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
Floralnomad - I think there must be a genetic component. I have CFS with far less debilitating symptoms than some of you brave people are living with, and my cousin has MS - she was diagnosed in her twenties.
I also have severe endometriosis and have often wondered if the two are somehow related (screwed up immune system, screwed up hormones..)
I read threads like this and it shocks me how this epidemic is largely ignored by the NHS. And on a personal note, it shocks me to realise how I’ve just come to put up with it. If I have to go into the city for an appt, I just accept I’ll be in bed the following day and stock up on food etc. It doesn’t even occur to me now to think differently.
to everyone going through this. I hope that one day, society will look back on this in the same way that we look back on smallpox etc.
Thank for posting, OP. Its so appreciated. I thought of posting myself something recently - its such a frustrating illness to have and I've really been in the doldrums about it the last couple of weeks.
I will read the thread and post something relevant later or tomorrow, when I get a chance.
Thank you again
For those who think it may be thyroid related you can get private blood tests and self medicate with minimal medication very slowly to see if it relieves symptoms
I would love this to be a mumsnet campaign as the majority of thyroid issues and auto immune sufferers are woman and most endocrinologits are men who often totally dismiss them.
They are also mainly diabetes experts certainly not thyroid experts although they are supposed to treat both conditions (someone told me if a medical student goes to the toilet they would miss the talk on thyroid disease as the answer is levothyroxine cures everything apparently 
So many woman have to pay for medication online in order to work or have any energy to have a life. if anyone wants to learn more plenty of websites the American site stop the thyoid madness or the UK's Health unlocked all good places to start.
Gosh, this is all really interesting. I recognise some names on here from some of my threads too. Though of course I can't remember which threads or names I had 
Thank you everyone for your help. Both then and now.
Please keep talking and sharing if you can. I like to think there are more people here than we realise who are not well enough to post and ask for support (like me in the beginning).
Actually I think I self-diagnosed (correctly) all my health issues from MN threads in the absence of real medical support 
.
MN will become the new NHS 
Waves to all from bed again
Wow. I hadn't realised how upsetting this thread would be. I massively appreciate how much it must have cost some of you to post. It's given me a completely different understanding to find so many people saying they avoid thinking about it. Thank you all.
I wonder how "they" dare ignore so many people? or pretend people are better just because they learn to stop asking for help? And by 'they' I mean all of the rest of us but especially those with the power to do something about this,
and to chuck away blood tests because someone in a lab decides to overrule a GPs professional opinion? What a terrible waste of precious NHS resources, because of course there is a cost in getting a blood sample taken, filling in the request for testing and transporting it to the lab. No wonder we have a shortage of GPs.
I was diagnosed at 13 and spent years at Great Ormond Street for it.
I recovered by age 20, having lost out on all of my education. I still get periods now where I can't really cope with life. I still manage to work, but not as effectively as I should. I have to give up a lot of things outside work - in fact, for at least the past two years, I've given up most of the non-essential things. Sleep doesn't refresh me, I can't get enough of it. Thinking and learning is still hard, it probably always will be.
The migraines and the medication I take for them doesn't help, makes it much worse, but I know that the medication isn't the only reason I feel this bad, because I remember these feelings from years ago.
Someone much earlier said it in the thread, when I was younger, I started to get a lot better when I hit a point of acceptance and stopped trying so hard to be super positive, smiley and pleasing everyone else all of the time. I was at an age where I had all sorts of hopes and dreams of what I wanted to be when I grew up, but once I let go of those and accepted that it may not happen I kind of felt freer. Amazingly, in a really roundabout way I'm nearly where I wanted to be, even if it has taken about four times as long and very circuitous route.
There was another thing that was not just exclusive to me at the time, but quite a few of us were members of a charity for kids/teenagers with M.E which had online forums. Being house or bedbound meant that we spent a lot of time online, eventually we realised it wasn't actually a healthy environment to be in, it was enabling a lot of the negativity. People were being abused when they said that they felt better on any given day than they had a couple of days before. It was a bit odd considering the charity had been set up to be supportive, it ended up being the exact opposite. I've just looked at it again, and it's now ceased operating.
M.E. is a horrible illness to live with but it doesn't mean the end. You can get to where you want to be, it just might not be the straight line you expected
I hate it. I'm a GP and see the devastating affect these illnesses have and there usually so little I can do other than listen, believe you and support.
Didiplanthis you sound like a wonderful GP. Doctors like you are worth their weight in gold. Will you watch Unrest? It's easy enough to do on iTunes.
As a community we so badly need GP's like you to speak up where you can. Write to journals/newspapers/any professional body you're part of and question why more biomedical research hasn't been done. If you can rope other GP's into watching Unrest, so much the better. Hcp's are getting better but so many are still ignorant and unkind. I went to a female gp recently and she told me it was such a shame an older, authoritative male doctor hadn't told me there was nothing wrong with me because then I'd have got better. I've lost 14 years of my life to this illness and know I've lost my chance to have children because of it. A friend of mine was told by her gp she wasn't a witch and didn't smell so couldn't have M.E. I could go on and fill the thread with other tales. We have been so let down by the medical profession and it makes an already difficult situation so much harder.
op
I read somewhere that if you present with fatigue, then it's ME/CFS; if you present with pain, then it's fibromyalgia. Same condition, slightly different combination of symptoms. Same lack of proper investigation , research and treatment though
Being house or bedbound meant that we spent a lot of time online, eventually we realised it wasn't actually a healthy environment to be in, it was enabling a lot of the negativity. People were being abused when they said that they felt better on any given day than they had a couple of days before
That's such a shame. I'm a member of several online support groups for people with M.E and they have been the most wonderfully positice environments. I've met my best friends through them and they are wonderful people. We all celebrate one another's good days. It always amazes me how upbeat and brave they all are when they're so ill and have lost so much. And my friend who's been housebound for 25 years and never had a partner gives the best relationship advice. She easily gives @AnyFucker a run for her money 
ME/fibromyalgia here iv definitely has since my teens but this is my 14th year since diagnosis sigh.
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