To wonder how many people have CFS/ME?

[millionsmissing]

Recently a close family member has been diagnosed with ME. It's an awful illness that is stealing her youth.

She doesn't speak about it because of the stigma and lack of any available treatment or research into possible treatment.

She has resigned herself to having to live with this condition, probably for ever. She went from being active, fit and doing a job she loved to being unable to read, drive, hold a conversation without losing the thread of what she was saying. This happened, quite literally, overnight.

When she was first diagnosed she learned that many people with this condition find themselves so ill they are unable to get out of bed for years. She is lucky in that she is not as ill as many people are. But she doesn't know if she will ever again be able to hold down any full-time job, let alone one that allows her to use the skills she has worked hard to develop.

It's an invisible illness.
No-one sees her when she is feeling really unwell. She stays in her room, with the lights dimmed, and the heating on, whatever the weather, wearing the big jacket she no longer needs for mountaineering. She has all the kit for this illness, hats, gloves, down jackets and sleeping bags - she never thought they would be used for this.

Most people have no idea how ill she is, she only sees them when she is well enough to power through on adrenaline.
She doesn't look ill. People are constantly telling her how glad they are she is better when she is well enough to socialise. She has stopped telling them she isn't because they can see for themselves that she looks fine and so they assume she is either lazy or a hypochondriac.

But the energy used on not looking ill costs her days as she recovers enough energy to function again. She often finds herself without the energy to stand up for long enough to have a shower.

So AIBU to wonder how many others suffer from this condition and to be outraged that we are not researching like crazy to find the biomedical causes of this illness that is stealing the lives of so many?

[PerkingFaintly]

What is it I'm supposed to not give up?

I'm not waiting to get better to live the life I have. I live what I've got. That's all any of us can do.

If I get better, that will be nice. But my slow improvement (for no obvious reason) has stalled (also for no obvious reason). So I'm just keeping on keeping on.

[BishopBrennansArse]

Pretty much, Perking.
Unless I’m supposed to just keep pushing my body beyond its limits until I can’t look after the kids any more jut because to not do so is to have a negative attitude

[Clankboing]

I wonder what causes it? I have fibro though it could easily be ME.

[DontMentionTheWar]

The people on here that keep saying that if you're positive it will all go away are part of the problem and should be ashamed. I am extremely positive. I have learnt to drive and have taken professional exams, I've got married and help run a business. However, I feel ill all the time and I've missed out hugely on life, I can't do any kind of adventurous travel, I haven't been able to have children, I have never been able to work full-time and everything I've achieved has been so much more difficult than it would have been for a healthy person. I have been ill since my mid-teens.

[PerkingFaintly]

And yes, a lot of people do recover fully or partially.

Of course a specialist in a CFS/ME unit is likely to believe "mindset" "faulty beliefs" "symptom focussing" are significant. The dominant model in the UK is the Wessely School which states that CFS/ME is a psycho-social condition.

That's WHY there has been such poor investment in biomedical research.

[TriJo]

My husband has a mild case of it, he's had it for 5 years. It started when he pushed way into overtraining when training for the London Marathon in 2012 and couldn't recover.

[misshannah]

I have M.E./CFS and like most people have been stigmatised. I now only refer to it as M.E.

I am able to work full time in a high pressure job, however i'm paying the price by not being able to function in the evening and deteriorating as the week goes on. By Friday i am pretty much a gooey, headachey, sleepy zombie with no brain function.

I do wonder how much longer i will be able to work full time especially since I told work in June (when i was diagnosed) they have instead piled the work on and have not been at all flexible in terms of me changing my hours.

I work in HE and Occupational Therapy were great when i spoke to them but my manager seems to think as I initially labelled it CFS that my only symptoms are tiredness... It's pants!

[RaptorsCantPlayPoker]

The people on here that keep saying that if you're positive it will all go away are part of the problem and should be ashamed. I am extremely positive.

No, I didn’t say be positive and it will go away, I said positivity helps. Which it does.

I also said:

I should add that mindset isn’t everything, not by a long shot!

I fully understand the agony of it and also that positivity can only do so much.

[PerkingFaintly]

*Raptors, I think you're spot on with this: my identity is not found in CFS.^

It's true of all disabilities, of course.

[misshannah]

I like most sufferers feel crap almost 24/7 with no respite. I look normal, but i can see the difference in me. I feel like a hypochondriac that amount of symptoms i can experience in 1 day. I want to start a family ASAP but i worry about it all the time.

[BishopBrennansArse]

I’ve been told that it’s likely that my unrecognised and untreated CFS was probably responsible for my later developed auto immune conditions. The specialist my DD saw is very much of the auto immune school this is why we are trying to get her effective treatment ASAP.

[stayathomegardener]

I've had it 15 years and DD 18 for 5.

Two interesting points, one when I stopped being positive and gave in to it my energy went up considerably. I think I was exhausting myself trying so hard.

And two when people don't (can't) understand the name CFS or ME I always cheerfully add, you know Yuppie Flu

[Birdsgottafly]

"In my opinion (I will get flamed here) the minute you start to believe you'll be like it forever is the moment you give up on life."

My physiologist (ME specialist), was of the opinion that a level of acceptance was going to be hugely beneficial to me.

Part of my anxiety was that I wasn't getting better (mine was post viral).

Alongside that was taking each day and not looking into the future, blah blah (for the first time in my life). But when you've got the DWP asking about work capabilities etc that's difficult.

My whole life was outdoor activities. Without my wonderful toddler GC, I'd be in a completely different place, mentally. So it's unkind to label others as negative.

Family set up/relationships/ income/housing all effect your reaction to becoming disabled.

I'd love to think that I'm going to get better, but a year on and I'm not. So I've started to plan occasional days out around my condition and I'm planning a future based on the possibility of not getting completely better (im 50). Age makes a difference again. It will probably take me at least six months, to a year, to regain strength once I am better.

So for now, ill plan for the next few years, making the most of what I can do now.

That way I'm not disappointed and I am looking at what I can do with gratitude and positivity.

[SootSprite]

I recommend she looks into Action for ME. They have forums both for adult sufferers, child sufferers and family members. My dd has had it for about half of her young life, she is only 16. It is a horrible, horrible condition.

Also, google Unrest, it is a film well worth watching.

[QueenStreaky]

I'm newly recovered after eighteen years of CFS, triggered when my son was born. Too ill to be a 'proper mum' to him - we all lost out because of it as I wasn't well enough to be active with him and do fun stuff. But we got through it - no choice really.

I did a CFS self-management course that lasted a year. I'd been ill about six years by that time. It taught us how to understand the illness better, and especially our personal experience of it. Mindset and attitude WERE important factors and we were encouraged to use some of our precious energy on positive, fun, even frivolous things, rather than wholly on responsibility and necessities - that way depression lies, a very common co-morbid with CFS. We learned how to have contingency plans for when we overdid things, and how to pace properly so that the crashes came less often. Very, very gradually, several of us began managing the illness better and it definitely benefited us all.

I am completely recovered now and I know that because I get viral infections again. My immune system impairment meant I rarely got colds etc, whereas it's more common for pwme to get everything going. I've been well for over eighteen months and very active with no after-effects. And it was definitely CFS because two separate doctors confirmed it.

Horrible illness, very poorly understood, but awareness does seem to be improving with more research happening. But very difficult to recover from, and I think that's due to limited awareness by the HCPs who are supposed to be treating/supporting it. It IS possible though and I would encourage anyone with a dx to focus on recovery rather than being lumbered with it for life.

[millionsmissing]

Raptors glad you are doing so well. And don't worry - I get that you were offering hope.

I know that a PMA can help with doing what you can rather than not. And hope is important, of course it is.
When she was first diagnosed she was pointed to some information and it literally terrified her. The prospect of being bed bound, or only able to go out in a wheelchair was not one she was going to accept - not unless she found she had absolutely no option.
She decided not to find out any more about her illness or connect with others. She decided to just do what she can do and not to use her precious energy worrying about what she can't or what the future might hold.

But the belief that a PMA can make this go away has added massively to the pressure she felt from friends and family to "act well", to just plough on however ill she was feeling. It took a long time for her to notice that this would result in her being really ill again for a couple of weeks each time she did it.

She has learned that she cannot afford to be close to people who would put pressure on her to spend her limited energy pleasing them because she "looks so well". She doesn't blame them for not getting it. But losing those relationships has been one of the most distressing things she has had to deal with.

Who would have guessed that just sitting in a car to travel to a family celebration could be too exhausting to even contemplate?

[millionsmissing]

Thank you ShovingLeopard

[Mamamagellanic]

I’m one of the 250k.

2012. I was vibrant, almost 30, busy, energetic, positive, attractive, brilliant at my job, thrived on challenges, was epic at multitasking, articulate, funny, quick witted, intelligent, hopeful, fairly social and the to do list was up to date, I was organised, I had a twinkle in my eye. I perused the shops. I could lift my arms. I could take the stairs. I had hobbies, I had a zest for life.

2017. 2 years into a diagnosis that started in 2013/14. I am struggling. I am just about keeping my head above water. Every so often I have a moment where I know this’ll be forever, but when the crash has passed, be it hours or days, a little spark of hope comes back. I forget words, I struggle to form sentences, I have all the will in the world to perform a task but always have to stop long before it’s done. I have no social life despite trying. Friends have melted away. My muscles are wasting away because I can’t get enough exercise. My skin is dull, I have aged dramatically, I have constant pain, most days I cannot drive, some days I cannot be upright. When I sit down blood pools in my feet. Im dizzy, my eyesight is going, my ears constantly ring, I can’t eat vegetables, chocolate, garlic, any processed food, additives, nuts, dairy.. I can’t even burn Yankee candles. My house is a mess. My life is disorganised. A cold will floor me for a fortnight. There’s more but you get the picture.

I’m the OPPOSITE of what I used to be. I’m an old woman in a young woman’s mind. Only yesterday I googled ‘lost all my friends since I got CFS’ - I don’t particularly blame them, the stigma attached means I get well meaning advice like see a therapist. Tried that. Change your diet. You just need a holiday. We all get tired though don’t we.

I’m a mother and carer to severely disabled DD10. I feel like I’m watching her childhood fly by while I’m stuck in a vat of molasses, unable to see, mice or think clearly. My job was exhausting before, it’s almost impossible now. All I want is to care for her like I used to but I’m hindered, I feel like I’m trapped in the prison of my own body. I’ve tried so many ‘miracle cures’, each failed attempt leaving me feeling desolate. The disappointment is excruciating. Kind GPs have run all tests I’ve asked for, humouring my attempt to prove I don’t have cfs, that I have something treatable. No such luck. Thyroid meds and vitamin D keep me upright but the rest must be CFS.

It’s utterly depressing, yet, I’m not depressed. I have drive, I have hope, I make plans (that I have to cancel) I WANT to put DD in her wheelchair and go for a long ramble, I WANT to have a glass of wine, I WANT to go shopping, simple things. But when I try, I push it, and I crash. I crash to the point of not physically being able to care for her. On the worst days I can’t even look after myself.

It’s brutal. It insidiously wraps itself around you like a snake and squeezes every last drop of energy out of you. After advocating for DD I have nothing left to advocate for myself so I’m just fading away into obscurity.

I’d do anything for my health back. Anything. Until then, all I’ve got is the hope that tomorrow may be the day they make a scientific breakthrough. Tomorrow may be the day they figure out the mechanism of what causes CFS and they can develop a real treatment that will take me from 50% functional to 80%, that’d do.

The worst thing about it is the misunderstanding among people I thought cared about me. The outdated view that it’s ‘all in the mind’ - if that was the case antidepressants would have worked (yes, tried them too) positive thinking would work. CBT would work. I know how to ignore my symptoms, I now know the difference between psychosomatic and physical symptoms yet still I crash. It’s incredibly frustrating, isolating and soul destroying.

[afrikat]

I have it. I'm currently trying to phase back to work after 4 months off but it's really hard. My brain feels like it's cotton wool and some days I can barely walk. I need to get my pacing right as I am constantly overdoing it with the kids as I hate missing out and feeling like I'm not able to parent but I then have a crash and spend days recovering. I hate the fact I have gone from a healthy, energetic person who was doing well at work and who had loads of plans to someone just...surviving. I absolutely believe I am going to get better and I am as positive as possible but it's not particularly helping

[Birdsgottafly]

Of course a specialist in a CFS/ME unit is likely to believe "mindset" ""faulty beliefs" "symptom focussing" are significant. The dominant model in the UK is the Wessely School which states that CFS/ME is a psycho-social condition. "

I'm lucky that here in Liverpool the response has been that it is very much physical.

However the physiologist has left her post and she still hasn't been replaced. But that could be part of the general attitude toward MH funding.

[girlsyearapart]

I have MS and lots of your experiences are very familiar.
When I have a relapse or a bad day people who didn't know say ' oh well I never knew you had that you never told me ' as if that should be the defining factor when you introduce yourself to someone new!

The feeling when someone asks you to 'just pass me that xyz item' and you want to cry as it's such a massive effort.

People don't understand

[2014newme]

70 % of people recover within 3 years. A further 10% within another year. Is unusual to have it longer than 5 years. Chances are she will recover.

[PerkingFaintly]

Oh I completely agree, good management and planning are very important, and so is self-care. Just as they are with managing diabetes, for example.

That's where good "mindset" comes in.

It won't make someone not diabetic though - just help them manage the diabetes, and manage to have a life though diabetic.

[Mamamagellanic]

Queen I’m excited you get viral illnesses again!

That sounds peculiar, let me explain.* Leading up to my big 2015 crash, I got everything going. Cold after cold, every month for about 15. Miserable. It always follows the same pattern as if it never went away. Then came the big crash. Then nothing. I’d catch colds but they’d present as extreme fatigue, like a long CFS crash, I’d be at 30% and wonder if that was it now. This would last a couple of weeks and then I’d be back to 60% normal state.* Clear signs of an overactive immune system.

Recently, the past two viruses DD has had, Ive faired very badly.* Runny nose (never thought I’d miss that!) cough, chest infection.. normal stuff that you get with a cold. Never a temperature though, not yet anyway.* Could this be a sign of my immune system calming down? I really hope so!

[2014newme]

It seems likely that a test will be available in coming years and onc
English it's actually possible to diagnose it rather than to say you must have that as all other possibilities are ruled out, I think some of the stigma will disappear and the misdiagnosis will hopefully end.