I think Muon is not the only person here who has expressed mistrust in the way the research process is being conducted and in the possibility of obtaining any positive result from this study. And I'm glad to see the numbers are growing. It wasn't enough to let the money go to a study conducted by a psychologist, now the process has to be obscure and confidential too. As far as I know, the funders are the people here, not only the moderators, so, actually, the funders have very little information as to how the process is going and what exactly they are waiting for. All we get is flashy posts about NORD news and podcasts.
But of course, the answer to the very legitimate demand for transparency is to try and publicly shame a forum member. How nice and democratic.
I'm glad I wasn't here when the funding was happening, as I would have donated and would now be deeply regretting having contributed to this particular study. Let's hope we can at least express our opinions here without being censored, right? Since forum members who are literally calling us neurotic and anxious and saying that all we need to do is visit a psychiatrist and read poetry are perfectly allowed to express their wonderful opinions of all of us.
Personally, I can't be more disappointed in this forum, it isn't physically possible. And yes, great things have been done, I'm very grateful to many people here for their ideas and support, I think and it's wonderful that this place exists. But that's not what I'm talking about. Just wanted to state it.
I think many members seem to have forgotten that it is NORD , the National Organization for Rare Disorders, that is responsible for the legal and scientific supervision of this study.
Many years ago, it had been chosen that poiscenter would go for a credible organization, in order to end up with a credible scientific study, not a low-level quality study that no researchers and no MD will read. There are many parameters to be considered for real, professional supervision of all the steps in the study: submitting the study projects, choosing the best project, then accepting the study design, revising the ethical aspects of the study, the financial aspect, and so on. You need a fine Board of Supervisors for this, and NORD has it.
When you say that "I think Muon is not the only person here who has expressed mistrust in the way the research process is being conducted and in the possibility of obtaining any positive result from this study", you are clearly expressing that you do not think NORD is a trustworthy organization, and that they cannot supervise correctly a scientific study, and that they may not have chosen a competent research team, and they may not be doing a vigilant follow-up on the study.
Now, I would like to remind everyone that, the way it works, NORD is responsible for what happens with the funds and the study, and the only information the funders will receive are, first, what research team will be awarded the grant, a brief description of the study, and then, the Interim Reports that we receive after some milestones have been attained in the study, once it is started. I think we will receive the article and complete results when they will be published. Apart from this, NORD is not accountable to us, but, however, they do all they can to keep us informed, even if they have much on their plate (helping over 300 rare disorders associations like ours). This supposed right for the "funders" you are referring to, to receive more explanations from NORD, simply does not exist. However, Demo , for years, has done everything in his power and used all of his (excellent) PR abilities to extract information from NORD, and every little bit he gets, he shares it on the forum.
So, this discourse about expressing "mistrust in the way the research process is being conducted" and lack of transparency does not make sense at all, from my point of view. NORD's Medical Advisory Committee is made up of experts who work voluntarily! (
https://rarediseases.org/for-clinicians-and-researchers/research-opportunities/research-grant-program/ ), and NORD has limited staff and still helps over 300 groups like ours.. We should thank them for their generosity, not complaining about not being updated as often as we would like to. Asking for more from NORD staff is just not appropriate, let us just be grateful for all the help we get from them.
Also, still in line with your disappointment about NORD, could you explain, please, what you would suggest as an alternative for a professional and recognized organization to supervise a POIS study that you would organize along with all those who are disappointed with what is going on with the study on poiscenter? You could organize a few Zoom think-tanks with all those who are dissatisfied with NORD tenure and poiscenter. You say they are growing in number and that you are happy with it, so you will get all the help you need for this rather demanding task. For my part, I will be happy to read your detailed strategy and your project plans. Don't forget to take into consideration that you need to have the money to pay the supervising organization in order to do a professional job and lead to a valid research publication. This cannot be done by a group of laypeople, but need highly qualified persons. Of course, It will be quite hard to beat NORD's price, since their Medical Advisory Committee is made of volunteers experts...
I would also like to remind everybody that POIS research is in an embryonic state, at this point in history. For now, just to have a research team being interested in going ahead with a real POIS study is to be valued in itself. We have to start somewhere, and not all researchers are willing to take the risk of finding absolutely nothing! Researchers all think about their career plan and their professional evolution, you know - they do not want to be associated with a project that goes nowhere and have no clue, they want a breakthrough and hope for recognition. So, for now, we should be grateful to have a team willing to really help us and make things move ahead. The other teams wait and see, they want to have some solid evidence, some gained knowledge, before diving in the pool.
And, please, to everyone, I would like you to realize that a first study will not be enough to heal everyone's POIS, be realistic. We may get very good leads about the main types of POIS and what causes them, and possible investigational treatments. Maybe this will be enough for certain members to find major relief for their symptoms. But please, don't set your expectations too high, for a first real POIS study.
I would also like to refer all those who are deeply disappointed to read my account of what has been done so far by poiscenter.com about research:
https://poiscenter.com/forums/index.php?topic=3781.msg40119#msg40119 . This will give you a better perspective and how it really works.
Personally, I cannot recall how many emails I have written, in the last 8 years, to so many research teams and doctors who have written scientific papers about POIS, in order to build connexion and foster new POIS projects. It has sometimes produced interesting results, like the 2019 POIS survey, and in 2021, Dr. Nathan's experiment, and some interactions with a new POIS Panel made of many specialists and doctors.
We all were very disappointed that a troubled subject ( who we don't know the identity) made us lose 3 years because of an undue complaint that ended up in a lengthy investigation, and finally, the cancellation of the Rutgers study. And again, we are all very upset and downhearted by this new delay created by the COVID pandemic, that made us lose another year. at the least. We have to be resilient and have to be patient. And the meantime, try to find at least some personal method to lower your symptoms and mitigate the negative effects of POIS in your life. In other words, brace yourself and be ready for a rather long wait before modern medical science brings you a solution.
