Author Topic: POIS Paper Archive - a list of scientific articles about POIS (Read 93469 times)

Muon · « **Reply #80 on:** February 27, 2020, 07:19:19 AM »

That is media coverage based on paper #26. I can create a new header with media articles on page 1 and put it there. You have posted media articles througout the years on this forum. If you can find more of them I will copy paste them to the front page. Just place them in this comment section.

demografx · « **Reply #81 on:** February 27, 2020, 07:38:43 AM »

Thank you, Muon!

Quantum · « **Reply #82 on:** February 27, 2020, 07:28:34 PM »

A short case-report, not sure we have it yet in the archive:

https://sci-hub.se/10.1016/j.jsxm.2019.11.089

Quantum · « **Reply #83 on:** February 27, 2020, 07:40:51 PM »

And Here is the first results I see from the Tulane Survey that had been advertize on our home page for many months last year:

https://sci-hub.se/10.1016/j.jsxm.2019.11.085

This is the abstract of a conference ( 2019-11) by the Tulane team at an Urology congress.

demografx · « **Reply #84 on:** February 27, 2020, 09:15:58 PM »

Quantum, Great Work you did with Tulane!

Muon · « **Reply #85 on:** February 28, 2020, 11:05:13 AM »

Quote from: Quantum on February 27, 2020, 07:28:34 PM

A short case-report, not sure we have it yet in the archive:

https://sci-hub.se/10.1016/j.jsxm.2019.11.089

I think this one is the shorter version of #25. I will replace the hyperlinks by sci-hub links for convenience.

Mushnikk · « **Reply #86 on:** February 28, 2020, 11:09:37 AM »

Quote from: Muon on February 28, 2020, 11:05:13 AM

Quote from: Quantum on February 27, 2020, 07:28:34 PM
A short case-report, not sure we have it yet in the archive:

https://sci-hub.se/10.1016/j.jsxm.2019.11.089

I think this one is the shorter version of #25. I will replace the hyperlinks by sci-hub links for convenience.

Interestingly the short summary mentions a complete remission following probiotic treatment, whereas the actual paper is less specific: "The patient subsequently self-started a probiotic containing Bacillus coagulans and fructooligosaccharide, which he reported improved his symptoms further." Perhaps the later published short summary includes a follow-up check with the patient underscoring the effectiveness of the probiotic.

Muon · « **Reply #87 on:** February 28, 2020, 11:14:56 AM »

They should do a lactulose (not to be confused with lactose) hydrogen+methane breath test in these patients.

Small Intestinal Bacterial Overgrowth Is Common in Mast Cell Activation Syndrome

Muon · « **Reply #88 on:** March 30, 2020, 10:26:51 AM »

Sci-hub.se appears to be down. Anyone else got this problem or is it me?

Mushnikk · « **Reply #89 on:** March 30, 2020, 10:34:46 AM »

Quote from: Muon on March 30, 2020, 10:26:51 AM

Sci-hub.se appears to be down. Anyone else got this problem or is it me?

Up and working for me, they often change their domain though.

Journey · « **Reply #90 on:** March 30, 2020, 02:25:27 PM »

Quote from: Muon on March 30, 2020, 10:26:51 AM

Sci-hub.se appears to be down. Anyone else got this problem or is it me?

Error 504 for me

Muon · « **Reply #91 on:** March 30, 2020, 03:11:35 PM »

Quote from: Journey on March 30, 2020, 02:25:27 PM

Quote from: Muon on March 30, 2020, 10:26:51 AM
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.

Muon · « **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 · « **Reply #93 on:** April 12, 2020, 02:43:07 AM »

Quote from: Muon 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!

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

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

demografx · « **Reply #94 on:** April 12, 2020, 11:25:13 AM »

Quote from: demografx on April 12, 2020, 02:43:07 AM

Quote from: Muon 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!

Why should they study it?

Quote from: Muon on April 11, 2020, 04:33:45 PM

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.

Muon · « **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 · « **Reply #96 on:** April 12, 2020, 12:00:27 PM »

Quote from: Muon on April 12, 2020, 11:56:21 AM

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!

Nas · « **Reply #97 on:** April 12, 2020, 02:42:09 PM »

Quote from: Muon 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!

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 · « **Reply #98 on:** April 12, 2020, 05:22:57 PM »

Quote from: Nas on April 12, 2020, 02:42:09 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.

Limejuice · « **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.

News:

Author Topic: POIS Paper Archive - a list of scientific articles about POIS (Read 93469 times)