable. On a bad day she couldn't keep her eyes open for more than five minutes.

Rae fibromyalgia and CFS/ME interchangeable? I thought they were different conditions, but I stand to be enducated on that point.

I think a PP hit the nail on the head when they said that whatever it’s called, you still get these debilitating symptoms that significantly affect your life and that’s the point. “ME” has a bad rep because of the yuppie flu thing, but it doesn’t mean your symptoms are any less real.

I had post viral syndrome for quite a while a few years ago, and I think I’m right in saying that if it had gone on much longer they would have started calling it CFS instead. Same happened to a friend of mine’s daughter. It was months of hell - fortunately for me it eventually went away, but you have my sympathies for having to deal with that long term.

With regard to work, I think there’s more at play than just not believing the CFS label. I have an enduring mental health condition which flared up last year due to something truly terrible happening, and my manager’s attitude was that I should snap out of it, he didn’t need time off when a (not very) similar thing happened to him, so why did I. I got zero sympathy from him and have had zero support from him after returning from work, with him even telling me that if I had another episode he’d want me to be sacked. Fortunately his manager doesn’t see it the same. But at the same time, people who I have worked with for years cannot believe that I have always been and continue to be one of their highest performers, because that doesn’t fit with their image of people with my condition. I also have medical professionals constantly wrangling about what to actually call it - my view is that I have these symptoms, it leads to this problem and that medication keeps it in check. Call it what you like!

I’m not sure you can expect people to “get” what you’re going through, as terrible as that sounds we are only human. The world would be a much better place if everyone had the ability to genuinely empathise with others but unfortunately evolution seems to have largely left that one out.

I hope you can work something out with your work.

I believe it's real. Because I'm very familiar with living with a condition which can't be seen and has no set pattern for everyone who has it. I have MS and work full time. I've worked full time with it for 20 years and for 6 employers and only one of those has known. I had to tell them due to the way a health question was worded on a form I had to fill in after starting the job. Prior and since, I've answered "do you have a medical condition which could affect your ability to do the job?" With "No". That said, I come home from work and have to rest for at least an hour each evening before making dinner and I spend all weekend either resting or making meals in advance to make the week day evenings easier. I also often have to take a days annual leave if I'm going to an event or having a busy weekend.

Didn't mean to detract from the purpose of the thread, it's just that reading some of the replies got me thinking about the things I need to do to enable me to do my job. And I also think that very few people would understand if I told them/had to take time off.so I do understand

@oxcat1
I completely agree and was going to post the same thing.

People know what tiredness feels like and they know that usually when they are tired they can push through. They think that fatigue and tiredness are synonymous. Therefore, their thinking is "why can't someone with ME just push through?"

I don't have ME but I have enteropathic arthritis and hypermobility. I take a lot of drugs that make me feel awful. The number of times people say to me "Oh yes, My knee hurts. I know how you feel". Maybe they do, but it's not just my knee that hurts. It's every joint in my body - my hands, feet, knees, hips, shoulders, spine...
On the days I take methotrexate I get migraines. I feel sick and faint. The rest of the time I am exhausted.

The the crohns flares because I am run down. Then I catch a bug because my immunity is low but I still have to drag myself into work because I can't afford to lose my job.

Most people don't understand what it is to live with a chronic illness because they don't have to. They understand a short lived stomach bug or flu, or sadly, cancer even. But not the relentless, never getting better lifelong unremitting chronic illness.

As government is unwilling to fund proper disability benefits alongside rehab they force people to work for employers who understandably get frustrated by chronic illness. We can't conform to standard sickness policies and yet there is little that is done to support us.

I don't understand it. I don't understand how tired I got when Pregnant I don't understand why sometimes I am too tired to do stuff and just feel "lazy" . I know in Theory that EDS makes you tireder than non sufferers but still can not understand why I can not do as much as other people. I don't understand why it is getting more difficult as I get older. I know that if I do more for a few days then I get a day of exhaustion and sometimes brain fog but I still feel that if only I tried harder I could do more.

It is really strange because it is invisible. Invisible things are harder to believe in. If you were unable to get out of bed at all I think people may understand it more, it becomes something visible... Ie the bed (or wheelchair etc) the fact you can get up sometimes and look well makes it hard for people to understand. It is better when there is a blood test or something concrete that can prove you are ill.

Does not mean that it is not true and does not exist. Nor that the boss handled it in any way appropriately.

Hope you get the support you need to work.

ME/ CFS/ fibromyalgia are all real. Even if there are varying definitions as to their exact criteria, and even if they can be frustrating to be diagnosed with because they can be a dustbin diagnosis.

Mental health illnesses are just as real too - even if there is not a blood test or scan that can pinpoint what is happening.

In time, I think the endocrine system and the interplay between different hormones will help us understand mental illness on a physiological level. Likewise gut biome.

Yes I believe it's real,I'm going through tests at my local hospital so they can rule everything else out so they can tell me I have ME.

The first test and they've found I have fibromyalgia,really looking forward to the rest of the tests now

Your boss sounds like a right dick,have you got anyone at work that could speak to her for you?

My daughter had it. She went from being the liveliest, most sociable, active, 12-year-old to being unable to keep her eyes open for more than 5 hours out of 24, unable to walk across the road, unable to watch a movie, unable to brush her hair. She recovered and is fine now, but we thought she was dying.

The symptoms are definitely real. CFS/Fibro/ME are mental health issues which cause aches, pains and chronic fatigue.

I have not read through the thread. I have ME that meets the stricter ME criteria, the ICC criteria. CFS criteria use a broader definition with some only requiring fatigue. Therefore some diagnosed with CFS or CFS/ME will meet the narrower and more specific ME case criteria but crucially not all so the term CFS/ME or just CFS can be an umbrella term for those with fatigue for a variety of reasons to people very ill with severe ME.

I have been ill for 20 years with ME and bedridden 24/7 for the last five years. Yes, ME is real.

The Institute of Medicine in the USA in 2015 did a report on ME and concluded that ME is “a legitimate, serious, and complex systemic disease that frequently and dramatically limits the activities of affected individuals” and it “needs proper diagnosis and treatment.” At present there is no medically recognised treatment due to very limited research and it having been wrongly pushed as a behavioural disorder by an influential group of psychiatrists since the late 80’s despite some research showing biomedical abnormalities since the 1950’s. Medical agencies wrongly went with this idea and there are still medical professionals through lack of inappropriate education and training on ME who think it’s behavioural or has a large psychological component. It has no more a psychological component than MS, Parkinson’s or cancer.

To add, just seen a few comments above which make me sigh. Those of us with ME readily accept mental health issues are just as serious, but ME is not a mental health condition. It’s a physical disease. Mental health treatments do not treat the disease and we as patients want research to hopefully one day develop medical treatments that will treat the underlying pathology and give us some quality of life back. ME can be from mild and managing part time work to very severe, tube fed and in a darkened room.

Since when is physical pain a mental issue?

Toga - it’s a mental health condition with physical symptoms.
If you are diagnosed, the nervous system, autoimmune system, musculoskeletal system etc are not diseased.
If you believe they are diseases; which part of your anatomy is diseased?
There’s no stigma attached to these conditions, but they are not a disease by any stretch and are commonly treated with low dose antidepressants (which are EXTREMELY effective).

I have it and it is totally real. I also have fibromyalgia and a few other "main" conditions.

As a useful information guide to surviving life if you become housebound - this is a site written by an American lady, hope it helps someone

howtogeton.wordpress.com/how-to-save-spoons/ - all sorts of tips

The general public (and much of the medical profession) have been wrongly informed that fatigue is a large component of ME. This is not correct the cardinal feature of ME is an abnormal response to minor exertion. For a person with severe ME the mere energy required to brush their teeth in bed can increase all their symptoms, make them feel more ill as well as leaving them utterly drained and exhausted. For someone with mild ME working half a day can be their limit or a gentle 20 minute walk before they need to stop and rest until they gain a little bit of energy back and all their other symptoms ease.

The ME ICC criteria call this abnormal response to exertion in ME Post- Exertional Neuroimmune Exhaustion (PENE) It goes on to explain the characteristics of PENE are:

“Normal fatigue is proportional to the intensity and duration of activity, followed by a quick restoration of energy. PENE is characterized by a pathological low threshold of physical and mental fatigability, exhaustion, pain, and an abnormal exacerbation of symptoms in response to exertion. It is followed by a prolonged recovery period. Fatigue and pain are part of the body’s global protection response and are indispensable bioalarms that alert patients to modify their activities in order to prevent further damage.”

ICC criteria here if anyone interested www.meassociation.org.uk/wp-content/uploads/2011/07/ICC-short-version.pdf