Author Topic: POIS Paper Archive - a list of scientific articles about POIS  (Read 10232 times)

Journey

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Re: POIS Paper Archive
« Reply #90 on: March 30, 2020, 02:25:27 PM »
Sci-hub.se appears to be down. Anyone else got this problem or is it me?

Error 504 for me
INTP, 19 y.o. aware of POIS since 2019 when realized by abstaining that O/WD gives POIS, likely had it since puberty, fatigue, brainfog, clumsier, slower thinking/processing, voice volume goes down, sometimes harder to look in eyes, lower stamina/strength

Muon

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Re: POIS Paper Archive
« Reply #91 on: March 30, 2020, 03:11:35 PM »
Sci-hub.se appears to be down. Anyone else got this problem or is it me?

Error 504 for me

Error 502 for me. That means many articles posted on this forum are inaccessible. Replace .se by .tw in the URL and it will work again. I have changed the hyperlinks on page 1.
« Last Edit: March 30, 2020, 03:21:05 PM by Muon »

Muon

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Re: POIS Paper Archive
« Reply #92 on: April 11, 2020, 04:33:45 PM »
Almost 30 POIS papers exist at this point and not a single one discusses mast cell activation disease theory...mind blowing!

demografx

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Re: POIS Paper Archive
« Reply #93 on: April 12, 2020, 02:43:07 AM »

Almost 30 POIS papers exist at this point and not a single one discusses mast cell activation disease theory...mind blowing!

It’s just your own personal, unproven theory. Why should they study it?

But don’t get me wrong. I admire your exhaustive investigation.

10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: POIS Paper Archive
« Reply #94 on: April 12, 2020, 11:25:13 AM »

Almost 30 POIS papers exist at this point and not a single one discusses mast cell activation disease theory...mind blowing!

Why should they study it?

Because it is capable of generating the same type of symptoms seen in POIS patients. Why would they study allergic activation of the mast cell but don't even mention antibody indepedent activation of the mast cell aside from mastocytosis? They ignore it or they lack knowledge. I think it's the latter.


Then go convince someone to study it!! Thats where I put my energy these last 13 years. Writing only  to forum members - - as much as I love them - - got us nowhere.

« Last Edit: April 12, 2020, 01:53:24 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Muon

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Re: POIS Paper Archive
« Reply #95 on: April 12, 2020, 11:56:21 AM »
Hmm you are right this quite pointless. I have spoken to a dozen of researchers and specialists behind the scenes but to no avail. Time to hang up the gloves.

demografx

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Re: POIS Paper Archive
« Reply #96 on: April 12, 2020, 12:00:27 PM »

Time to hang up the gloves.


I hope not.

Over my last 13 years,  I wanted to quit - - a million times - - just to get POIS on a tiny medical map. But I persevered and we now have a shot at it!

Rare disorder medical research is not for the faint hearted!
« Last Edit: April 12, 2020, 01:24:21 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Nas

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Re: POIS Paper Archive
« Reply #97 on: April 12, 2020, 02:42:09 PM »
Almost 30 POIS papers exist at this point and not a single one discusses mast cell activation disease theory...mind blowing!
It's just the reality of the situation; research is painstakingly slow, and for such a rare disease? You're lucky we even have 30 papers. Expect perhaps 15 more years of stumbling in the dark until we can have a better understanding of what POIS is.
Speaking of your theory though, have you tried Chormolyn Sodium yet? I heard it's pretty cheap in Germany.

demografx

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Re: POIS Paper Archive
« Reply #98 on: April 12, 2020, 05:22:57 PM »

Expect perhaps 15 more years of stumbling in the dark until we can have a better understanding of what POIS is.


I totally reject this incredibly pessimistic notion.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Limejuice

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Re: POIS Paper Archive
« Reply #99 on: April 12, 2020, 09:00:38 PM »
I agree that research on some diseases has appeared slow, like cancer, which is an extremely complex disease. But that's one end of the spectrum that not many diseases fall into. The other end are new diseases that haven't been researched properly, which root causes could be quickly determined by professionals. And even more exciting is the potential for existing therapies/drugs not originally designed for the new disease, to actually treat it! For example, think about the possible drugs available to treat the NEW corona virus.

The special sauce in speeding up the operation is having professionals work on it. It's so much slower (10x slower) having us generate theories without proper testing, etc.
« Last Edit: April 12, 2020, 10:21:35 PM by Limejuice »

demografx

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Re: POIS Paper Archive
« Reply #100 on: April 12, 2020, 09:15:57 PM »
Many thanks, Limejuice
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

hurray

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Re: POIS Paper Archive
« Reply #101 on: April 14, 2020, 11:16:35 AM »
Almost 30 POIS papers exist at this point and not a single one discusses mast cell activation disease theory...mind blowing!

Scientists don't operate in a vacuum - they are part of a community, submitting papers to scientific journals for peer review and publication.

There is usually no formal barrier to publication. You probably have more knowledge than any other person about mast cell activation disease theory with respect to POIS.

Why not write and submit a paper of your own? If published, it would certainly get the attention and interest of other scientists, and perhaps lead to further research along similar lines.
« Last Edit: April 14, 2020, 11:28:18 AM by hurray »

demografx

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Re: POIS Paper Archive
« Reply #102 on: April 14, 2020, 11:36:06 AM »
hurray, very nice idea!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: POIS Paper Archive
« Reply #103 on: April 14, 2020, 12:32:16 PM »

You probably have more knowledge than any other person about mast cell activation disease theory with respect to POIS.


Unquestionably!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

hurray

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Re: POIS Paper Archive
« Reply #104 on: April 14, 2020, 12:38:48 PM »
hurray, very nice idea!

If we want the scientific community to take our ideas seriously, we need to speak their language. A scientific paper would be a great way for Muon to condense and formalize his research, and allow him to reach out to other scientists.