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
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 
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.
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. 
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.
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