POISers are being treated successfully with Niacin by the way (not curing it, they still have to take it regarding Orgasm). There seems to be some similarities in symptomatology between Long Covid and POIS.
I note that there is a proposed set of diagnostic criteria for POIS:
Natale et al 2020 said:
Waldinger et al proposed 5 preliminary diagnostic criteria designed to capture most cases.
Criterion 1 states that at least 1 of following symptoms occurs after orgasm: flu-like state, extreme fatigue, muscle weakness, feverishness, mood disturbances or irritability, memory difficulty, concentration difficulties, incoherent speech, congested or runny nose, or itchy eyes. These complaints were also classified into 7 clusters of symptoms (general, flu-like, head, eyes, nose, throat, muscles) based on patients’ interviews.
Criterion 2 states that symptoms occur immediately to within a few hours of orgasm from sexual intercourse, masturbation, or nocturnal emission.
Criterion 3 states that symptoms occur in more than 90% of orgasm events.
Criterion 4 states that symptoms last for 2-7 days.
Criterion 5 states that symptoms disappear spontaneously.
In order for these diagnostic criteria to be compatible with orgasm-induced PEM, Criterion 2 must be changed to allow for the symptoms to start 24-48 hours after orgasm. (Of course, it's just a preliminary set of diagnostic criteria.)
The survey yielded these responses regarding Criterion 2:
Natale et al 2020 said:
Criterion 2: Symptoms occur within hours of ejaculation
<1 min 16.2%
1-30 min 40.1%
30 min - 6 h 28.8%
Another example how difficult it is to link the symptoms with POIS despite having extreme symptoms:
https://www.reddit.com/r/POIS/comments/ln4lai "I can't pinpoint a start date, but I've experienced bipolar symptoms and chronic fatigue ever since I was in high school. I have masterbated since I was 13 (and during my teen years definitely experienced porn addiction- which is my theory on what may have created a hormonal imbalance). I did not actually have sex with a partner until 23, and that sex rarely gets me to an O. After abstaining from masterbating I began to realize I felt like an entirely different person. That made me really begin questioning the source of my chronic fatigue."
Muon if your wife just developed CFS, that would point to an environmental factor, considering the statistical likelihood being so low otherwise. If you haven't fully investigated CIRS you should do so. My first lab abnormalities in 13 years have came back after ordering Dr Shoemakers tests. MSH ADH hla acth/cortisol tgfb1 c4a c3a vegf mmp9 to name the major ones. All but mmp9 for me was quite abnormal, indicating a chronically unregulated inflammatory state, caused most likely by the water damaged home I lived in for 30 years and possible repeat exposure to toxic algae blooms or an undiagnosed lyme infection. If you have reservations about mold being a factor, trust that I felt the same way for 13 years, only finally to realize that mold illness has absolutely nothing to do with allergies. Its a neurotoxic soup that roughly 25% of us cant eliminate properly. Id like to know your thoughts on this.
@Horizontal_Hero I don't have a wife but I think you refered to the link in the previous post. Yes me and others already thought about environmental factors. My younger brother got POIS as well, grew up in the same house. I've read a little about CIRS aka Mold Illness. Sounds like mold induced mast cell activation to me. I've heard Dr. Theoharides mentioning that it is impossible to know whether mold is triggering symptoms via diagnostic testing. I don't have reservations with regards to mold being a factor though. Do you have POIS yourself?
It is much much more than mcas, which is just a symptom of it. CIRS more accurately is likely the correct diagnosis of many "wastebasket" illnesses such as cfs, fibro, and chronic lyme. I do indeed have POIS. I find these illnesses to be one in the same, just manifesting differently, probably due to the intricacies of the limbic, autonomic, and hormonal dysfunction. What I speak of is completely revolutionary. If you want a deep dive into the details on CIRS here it is: Dooley-McMahon_Final_Publication_-_3-30-2020.pdf (survivingmold.com)
Otherwise there are some great presentations on youtube from many different MD's. Ive spent the better part of six months reading the literature and hearing peoples recovery stories. This seems to be IT
Nanna1 already questioned whether the orgasm induced NK cell response is normal in POIS:
"the orgasm induced a moderate but statistically significant transient elevation of the cytotoxic/suppressor T cell (CD3+CD8+) numbers (Fig. 2). In contrast, the absolute numbers of T cells (CD3+), T helper cells (CD3+CD4+), and B cells (CD3-CD20+) were not affected by sexual stimulation...the levels of LPS-induced proinflammatory cytokines (IL-6, TNF-alpha) remained unaffected by masturbation-induced orgasm...The effects of orgasm on peripheral lymphocyte subsets were restricted to NK cells and had minor or no effects on T or B cell subsets and showed no effects on (IL-6, TNF-alpha) cytokine production, indicating limited and selective effects of orgasm on immune system functions in parallel with its selective and short-lived neuroendocrine effects." -Effects of Sexual Arousal on Lymphocyte Subset Circulation and Cytokine Production in Man (P Haake, U Hartmann, et al., 2004)
Post orgasmic illness syndrome is a rare, mysterious condition with an unknown pathomechanism and uncertain treatment. The symptoms of post orgasmic illness syndrome last about 2–7 days after an ejaculation.
The current hypothesis proposes that the primary injury in post orgasmic illness syndrome is an acute compression proprioceptive axonopathy in the muscle spindle, as is suspected in delayed onset muscle soreness. The terminal arbor degeneration-like lesion of delayed onset muscle soreness is theorized to be an acute stress response energy-depleted dysfunctional mitochondria-induced impairment of Piezo2 channels and glutamate vesicular release. The recurring symptoms of post orgasmic illness syndrome after each ejaculation are suggested to be analogous to the repeated bout effect of delayed onset muscle soreness.
However, there are differences in the pathomechanism, mostly attributed to the extent of secondary tissue damage and to the extent of spermidine depletion. The spermidine depletion-induced differences are as follows: modulation of the acute stress response, flu-like symptoms, opioid-like withdrawal and enhanced deregulation of the autonomic nervous system.
The longitudinal dimension of delayed onset muscle soreness, in the form of post orgasmic illness syndrome and the repeated bout effect, have cognitive and memory consequences, since the primary injury is learning and memory-related.