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I wonder what affect this would have on our kidney function. I came across a couple of old blood tests from 2012 this morning that had low eGFR. I will try to find more recent test results. It must not have been low enough for concern though.

I've been holding out from getting my next Covid vaccine until the end of this month due to an operation coming up at the end of Feb/early March. Mask wearing and sanitizing hands often have worked very well for me. I have not caught Covid or a cold. I usually take a bus or train nearly...

Yes, for me the delayed PEM is the worst and brings new symptoms I haven't experienced before. The new symptoms I am talking about only occurred when I was very severe with the ME and not in severe ME that I can remember. Those new symptoms were very frightening to me at the time because it...

Yes. To me, ME is PEM and revolves always around it. Pacing will help eventually get a better quality of life and fewer severe PEM episodes. It can take years though, for me it took just over 10 years of pacing to get to moderate level. So there was no fast improvement with pacing. Painfully...

Regarding malaise. I understand malaise is a term some PWME don't like. For me, I would be extremely worried over a loved one who has taken to bed with malaise. It is serious in my understanding of the term

Yes, PEM has exhaustion/fatigue/weakness, but it is one part of many significant symptoms which malaise covers. That's why I don't like the use of PEF being used on it's own.

In myself, I think PEM is triggered long before PEF would have an impact due to the innate problem we have with this illness? Thanks for everyone's great contribution to this thread.

It's always been insomnia for me with my ME. I hate to think how many hours I have lost over the period of 22 years from very severe ME until now. The severer the ME the worse the insomnia. In my very severe years I was getting 2 hours, or 4 hours sleep a night. Now at moderate I manage to get...

I think the differences will be how we caught ME and then PEM whether it be subtle PEM or very severe PEM will be there in all to some degree, even a sleeping PEM in the very early stage?

I've been tested twice for EBV and both times tested negative for past or present.

I think in my case of ME it was an immune reaction to an antibiotic which caused permanent metabolic change in homeostasis which then set of pro inflammatory symptoms causing a cascade of symptoms that was made worse by other hits like flu tipping me into ME. I have no deep knowledge of all...

My early ME was similar in that I was still able to work full time, though I was having some symptoms. Unfortunately, I didn't know I had ME back then and if I'd known what I know now I would have stopped working straight away and begun a resting routine and access things from there. PEM was...

I'm one of those rare people still wearing a mask when I go out. I haven't had Covid. I go out nearly every day catching a bus or a train. I wear a surgical mask and a cotton mask over top of it. It has worked very well for me. I do constantly sanitize my hands also. I live on my own now and...

Interesting what you have written here @Creekside Excuse me though, even though I have had ME for over 25 years I am still trying to get my head around all the nuances of ME. I think I understand what you are saying here. But I think really what is happening with you is that you have tamed down...

Change in brain function was my earliest debilitating symptom of ME long before the PEM got significant. The earliest symptom before that was two days of very severe vertigo-like lightheadedness, the third day I went down with a nasty cold. I'd never experienced anything like in my life before...

I've had PTSD from my experience of the ME PEM. I've had ME for over 25 years and been to all levels of ME except needing tube feeding. PEM is the very worst ME can throw at you. At very severe ME, PEM it is a never ending repeat circuit of hell on earth day in and out. The hundreds of symptoms...

19 years after falling sick with very severe ME and now at moderate level I can now get the sewing machine out and do a bit of sewing! I still cannot make a garment in one day, it takes me weeks to finish something but still, it is an exuberating feeling to be able to do something I love again...

Just dropping in for a short bit - so much going on and trying to conserve mental energy. I just reread the above old post of mine and I need to add more to the last paragraph to clarify that even though I would be able to manage a study at moderate level now and not get as severe a PEM that I...

I still haven't caught Covid either. Life sure is different now. I'm double masked when I go out. Most people aren't wearing a mask but I make a point of mentioning to people when I have the opportunity that I haven't had any negative comment from anyone for still wearing a mask and that I am...

I had my 5th Pfizer Covid vaccine 2 hours ago. It's been 9 months since my last dose so I am expecting stronger side effects like my first and second doses. Although, the stronger side effects I had with the first and second dose might have been my body getting used to a new vaccine? With the...