Author Topic: A New Survey  (Read 1009 times)

Magicwand

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A New Survey
« on: January 08, 2022, 07:02:48 PM »
Hello

I am conducting some research on POIS and have composed an anonymous survey for sufferers to complete if they would be so kind. I am an individual with no official affiliation but have previous research experience. I am also a lifelong POIS sufferer.

The survey I have constructed is a Google Survey and can be found at the following url:

https://docs.google.com/forms/d/e/1FAIpQLSfqsVxVJXOw-a35iOulYKOBoAIHmezmBr9rtHzsnRx9fmy4xA/viewform?usp=sf_link

It is designed to help elucidate the most prevalent symptoms within the POIS footprint and to help understand the characteristics of the condition in more detail amongst the population of sufferers.  It has also been designed to help identify key diagnostic criteria, symptom clusters and point to possible causes of the condition.

I would be very grateful if sufferers here would complete the survey so that we can get some meaningful insight into the profile of this condition across the population. The usefulness of the results will depend heavily on the number of survey responses completed so all cooperation is much appreciated.

Once I have a sufficient number of responses I will be happy to share the results with this POIS Forum.

If after completing the survey, anyone has any useful feedback I would be very happy to hear from them.

Thanks

Danmh

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Re: A New Survey
« Reply #1 on: January 09, 2022, 01:02:52 AM »
Hi Wand

I took the survey and am looking forward to seeing the results, when other members have done same. Perhaps you could add the option “No” to question 5, 6 and 7.

All the best
Danny

Magicwand

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Re: A New Survey
« Reply #2 on: January 09, 2022, 04:07:47 AM »
Hi Danny

Many thanks for that. Could you spell out that suggested option again please? It is showing as wingdings for me.

MW

berlin1984

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Re: A New Survey
« Reply #3 on: January 09, 2022, 04:59:32 AM »
Good initiative. I wish more people would reply to the polls in our forum too

"Are there times of the day when the POIS symptoms are worse than others?" <- needs a "I don't know" response too.

Danmh

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Re: A New Survey
« Reply #4 on: January 09, 2022, 11:14:03 AM »
Hi Danny

Many thanks for that. Could you spell out that suggested option again please? It is showing as wingdings for me.

MW

Of course, the suggested option is - No -

D

Magicwand

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Re: A New Survey
« Reply #5 on: January 10, 2022, 04:36:13 AM »
I've added the option "Unsure".  People are free to edit their responses once they have had an opportunity to consider the questions more fully.

Magicwand

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Re: A New Survey
« Reply #6 on: January 10, 2022, 04:44:59 AM »
Hi Danny, I've added the relevant option. Feel free to edit your responses in light of that if you would like.
MW

Magicwand

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Re: A New Survey
« Reply #7 on: January 11, 2022, 07:14:09 AM »
There have been 6 responses so far. Does anyone know of a good way to promote this survey amongst forum users? 

berlin1984

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Re: A New Survey
« Reply #8 on: January 11, 2022, 12:14:05 PM »
Someone could cross-post it to Reddit.

Journey

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Hakira117

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Re: A New Survey
« Reply #10 on: January 13, 2022, 05:31:49 AM »
I took the survey I hope it may help.

I'm suffering from pois for 4/5 year now and very recently (like 9 days ago) I tried to take 10 mg of Zyrtec + eating antistaminic food and dodging high histaminique food + also drinking twice a day macha tea(I'm not sure this one is really helping).

And for the first time since I have pois, my pois only last 1 days and it was 80% less powerfull then usual. I really feel a difference and I will come back in few week to tell the evolution.

Taking shower and eating some kind of food like brocoli trigger my pois. Also doing sports during my pois will make it worst.

Just sharing, maybe it will help some one and thanks Happy4, because of you I tried the Zyrtec! I hope other people can get better with it as well(I know that it's only worthing on certain kind of peoples unfortunatly).

I fought very hard, try a lot of stuff and went to a lot of doctors and never I found something wich was helping even a little bit...
I know that you may feel that it's hopeless and that you will never be healed from this desease but keep fighting! There is probably something that you didn't try yet who is waiting for you.


BoneBroth

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Re: A New Survey
« Reply #11 on: January 13, 2022, 07:00:44 AM »
Very good initiative! I've also took the test. A problem with this kind of test arrangement is that it clumps all symptoms together and the result will be a static picture with a few common symptoms that most POIS'ers share and then a long tail with other symptoms that spreads out among many POIS'ers. The few common symptoms are not big news for anyone that reads up on POIS, and gives some important clues. The long tail might be confusing when gathering the data this way, but if the survey had taken into consideration the history of each symptom it could give even more clues.

For example, diabetics share a few common symptoms that comes first (increased urination etcetera), but over time new symptoms will add up like issues with your vision and blood circulation. Its still the same disease though.

For me POIS began with the classic symptoms like head ache and flue like symptoms but after decades I got itchy skin, dry eyes and cold hands. Its the same cause, but the effects on the body changes during the years when each organs treashold is passed. Each organ, when weakened, gives its own symptoms on the body - the pitutary / thyroid gives temperature issues, the kidney gives lower blood pressure and symptoms of long term cortisol excess etcetera.

The long term development of POIS might follow a common path for all POIS'ers. So it would be nice to see a survey where you can pin point each symptoms at a timescale.
« Last Edit: January 14, 2022, 05:41:31 AM by BoneBroth »

Magicwand

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Re: A New Survey
« Reply #12 on: January 14, 2022, 05:14:19 AM »
Dear Journey,

Many thanks for the cross-post to Reddit. The number of responses to the survey has shot up to 43 now. 

MW

Magicwand

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Re: A New Survey
« Reply #13 on: January 14, 2022, 05:35:22 AM »
Dear BoneBroth

Thank you kindly for the feedback and thoughts on the new survey.  You're right with regard to the symptoms profile.  It is probably the case that the core set of symptoms will reveal themselves in an unsurprising manner, as so many people on this forum have reported them.  That said, there is to date, no quantitative, empirical data on the prevalence and commonality of these symptoms, and this survey goes one step towards getting that data.  It is important to note that this is an anonymous one-shot survey, and so it won't be able to reveals clues about the progression of an illness.  Only through matched longitudinal studies can such information reveal itself (matched referring to the ability to match data from the same individuals over multiple occasions).

Your points regarding the longtail of symptoms is also probably correct. POIS is an exhausting and debilitating condition, and over a lifetime it undoubtedly must take its toll on other organs and features of the human body -- most likely as a result of the stress it imposes upon sufferers. Stress can have varied and multi-faceted effects on a person.  But these longtails symptoms, should not detract from the core symptoms, and that will show up un the data.

But let's not forget that symptoms alone do not define the condition entirely. Clues as to its aetiology can be gleaned from how they play out over the course of an attack, or over the course of a 24-hour cycle and how they interact and are affected by circumstances and environmental factors. One thing I noted with my own condition is that there are definitely times of the day and circumstances when it is worse than others, and that only bore out when I began a concerted effort to try to identify those conditions.

I am hoping that by surveying characteristics of the "behaviour" of this condition, it will reveals itself further and help yield clues as to the cause.

MW

BoneBroth

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Re: A New Survey
« Reply #14 on: January 14, 2022, 06:11:00 AM »
Thanks for your reply Magicwand!

There might also be a possibility that the POIS symptom tail is not exponential declining but more even distributed for indivuduals with long term POIS. We should have in mind the fact that some people manage to control or eliminate some symptoms (with nutritional/dietary/medical/stress management measures) while other symptoms remain, which gives a "false" aetiology. New symptoms might arrive and last as long as the initial symptoms or even replace them. These new symptoms might not be related to the of POIS core, but to a a long term side effects. This put weight on, not only the age distribution of participants (which you already have in the survey), but also each individuals time course of symptoms as POIS can start at any age. Also the possibility to specify what symptoms you are are able to manage / got rid of.

Just an example. When I first got POIS I had a tremendous tension head ache, horrible acne and stronger hot flashes. After some years, and probably with adjustments to the nutrient intake (Vitamin C) the tension head ache is gone and the other symptoms is not that troublesome. I would have a tendency to not report this in a survey that ask for my present condition. I have muscle pain now. I didnt have that the first years etcetera.

Just some toughts! Good luck with your initiative!

berlin1984

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Re: A New Survey
« Reply #15 on: January 14, 2022, 03:12:28 PM »

Magicwand

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Re: A New Survey
« Reply #16 on: February 19, 2022, 05:14:48 PM »
I have 58 responses to the POIS Survey, which is positive but slightly underwhelming given that I had the impression that there could be over 2500 sufferers out there, based on the emails I've seen over the years on the POIS forum. Does anyone have any accurate numbers for the estimated population of sufferers or any ideas why this research has attracted so few responses?

Aladin

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Re: A New Survey
« Reply #17 on: February 26, 2022, 03:51:40 AM »
Done