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Telling your doctor that you have 'orthostatic intolerance' isn't going to describe how this negatively/disables your life either. I got that glazed over eyes look from my doctor when I mentioned it once years ago, I never mentioned it again. I told her I had chest discomfort when I'm...

What term would you suggest better describes PEM in one or two words to a physician w/o a biomarker? We could also add that over exertion amplifies all other symptoms including cognitive function that disables us to bed for days, weeks, months . . .

Funny thing is that I found drinking warm milk (hot cacao, pink of salt) to be very hydrating and helped with orthostatic stress. I don't urinate for hours, unlike water that keeps me up all night.

Sorry, I missed this post yesterday. Yes, I've come to learn from reading M.E groups/forums that PEM does vary from person to person. This has not been the case for me, my delayed PEM has followed the same distinctive pattern since PEM started. Perhaps this has been an advantage in...

Abstract Purpose Bolus water drinking, at room temperature, has been shown to improve orthostatic tolerance (OT), probably via sympathetic activation; however, it is not clear whether the temperature of the water bolus modifies the effect on OT or the cardiovascular responses to orthostatic...

Abstract A simple bodyweight squat is sufficient to cause substantial stress on the autonomic nervous system (ANS) via ~30–50 mmHg blood pressure (BP) oscillations. However, it is unknown to the extent of the ANS is impacted during and immediately following bodyweight and resistance squat-stand...

To be fair, even Leonard A. Jason has difficulty defining what is occurring during PEM. He uses 'fatigue' a lot in his definition. I don't expect my GP to understand and have never mentioned PEM to her in 31 years. Yeah downplaying is irresponsible and harmful to patients, I agree.

The ramifications of LC will certainly put more focus on how the immune system may be abnormally sensitive to the modulatory influence of the autonomic nervous system. We all want a better term to describe our malaise (PEM), but 'un malaise' in French medical terms does include cardiac...

I had a relapse from taking Imunovir for 3 weeks that reactivated EBV and HHV6. I slowly improved years after that but never regained my baseline. I also developed OI and became more disabled from that. The immune modulator was prescribed to me by a virologist who did a small study with Dr...

I recovered from the initial virus and my health started improving (80-90%) slowly over the first 5-6 years. The main difference is that I didn't experience PEM or OI during those years.

I don't get dizziness/lightheaded when I go from lying down to standing in general, but I do get blurry vision and head, chest pressure when upright for too long. My BP doesn't drop when sitting/standing or lying down. I have heat intolerance, but not all the time. There is also...

The "PEM" episode I described above was alleviated by rest (2 days). This is not the same as delayed PEM I experience from going over my energy limit and being in distress. Similar pathways perhaps, but not the same.

What do mean by M.E is 'something more'. What you are describing in your case is post-infectious syndrome, not M.E. I had post-infectious syndromes for 5 1/2 years and it was not similar to M.E/PEM.

But PEM isn't alleviated by rest. This is not describing the pathophysiology of PEM as it relates to M.E. Going back to ones baseline after exercise or from over exerting is dependent on how much they have gone over. It can take days, weeks, months or never going back to baseline...

I agree with JE that there is no reason to assume that pwME in particular have low mg stores, malabsorption issues are not uncommon for pw chronic illnesses. I had/have many other deficiencies, not just mg. An interesting thing I observed back in the late 90s and early 2000s is that my...

I took injections back in early 2000 for a couple of years to bring up my mg stores. This is the 'evidence' I based my usage on. I use mg chloride transdermal aloe gel twice a week for the last 12 years. I trust the results from ExaTest who have no financial interest...

And even then it's difficult to know for sure, symptoms might be gone but . . .

Collectively, we believe that our genetic and immunological studies of patients with severe long COVID hold potential for better understanding of this complex condition, and by focusing on severe cases that develop after mild COVID-19, we maximize our chances of success. Our results would...

Moved post Nature correspondence: Studying severe long COVID to understand post-infectious disorders beyond COVID-19 by Petter Brodin et al Collectively, we believe that our genetic and immunological studies of patients with severe long COVID hold potential for better understanding of this...

A friends son (32 yrs old) was seeing a physiotherapist for a couple of years for lower back pain, the physiotherapy wasn't helping, his back pain went away after he told his parents he was gay. He had tried to tell them yrs earlier but they didn't want to accept it and this caused him a...