1, 2. You: “ask yourselves” we:“what about A, B, C” you: “No”. we: “how is it looking forward according to you, then?” you “same same in 5 years from now, donations.” Q: what are we talking about here, then, if admins are content with this pace and not willing to improve nor suggest?
or 3. as a follow up of dialogue above: You: “why dont you do anything?”. (P.S. many here cant even help themselves). Either way, again: what are we talking about here on this post?
Even with the (apparently comfortable, or unwilling to be changed) low budget, it does not prevent the plan from having milestones, especially “if the technology is already out there for some time now”, so the question stands: with this setup from those running this initiative, how is the future looking ahead, from the characterization of the condition to its cure “in the horizon”, and for what costs?
When it comes to this final milestone (the cure), how do the leaders of this initiative think to act, given they will be directly responsible for it, and how would it be made available to those that contributed (indirectly responsible) vs. those that did not contribute? I.e. once we get to this stage, how will the “treasures of war” be splitted?
I recently posted that the PFS Foundation research tab has no entries on it and requested that this site admin try to explain to us what is going on. No replies, only a few minor comments. I’m more than willing to donate and have donated in the thousands, but will not donate again unless there is more openness from the foundation or the group admins as to what we are donating for. Yes I agree we are on our own and no on is going to save us. After all these years I don’t think that’s a big surprise to anyone. Our only hope is science but not seeing much going on in that area other than a few folks in Italy.
The problem with “what about A, B, C” is that plenty of people are willing to contribute abstract ideas, without really providing evidence to support the idea itself. And on top of that, they want to do it with someone else’s money/resources.
Example:
“We should get someone with PFS on Joe Rogan’s podcast” This is not a bad idea. Of course this could be beneficial in terms of raising awareness. But are you going to do it? If so, how?
“We should give a rat PFS and try different treatments on it” This is a terrible idea. We don’t have a rat model of PFS, and people with a good understanding of the science have explained that as a result, this isn’t viable.
Come up with better ideas, and if they’re viable, why wouldn’t we consider them?
In my opinion the community needs a highly scientifically literate official Community Organizer. He/she would need to be paid. I have proposed above one possible approach to doing that, to possibly get the juices flowing. Would be great to hear if other people like that idea and in the case that they do what ideas they might have for arranging the necessary financial support.
Well, I feel like this is starting to get to be an argument, I’m happy to talk this over here but let’s try and keep it friendly and look for solutions, not new ways to disagree with one another. If I’ve got that wrong, I’m sorry already. I’m not a trained mediator, I’m just trying my best to have a friendly conversation.
I’m not sure I know what A,B and C are, but I don’t feel like there’s a burning need to discuss them and get them out in front of the community right now. I’m no stopping you either. I’m hoping more that we can get the consensus that we need to change things.
The one thing that I think is really important is that people become invested in being part of the change, that means to give of themselves. As I said in my first post on this topic and also today, the ideal is that people think about what they can do, not what someone else can do.
Well, firstly, a couple of times in this topic I’ve been told that I’m telling people to make donations. I’ll say again that I haven’t been telling people to make donations. I have said that the community donates a tiny part of the foundation’s funding, but that wasn’t a call to donate more. It was an explanation of the situation, that if you think the foundation is being funded well at this point, this is not the case.
As for my vision for the next five years, my point is that unless things change, or we have some chance breakthrough or stroke of luck, then yes, I think there’s no real reason to believe that the next five years will be significantly different to the past five years.
I don’t think the admins have the power to transform the entire community. They’re brilliant people but I think the community needs to come together and push in the same direction. I also think you underestimate how much effort it has taken to get this community to the point we’re at now. The work that the admins have done is remarkable.
This whole topic is about reality, not about arguing, not about accusing. If you’ve got nothing to give, fine, but be aware that nobody else is either at the moment. To be clear, I’m not talking about money, I’m talking about a willingness to take part and contribute to your own future.
Well, I think you’re confusing the forum with the foundation. The forum is a privately funded - that is to say paid for by the admins, not donations nothing else. The forum receives no money from anywhere.
As for milestones, I think you’re getting ahead of yourself, we have a community who broadly seem intent on repeating the experiments of the past, and shouting at anyone (me) who suggests it isn’t working. Until we can get to the point where people acknowledge that method isn’t working and that they will work towards a better plan, its my opinion there’s not much point in unveiling any great plans, because I think people will applaud and then go back to putting their efforts into the same missteps of the past 15 years.
Well, I don’t think any treatment that would be developed would be owned by anyone here. I don’t see how that would work. If you’re talking about a financial consideration, I said right at the beginning that the forum membership probably can’t afford to pay for the research and development of a treatment, it is one of the key reasons that I made this topic. We need to find a different way to get to where we need to be.
a) Build a professional international patient-organised PAS, PSSD, PFS organisation.
b) Build an army of patient volunteers to help that organisation
c) Build and continute to expand a science network
d) Increase awareness by regulary publishing patient stories, intiating public campains (aka ALS ice bucket challenge), speaking out publicly on TV, radio, podcasts, youtube, journals, making docus, Twitter, Facebook, using the 10k/month Google ad grant for non-profits…
d) Build a strong network of healthy volunteers (family & friends)
e) Organising professional fundraising campaigns
f) Builing a research consortium that is ready to apply for public grant opporunities and also screen weekly for new grants
g) Organising clinician symposia to classify PAS, PFS, PSSD so that it can be taken into the specialisation associations of the doctors and from there to the Internationl Classification of Disease (ICD11) -> achieve recognition
h) Getting recognised by NIH, orphanet, GARD etc. as rare disease and apply for the millions of dollars that are granted for rare diseases
i) Start a movement like the ice bucket challenge who got 115 milion dollars for rare diseases in a single year
j) Build a patient registry (no-brainer for every serious disease research) to collect more data, longitudinal data, with control groups to see the frequency of the disease and to have both patient and control easily to recruit + the possibility to receive cleaner data for studies
k) Move the patients online to Twitter/Medium similar to what ME/CFS action did
l) Build political pressure for funding (way easier if the 3 diseases join)
m) Build an scientific advisory board that proposes study directions
n) eventually build a charitable company (not sure how it works in the US, but in many other countries charitable organisations are not allowed to sell anything, which reduces the opportunities)
o)…
Well, I think the points of joining forces, organising ourselves well and increasing awareness as well as fundraising efforts for a professional organisation, are the most important ones to me.
Those are all things that need to be done, but the key is how we get them done. We need to figure out how we coordinate and get everyone working on these things.
Which brings us back to “what am I doing” (not you specifically), because unfortunately the list above is another “someone should do this”, not a “I have done this” list.
NomisB’s list was very helpful. I see something on there that I think may be achievable but I have to feel around to see if its possible. An idea or avenue to check came to me in a random podcast last night I was listening to.
I think VKG1’s frustrating comes from the fact that he feels there is nothing happening. That isn’t true. I have been involved in a lot of things but haven’t publicized on the forum for a few reasons. I would prefer not to be traceable. I don’t want other PFS community members to interfere with my work as they have sometimes done in the past. I don’t want to operate under any pressure from the community to have certain expectations if it takes a long time (these things have taken years) or if they fail (they sometimes do). For this reason, I won’t be disclosing which one I am pursuing publicly, but I chose what seemed to be the most impactful with the least amount of work.
So what I would say to VKG1 is these brainstorming sessions obviously do help and people are working on things privately, out of necessity. But if you do feel so frustrating that not enough is going on, I strongly recommend you just write-off the possibility of a cure and do whatever you need to in order to make the best of what you’ve got. I did this years ago and moved on with my life and my life has improved with still a lot of turbulence but I have a much more positive outlook on life. Keeping your expectations as low as possible is a good rule to improve your quality of life. And as I’ve said a million times, don’t let what you can’t control affect your emotions but use them to guide you to a better life. None of this is our fault, but it is our responsibility to make the best of it.
I think “I have done this” posts could be encouraged by there being a plan that people coordinate around. The forum doesn’t need to be just a hundred guys sitting around popping pills and rehashing broscience while waiting for someone else to do all the work. There needs to be some kind of leader who breaks things down into tasks, in my opinion. Then people could coalesce around the tasks. That’s my notion, in any event. I recognize I could be accused here of talking instead of doing, but I did make one plan above that I hoped might stimulate discussion or thoughts from others. I’m afraid I don’t have the social capital or expertise to dictate a plan that others would follow just on my own. Nor do I think my doing much more than I already have in contacting members of other communities on my own will get us far.
Speaking at least for what I have personally worked on, most of it is necessarily on my own or involves a small group of people. Besides grassroots projects like the video project or some other stuff, most projects are more suited to being conducted in small groups because it makes it easier to delegate and coordinate. People who want to lead on something will proactively take responsibility and do what they need to do. There isn’t really a shortage of “manpower” for most things, it seems to be financial resources, social capital, know how, and huge element of timing.
Thank you for everything you’ve done if you feel you have contributed what you can. The best thing you can do at this point is take care of yourself as best you can at that point is live the best life you possibly can. And hopefully one day something will come up where you can contribute to something else.
I think something just needs to be found that can be put on paper so to speak. A common denominator as one thread was titled. A biomarker. Something real.
This doesnt have to take a big group or alot of funds, it can come from one individual.
Hitting on something.
There has been an obsession here for a very long time revolving around the thought of one gene, the Androgen Receptor, that I think has held everything back for a very long time.
You need to break this cycle and look at everything on a collective basis.
Great discussion, I like this a lot. Just an idea: maybe we as average community members should try to especially focus on non-scientific things, since we’re more qualified for non-scientific work. So for example, general advocacy for recognition and public education. It seems to me that we should never be waiting for anything. There are so many parallel tasks and all we have to do ourselves is focus on the ones within our skill sets. Getting to a cure will not be a serial process. A major one is simply getting the word out. Maybe we could start with focusing on getting a good quality video out. Every journey starts with one step.
Recognition and public education/awareness are key. I’ve banged the drum in this from the get go. We all have major frustrations around this which is why were stuck in this dark room. Family and friends don’t even buy into it because it’s an unknown and invisible to a degree. Although this is man made the likes of cancer, Parkinson’s, ME sufferers will have suffered similar social treatment prior to disease recognition… I’m waiting on s call from a national journalist he said he’d call me this week. The you tube project is great but I still believe the media is a major player in getting this out there. We have scientific papers to back us up. Again as said before once Merck are publicly outed/shamed we’d get help/support/funding.
For PFS to be more recognized, something needs to be found. @Tzinkman was so sick it sounded like he could barely function and was checked into a hospital.
Did they even find anything wrong with him?
You need to be able to show people first that you are sick because they are not seeing it. The “why” would come after that, then the drug connection, then the awareness, then the lawsuits.
On a side note, people with androgen insensitivity syndrome are not checking themselves into hospitals.
To me its highly unlikely this disease is all mediated by the AR gene.
Let me play Dr.
“Education and awareness on what? As far as we can tell nothing is wrong with you.”
Do you have ideas on what that third or fourth option may be? Very open to doing what it takes, but I confess I need some direction other than “wait for this new piece of research”
If you guys have ideas, then perhaps you could present them? Then we could collectively come up with tasks and work through them. If you don’t think presenting them to the whole forum at one time is a good idea (which it doesn’t seem to be based on this thread) perhaps you could make a general call for those who wish to be more time-invested in pushing this forward, those people could volunteer (I would be willing) and among that “board” for pfs some real progress could be made. We could have biweekly meetings to discuss what needs to be done to push everything forward.
It seems like the main things that need to be done now are 1. increase visibility, 2. fundraise and 3. decide direction of research, correct?
We have some brave souls who have gone on the podcasts/videos- can we all contact newspapers/media outlets and see if we can make a bigger story?
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