Post Orgasmic Illness Syndrome (P.O.I.S.)

General Category => What is POIS => Topic started by: Mr Raba on February 13, 2016, 11:31:27 AM

Title: Is POIS a version of CFS?
Post by: Mr Raba on February 13, 2016, 11:31:27 AM
Dear friends,

I have said this years before. I have realized that POIS and CFS are connected. The major difference is symptoms duration and O trigger. Otherwise symptoms, treatments, what makes things worse o better are almost identical.

Years after my saying this and being swiftly dismissed.  This forum is finding the slow and painful way the same things it took decades for CFS people to learn and discover. I believe POIS and CFS have the same underlying mechanism. I have both. But only because I stumbled into CFS on the web first. POIS did not exist on the web back in 1993! 

Now people find POIS and the label is put on. Perfect match. Search stops.

I believe that CFS and POIS are in the same disease spectrum. The answers to many questions asked here are already known and fully documented in CFS research. Like alcohol intolerance.

I think that in time POIS will be found to be a subset of CFS.


in CFS all these are involved:

Vagus nerve involvement
CNS imbalance
Macroglial cells involvement
Methylation involvement
Leaky gut and and abnormal microbine behavior.
Inability to read at times, or concentrate
Flu like symptoms
Sore throat
Headache
Night sweats
Excerciste intolerance
Hormonal axis imbalance
Immune and cytokine activation
Detox blocks
 Visual stress.
Low vit D
Borderline testosterone
Thyroid issues
Balance issues
Anxiety
Social anxiety
Word finding problems
Dysautonomia
Etc etc etc.


And the same supps work!  The list is too long to list. The match is almost incredible.

So please take a look and see for yourself. Lets not be so sure they are completely different diseases. They only differ on trigger and symptoms duration. Even the 2 to 5 day relapse is common. Some even months.


I have known several peolple that have both. Or actually relized they have CFS with O  trigget. As opposed to just CFS.
I even wonder if CFS in men is mostly found as POIS. Hence why men are underrepresented in CFS.


See this blog for starting to evaluate by yourself what the overlap is between CFS and POIS.
We can  leverage a lot of this research and spend our limited research funds in light of what an almost identical, hugely overlapping condition has already found out.

http://www.cortjohnson.org/

Good health to us all!  😊😊👍🏽
Title: Re: Is POIS a version of CFS? Rituximab great hope.
Post by: demografx on February 13, 2016, 07:12:19 PM
This drug, Rituximub, poses a life-threatening side-effect that -- once it happens -- there's no turning back.

Please remove the reference and please do not recommend it on this forum.

Thank you.
Title: Re: Is POIS a version of CFS?
Post by: Mr Raba on February 15, 2016, 03:11:00 PM
The censored drug  (in this forum) is used for multiple purposes. If you read my post carefully I did not recommend it. Just stated that  professional research trials have found it effective in CFS.  Not as something to try but as scientific medical research knowledge.

Since you are the administrator I have politely complied with your request.


If you want to completely remove mention of this drug you would need to erase it from your post too.

Title: Re: Is POIS a version of CFS?
Post by: Stef on February 15, 2016, 05:08:04 PM
Dear friends,

I think that in time POIS will be found to be a subset of CFS...They only differ on trigger and symptoms duration.

I have known several peolple that have both. Or actually relized they have CFS with O  trigget. As opposed to just CFS.
I even wonder if CFS in men is mostly found as POIS. Hence why men are underrepresented in CFS.

Hi, mrrabba --

There are some overlapping symptoms between CFS and POIS. But there also some major differences.

Ejaculation is not and never has been considered a trigger for CFS. That's probably the biggest difference between the two conditions, and is an important one.

Also, one of the strict criteria for diagnosing CFS is severe post-exertional fatigue. But several forum members here have advised that exercise is a great help to them. One forum member has run a few marathons. Another is an avid cyclist -- he participated in a cycling tournament to raise funds for rare disorders for the University of Pennsylvania.

In fact, the Institute of Medicine believes that CFS should be re-named, “systemic exertion intolerance disease,” because this is such an outstanding symptom. http://www.webmd.com/chronic-fatigue-syndrome/news/20150210/new-name-new-criteria-for-chronic-fatigue-syndrome

As an aside, Rituximub is a drug that depletes B-cells, and is used only under the most compelling circumstances -- usually certain blood cancers and/or some very severe diagnosed autoimmune disorders. It's such a high-risk drug that only a limited number of physicians can even have access to it. It carries a black-box warning due to the risk of developing progressive multifocal leukoencephalopathy (PML) -- a condition that is untreatable and fatal. I can't imagine it ever being considered for use in POIS.

Stef

Title: Re: Is POIS a version of CFS?
Post by: demografx on February 15, 2016, 08:44:46 PM
Thank you, mrraba.
Title: Re: Is POIS a version of CFS?
Post by: less_fogged on February 16, 2016, 10:05:10 AM
I couldn't agree more with Stef. Movement helps me recover. It's obviously harder to exercise while in POIS, I usually go at a slower pace or with more pauses but I imagine to be clearing away what has been released into my body/blood stream after ejaculation. For whatever reason; ejaculation after sex, masturbation or spontaneous emission (wet or not).
I even think exercising soon after ejaculation helps all-in-all with clearing away symptoms making them less aggressive. It might add to the fatigue by the end of the day but simultaneously think it can partly help with sleep. For me being active late in the day can also be counterproductive for sleep though as there is then interruption with adrenaline. Time is needed for the body to re adapt after exercise/fast walking.

Note: For me during POIS to feel as good as I can during the day I usually need to stay longer in bed than normal though.
Title: Re: Is POIS a version of CFS?
Post by: Mr Raba on February 16, 2016, 11:56:04 AM
Can people with only POIS exercise extrenously for two consecutive days while under severe symptoms and if so what happens afterwards?

I understand that  when  with no symptoms POIS -only patients could feel almost normal. But how about while under the awful effects of O?  I am  referring to after extrenous aerobic exercise during a  POIS episode, not just movement.

Second. I am not suggesting that they are identical, but greatly overlapping. I have learned from both ilnesses for more than 20 years. The same systems are involved. Take a good look at CFS Research and you will get a huge de ja vu.  The look is to get insights on system involvement  and resulting symptoms so we can understand what systems cause what symptoms.

I have encountered the " not same disease, not worth a hard look"  response in the forum before. Yet year after year this forum patients "discovet" by trial an error the same things that people with CFS used for decades to alleviate Symptoms.  There are many nutritional approaches and supplemets that peple with CFS use that are worth taking a look (not just pharmaceuticals).

A very simple example: The low sugar, no gluten, no carbs, plus probiotics does wonders in CFS also due to microbione issues and keaky gut that kick up inflammation.  Been used in CFS since 1990s.

Just trying to alleviate suffering here,  it pains me to hear that for years this forum was unaware of so many strategists and supplements that were common  use among CFSers. As a reminder I have had both for 20 years and with the knowledge I have acquired  I am continually overcoming.  Also I think that both ilnesses are now close a cure from multiple fronts and approaches. It is coming....

😊👍🏾😊
Mr Raba

Title: Re: Is POIS a version of CFS?
Post by: Quantum on February 16, 2016, 01:03:41 PM
Hi Mrraba,

I suggest you simply write on this forum a description of what is working for you, like what supplements you take ( safe dosage, timing,..) and what POIS symptoms they relieve, and to what extent, what diet and other life habits are part of your current approach, and what % of success you have with this approach, and what symptoms are still resisting to anything you have tried so far.  This would be valuable information for this forum :)  Those who will be willing to safely try some of what you have done will be free to do so, after having checked with a health professional if this is indeed safe for them, and suitable for them considering their health conditions and their current medication.

Thanks!




Title: Re: Is POIS a version of CFS?
Post by: superfrancais on February 16, 2016, 01:37:19 PM
Can people with only POIS exercise extrenously for two consecutive days while under severe symptoms and if so what happens afterwards?

I understand that  when  with no symptoms POIS -only patients could feel almost normal. But how about while under the awful effects of O?  I am  referring to after extrenous aerobic exercise during a  POIS episode, not just movement.

I believe (just my intuition, I have no clue) that POIS and CFS are rather different BUT...

I think you made a point in the above quote. As I am concerned I experience some relief with regards to joint/muscle pains when moving and doing sport (movement helps against inflammation I guess) BUT... if I push too hard when doing sport I have a hard time recovering. A very recent example : I played a tough two-hours tennis match two weeks ago and my body is still in the process of recovering. It could be caused by some seasonal virus but it's not the first time I experience this.

So I would say : movement is good against POIS inflammation but something in POIS prevents us from recovering from strong efforts.
Title: Re: Is POIS a version of CFS?
Post by: demografx on March 06, 2016, 08:59:56 PM

Just a periodic reminder to
please bookmark this site:
https://groups.google.com/forum/m/?hl=en#!forum/poiscenter

If you ever experience any unforeseen technical difficulties here!

It is our alternate/emergency POISCenter site at Google Groups.
Title: Re: Is POIS a version of CFS?
Post by: Muon on October 12, 2020, 12:01:54 PM
A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) (https://www.pnas.org/content/116/21/10250)
Title: Re: Is POIS a version of CFS?
Post by: Muon on October 21, 2020, 12:18:57 PM
Reductions in Cerebral Blood Flow Can Be Provoked by Sitting in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients (https://www.mdpi.com/2227-9032/8/4/394)
Title: Re: Is POIS a version of CFS?
Post by: Muon on November 24, 2020, 10:13:20 AM
Involvement of Cervical Muscle Lesions and Autonomic Nervous System in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS (https://forums.phoenixrising.me/threads/involvement-of-cervical-muscle-lesions-and-autonomic-nervous-system-in-myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs.82128/)
Title: Re: Is POIS a version of CFS?
Post by: Muon on November 26, 2020, 04:02:10 PM
Dutch Symposium: INTERNATIONAL ME/CFS RESEARCH (Komaroff, Van Elzakker, Frankovich, Bergquist) (https://forums.phoenixrising.me/threads/dutch-symposium-international-me-cfs-research-komaroff-van-elzakker-frankovich-bergquist.82151/)

ME/CFS at the Intersection of the Nervous & Immune Systems (Lecture) - Michael VanElzakker, PhD (https://www.youtube.com/watch?v=rIUccEITT6E)
Title: Re: Is POIS a version of CFS?
Post by: Muon on November 29, 2020, 03:47:22 PM
The IDO Metabolic Trap Hypothesis for the Etiology of ME/CFS (https://www.mdpi.com/2075-4418/9/3/82/htm?fbclid=IwAR0oFqqxm-sMy2P09q1P8ejZJGL1QcCoUto6UPuPD62uZ6Jhyy2tZKtYsH0)

Reduced activity, reactivity and functionality of the sympathetic nervous system in fibromyalgia (https://forums.phoenixrising.me/threads/reduced-activity-reactivity-and-functionality-of-the-sympathetic-nervous-system-in-fibromyalgia.82186/)
Title: Re: Is POIS a version of CFS?
Post by: Muon on December 02, 2020, 05:47:08 AM
Ampligen: Effect of disease duration in a randomized Phase III trial of rintatolimod, an immune modulator for ME/CFS (Strayer et al. 2020) (https://forums.phoenixrising.me/threads/ampligen-effect-of-disease-duration-in-a-randomized-phase-iii-trial-of-rintatolimod-an-immune-modulator-for-me-cfs-strayer-et-al-2020.82221/)
Title: Re: Is POIS a version of CFS?
Post by: Muon on December 04, 2020, 04:42:36 PM
Small-Fiber Polyneuropathy May Underlie Dysautonomia in ME/CFS (https://forums.phoenixrising.me/threads/small-fiber-polyneuropathy-may-underlie-dysautonomia-in-me-cfs.82250/)
Title: Re: Is POIS a version of CFS?
Post by: Muon on December 05, 2020, 05:30:28 AM
https://www.thenakedscientists.com/forum/index.php?topic=6576.msg603495#msg603495

B_Daniel:

Hi, Demo!
---------------------------

Recently, I've begun to believe that my symptoms align more closely with Chronic Fatigue Syndrome "CFS", than with POIS.

When I was 20, simply abstaining from sexual activity for a few days would have me feeling like a new person.  But from about 24 and onwards, there has always been some degree of the flu-like symptoms that lingered.  I'm 36 now.  Sex still heightens my brain fog, lethargy, anxiety, etc.  But the symptoms never disappear.

The main symptom I have, if I were to narrow it down to just one, is my lack of energy.  Some days are better than others, but on the whole, I wear out quicker when taking on stress and need more rest periods throughout the day than the avg person.  If I push myself too hard (can be mental or physical stress), I'll crash and be a zombie the next day.

I think I initially latched on to POIS as an explanation bc of how clear the connection was.  1-3 hours after sex, I felt awful nearly every time.  But I'm now thinking that sex is just a very concentrated way of depleting my energy.  And all forms of that push me over the edge.

Those with CFS often have low testosterone, gastro issues, and sensitivities to certain foods like wheat dairy and soy.  Treatments that help include TRT/HRT, NSAIDs, LDN, B Vitamins, Magnesium and a few other supplements.  So it's similar to what many have said have helped for POIS.

What I like most about characterizing my illness as CFS is that it's easier to talk to others about (physicians, family members), and there is a larger body of research, more established treatments, and a larger community to lean on.  On the POIS side, we're kinda each inventing the wheel, trying everything under the sun.  In this forum, we've all seen the posts of "If I stand on my head for 30 minutes and then scratch my belly really hard, my POIS goes away".  In the CFS support groups, I haven't seen that.  There's more discussion of the various established treatments. After you've tried those 20 things, you can rest knowing you've tried the bulk of what's likely to help, and then focus on stress reduction and improving your health overall.
 
Anyway, just wanted to share this, as I view it as a major insight for me.  If I find anything that works for me on the CFS side I'll of course share it over here.

If this sounds like something you'd like to learn more about, here are a couple of helpful pages I've come across

https://www.healthrising.org/blog/2018/12/10/the-basics-a-guide-to-learning-sharing-and-making-a-difference-in-chronic-fatigue-syndrome-me-cfs/

https://www.healthrising.org/blog/2018/12/01/tips-newbies-fibromyalgia-chronic-fatigue-syndrome-me-cfs/
Title: Re: Is POIS a version of CFS?
Post by: Muon on December 05, 2020, 05:33:38 AM
POIS thread on Phoenix Rising:

https://forums.phoenixrising.me/threads/postorgasmic-illness-syndrome-pois.81982/

You can find it under the differential diagnoses header.
Title: Re: Is POIS a version of CFS?
Post by: Muon on December 05, 2020, 06:08:32 AM
https://www.thenakedscientists.com/forum/index.php?topic=20239.msg236753#msg236753

Quote from: Girlwind
The POIS is very secondary to me now. The big issue is my long term CFS, which along with POIS, are just symptoms
of the hormones being in various states of deficiency. I'm so glad to be on the right track--finally. It only took 31
years.

LOL!
Title: Re: Is POIS a version of CFS?
Post by: Muon on December 09, 2020, 07:40:28 AM
Quote from: J.G
It's worth noting that observations regarding POIS in / and / or MECFS go back (at least) some 25 years. Noted ME specialist Dr. Jay Goldstein in his 1996 Betrayal by the Brain (https://me-pedia.org/wiki/Betrayal_by_the_Brain):

"Several of my male patients have complained that they feel exhausted for several days after ejaculating. Although little is known about the central neurochemistry of orgasm, it appears that NE [norepinephrine] facilitates it, and that NE is depleted after ejaculation. If a male neurosomatic patient were deficient in NE prior to sexual activity, ejaculation could thereby worsen his symptoms" (Goldstein 1996: 63).

Norepinephrine is synthesised from dopamine. Goldstein postulates a "dopaminergic hypofunction" in MECFS.
Ref (https://forums.phoenixrising.me/threads/postorgasmic-illness-syndrome-pois.81982/)

(https://me-pedia.org/images/f/fc/Betrayal_by_the_brain.jpg)
Title: Re: Is POIS a version of CFS?
Post by: Journey on December 09, 2020, 12:22:57 PM
Quote from: J.G
It's worth noting that observations regarding POIS in / and / or MECFS go back (at least) some 25 years. Noted ME specialist Dr. Jay Goldstein in his 1996 Betrayal by the Brain (https://me-pedia.org/wiki/Betrayal_by_the_Brain):

"Several of my male patients have complained that they feel exhausted for several days after ejaculating. Although little is known about the central neurochemistry of orgasm, it appears that NE [norepinephrine] facilitates it, and that NE is depleted after ejaculation. If a male neurosomatic patient were deficient in NE prior to sexual activity, ejaculation could thereby worsen his symptoms" (Goldstein 1996: 63).

Norepinephrine is synthesised from dopamine. Goldstein postulates a "dopaminergic hypofunction" in MECFS.
Ref (https://forums.phoenixrising.me/threads/postorgasmic-illness-syndrome-pois.81982/)

(https://me-pedia.org/images/f/fc/Betrayal_by_the_brain.jpg)
I wonder which are the earliest records out there clearly talking about someone reporting fatigue/brainfog/physical/etc. symptoms after orgasms is there any such data from let's say the 70s or 80s? The earliest POIS appearance I read about was from a Reddit user named /u/c-rockett88 who got it in the 70s and has relief from it by taking DAO, C vitamin, D vitamin and some other supplements and he believes it's excess Histamine causing POIS for him but I wonder if there are more POISers who got it around that time or even earlier unfortunately ones that might have had it earlier would be harder to find because they could be less likely to use the Internet or might not know POIS is a thing and so on etc.
Title: Re: Is POIS a version of CFS?
Post by: Muon on December 09, 2020, 12:29:40 PM
See contents: Book preview (https://books.google.nl/books?id=YWCOAQAAQBAJ&printsec=copyright&redir_esc=y#v=onepage&q&f=false)
Title: Re: Is POIS a version of CFS?
Post by: an-y-more on December 10, 2020, 09:48:22 AM
Quote from: J.G
It's worth noting that observations regarding POIS in / and / or MECFS go back (at least) some 25 years. Noted ME specialist Dr. Jay Goldstein in his 1996 Betrayal by the Brain (https://me-pedia.org/wiki/Betrayal_by_the_Brain):

"Several of my male patients have complained that they feel exhausted for several days after ejaculating. Although little is known about the central neurochemistry of orgasm, it appears that NE [norepinephrine] facilitates it, and that NE is depleted after ejaculation. If a male neurosomatic patient were deficient in NE prior to sexual activity, ejaculation could thereby worsen his symptoms" (Goldstein 1996: 63).

Norepinephrine is synthesised from dopamine. Goldstein postulates a "dopaminergic hypofunction" in MECFS.
Ref (https://forums.phoenixrising.me/threads/postorgasmic-illness-syndrome-pois.81982/)

(https://me-pedia.org/images/f/fc/Betrayal_by_the_brain.jpg)
I wonder which are the earliest records out there clearly talking about someone reporting fatigue/brainfog/physical/etc. symptoms after orgasms is there any such data from let's say the 70s or 80s? The earliest POIS appearance I read about was from a Reddit user named /u/c-rockett88 who got it in the 70s and has relief from it by taking DAO, C vitamin, D vitamin and some other supplements and he believes it's excess Histamine causing POIS for him but I wonder if there are more POISers who got it around that time or even earlier unfortunately ones that might have had it earlier would be harder to find because they could be less likely to use the Internet or might not know POIS is a thing and so on etc.
I remember someone on this forum posted about symptoms appearing back in 80s. This person said it developed after antibiotic use. 
Title: Re: Is POIS a version of CFS?
Post by: Muon on December 10, 2020, 11:06:25 AM
I remember someone on this forum posted about symptoms appearing back in 80s. This person said it developed after antibiotic use.

https://poiscenter.com/forums/index.php?topic=3098.msg31156#msg31156
Title: Re: Is POIS a version of CFS?
Post by: Muon on December 10, 2020, 06:51:08 PM
Video about Marian Lemle's Hydrogen Sulfide theory (https://forums.phoenixrising.me/threads/video-about-marian-lemles-hydrogen-sulfide-theory.82322/)

I get the impression that POIS puts you into a state of semi-hibernation. I believe a few POISers here said the same thing.
Title: Re: Is POIS a version of CFS?
Post by: Muon on December 17, 2020, 01:04:38 PM
Association between Chronic Pain and Alterations in the Mesolimbic Dopaminergic System (https://forums.phoenixrising.me/threads/association-between-chronic-pain-and-alterations-in-the-mesolimbic-dopaminergic-system.82376/)
Title: Re: Is POIS a version of CFS?
Post by: Mr Raba on December 24, 2020, 12:20:20 AM
Hi,

I actually flew to LA to see Dr. Jay Golgstein circa 1990.  Such a nice guy. I had read his book. Maybe it was not fully published then.

He tried sequentially many of the meds in his list. I could not tell what did what because of the short time they were all administered while in his office. Eventually and due to the literature of the time I tried  oxytocin shots. That went badly.  DHEA went far worse. It gave me a bad case of OCD that took more than a decade to finally go away. It worked some first, but then I caught chicken pox while on it and what a horrible experience, also and when  I tried to go back on it. Like going insane. What I learned with the decades and trials is to very careful taking active hormones that put a forcing function on my tenuous hormonal equilibrium.


Goldstein told me that he knew of several men with just POIS symptoms that had sought his help. So my combo case (POIS and CFS which are labels describing symptoms) was nothing new to him. He did not have a cure for either but it was so nice to talk to great Dr. that got our suffering and dedicated his life to the neuroscience of these conditions. Of course CFS has come far ahead since then.

Although Goldstein knew the conditions were related somehow more than 25 years ago, I am just starting to see greater interest from some POISERs and CFSers on looking at what light one condition might share on the other.

His book is very interesting history. The new science on CFS that helps me as a combo sufferer on both fronts is light years ahead and is well
described and published in this site. 

https://www.healthrising.org/


   
Title: Re: Is POIS a version of CFS?
Post by: Muon on December 24, 2020, 10:55:31 AM
This is mindblowing info Mr Raba. Do you know if he managed to fix at least one POISer? And if so what did he give this patient? Thanks for sharing this.
Title: Re: Is POIS a version of CFS?
Post by: Muon on December 24, 2020, 01:45:25 PM
One of his publications: Fibromyalgia syndrome: a pain modulation disorder related to altered limbic function? (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7134909/pdf/main.pdf)
Title: Re: Is POIS a version of CFS?
Post by: demografx on December 24, 2020, 05:24:59 PM
Sent Mr Raba’s post to POIS Research Team (Dr Prause is in L.A.)

Thanks, Muon, for your alert.
Title: Re: Is POIS a version of CFS?
Post by: Hopeoneday on December 25, 2020, 08:35:49 AM
https://me-pedia.org/wiki/Evidence_of_widespread_metabolite_abnormalities_in_Myalgic_encephalomyelitis/chronic_fatigue_syndrome:_assessment_with_whole-brain_magnetic_resonance_spectroscopy_(2019)_Mueller,_et_al

(https://me-pedia.org/images/c/cb/Younger_Therm_Results.JPG)
See lactate and choline results to.

(https://me-pedia.org/images/6/64/Younger_Choline_Results.JPG)

I think if you do therm result of brain in pois you will get the same results.
Title: Re: Is POIS a version of CFS?
Post by: Hopeoneday on December 25, 2020, 08:45:06 AM
https://me-pedia.org/wiki/Neuroinflammation

Posible mast cells open BBB then microglia activation....
Title: Re: Is POIS a version of CFS?
Post by: Hopeoneday on December 25, 2020, 08:46:15 AM
https://me-pedia.org/wiki/Brains_of_People_With_Chronic_Fatigue_Syndrome_Offer_Clues_About_Disorder_-_New_York_Times:_Well_(2014)

(https://me-pedia.org/images/3/32/ME-CFS_Brain_Images.jpg)
White metter degradation.
Title: Re: Is POIS a version of CFS?
Post by: Hopeoneday on December 25, 2020, 08:53:48 AM
https://me-pedia.org/wiki/Metabolic_features_of_chronic_fatigue_syndrome#Viruses_and_CFS:_Statements_by_Ron_Davis_and_Bob_Naviaux

Viruses is only consequences of imunity action in me cfs mcas pois if you ask me.
Title: Re: Is POIS a version of CFS?
Post by: Hopeoneday on December 25, 2020, 09:01:07 AM
https://me-pedia.org/wiki/Myalgic_encephalomyelitis#Other_diagnostic_criteria

The following are some syndromes and diseases that have been associated with or misdiagnosed as ME:

    fibromyalgia[87]
    chronic Lyme disease[88][89]
    idiopathic intracranial hypertension[86]
    postural orthostatic tachychardia syndrome[90][91]
    irritable bowel syndrome[87]
    thyroid disease[92]
    Ehlers-Danlos syndrome[92]
    Sjögren's syndrome[92]
    multiple chemical sensitivity[87]

Clinical findings
Alem Matthees is an Australian ME patient that filed an FOI request for data from the PACE trial. At a great cost to his health, Alem appealed the denial of the data and won. This data proved the results published in The Lancet were untrue. Alem's health suffered significantly in part from the efforts required for the FOI request and tribunal
Although there is no definitive biomarker, several signs and findings have been frequently observed in clinical settings:

Clinical findings fit in POIS
High antibody titers to specific infections (including EBV,[33]HHV-6,[34][35]and Coxsackie B[36][37] among others)
    hormone imbalance[38]
    immunological abnormalities[39][40][41]
    low natural killer cell function[42]
    low red blood cell magnesium[43]
    postural orthostatic tachychardia (POTS)[44][45]
    physical and mental exertion, sensory input cause relapse (PEM)[46][47]


Signs and symptoms fit in POIS and MCAS

Myalgic encephalomyelitis is a neurological disease that affects multiple bodily systems, causing a widespread combination of symptoms.[28] Symptoms can range from mild to very severe and can include:

    ataxia (coordination difficulties)
    cognitive dysfunction
    fatigability
    gastrointestinal symptoms
    headache
    low-grade fever, temperature instability
    muscle weakness and fatiguability
    myalgia (muscle pain)
    neck and back or spinal cord stiffness
    neuralgia (nerve pain)
    othostatic intolerance
    post-exertional malaise
    sensitivity to heat or cold
    sensitivity to light, sound and/or touch
    sleep dysfunction[28]
Title: Re: Is POIS a version of CFS?
Post by: Hopeoneday on December 25, 2020, 09:09:19 AM
All explained mepedia:
https://me-pedia.org/wiki/Myalgic_encephalomyelitis
Title: Re: Is POIS a version of CFS?
Post by: Journey on December 25, 2020, 10:55:41 AM
All explained mepedia:
https://me-pedia.org/wiki/Myalgic_encephalomyelitis
Interesting there seems to be alot of data showing that ME/CFS/POIS could have actual physical reasons for them how do you think what is the very root cause that started the rest of the dysfunction cascade in those disorders?
Title: Re: Is POIS a version of CFS?
Post by: Nas on December 25, 2020, 12:44:26 PM
Mr Rabaa

Based on Goldstein's diagram found here: https://forums.phoenixrising.me/threads/dr-jay-goldsteins-rapid-remission-me-cfs-treatments.34516/page-6#post-582561

You feel worse by taking dopamine agonists like Oxytocin and DHCA. So according to the diagram you should feel better if you use ketamine agonists, dopamine antagonists and Benzodiazepine antagonists. And Goldstein would recommend adenosine drops as treatment for this condition.

Didn't he go for this plan with you?
Title: Re: Is POIS a version of CFS?
Post by: demografx on December 25, 2020, 07:50:03 PM

Amazing! (I don’t live far away from Dr G. - - although he might’ve moved since the 90’s)
Title: Re: Is POIS a version of CFS?
Post by: Hopeoneday on December 26, 2020, 01:21:07 PM
All explained mepedia:
https://me-pedia.org/wiki/Myalgic_encephalomyelitis
Interesting there seems to be alot of data showing that ME/CFS/POIS could have actual physical reasons for them how do you think what is the very root cause that started the rest of the dysfunction cascade in those disorders?

My personl opinion is toxin-hiden infection-imune(MCAS)-mitohondria...

See here https://me-pedia.org/wiki/Metabolic_features_of_chronic_fatigue_syndrome
So, you can see from here how mitohondria affect inate imune system.

Second, many people do not understand that the first response our body mounts against a viral, bacterial, or any kind of infection is metabolic. Yes, our chemistry is our first line of defense. Our chemistry reflects our instantaneous state of health. Innate immunity is coordinated by mitochondria and is an essential first step in developing adaptive immunity to any infectious agent. Without innate immunity there can be no antibodies and no NK cell activation, no mast cell activation, and no T cell mediated immunity.

And you can se here and i bolive this to that ours bodies "shot down"
to protect him self, mitochondra(when sense danger).

Naviaux believes the mitochondria are able to sense every kind of danger – from pathogens to pH changes to toxic elements from pesticides, heavy metals, etc. to inflammation. They sense trouble in the form of an infection when they detect a drop in voltage caused by the diversion of electrons (NADH / NADPH) to make viral components or respond to a broad variety of toxins.


Title: Re: Is POIS a version of CFS?
Post by: Muon on December 26, 2020, 01:32:38 PM
Second, many people do not understand that the first response our body mounts against a viral, bacterial, or any kind of infection is metabolic. Yes, our chemistry is our first line of defense. Our chemistry reflects our instantaneous state of health. Innate immunity is coordinated...

The first line of innate immune defense response are the defensins in your mucosa. There is actually one POISer with elevated fecal hBD2. I haven't seen more people who have done this test. https://poiscenter.com/forums/index.php?topic=3188.msg32995#msg32995

He also had low T and urinary tract infection I believe. White stuff in his urine-->defensins, hBD2?

Expression of Antimicrobial Defensins in the Male Reproductive Tract of Rats, Mice, and Humans (https://academic.oup.com/biolreprod/article/68/1/95/2683422?login=true)

Toll-Like Receptor 4 in Rat Prostate: Modulation by Testosterone and Acute Bacterial Infection in Epithelial and Stromal Cells (https://academic.oup.com/biolreprod/article/75/5/664/2629011?login=true)

Androgenic regulation of beta-defensins in the mouse epididymis (https://rbej.biomedcentral.com/articles/10.1186/1477-7827-12-76)

TRT ---> changing defensin profile? Level of hBD2 in urine or in seminal fluid?
Title: Re: Is POIS a version of CFS?
Post by: Investigator on December 26, 2020, 02:31:52 PM
In CFS, is there a phase with complete recovery, during which the patient feels perfectly healthy? If yes, then sure, I would vote that POIS is a type of CFS, with specific trigger.

Yesterday and the day before, I was feeling great and strong. So I pushed myself on physical exercise yesterday (cardio). Only to activate my POIS and to get the brain fog and usual fatigue today.
Title: Re: Is POIS a version of CFS?
Post by: Muon on December 26, 2020, 02:52:37 PM
In CFS, is there a phase with complete recovery, during which the patient feels perfectly healthy? If yes, then sure, I would vote that POIS is a type of CFS, with specific trigger.

Yesterday and the day before, I was feeling great and strong. So I pushed myself on physical exercise yesterday (cardio). Only to activate my POIS and to get the brain fog and usual fatigue today.

Outside of triggers? Not completely from what I have read. They often have a baseline of symptoms when avoiding PEM triggers. What you are describing regarding physical exercise is what they call post-exertional malaise (PEM), often activated 24h after a trigger. People contacted me on the CFS forum telling me that they think POIS is some sort of an extreme PEM trigger related to orgasm/ejaculation. POIS, CFS, FMS, MCAS, POTS could be some kind of overlap syndromes, maybe related to brain regions. In many POISers POIS symptoms peak ~24h post O as well. Dr. Goldstein could be right, in that, POIS and CFS are related to eachother somehow.
Title: Re: Is POIS a version of CFS?
Post by: Muon on December 28, 2020, 05:39:49 PM
From the phoenix rising forum today; Members only thread so can't post a link. I also will not post the username:

Thread title: Dr. Jacob Teitelbaum got me well in 6 months after 8 years of illness

I had been sick for 8 years and no one could get me well. However, I saw Dr. Jacob Teitelbaum who specializes in chronic fatigue and he gave me 36 things to take and got me well in 6 months. He is now getting my sister in law well after other doctors could not help her. I highly recommend seeing him. He has around a 93% success rate and specializes in those that other doctors can’t treat. I had an antibiotic resistant bacterial infection you pick up from hospitals among other things wrong with me and in 3 months, I was much better and in 6 months I was perfectly well. He is worth seeing if you have tried everything else and it has failed.

Similar to Goldstein's approach? Anyway I will follow up on this.
Title: Re: Is POIS a version of CFS?
Post by: Muon on December 29, 2020, 01:31:19 PM
From the CFS forum:

"Fecal microbiome transplant (FMT) looks to be a promising procedure that can help in a lot of cases for people colonised with antibiotic resistant bacteria. One small study suggests it can help with bloodstream infections too."
https://eurekalert.org/pub_releases/2020-04/ddw-fti042920.php

https://www.sciencedirect.com/science/article/pii/S2452231720300026
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6667716/
https://www.frontiersin.org/articles/10.3389/fmicb.2019.01704/full
Title: Re: Is POIS a version of CFS?
Post by: Muon on December 31, 2020, 12:18:17 PM
mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas (https://forums.phoenixrising.me/threads/mtor-inhibitor-rapamune-helps-5-me-cfs-patients-in-dallas.50550/)

mTOR mutations?

"Adenosine blocks IL2. Book (https://books.google.nl/books?id=kYbMBQAAQBAJ&pg=PA73&lpg=PA73&dq=adenosine+blocks+il2&source=bl&ots=1SCdmyAm4L&sig=dkRkfR4GZQjtQDKMYgmsKfuQXnk&hl=en&sa=X&redir_esc=y#v=onepage&q=adenosine%20blocks%20il2&f=false)

Caffeine acts by directly blocking Adenosine.

Caffeine raises IL2... ?
"

I wonder how adenosine and mTOR inhibtors (rapamycin) affect POISers. If low Tregs are involved in POIS you want to boost IL-2 though. It's nanna1's strategy as well, if I'm not mistaken, to boost IL-2.

Activation of mTOR makes mast cells more responsive btw (in a bad way).
Title: Re: Is POIS a version of CFS?
Post by: Hopeoneday on December 31, 2020, 03:24:16 PM
(https://medcraveonline.com/IJCAM/images/IJCAM-04-00119-g001.png)

Put compromised imunity(lack of inate etc...) in this cycles,
put toxic heawy metals, pesticides from foods, lack of detox fases,
liver etc..guts problems...
Title: Re: Is POIS a version of CFS?
Post by: Muon on December 31, 2020, 08:56:52 PM
Input: my Immune profile from IMD Berlin (https://forums.phoenixrising.me/threads/input-my-immune-profile-from-imd-berlin.81029/)

Results of the German Cell Trend laboratory for POTS (https://forums.phoenixrising.me/threads/results-of-the-german-cell-trend-laboratory-for-pots.62366/)

There are some similarities in parameters that I share with Mitoman. Overlap syndromes = overlap of parameters? He went to the same lab btw.
Title: Re: Is POIS a version of CFS?
Post by: Muon on January 02, 2021, 03:13:56 PM
ME/CFS for 18 years, recently diagnosed with D-Lactic acidosis as cause of symptoms and illness. (https://forums.phoenixrising.me/threads/me-cfs-for-18-years-recently-diagnosed-with-d-lactic-acidosis-as-cause-of-symptoms-and-illness.57613/)
Title: Re: Is POIS a version of CFS?
Post by: Muon on January 06, 2021, 04:34:49 PM
Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (https://forums.phoenixrising.me/threads/metabolic-profiling-indicates-impaired-pyruvate-dehydrogenase-function-in-myalgic-encephalopathy-cfs.48446/)
Title: Re: Is POIS a version of CFS?
Post by: Muon on January 08, 2021, 10:34:13 AM
What Is Your Body Temperature? Rethinking 98.6 (https://forums.phoenixrising.me/threads/what-is-your-body-temperature-rethinking-98-6.1454/)
Title: Re: Is POIS a version of CFS?
Post by: Muon on January 10, 2021, 01:16:51 PM
https://forums.phoenixrising.me/threads/you-probably-have-an-autoimmune-disease.82395/page-5#post-2316670

Alpha-1 Adrenergic receptor (a1AR) autoantibody at #1. What about POISers? And what about autoantibodies against opioid receptors?
Title: Re: Is POIS a version of CFS?
Post by: Muon on January 14, 2021, 05:29:02 PM
For the latest posts on the Phoenix Rising forum: New Posts (https://forums.phoenixrising.me/whats-new/posts/?skip=1)
Title: Re: Is POIS a version of CFS?
Post by: Muon on January 15, 2021, 11:34:20 PM
Small fiber (poly)neuropathy (https://forums.phoenixrising.me/threads/small-fibre-neuropathy-weirdness.81888/#post-2316963)
Title: Re: Is POIS a version of CFS?
Post by: Hopeoneday on January 31, 2021, 02:54:20 PM
Increased neutrophil apoptosis in chronic fatigue syndrome


Background/Aims: Many patients with chronic fatigue syndrome (CFS) have symptoms that are consistent with an underlying viral or TOXIC illness. Because increased neutrophil apoptosis occurs in patients with infection, this study examined whether this phenomenon also occurs in patients with CFS.

https://jcp.bmj.com/content/57/8/891.short
Title: Re: Is POIS a version of CFS?
Post by: Muon on February 03, 2021, 04:19:17 PM
Exercise-->Unknown source (Mast cells can release this)--> ^Mitochondrial DNA-->Microglia--->^IL-1b

Exosome-associated Mitochondrial DNA is Elevated in Patients with ME/CFS and Stimulates Human Cultured Microglia to Secrete IL-1b (https://forums.phoenixrising.me/threads/exosome-associated-mitochondrial-dna-is-elevated-in-patients-with-me-cfs-and-stimulates-human-cultured-microglia-to-secrete-il-1v.82835/)

Mitochondrial DNA has been found elevated in Autism.
Title: Re: Is POIS a version of CFS?
Post by: Muon on February 04, 2021, 10:39:17 AM
Discriminatory cytokine profiles predict muscle function, fatigue and cognitive function in patients with Myalgic Encephalomyelitis/CFS (https://forums.phoenixrising.me/threads/discriminatory-cytokine-profiles-predict-muscle-function-fatigue-and-cognitive-function-in-patients-with-myalgic-encephalomyelitis-cfs.81197/)
Title: Re: Is POIS a version of CFS?
Post by: Muon on February 06, 2021, 11:52:52 AM
Although Goldstein knew the conditions were related somehow more than 25 years ago, I am just starting to see greater interest from some POISERs and CFSers on looking at what light one condition might share on the other.
Quote from: lovelife28
I saw that someone mentioned that this started when they got CFS and that is exactly what happend to me. When I was 25 I got MONO and that turned to CFS so they say anyway I was bedridden for two years, I'm now 29 and almost back to my old self but this POIS has been going on for two years. I never had the orgasm problems before getting ill so it must be linked.
https://www.thenakedscientists.com/forum/index.php?topic=14697.msg344849#msg344849
Title: Re: Is POIS a version of CFS?
Post by: Muon on February 06, 2021, 01:24:15 PM
Free blood gases analysis [Netherlands] (https://forums.phoenixrising.me/threads/free-blood-gases-analysis-netherlands.50782/)
Title: Re: Is POIS a version of CFS?
Post by: Muon on February 07, 2021, 12:48:17 PM
Men: nocturnal emission (https://forums.phoenixrising.me/threads/men-nocturnal-emission.82865/)

"But: it occurs in some severely ill ME patients when they are awake. Many told me they only have to think of a woman/man and instantly ejaculate. Some say it's related to stress: whenever they feel stressed they ejaculate."
Title: Re: Is POIS a version of CFS?
Post by: Muon on February 07, 2021, 06:36:16 PM
https://scholar.google.nl/scholar?hl=nl&as_sdt=0%2C5&q=microbiome+cfs&btnG=
Title: Re: Is POIS a version of CFS?
Post by: Hopeoneday on February 08, 2021, 07:43:53 AM
Reductions in Cerebral Blood Flow Can Be Provoked by Sitting in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients
https://www.mdpi.com/2227-9032/8/4/394

Conection to Pois- cfs-CMV trigered...
Recovery of neutrophil count by ganciclovir in patients with chronic idiopathic neutropenia associated with cytomegalovirus infection in bone marrow stromal cells
https://pubmed.ncbi.nlm.nih.gov/15218961/
Title: Re: Is POIS a version of CFS?
Post by: Cursed on February 09, 2021, 07:44:48 PM
https://forums.phoenixrising.me/threads/you-probably-have-an-autoimmune-disease.82395/page-5#post-2316670

Alpha-1 Adrenergic receptor (a1AR) autoantibody at #1. What about POISers? And what about autoantibodies against opioid receptors?
I think antibodies to adrenergic receptors is a very probable cause of POIS.
https://poiscenter.com/forums/index.php?topic=3300.0
Title: Re: Is POIS a version of CFS?
Post by: demografx on February 09, 2021, 10:11:32 PM

I think antibodies to adrenergic receptors is a very probable cause of POIS.


Wow.

Very strong statement!
Title: Re: Is POIS a version of CFS?
Post by: Muon on February 10, 2021, 09:40:28 AM
She (Learner1) got elevated IFN-g, IL-12, IL-18 and elevated antibodies @ celltrend against (via private conversation): Alpha-1 adrenergic receptor and Muscarinic cholinergic (M4) receptor. https://forums.phoenixrising.me/threads/discriminatory-cytokine-profiles-predict-muscle-function-fatigue-and-cognitive-function-in-patients-with-myalgic-encephalomyelitis-cfs.81197/#post-2294547
Title: Re: Is POIS a version of CFS?
Post by: Iwillbeatthis on February 10, 2021, 10:37:25 AM
I tested for adrenal cortex antibody and was negative not sure if it's the same thing as you're speaking about.
Title: Re: Is POIS a version of CFS?
Post by: Cursed on February 10, 2021, 10:54:13 AM

I think antibodies to adrenergic receptors is a very probable cause of POIS.


Wow.

Very strong statement!

I'm a layman, so take this with a huge grain of salt. I just think autoimmunity would explain why people find help with strategies that manipulate the gut (diet, probiotics, antibiotics, etc),  various supplementa, etc. Alternatively, there could be many other explanations, but autoimmunity, HPA axis dysfunction is where it is, IMO. This is pure speculation on my part.
Title: Re: Is POIS a version of CFS?
Post by: Cursed on February 10, 2021, 10:56:52 AM
I tested for adrenal cortex antibody and was negative not sure if it's the same thing as you're speaking about.
It's not. It's completely different.
Title: Re: Is POIS a version of CFS?
Post by: Iwillbeatthis on February 10, 2021, 01:21:32 PM
Dr Theoharides suggested checking folate auto antibodies for me considering I react to all forms of folate and have a folate deficiency
Title: Re: Is POIS a version of CFS?
Post by: Muon on February 10, 2021, 01:41:31 PM
Dr Theoharides suggested checking folate auto antibodies for me considering I react to all forms of folate and have a folate deficiency
What lab provides this test?
Title: Re: Is POIS a version of CFS?
Post by: Iwillbeatthis on February 10, 2021, 01:58:29 PM
What lab provides this test?

http://iliadneuro.com/ he said it was the only lab in the world that does this test.
Title: Re: Is POIS a version of CFS?
Post by: Iwillbeatthis on February 11, 2021, 07:03:07 AM
Dr Theoharides suggested checking folate auto antibodies for me considering I react to all forms of folate and have a folate deficiency

From reddit :
"There is an increasing body of evidence that gut microbe Lactobacillus Reuteri is deficient in many people with ASD, and one of the products of this microbe is folate.

I've just started taking it myself and seems to be having a positive effect, but it may be worth a shot as it can be easily purchased over the counter."
Title: Re: Is POIS a version of CFS?
Post by: Journey on February 11, 2021, 10:46:20 AM

I think antibodies to adrenergic receptors is a very probable cause of POIS.


Wow.

Very strong statement!

I'm a layman, so take this with a huge grain of salt. I just think autoimmunity would explain why people find help with strategies that manipulate the gut (diet, probiotics, antibiotics, etc),  various supplementa, etc. Alternatively, there could be many other explanations, but autoimmunity, HPA axis dysfunction is where it is, IMO. This is pure speculation on my part.
My POIS disappeared during the duration of being sick with the cold in the 2020 February despite not abstaining during that time and the moment it healed and I trigerred the POIS it came back full with symptoms but when I did not have it I had even less brain fog and symptoms in general and felt better than I feel even on many weeks of abstinence in terms of cognitive clarity and such however due to the cold itself I did not feel that well physically however cognitively I had almost zero brain fog and this weird mental processing speed slowdown I seem to always have even when on a long streak of abstinence had fully disappeared while I was sick with that cold in the 2020 February
Title: Re: Is POIS a version of CFS?
Post by: Iwillbeatthis on February 11, 2021, 10:51:04 AM
My POIS disappeared during the duration of being sick with the cold in the 2020 February despite not abstaining during that time and the moment it healed

Haha yes we all know this now you've said it many many times.
Title: Re: Is POIS a version of CFS?
Post by: Cursed on February 11, 2021, 10:51:41 AM

I think antibodies to adrenergic receptors is a very probable cause of POIS.


Wow.

Very strong statement!

I'm a layman, so take this with a huge grain of salt. I just think autoimmunity would explain why people find help with strategies that manipulate the gut (diet, probiotics, antibiotics, etc),  various supplementa, etc. Alternatively, there could be many other explanations, but autoimmunity, HPA axis dysfunction is where it is, IMO. This is pure speculation on my part.
My POIS disappeared during the duration of being sick with the cold in the 2020 February despite not abstaining during that time and the moment it healed and I trigerred the POIS it came back full with symptoms but when I did not have it I had even less brain fog and symptoms in general and felt better than I feel even on many weeks of abstinence in terms of cognitive clarity and such however due to the cold itself I did not feel that well physically however cognitively I had almost zero brain fog and this weird mental processing speed slowdown I seem to always have even when on a long streak of abstinence had fully disappeared while I was sick with that cold in the 2020 February

One more argument for POIS being related to CFS, because this is not uncommon in CFS community to have symptoms improve or disappear when sick. I've also had this experience. Some say it's because immune system shifts the focus away from something that's causing symptoms (maybe pathogen or autoimmunity) and directs it where ir is most needed, fighting the virus.
Title: Re: Is POIS a version of CFS?
Post by: Journey on February 11, 2021, 11:49:04 AM

I think antibodies to adrenergic receptors is a very probable cause of POIS.


Wow.

Very strong statement!

I'm a layman, so take this with a huge grain of salt. I just think autoimmunity would explain why people find help with strategies that manipulate the gut (diet, probiotics, antibiotics, etc),  various supplementa, etc. Alternatively, there could be many other explanations, but autoimmunity, HPA axis dysfunction is where it is, IMO. This is pure speculation on my part.
My POIS disappeared during the duration of being sick with the cold in the 2020 February despite not abstaining during that time and the moment it healed and I trigerred the POIS it came back full with symptoms but when I did not have it I had even less brain fog and symptoms in general and felt better than I feel even on many weeks of abstinence in terms of cognitive clarity and such however due to the cold itself I did not feel that well physically however cognitively I had almost zero brain fog and this weird mental processing speed slowdown I seem to always have even when on a long streak of abstinence had fully disappeared while I was sick with that cold in the 2020 February

One more argument for POIS being related to CFS, because this is not uncommon in CFS community to have symptoms improve or disappear when sick. I've also had this experience. Some say it's because immune system shifts the focus away from something that's causing symptoms (maybe pathogen or autoimmunity) and directs it where ir is most needed, fighting the virus.
I wonder what is the root cause of this immune engagement? John21 POIS disappeared for some months after taking antibiotics and then returned. That could mean perhaps there is some pathogen that is chronically in the organisms of those with those rare chronic multisymptoms disorders and they either are attacked directly and thus the inflammation formed affects other and nearby tissues as well or they mimick healthy tissue which then the immunity system interprets as the pathogen because of their similarities and therefore causes those symptoms. Therefore the question should be what is the root cause of those symptoms and what to do to permanently fix and cure it? If John21 had POIS disappear for some months after taking those antibiotics and probiotics and then it returned it could mean for some reason those potential possible pathogens tend to return therefore the question should be why they returned in John21 POIS case? And what to do to ensure the organism is permanently free from those underlying imbalances or pathogens that then cause those symptoms. It could besome other imbalance that makes it harder for the body to naturally fight against them or some foods or environmental factors might contain them and the POISers are more prone to having those pathogens accumulate or some genetical reasons could make it easier for those pathogens to accumulate
Title: Re: Is POIS a version of CFS?
Post by: demografx on February 11, 2021, 09:27:36 PM

I'm a layman, so take this with a huge grain of salt...


Cursed, everyone is a POIS layman, MD’s included, because no one knows what POIS is all about.

Therefore, as a POISer, I hereby classify you as an expert! ;D
Title: Re: Is POIS a version of CFS?
Post by: Muon on February 12, 2021, 08:39:18 AM
CCI SURVEY – for all ME/CFS patients tested for CCI and related conditions (please answer whether tested positive or negative) (https://forums.phoenixrising.me/threads/cci-survey-for-all-me-cfs-patients-tested-for-cci-and-related-conditions-please-answer-whether-tested-positive-or-negative.77371/)

Check the survey results. Some numbers are really high.
Title: Re: Is POIS a version of CFS?
Post by: Cursed on February 13, 2021, 04:23:46 PM

I think antibodies to adrenergic receptors is a very probable cause of POIS.


Wow.

Very strong statement!

I'm a layman, so take this with a huge grain of salt. I just think autoimmunity would explain why people find help with strategies that manipulate the gut (diet, probiotics, antibiotics, etc),  various supplementa, etc. Alternatively, there could be many other explanations, but autoimmunity, HPA axis dysfunction is where it is, IMO. This is pure speculation on my part.
My POIS disappeared during the duration of being sick with the cold in the 2020 February despite not abstaining during that time and the moment it healed and I trigerred the POIS it came back full with symptoms but when I did not have it I had even less brain fog and symptoms in general and felt better than I feel even on many weeks of abstinence in terms of cognitive clarity and such however due to the cold itself I did not feel that well physically however cognitively I had almost zero brain fog and this weird mental processing speed slowdown I seem to always have even when on a long streak of abstinence had fully disappeared while I was sick with that cold in the 2020 February

One more argument for POIS being related to CFS, because this is not uncommon in CFS community to have symptoms improve or disappear when sick. I've also had this experience. Some say it's because immune system shifts the focus away from something that's causing symptoms (maybe pathogen or autoimmunity) and directs it where ir is most needed, fighting the virus.
I wonder what is the root cause of this immune engagement? John21 POIS disappeared for some months after taking antibiotics and then returned. That could mean perhaps there is some pathogen that is chronically in the organisms of those with those rare chronic multisymptoms disorders and they either are attacked directly and thus the inflammation formed affects other and nearby tissues as well or they mimick healthy tissue which then the immunity system interprets as the pathogen because of their similarities and therefore causes those symptoms. Therefore the question should be what is the root cause of those symptoms and what to do to permanently fix and cure it? If John21 had POIS disappear for some months after taking those antibiotics and probiotics and then it returned it could mean for some reason those potential possible pathogens tend to return therefore the question should be why they returned in John21 POIS case? And what to do to ensure the organism is permanently free from those underlying imbalances or pathogens that then cause those symptoms. It could besome other imbalance that makes it harder for the body to naturally fight against them or some foods or environmental factors might contain them and the POISers are more prone to having those pathogens accumulate or some genetical reasons could make it easier for those pathogens to accumulate

Seems like my reply to this post disappeared? Well, anyway, I think this is something that you want to look at if you want to dig deeper:
https://pubmed.ncbi.nlm.nih.gov/30021103/

Re-framing the theory of autoimmunity in the era of the microbiome: persistent pathogens, autoantibodies, and molecular mimicry
Amy D Proal  1 , Trevor G Marshall  1

Abstract

The theory of autoimmunity was developed at a time when the human body was regarded as largely sterile. Antibodies in patients with chronic inflammatory disease could consequently not be tied to persistent human pathogens. The concept of the "autoantibody" was created to reconcile this phenomenon. Today, however, the discovery of the human microbiome has revolutionized our understanding of human biology. Humans are superorganisms that harbor trillions of persistent microbial cells. Indeed, vast human microbiomes have been detected in human tissue and blood. These microbial ecosystems harbor thousands of newly identified bacteria, viruses, and other microorganisms -- most of which can act as pathogens under conditions of immunosuppression. The theory of autoimmunity must be revised to account for the human microbiome. Here, we propose a model in which "autoantibodies" are created in response to chronic, persistent microbiome pathogens. The structural homology (molecular mimicry) between pathogen and host proteins can result in "collateral damage" to surrounding human tissue. This calls for a paradigm shift in autoimmune disease treatment. Immunosuppressive medications palliate inflammatory symptoms at the expense of microbiome health and balance. In contrast, treatments that support the immune system in autoimmune disease could allow patients to target pathogens at the root of the disease process.
Title: Re: Is POIS a version of CFS?
Post by: Muon on February 19, 2021, 05:04:14 PM
I have had CFS for 6 years and my wife just developed it too (https://forums.phoenixrising.me/threads/i-have-had-cfs-for-6-years-and-my-wife-just-developed-it-too.81560/)

Also my gf has terrible POIS too, and by terrible I mean really for like 2-3 days if she orgasms twice in a day...

These symptoms started for my guy when he was 15 years old. But I don?t know when these really started for me. My guy was the one who found that I also have this thing. Before, we thought only he has this shit. (We called it ?Over?). Then we started to notice my symptoms too. We did search internet and I found you tube video about POIS and then I saw this forum link in the comments section.
Title: Re: Is POIS a version of CFS?
Post by: Muon on February 21, 2021, 07:44:41 AM
Organic Acid Test (OAT) results – do we ALL show the Warburg effect? (https://forums.phoenixrising.me/threads/organic-acid-test-oat-results-do-we-all-show-the-warburg-effect.80662/)

Immune responses make use of glycolysis.  Pathogens can hijack host cell metabolism and may lead to the Warburg effect. Could some of these parameters be abnormal in POISers considering low BMI/energy that doesn't reflect their food intake?
Title: Re: Is POIS a version of CFS?
Post by: Muon on February 22, 2021, 05:41:00 PM
Cell-Based Blood Biomarkers for ME/CFS (Missailidis et al., 2020) (https://forums.phoenixrising.me/threads/cell-based-blood-biomarkers-for-me-cfs-missailidis-et-al-2020.83028/)
Title: Re: Is POIS a version of CFS?
Post by: Muon on February 24, 2021, 12:55:31 PM
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Human Herpesviruses Are Back! (https://www.mdpi.com/2218-273X/11/2/185/htm)

Furthermore, it was demonstrated that EBV dUTPase is secreted in exosomes from chemically induced Raji cells at sufficient levels to induce NF-?B activation and cytokine secretion in hDCs and PBMCs through a TLR 2-dependent mechanism [72]. Exosomes are produced by numerous cell types, have been implicated in numerous diseases, including ME/CFS [84], and are capable of trafficking to various organs within the body, including the brain, where they function as intercellular messengers.

Virus changing exosome content?

Exosomes in human semen carry a distinctive repertoire of small non-coding RNAs with potential regulatory functions (https://academic.oup.com/nar/article/42/11/7290/1440924?login=true)

Extracellular vesicles in human semen modulate antigen-presenting cell function and decrease downstream antiviral T cell responses (https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0223901)

(https://www.mdpi.com/biomolecules/biomolecules-11-00185/article_deploy/html/images/biomolecules-11-00185-g003.png)

A downregulated DBH can be problematic when you need a burst of norepi during orgasm via DBH.
Title: Re: Is POIS a version of CFS?
Post by: Cursed on March 02, 2021, 06:03:35 PM
Crossposting my own message from another thread, because I think it's important:
https://poiscenter.com/forums/index.php?topic=555.msg39561#msg39561
Title: Re: Is POIS a version of CFS?
Post by: Muon on March 11, 2021, 01:25:37 PM
Neuroinflammation and Cytokines in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Critical Review of Research Methods (https://www.frontiersin.org/articles/10.3389/fneur.2018.01033/full)
Table 1: Brief review of brain magnetic resonance spectroscopy (MRS) studies in ME/CFS. Click on pic:
(https://www.frontiersin.org/files/Articles/421061/fneur-09-01033-HTML-r2/image_m/fneur-09-01033-t001.jpg)
Title: Re: Is POIS a version of CFS?
Post by: Muon on March 22, 2021, 04:32:20 PM
Reduced Endothelial Function in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome–Results From Open-Label Cyclophosphamide Intervention Study (https://forums.phoenixrising.me/threads/reduced-endothelial-function-in-me-cfs-results-open-label-cyclophosphamide-intervention-study.83317/)

Muon's prediction for the future: Reduced endothelial function in Post-Orgasmic Illness Syndrome.
Title: Re: Is POIS a version of CFS?
Post by: Muon on March 28, 2021, 04:33:20 PM
ME/CFS Research: Herpes Autoimmune Spectrum Disorder (https://forums.phoenixrising.me/threads/me-cfs-research-herpes-autoimmune-spectrum-disorder.83371/)
Title: Re: Is POIS a version of CFS?
Post by: Muon on April 01, 2021, 03:42:30 PM
RIP Dr. Jay A. Goldstein (https://ammes.org/2021/04/01/rip-dr-jay-a-goldstein/)
(https://ammes.org/wp-content/uploads/2021/04/goldsteincrop.jpg)
"I was deeply saddened to learn that Dr. Jay Goldstein had passed away on March 4, 2021. Dr. Goldstein was a pioneer among ME/CFS researchers and clinicians. He rose to prominence in the 1990s through his clinical practice, and through the publication of several seminal works, chief among them: Betrayal by the Brain : The Neurologic Basis of Chronic Fatigue Syndrome, Fibromyalgia Syndrome, and Related Neural Network Disorders, Tuning the Brain : Principles and Practice of Neurosomatic Medicine, and Chronic Fatigue Syndromes : The Limbic Hypothesis. In addition to his books, Dr. Goldstein was also one of the editors, along with Dr. Byron Hyde, of The Clinical and Scientific Basis of Myalgic Encephalomyelitis-Chronic Fatigue Syndrome, a collection of papers on clinical practice and research that remains unsurpassed in both depth and scope.

Dr. Goldstein believed that ME/CFS was the result of an insult to the limbic system, located deep within the brain. The limbic system is involved with memory, emotion, and regulation of the autonomic nervous system. This last function is of critical importance to maintaining homeostasis in the body, as the autonomic nervous system regulates appetite, body temperature, blood pressure, blood sugar, sleep, wakefulness, heart rate, digestion - in short, nearly every physiological function necessary for maintaining life.

Dr. Goldstein's theory, as laid out in his book, Betrayal by the Brain, was that ME/CFS is essentially a communication problem between the limbic system and the rest of the nervous system. His "limbic hypothesis" essentially states that no matter what the underlying cause of ME/CFS, the result is an injury to the limbic system, which subsequently causes widespread neuroimmune dysfunction. He identified ME/CFS as a "neurosomatic" illness, that is, a disorder of central nervous system processing. Dr. Goldstein based his theory on what he knew of the brain, which was substantial, as well as what he had observed of his patients' reactions to various psychotropic medications. Recent studies have shown that in his approach Dr. Goldstein was  far ahead of his time.

Dr. Goldstein will be sorely missed, not just for his tremendous insights but for his compassion and commitment to his patients. There will never be another like him. RIP Dr. Jay A. Goldstein.
"

Edit: Send me a private message when you are interested in his book Tuning the Brain.
Title: Re: Is POIS a version of CFS?
Post by: Iwillbeatthis on April 01, 2021, 04:06:52 PM
RIP if only there were more doctors out there like him...
Title: Re: Is POIS a version of CFS?
Post by: Mr Raba on May 12, 2021, 10:57:51 PM
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Human Herpesviruses Are Back! (https://www.mdpi.com/2218-273X/11/2/185/htm)

Furthermore, it was demonstrated that EBV dUTPase is secreted in exosomes from chemically induced Raji cells at sufficient levels to induce NF-?B activation and cytokine secretion in hDCs and PBMCs through a TLR 2-dependent mechanism [72]. Exosomes are produced by numerous cell types, have been implicated in numerous diseases, including ME/CFS [84], and are capable of trafficking to various organs within the body, including the brain, where they function as intercellular messengers.

Virus changing exosome content?

Exosomes in human semen carry a distinctive repertoire of small non-coding RNAs with potential regulatory functions (https://academic.oup.com/nar/article/42/11/7290/1440924?login=true)

Extracellular vesicles in human semen modulate antigen-presenting cell function and decrease downstream antiviral T cell responses (https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0223901)

(https://www.mdpi.com/biomolecules/biomolecules-11-00185/article_deploy/html/images/biomolecules-11-00185-g003.png)

A downregulated DBH can be problematic when you need a burst of norepi during orgasm via DBH.