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You might be right there. I am not sure if I can think clearly through this though.

There is something in a cold or a vaccine that can switch the ME on and off for some of us. My ME was switched on by a cold 30 years ago and I experienced the ME getting switched off last year when I had Covid for the first time.

Replying to a post from a member saying that they never had noticeable OI but definitely brain fog. And how if they do too much cognitive work they can't make decisions or accomplish multi-step tasks and if there is too much noise they feel like crying: Yes, same with the emotional liability...

@T&O you have the OI too? Just wondering if there is anyone without OI but with the brain change.

I had a reminder last year when I got Covid just how much I have lost in clear thinking. The first week of Covid I was able to easily think clearly. There was no problem whatsoever working out meals, and what to do next was not laboured with working out what had to be done, what should I leave...

Is it separate from OI or part of it. How severe was your change in brain function when you got ME? I'm really not up to starting a thread as usual but hope to drop in comment when I feel I can string some words together. Thanks for any comment.

Yes, I've had all kinds of comment made to me too. Whether the soreness switch thing for me is to do with the ME or not I don't know but it was just something I noticed with my ME and may not apply to other ME's. I do get a sore neck with the ME so lying down can be uncomfortable trying to find...

The hours I have spent lying down the last couple of decades is beyond belief. I haven't experienced limbs going numb thankfully. Something that has always struck me though with the ME and all the lying down I do my body does not get sore from it. I remember before ME it would get sore as if I...

I think the brain involvement is the progression (door opening) into ME and PEM. Like a latter stage of a lead up to a disease. I think there is a before stage starting with the immune system and then at a latter point ME and PEM gets switched on in the brain by a cold or other. Could be wrong...

The majority of my temperature recordings are 36.6-37.1C in the period 2020-2022, 25 entries. In PEM I get the chills, weakness and other symptoms mentioned by the Bateman Horne Centre. I never took my temperature in the severest of years. I just had to edit my post because I thought I had...

This could very well be what contributed to my ME. I had a sudden changed homeostasis after an infection when 20 years old with MAIT mucosa. I was never the same again. Left with localized pain. I later went on to get ME via a cold.

I really hope you all continue investigating and not forget the MAIT side. I really think it is part of my set up ME. Thanks for bringing it up and thanks to Jonathan Edwards for making me aware of it years ago within his postings. I understand very little of the science but I really do think...

Same symptoms above. The only other pain I get is severe headaches, sinus facial pain, neck and also there is a localized area which happened when I got an infection when 20 years old that suddenly changed homeostasis permanently where I can experience severe pain but that last one happened...

Although I don't understand anything I feel like this is giving me a glimpse of something. I could be completely wrong in interpretation but if it is what I think it means it would fit my ME. Meaning I had something happen before my ME, a permanent change after a bacterial infection and I always...

I have a paternal aunt with lupus. She was diagnosed in her 70's after becoming very severe. She said the diagnosis finally explained why she had complications with her pregnancies. I got to see her last year and we were able to talk about our illnesses. I did say to her that we might have a...

Further back on the thread we were talking about heart strain and having to slow down when walking. I keep forgetting to liken it to the Covid slow walk and breathiness. It felt similar to how my ME is at times in that regard. Might not mean anything, just thought I would mention.

My ME onset was via a bad cold. The first symptom was severe lightheadedness and imbalance when walking. I think it would have been months later when I noticed I had cognitive changes. Actually, I have just remembered that it was the following year because I had to drop out of study due to the...

I had quite a low mood yesterday and the day before. Also the signs of PEM, legs affected, heart and breathing felt strained and more difficult and other symptoms. I know how this came about. Sunday last I had to get out to the garden and tidy up a row of weeds along a fence line. I couldn't...

With the recent changes to the forum I'm trying to find another thread and I come across this one. New members might want to add their progression of ME?

Yes, I think I might have come in through something like Reiter's. I don't get the swollen joints though. I tried to explain to a GP when 20 years old that something significant had happened. I was never referred or given any idea what could have happened. I wouldn't have even known what...