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I was only 20 years old (1984) when I had the microbiome reaction to an antibiotic. It was a very significant change that has greatly affected my life. If only there had been an interested doctor researcher that had the time and money back then I would have offered myself as a study to find out...

I don't think I can answer this question as well as I would like. The reason is that there could be a factor that is important that may have caused me to become vulnerable to getting ME 10 years later. This factor was a rare reaction to an antibiotic which caused permanent major changes in...

The first 10 years of my ME I had a pillow under the mattress which helped elevate my head slightly. I can't remember why I did that. I was getting so many severe symptoms in those years.

Before ME I never experienced any post viral anything. So ME was a great shock to me.

I've always had a great need to lie down all the years of my ME. For me it is like a medication I do not want to take but have no choice because it is absolutely necessary to lie down flat. I am more moderate now and am able to sit for longer and go out at least once a day. I don't experience...

Interesting. I did notice I was getting flashes of heat at my throat. I forgot to mention that to my doctor. I guess I will learn more as time goes on. My normal thyroid tests are on the lower side of normal. I also found out recently that there is thyroid problems on my fathers side of the family.

I've had a sore throat off and on for the last year which seemed different to other sore throats that I have had in the past. So I made an appointment with my GP. She found a lump on my neck. I was sent for an ultrasound and then had the lump biopsied. It was a relief to hear there were no...

Last year I had to take myself to the A&E. I arrived about 8am and was sent to an assessment area beside the main A&E dept. What a day it was. I was fortunate enough to grab one of the two lazyboy chairs but lost it temporarily when I had to visit the bathroom. When I came back I had to sit on...

It's irritating that I have to add to this but just in case the BPS are reading. I am not recovered nor have I made a permanent recovery from severe ME. I am still very disabled and I have to rest afternoons and evenings to keep from deterioration and to hold on to the level I am at now.

The only time I remember feeling like I had no strength in my muscles were in the very severe years. It's possible that I am not recognizing a subtle lack of strength now because I have had ME so long. At my very severe ME onset I will never forget not having the strength to chop carrots, or...

@boolybooly Same here. Before ME I used to go to the gym to tone up my arm and leg muscles before summer. It would only take about 3 weeks to feel a firmness that I liked. Since having ME I have tried to tone up many times but I just get PEM and have to stop.

@Robert 1973 My very severe ME onset felt like a speeding car crash, the car stopped but the engine would not quit. PEM always induces insomnia in me. In regards to weight. In my severer years (about 14 years) I lost a stone in weight at the beginning. Every time I put on weight my ME did not...

I'm not quite sure what the intricacies of this thread is about. I will try to read through more carefully eventually. In my severest years it felt like I had just completed a marathon and no amount of rest was helping, so just holding a book or moving a chair gave me very severe PEM and it...

Masks have served me excellently. Along with sanitizing my hands. I live on my own and only allow family without sniffles in the house. Family live in another city so I don't see them often. I go out nearly every day catching a train or bus. I wear a surgical mask and a cotton mask over top. I...

I can't choose one. There were many that were as agonizingly disabling as each other in my severer years.

I haven't seen the film. I will try to make a point of watching it eventually. I remember at the time not connecting to Jen's ME. I'm not saying she doesn't have ME, it just seemed different to my ME. I will have to refresh my memory about why it seemed different to my experience. So I wasn't...

Definitely feels like the 'clear up' has major problems. I do everything possible to stay away from very severe ME again. Thanks for your indepth knowledge and I hope you are closer to what could be going on. I'd love to see the answer to this illness finally.

Some weeks ago I was curious to know the highest cause of death in each state of the US. I found the 2021 statistics. 1st and 2nd were mainly cancer or heart disease. 3rd was Covid 19 in the majority of states except for 3 or 4 states from memory. Flu and pneumonia were way down the list...

For me, OI and ME/PEM have always run along side each other at the same level. My ME is now a managed moderate and so is the OI. I remember my early years of mild when trying to keep working too, but the crashes were still not as bad as what I was about to experience at very severe and severe...

I had my 6th Pfizer vaccine on Saturday, 2 days ago. I was told that it was the same vaccine I had for my 5th jab. I had a slight headache for 2 days. A very sore arm yesterday which is now coming right. A bit of sleepiness. I can't recall anything else of note.