Author Topic: Add your name to list of men with CFS and POIS  (Read 1098 times)

Mr Raba

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Add your name to list of men with CFS and POIS
« on: May 24, 2021, 11:37:12 PM »
Would like to use this post to create a list of men with both POIS and CFS. And to share COVID vaccine reaction for our specific POIS subgroup.  Please reply to start generating the subtype member list and kindly share COVID vaccination status and reaction if applicable. And anything else you like.

Admins please kindly do not merge this post so it remains visible.

I (Mr Raba) had sudden onset of both syndromes since 1993. At age 27. Not yet vaccinated for COVID since I do not have enough data for reactions for our specific subgroup. And because a female first cousin of mine with only CFS (and mostly recovered) had an extremely strong reaction to Pfizer first vaccine. Her brain was “on fire” for days and became extremely sensitive to sounds, light, screens, etc. That lasted severily for a few days. But slowly got better to the point that after 1.5  months there is only little left as long as she does not push herself at all. But she is not fully back.

The following is a bit long but contains very interesting information:

She was one of those cases that after having CFS for almost 2 years she recovered eventually 100% with Metformin. When she stopped it, she got the fatigue again. So she kept it for 25 years and was so well after some years that she went to the Gym for 2 hours a day regularly with no issues.  But she relapsed with this vaccine at year number 25 while still on Metformin. She is getting better slowly. Hopefully she recovers her lost CFS progress.

By the way she was not diabetic. Just had some insulin intolerance.

Of course back then I tried Metformin multiple times with it making me sicker and my muscles sores and weaker the longer I took it. It was so bad I could not get past 2 days on it. Even my heart felt weaker.

So naturally being close genetically to my first cousin I need to do more research regarding COVID vaccine reactions. I am hoping that being a male who also has POIS sufficiently  distances me from her subtype. Also the fact that she states she got the boiling brain reaction to a second yellow fever vaccine 3 years later after first vaccine. But not as severe. She conjectures that set her CFS off months later. I had multiple yellow fever vaccines (while in south America) without such a strong reaction. But I still wonder if that later set me up for CFS. Yellow fever vaccines were supposed to be spaced 10 years apart. And now the standard is just one for life.

Thus I would like to find out more about our specific subtype of men with BOTH CFS and POIS. Is our subtype resilient to COVID vaccine as others with just POIS report?

Thank you all!

Simultaneous onset of CFS and POIS since Feb 1993. Married since 1989.

Helped by Immunocal (I explained how to take in previous posts).  Some relief on day one and day two.  It affects neurotransmitters.

Mr Raba

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Re: Add your name to list of men with CFS and POIS
« Reply #1 on: May 25, 2021, 10:24:34 PM »
Anyone?  :)
Simultaneous onset of CFS and POIS since Feb 1993. Married since 1989.

Helped by Immunocal (I explained how to take in previous posts).  Some relief on day one and day two.  It affects neurotransmitters.

Mr Raba

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Re: Add your name to list of men with CFS and POIS
« Reply #2 on: May 26, 2021, 04:28:40 PM »
I thought there were a few of us in this list.
Combo POIS and CFS. 
Simultaneous onset of CFS and POIS since Feb 1993. Married since 1989.

Helped by Immunocal (I explained how to take in previous posts).  Some relief on day one and day two.  It affects neurotransmitters.

Mr Raba

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Anyone else with both CFS and POIS?
« Reply #3 on: May 26, 2021, 04:36:45 PM »
Trying to create a thread for this subgroup.
Please say something if you have both.
Simultaneous onset of CFS and POIS since Feb 1993. Married since 1989.

Helped by Immunocal (I explained how to take in previous posts).  Some relief on day one and day two.  It affects neurotransmitters.

Hopeoneday

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Re: Anyone else with both CFS and POIS?
« Reply #4 on: May 26, 2021, 05:59:14 PM »
Something.
Dr-pois.

Hopeoneday

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Re: Add your name to list of men with CFS and POIS
« Reply #5 on: May 26, 2021, 06:01:10 PM »
Yes , me , a lot of poisers hawe CFS to , exercise intolerance etc...
Dr-pois.

Progecitor

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Re: Add your name to list of men with CFS and POIS
« Reply #6 on: May 27, 2021, 01:01:37 PM »
I also have both, although I would rather put it as POIS with a CFS aspect. I shared my covid and vaccine experiences in other threads.
What got me interested is that you mentioned that metformin deteriorated your symptoms. I checked what it is and it turns out to be another anti-diabetic drug with PPARG agonistic activity.

The anti-inflammatory effects of metformin inhibit the inflammatory response through downregulation of TLR4 expression and upregulation of PPARG activity.
https://www.europeanreview.org/wp/wp-content/uploads/4988-4995.pdf

This is interesting as I suspect that many PPARG agonists (not all!) have a detrimental effect on my case. I also want to test pioglitazone for the same reason, although I am not sure if I am going to be able to get a prescription for it.
You also mentioned your relative with CFS who reacted well to metformin. Some other POISers also seem to react well to PPARG agonists, which may mean that PPARG is really a dividing factor in both POIS and CFS subtypes.
It is true that metformin also downregulates TLR4 expression and this is supposed to be beneficial in severe covid infection.  Glycyrrhetinic acid is also a TLR4 antagonist and licorice actually helped my POIS case, although it may not have been due to this particular property.
It is also proposed by researchers that COVID-19 downregulates PPARG activity, but this has yet to be proven. 
So I don't exactly know why she had a severe reaction to the vaccine, but it seems quite reasonable to think that PPARG and TLR4 were involved in it.

Muon

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Re: Add your name to list of men with CFS and POIS
« Reply #7 on: May 27, 2021, 01:04:47 PM »
Yes me, Simon66 and a couple of females from the women with POIS thread.
« Last Edit: May 27, 2021, 01:08:26 PM by Muon »

berlin1984

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Re: Add your name to list of men with CFS and POIS
« Reply #8 on: May 29, 2021, 03:03:49 PM »
Related: https://poiscenter.com/forums/index.php?topic=342.0 (9 years old thread and we still did not fix this..  :-\ )

kingfisher

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Re: Add your name to list of men with CFS and POIS
« Reply #9 on: May 31, 2021, 05:17:31 AM »
Mr Raba,
I have chronic brain fog and fatigue even outside of a POIS cycle. POIS just makes it worse for me.
Not taken the vaccine yet.
« Last Edit: June 01, 2021, 07:38:18 AM by kingfisher »

Prospero

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Re: Add your name to list of men with CFS and POIS
« Reply #10 on: June 01, 2021, 03:29:43 PM »
Regarding the Pfizer vaccine and TLR4, kingfisher posted this paper elsewhere: The BNT162b2 mRNA vaccine against SARS-CoV-2 reprograms both adaptive and innate immune responses.

"The response of innate immune cells to TLR4 and TLR7/8 ligands was lower after BNT162b2 vaccination, while fungi-induced cytokine responses were stronger." (The fungi mentioned in the study are Candida albicans. TLR4 ligands are the bacterial toxins LPS. However, they also say that "the production of the anti-inflammatory cytokine IL-1Ra was reduced in response to bacterial lipopolysaccharide (LPS) after the second vaccination", which is he same as for Candida. Notice also: "On the other hand, inhibition of innate immune responses may diminish anti-viral responses.")
I don't know what to think of it.
« Last Edit: June 01, 2021, 03:46:58 PM by Prospero »