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?
AIBU?
To wonder how many people have CFS/ME?
millionsmissing · 30/10/2017 16:15
Me, me, me! I have it, I'm one of those housebound and out of sight 
. Mostly bed bound for 9 months each year.
SO much I want to say, but being on MN for too long makes me crash. And I just lost all my spoons from waving 
Off for a rest. millionsmissing Thank you for posting this. 
for you and your friend.
WoodYouBeHappy
and lots of waving back thank you for your spoons. I know how precious they are
My eldest daughter has it, diagnosed at 8 she missed nearly 3 years of primary school, 1 year completely then next 2 she started going in for hour sessions a couple of times a week building up slowly. She is nearly 13 now and is doing really well. Full time at secondary school
She tires quickly still and doesn't take part in p.e or any strenuous physical activities at school (we tried but it knocked her back a lot) so that will hopefully come with time.
It is a horrible horrible thing, I live in fear of her going back to how she was at her worst, but she has been very brave and also I think very lucky to have to support she has from her doctors and physios and also schools. I know that doesn't always happen. flowers for your family member.
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It's a total and utter arsehole. I was first diagnosed with 'yuppy flu' in the late 80s. I recovered enough to live a bit and work normal hours through the 90s then it came back with a vengeance following a serious accident 12 years ago. I actually went out to lunch yesterday - 3 whole hours of loveliness. The next time I will probably be fully coherent and able to shower properly and wash my hair will be around Thursday. Can't chuffing wait 
. That few hours of appearing to be normal yesterday has taken its toll. Yet again.
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