lately I was thinking a lot about a project idea called “Scientists united behind PAS, PFS and PSSD”.
To solve our diseases we need research. For research we need money and scientists.
One of the necessary things to increase possible research funding is to increase awareness.
Problem with awareness is that patients are afraid to speak out. There are many reasons why nobody speaks out, but one is that the disease is not recognized and that people speaking to their doctors or families get attacked with disbelief.
I looked into several topics that dealt with similar challenges. Climate change is such a thing. 3 years back many people - even scientists - were denying climate change publicly. People pointing towards the problem got ridiculed and attacked although the scientific evidence spoke for them.
Now, 3 years later, this has completely changed: climate change is widely accepted as the most pressing problem of our time, now the denialists are the ones being attacked. Funding opportunities for research and organizations that come up with solutions to climate change are flourishing.
How was this fast change possible in such a short time?
I think Greta Thunberg and the “Fridays for Future movement” https://en.wikipedia.org/wiki/School_strike_for_climate alone would have been just a bunch of crazy activists. But then scientists steped in as “united” backing the Friday’s for future movement. https://en.wikipedia.org/wiki/Scientists_for_Future
So, here with PAS, PFS, PSSD we have a similar problem: We have a lot of denialists and most people who talk to their doctors are not been taken seriously.
We can change that.
There are more than 7 doctors and med students who suffer from PAS, PFS and PSSD. I think I have met about a total of 50 people in the community who are afflicted by the disease and have studied a scientific subject. Not a few are neuroscientists and molecular biologists.
Imagening, that these scientists instead of speaking out for themselves, would rather speak out for PAS, PFS, PSSD as a disease.
If 50 scientists united behind these diseases say that PAS, PFS and PSSD are real, it will become extremely difficult for denialists to attack or disbelieve community members when they speak out.
People can only speak out if they have a save space to do so. The majority won’t speak out if they have to expect that they might get attacked or rediculed.
Once we have 50 scientists heavily backing PAS, PFS and PSSD, it will be save for most community members to speak out. People will start telling their stories to their families, to the public and the public interest from doctors, scientists, politicians and the general crowd will increase.
Overtime this will not only lead to more doctors and family members believing, but also increase the number of scientists interested. With increasing awareness possibilities for research funding will rise.
We, as scientists could even publish an open letter or a paper to the public, doctors and politicians.
Let’s brainstorm further on this. What do you think, could a project called “scientists united behind PAS, PFS and PSSD” really increase awareness and make a change for our cause? And what could we do to make it reality?