Can we somehow bring awareness to the big mass of people about this syndrome? A lot of people still never heard of POIS.
Maybe only then more and more people will acknowledge if they are actually suffering from this or not and perhaps we can start a movement towards that direction (of mobilizing more research centers to start looking into a cure or at least a remedy).
I was browsing the nakedscientist forum and I still can't believe how much time has passed since then and still, no remedy is available for us.
I am willing to help with anything I can, I'm a 21yrs old web developer, I can help you refresh the look of the forum, or start an advertising campaign for us, I am also willing to help to fund a new research project and bring more people that would fund too.
p.s: i don't know if you got my idea and this would be good, please ignore me if you think this is stupid, i am feeling down and wanted to post something like this for a long time.
Hi Estefan, and thanks for your message.
I am very glad that you are interested in helping with the technical aspect of the forum, send me a PM and I will be happy to discuss this with you. it would be good to have someone with good expertise to help with the technical aspect
The one person who was more knowledgeable with web development and had initially created the poiscenter website ( Daveman) left a few years ago. In recent years, I have been the one who had to learn how to adjust SMF settings, how to update the SMF version, how to add a mod, etc... I also improved the registering security process - we had 500 legit members and 14 000 bots accounts when I first arrived here. Some other good changes have been made, like now, the
https://poiscenter.com/ URL lands on the forum homepage, instead of the old homepage with outdated information and broken links. Some pruning and cleansing were made on the boards as well. There will always be a place for improvements, but at least, the forum is in better shape than before.
About research funding and awareness-raising, which you both mention in your post, let me give you, and anyone else interested, some background on what had been made so far by POISCenter, because POISCenter forum has been working very hard to work on POIS awareness and POIS research
The next real step in raising awareness about POIS is a real, important study by an established medical research team, so that POIS becomes known by the medical community, and is talked of in media with new, interesting data and conclusions. In addition, a real study on POIS and POIS subjects, not just an article with one or a few case reports, or an informative review of the little that is known up to now, would place a foundation from which other research teams would follow on. So, it was obvious that funding a real study was an important goal.
POISCenter had been created for that, funding a POIS study, a real one. This journey had been a hard one, with lots of difficulties, for a small group like us, with limited resources. First, POISCenter had been created from the NSF POIS thread in order to be able to start a funding campaign for a POIS scientific study ( NSF wouldn't allow funding on its site). Many early members of the NSF are still here today.
Then, POISCenter registered POIS as a rare disorder, with NORD ( National Organization for Rare Disorders), in order to have a regulatory frame to receive research team projects, evaluate them, choose the more appropriate project, establish the ethics and else, and after, make follow-ups with the chosen team, and make sure they follow the accepted study plan. Medical research is much more regulated and complicated than you may think, and you need a qualified IRB ( Institutional Review Board), among other things, and NORD provides all the needed regulatory frame. After some years, around early 2013, the funding campaign of POISCenter had reached the needed $34,000 to go on with an RFP ( Request For Proposal) with NORD, so that scientific teams would propose study projects to NORD. A $34000 grant was offered through NORD for a POIS Study, finally!
In December 2013, finally, after reviewing the projects, NORD has chosen the Rutgers team of Dr Barry Komisaruk to undergo the POIS study funded by this very forum ( see
https://poiscenter.com/forums/index.php?topic=125.msg11040#msg11040 ) The POISCenter grant had been awarded, and everybody was happy that the long-awaited study would now begin !.... After a lot of administrative work, paperwork, handling of all the aspects of the regulations, etc...applications for being part of the Rutgers study began in September 2014 (
https://poiscenter.com/forums/index.php?topic=1478.msg13747#msg13747). Note how everything is ssssslllloooooooowwwww in official medical research.... Each little step takes many months.
On February 2015, The research team was receiving equipment and was still refining the details (
https://poiscenter.com/forums/index.php?topic=2022.msg15895#msg15895 ). And, at last, the Rutgers study began in July 2015 ( see
https://poiscenter.com/forums/index.php?topic=2089.msg16600#msg16600, Dr. Wise was part of the Rutgers team). We had a few small, interim reports ( nothing very useful, just basic information) the last one received in April 2016. But then, the 4th report did not come when supposed to, in September 2016 (
https://poiscenter.com/forums/index.php?topic=2086.0 )... something was wrong, and we had no clue of what was happening, for months.
It is only in Marsch 2017 that we learned what happened. Eight months after it had started, around April 2016, the Rutgers study had been stopped dead in its track by a complaint to the Institutional Review Board (IRB) from one of the early participants. Both the reason for the complaint and the identity of the complainant are confidential, so we did not receive this information, and never will. Poiscenter had not been informed at all of the situations before the final verdict, and the IRB asked Dr. Komisaruk for secrecy about the fact that a complaint had been made, and about the study being suspended for a ten-month investigation. Even if the IRB decided that the complaint was unfounded, Dr. Komisaruk, immediately following the IRB decision, announced that he was canceling the study and was giving back the found, because POIS sufferers have "multiple underlying issues" that he had not the qualifications to deal with...(
https://poiscenter.com/forums/index.php?topic=2449.msg20749#msg20749 ) It is hard to describe how hard this news had been on every member of POISCenter. After 6 years of hard efforts, ( yes, 6 years!), POISCenter was (almost) back to square 1, about having a POIS study being made.
But POISCenter is never to give up! After a period of absorbing the shock, we bounced back. In April 2017, a new Request for Proposal had been made through NORD, to offer again a $34000 grant for a POIS study (
https://poiscenter.com/forums/index.php?topic=2462.msg20970#msg20970 ). Then, in February 2019, NORD's Medical Advisory Committee had chosen the new research team, with Dr. Tiernay Lorenz as Principal Investigator. A fresh start. But as usual, followed a period for preparation, surveys on POIS forums, administrative work, the approbation of all the study details by the regulatory board, and so on. This leads to applications of potential study participants, in September 2020 (
https://poiscenter.com/forums/index.php?topic=3006.msg36763#msg36763 ).
But then...COVID-19 pandemic came, and the study has been postponed since... We have to be very resilient, but one day, this POIS study funded by POISCenter WILL become a reality.
From the outside, it can appear like POISCenter did not much since 2011... but I have written this historical account to show that it is not as it looks and that we are still working on it.
Hopefully, there has been great, positive news in the last year. An anonymous, generous donor from a family foundation has enhanced the NORD grant so that the research team can add all the tests they have dreamed of adding to the study! So, once the pandemic will lift and the study will be allowed to begin, we will have a great, great study going on, more in dept than originally planned.
So, patience, and patience, and patience again. But we will get there.
I hear you and everyone else when you say that you want to help in order to make things go faster. We all want it. I hope you and anyone else from the above historical account that everything possible has been made to make this POIS study reality and to raise POIS awareness in the medical community and in the public in general. But, the research world has many rules, and POIS is a rare syndrome with no financial benefit potential that would attract the big players in this huge game of medical research. So, we have to be very, very patient, we will never see the kind of money invested in diabetes or in asthma, for example. We will not even see the numerous project that ME/CFS has, we are too rare a syndrome for that. All that being said, it is normal to feel frustrated about this "rare syndrome" situation, but this is how it is.
If anyone has personal projects and initiatives, share them on the forum, and share your plans, and results. Every effort is welcome.
