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To wonder how many people have CFS/ME?

(278 Posts)
millionsmissing Mon 30-Oct-17 16:15:57

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?

furlinedsheepskinjacket Mon 30-Oct-17 16:18:22

wiki says 250k in uk

i'm one of them

its scandalous that nothing is being done

Misspilly88 Mon 30-Oct-17 16:21:35

I had/have it and know a handful of others with it. 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. There are things that can help, but if you've given up then you are less likely to try them. I'm sorry she's going through this It's really awful.

Sloven Mon 30-Oct-17 16:21:55

One of the hidden 250k here too living exactly as you describe. When I have a good day I can fire on more cylinders than most people can shake a stick at. What they don't see is the days in bed that follow.

millionsmissing Mon 30-Oct-17 16:23:53

So sorry to hear that furlined. I can't believe there is no biomedical research into a condition that has such a devastating impact on so many lives.

PerkingFaintly Mon 30-Oct-17 16:24:42

<puts hand up>

That rang some horrid bells here. I'd just bought my first really decent rucksack and a new mozzie net when I got ill, after travelling the world with second-hand stuff that looked like something out of a 70s Girl Guide's annual.

I'd also not long bought my first decent tent.

And a pair of ice-skates that fitted and weren't second-hand.

And my first full-price winter coat.

I get to use the coat sometimes, but it's 15 years old and not showing any signs of wear...

Floralnomad Mon 30-Oct-17 16:25:21

My dd has it , she’s 18 and was diagnosed at 12 .

PerkingFaintly Mon 30-Oct-17 16:26:17

And Misspilly, I've never believed I'd be like this forever, but amazingly despite not thinking like that, here I am still ill.

Almost as though it's not actually caused by belief...

newestbridearound Mon 30-Oct-17 16:26:48

I have so much to say on this subject and my outrage at the systematic failings of people with ME (and many other autoimmune illnesses) but typically I'm just too exhausted and foggy today. One of many reasons that campaigning is so slow in my opinion- the people in need of the help are frequently too ill to fight for it or lobby for it.
ME sufferer here for 8 years now; it's taken almost my entire twenties from me, I've never fully used my degree or had a job since developing it. Been largely bedridden for that time. In another relapse that's destroyed any progress that I had made. YADNBU op sad

Research is being carried out though, its just very slow and funding is poor. The newly released film Unrest is brilliant and will hopefully change some perceptions. People can and do recover but it is a tough old road and we need greater understanding and biomedical testing.

BishopBrennansArse Mon 30-Oct-17 16:28:25

I’m undiagnosed but have had it since I was 8. This was confirmed by my dd’s specialist when he diagnosed her at the age of 8 - by then she had already had it 4 years. As it wasn’t my appointment he couldn’t diagnose me.

Later on this developed into Fibromyalgia and Rheumatoid Arthritis.

RaptorsCantPlayPoker Mon 30-Oct-17 16:32:43

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.

I agree. I had it. I say had as I’ve not had symptoms for months now and am believing it’s gone. My consultant was very positive natured and of the encouraging ‘it often goes away, you’re very unlucky to have it forever’ variety. I’m a positive person too which helps (I know some will disagree).

It’s an awful illness but it must never be allowed to define you. I’m one of 4 people I know that have it. 2 talk about CFS a lot, go to the groups, don’t try and enjoy life because of the CFS and are generally negative people. The other one and me are positive. Yes, we have suffered horribly but we plough on. There are days and weeks when even getting out of bed is agony and days when I’ve not been able to do anything but lie down but my identity is not found in CFS. Even in those terrible days when it’s so easy to just give up it’s so important not to.

Sorry you’re going through this. Keep positive and don’t lose hope, it can and does get better for the majority.

RaptorsCantPlayPoker Mon 30-Oct-17 16:34:14

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

Realised my post might sound dismissive and didn’t mean it to.

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

Misspilly88 Mon 30-Oct-17 16:34:43

Perking I'm genuinely sorry to hear that. I know how it must feel to hear someone saying that, honestly. Never give up smile

JollyCat Mon 30-Oct-17 16:35:01

I have fibro but oddly i actually look unwell, i am deathly pale, weak, massive dark circles under eyes, so maybe people actually do understand when i say i dont feel well, as i look ill. I dont work, i hardly go out of the house due to the fibro. Shit illnesses

RaptorsCantPlayPoker Mon 30-Oct-17 16:35:23

Oh no! Re-read and it sounds really dismissive!

I was trying to sound encouraging! Sorry. Please hear the intention with which it was (badly) written.

mirime Mon 30-Oct-17 16:36:55

I had it for 6 years - 15 to 21 so missed out on so much as a teenager.

millionsmissing Mon 30-Oct-17 16:37:06

Oh she hasn't given up on life MissPhilly! Far from it.

But she does have to plan knowing that her plans may never come to fruition. And they are far less ambitious plans than they would be if she had her health.

I have no doubt that there are things that can help. That is what makes it such a shock to discover that there is no funding for proper biomedical research into how this disease works so that we can establish which things help and develop effective treatment.

She prefers not to think about that though. It is too upsetting to think about the ineffective treatment options that are currently available to her. And as you say that can leave people without hope. She prefers to focus on doing what she can control and that is to make the best of each day and daring to make plans in hope she won't have to cancel when it actually comes to it.

BishopBrennansArse Mon 30-Oct-17 16:38:50

I certainly don’t have a negative attitude. If anything I l’ve been trying too hard - I kept going until I started passing out or having falls.

It’s only been these past few months I’ve really learned to pace properly and realised I can do more. Yes that means using a chair but I can actually have a life.

I’ve lived with it 31 years now, I don’t think it will go away especially now I have further autoimmune problems. Doesn’t mean I’m negative or don’t try.

furlinedsheepskinjacket Mon 30-Oct-17 16:43:10

oh fgs nothing to do with mindset.

also if you recovered from it - sorry but you probably had something else.

i am the most well looking positive person and have tried everything available.

smile its not all bad though - you can enjoy life.

millionsmissing Mon 30-Oct-17 16:43:56

Perking flowers

ShovingLeopard Mon 30-Oct-17 16:45:17

YANBU. It's a bastard of an illness. I have had it for 9 years, though am about 90% recovered now. It took a long long time to work out - for myself, with no help whatsoever from the medical establishment - how to put myself on the road to recovery.

There is biomedical research going on, though not enough of it, and not in this country. Some of the US experts and universities, such as Stanford, have made some exciting discoveries in recent years. Hopefully this will lead on to successful treatments in the not too distant.

Your relative is typical of those who become ill with ME -far from being lazy, often they have been the most driven, prior to falling ill. It is soul destroying. flowers for her. And a big thank-you to you, for being open-minded, and taking the trouble to find out about the reality of the illnesss. The fact you believe her will do her more good than you will ever know.

SandysMam Mon 30-Oct-17 16:47:32

It is a horrendous illness. I knew a girl from work who had it, she was treated like shit and I saw more people roll their eyes at her, including managers, than I've had hot dinners.

Might have been mentioned already but google "the spoon theory", a great analogy to explain an invisible illness.

99balloonsandproblems Mon 30-Oct-17 16:47:48

I had it for four years. Echo everything everybody has said about being positive. If you spend every day thinking about it, and every time you go anywhere you anticipate symptoms, they will come. I believe it was physical and there is an 'acute' phase (mine following glandular fever) but after that it's so easy to get stuck, without even knowing you are. Not saying that that's the sufferer's fault at all (and there is suffering) but I got out of it by challenging my thoughts, not my body. Been completely 100% well for 5 years now. Currently typing this with a head cold that's affected me just the same as anyone else.

RaptorsCantPlayPoker Mon 30-Oct-17 16:48:33

oh fgs nothing to do with mindset.

also if you recovered from it - sorry but you probably had something else.

Well I can only go from my hospital appointments and consultants diagnosis but she was very much of the attitude that mindset does help and that most people recover eventually. She was a ME/CFS specialist working in a specialist unit so I do trust her.

RaptorsCantPlayPoker Mon 30-Oct-17 16:49:49

Most people with CFS get better over time, although some people don't make a full recovery. It's also likely there will be periods when your symptoms get better or worse. Children and young people with CFS/ME are more likely to recover fully.

From NHS website. So most people really do get better. There really is hope.

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