Search results

Once the adrenaline surge has occurred, it takes a long time to wear off, and judgement can be affected- we get lost in the moment. I have many timers and watches.

Perhaps we could list our cognitive PEM symptoms. I never understood the meaning of "brain fog". I can't absorb or process information during PEM, my brain feels ill. I don't have memory issues, but years ago I had to call FED EX back 3 times because I wrote down the wrong phone...

Yes. The thing is that pathophysiology of PEM is there from day one of developing ME, even if you don't experience it until 11 years into the illness like I did. ME is PEM.

Moved post @Jonathan Edwards What is your opinion on mastocytosis? My understanding is that it is different to MCAS. I've read that mastocytosis can be aggravated by over exertion, changes in temperature etc.

How do you feel when you're lying down reading with your head propped up a little?

To add . . . cognitive PEM does affect my gait and at times cause sore/tired calf muscles if I really overdo.

I have never experienced delayed cognitive PEM unless it was combined with physical PEM. I recover from cognitive PEM within an hour if I rest, wear ear plugs in a dark room. The physical PEM is delayed by approx 12-16 hours and takes a minimum of 3 days to recover. I feel...

The article mentions developing an autoimmune response, this is what I've been hearing a lot about from infectious experts on tv in the last few months in Canada.

But do we really know if they've actually recovered from accumulated PEM? I felt as though I recovered from PEM after a few days, but we don't really know for sure because it can take years to recognize the 'damage'? It can present itself in different ways. For example, my...

We all have different 'energy envelopes'. I believe that my very first PEM experience was from climbing my stairmaster for 25 minutes in 1993 on a day I was feeling 'ok'. I didn't have any other symptoms except severe fatigue/weakness in my calves for 6 months. It was when my...

Slow walking is easier for me than standing, sitting upright and talking. I have to find the right balance, but it's not that simple.

I didn't have OI in the earlier years so I know the PEM differences with and without OI. My PEM became much more distressful when I developed autonomic issues. I experience OI all the time, and I've avoided PEM for almost 4 years.

I was trying to maintain what I already had, but I don't think I was ever able to rebuild any muscle loss since having ME. The noticeable muscle loss only starting becoming visible in the last 5 years.

@Kitty This has also happened to me. I don't monitor my heart rate, but last fall and several months ago I was able to power walk for 3 evenings IN A ROW. I reduced the time for the next 2 evening walks because I was afraid to trigger PEM. I felt normal after, no fatigue the next day...

Yes, this would be classified under post-intensive care syndrome. I was referring to long-haulers who have never had a hospital stay.

I am seeing a lot of PTSD and emotional trauma analogies though.

I would also be interested to know how long these patients were ill. The duration of illness is important imo. Do all patients experience autonomic issues? That in itself could trigger differences in outcomes? My experiences with symptoms from PEM has changed over the years. At...

https://www.meaction.net/2017/02/22/stanford-team-announces-breakthrough-in-mecfs-research/ "The team’s metabolomics tests on severely-ill patients revealed problems with the citric acid cycle. Participants’ blood work showed that some of the chemicals involved in the citric acid cycle are very...

It's like reading SW gaslighting fortune cookie fails.

Wessley: "Yes. “Pushing through” is not part of GET. It is about establishing a regular baseline and then gradually increasing without incurring severe PEM and thus going back to square one. CBT is about activity not exercise per se. Neither are about getting fit". If he was very...