What cause your M.E.: What does... - Myalgic Encephalo...

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What cause your M.E.

Evelyn61 profile image

What does everyone here think caused their M.E., not what the doctor said.

I had a full time job looking after my mother, a part time job in an office, my own house, husband and son. No holidays, no nights out and nothing but ear ache from my supposed siblings, usually "This needs done, that needs done, have you done this yet". While they carried on going to the pub, away on holidays, you name it.

Look forward to hearing your stories.

10 Replies

The problem with ME is that like all major medical related problems is that there are many types of the ailment. So there are many different types of Flu, Cancer, etc... so like the many various types of ME so there are various causes. Like many various causes there are various triggers which activate the ailment. A complex question but one the medical profession will have to address once they recognize that ME in its various guises is indeed a serious illness.

Long term stress (bereavement, financial, emotional, etc) was a major element for me, followed by a viral illness. But I believe that stress and viruses are just triggers. I have read a bit about the Epstein Barr virus, which can live in the body without being detected until something triggers it, and many people have it without ever developing symptoms. It makes sense to me - but the medical profession have not come round to this yet.

Evelyn61 profile image
Evelyn61 in reply to Writer-Ros

Not sure what Epstein Barr virus is, but noticed that grandular fever gets mentioned with M.E. and I had that 35 years ago when I was a teenager. Could be a bit like the chicken pox virus lying dormant in your system and taking shingles later in life, again this can happen due to stress.

My cousin's wife took M.E. over 14 years ago and still suffers. Hers was due to two people cleaning and then it was only her. In other words she was doing the work of two. This went on for two years before the doctor finally said she had a virus and M.E., but I think the stress, overload caused the virus, and not the virus causing the M.E. No doctor, but common sense.

Will have to look up this virus

Writer-Ros profile image
Writer-Ros in reply to Evelyn61

I believe there is a theory that glandular fever is caused by the same virus.

cocoa profile image
cocoa in reply to Writer-Ros

I had glandular fever as a teenager.

Now, some years later I have M.E. which came on about five years ago after a virus, which resulted in me taking several courses of antibiotics

The swollen glands are very persistent and make me feel rotten for several days at a time.

I got tonsillitis for 4 years after the grandular fever before they took my tonsils out, no problems since. I had taken so much antibiotics that they stopped having any effect so they were forced to do something. I do see that this virus is due to glandular fever, learn something new every day. I believe the stress etc brought out the virus which has been lying dormant all them years.

I had a viral infection some 12 years ago - went into work feeling normal and had to leave after a couple of hours and spent most of the next 3 months sleeping and unable to eat, (lost about 5+ stones.

I recovered slowly and back to a stressful job, a new and growing family, studying for a degree while working and taking on more and more responsibilities and doing more both at work and home. Meanwhile my RLS went from just my legs in the evening to my whole body for most of the day put a huge stress on my system.

Finally I had two operations close after each other and went down and have never got back to full health. Been unable to return to work and have lost it and cannot function properly any more.

I think I must have been lucky. It only took the doctor over a year to diagnose my condition. I found out my cousin's wife had had this for 12 years, and phoned her and asked all the questions about where she went wrong. I learned to say NO, shame it took me 50 years before I stopped letting people bully and abuse me.

I feel like a have constant flu, always tired even after a good nights sleep, my arms especially my elbows ache most of the time, if I go too fast my legs go to jelly. My husband knows when I go white that I have to sit down, he sees the signs and has been a god send, not sure why he would want to stick around.

I manage to work 2 days a week, can do most of my housework, although what took 2 hours now takes all day, but I feel like I have achieved something when I manage. Any type of stress just knocks me for 6.

Take baby steps and be happy when you manage something no matter how small. Take it very slow, and be happy with what you can do. Its not your fault.

My M.E symptoms started immediately after an acute kidney infection and sepsis straight after I came back from a holiday of a lifetime 2 years ago. I came home after a month in hospital expecting to slowly recover. Was unable to walk for 6 months and lost about 4 stone in weight. 6 months later was still really ill and that is when they started to investigate the possibility of M.E. Never dream't I would spend my forties like this!! 2 years on I'm still investigating the reason for my continuing fatigue and all the other horrible symptoms. M.E is such a crappy nebulous diagnosis which means they basically don't have a clue. Have recently done a 24 hour cortisol saliva test which indicates my adrenals are in bad shape and I paid for a full thyroid work up that the NHS don't do which indicates I'm hypothyroid. Starting to medicate for the above -so fingers crossed things will improve!!Who knows maybe this has been the problem all along.....

After a visit to the doctors on Monday with some private test results, I am now having loads of tests done on the NHS . YEAY!!!! FINALLY!!!!!! They are now testing for Cushings, Lymes disease, toxic levels of lead/zince as well as other more unusual ones. Shame it has taken so long. In my mind these things should have been tested for before I was given an M.E diagnosis. Once I had an MRI and Ct scan to discount cancer and MS they were just not interested. So glad I have finally found a doctor who listened and felt it should be investigated further. Had 10 vials of blood taken today- just hope it shows something that can be treated. Hugs to everyone going through this-it's a bloody nightmare!!

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