I believe that the pfs foundation should have done more to raise awareness to the medical society. Its unacceptable for so many people suffering and doctors still think we are crazy.
Instead of funding prolonged studies which take years, it should have approached a more direct way. Every day counts for pfs victims who have become suicidal.
Through a network of doctors worldwide who accept that pfs exists, or some who are open minded, even if its difficult to prove, every one of us should go to them and become subjects of examination. The results would be faster than medical studies. These doctors should be paid by the foundation and by us to promote research and awareness, as they would have been able to observe the problem thoroughly. If we have gathered 100 reputable doctors working together simultaneously, we could have expected something better. If the foundation had gone this way from the start a lot of money would be saved from pfs victims who have spent thousands on stupid doctors.
Seriously, just STFU already.
I’m getting tired of users claiming the PFSF is wasting people’s time and money, and that they know what is best for the PFSF.
I’d like to see you setup a non-profit foundation and fund studies into research. Instead, you sit on the sidelines heckling, wasting your time posting nonsense threads like this… instead of taking responsibility to do everything YOU can to raise awareness yourself for the very problem you are trying to solve.
If you can’t tell, I’m getting a bit irritated with these types of nonsense posts. The PFSF exists to help find the root causes of the syndrome, which will only be accomplished through scientific research. If you are not in favor of this, not sure why you are even on this site.
Stfu? Nice mew…
I didnt say pfsf is a waste of time amd money you made that up from your mind. I said that imo it should have taken a different approach. What cant you understand? Everyday that passes is a matter of life and death for some people here and the studies are taking too long. And if we had 100 doctors exchanging information and researching at the same time, this doesnt count as scientific research?
And how can i raise awareness while i have been to 20 different doctors and they all look at me like im crazy because my hormones are in check?
The pfsf should have adopted an approach where it would appear that we are begging for help from all the medical society. Anything from anyone. We are in a state of no living, its an emergency situation, we dont have the luxury of waiting, and i know people here have waited for so long.
And next time talk with respect, its not my fault you dont understand what i am saying
Sure thing solonjk… oops, I mean “Costa”.
Go talk to the PFSF then, if you’re so sure about what they should be doing. Tell them your ideas. Maybe they’ll listen, maybe not. But just posting this drivel on a forum isn’t helping anyone.
Studies taking too long? You should be glad there are even studies happening AT ALL, and that the PFSF even exists in the first place.
Your entitled, misinformed attitude is incredulous. As if you know what is “best” for a non profit foundation setup to help PFS sufferers in the first place. Are you the founder? No? Well then, maybe when you setup your own non profit, you can call the shots at that stage. Really, who are you to dictate what the PFSF should be doing?
How about stop wasting your time complaining about nonsense, and go generate some media awareness. Get on the radio in your country. Get on TV. Contact journalists. Stage a protest. DO SOMETHING other than posting here, and maybe you can help make a difference for all of us, just like the PFSF is trying to, despite detractors like yourself.
Solojnik? What is that? Typical pfs paranoia where there is always someone else behind? Like the kgb-merck agent who owns the survivingpfs blog?
I didnt dictate anything i just stated my opinion. Is this forbidden here? And yes maybe i will send them an email to propose my thoughts. Man you got to understand i have nothing against the foundation, i just believe they should have taken more drastic measures. Tell me what you dont understand and i will try to explain it to you word by word. On this site there is a section with doctors. How difficult it is to make these doctors who have seen hundreds of pfs victims to communicate with each other and discuss treatments that worked or not on their patientss? How difficult is it to make these doctors write official reports about the condition so the medical community starts taking us seriously?
Anyway i dont want to go further with this, maybe you are right i should be grateful there is something going on with studies etc,
But i told you its life and death situation for many people, i hope everything goes fine until then
Dude we need the studies to make the mainstream medical community take us seriously.
It really is much more difficult than you think. Once we have a study or two that goes beyond a telephonic survey, we will all be in a much better position but unfortunately this will take time.
However, as far as I know, there are no doctors prescribe any treatments offering anything beyond slight improvements. Even if there was widespread recognition it wouldn’t really change much of anything.
Lets assume hypothetically that the study comes out and finds that the pfs victims suffer from mutations in the AR. How is this going to help us? There is no treatment for such conditions.
Or it comes out similar to the italian studies, saying that we have altered neurosteroid levels innour brains. Ok so what? Do we know how to treat it? No unfortunately.
I just believe that by using the knowledge of this forum, combined with 100 respectable doctors all around the world working together, we could have had a better chance. Thats just my opinion.
If you guys want to do something to raise awareness, come on the PFS podcast and tell your story.
How any of us dealing with PFS can critique the Foundation for its efforts is beyond me. Sure, we’d all like to see things move faster, but let’s remember, this is the only organized group of medical and legal professionals working on our behalf. I think it’s safe to assume the PFSF has a better understanding of the research process than many or any of us.
If someone else would like to launch another foundation as reputable as the PFSF, I’m all for it. I’d even donate.
How do you gather 100 reputable doctors whıle even ordınary doctors doesnt belıeve us?
Are you live in a utopia? We’ve already talked so many tımes about that doctors laughed at us whıle we are sufferıng thıs thıng. We are lıvıng at earth and thıngs are not goıng lıke thıs. You musst convınce them (ıts so hard) , for thıs you must gather some evıdence (whıch foundatıon are tryıng for thıs) you must pay all of them (very expensıve) you must provıde them a test lab, you must provıde a network to work wıth each others, they mustn’t be busy so they can help us. Your are talkıng about ımpossıble thıngs…
If the foundation have approached 20 doctors at first, getting them into payroll for being a medical team to research pfs, they would take us seriously amd others would follow. If we go individually to doctors its difficult to believe us of course.
I dont accuse the foundation of anything im just saying that they should push harder providing that pfs victims are desperate and nearly suicidal.
I understand you are frustrated, but have you even given any money to the foundation? You are not aware of what the foundation has tried to do so you aren’t in a position to comment.
It is highly impractical to think you can successfully approach 20 doctors to get them to do research on an orphan illness, especially when there is career risk to openly questioning one of the largest pharmaceutical businesses in the world.
No you are frustrated.
That’s real cute but it appears to be something we both have in common
Show me a pfs victim who is not frustrated and i will give you a cookie
Isn’t it possible to have both the PFS foundation (doing excellent basic research), and a second organisation helping to coordinate sympathetic doctors?
The remit of these two organisations would of course be different to keep them both efficient, but surely the combined efforts of 2 organisations would help us more in the long run.
It’s a good idea Costa, why don’t you run with it? You don’t need to change the PFS foundation in order to do it.
There is no need to set up another organisation. Do not stretch the resources too thinly. The infrastructure is already in place with the PFS Foundation. It is better just to unite around a single organisation and direct the resources to one place, rather than waste time and money on separate ones.
If the intention is gain the support of sympathetic doctors, surely the best organisation to do that is the PFS Foundation, given that it has given birth to the research. A separate organisation would not have this in its CV.
This is all about boxing clever. Mew, Awor and the PFS Foundation board do a great job already - look at what they’ve achieved. Let’s support them in their role.
This is stupid. The PFSF will CREATE sympathetic doctors because it is conducting research that is PROVING the condition. It is the ONLY approach and it will be very effective. To say otherwise is simply ignorance and impatience talking.
I just can’t see how it can be bad if someone decides to do something pro-active off their own back. Look at all the recent media attention thanks to THETIGERSHULL, or the PFSglobal podcast. Are we going to say that it would have been better if these guys had just sat at home and done nothing?
Let’s just take it as a given that the PFS foundation is awesome. Its focus is on basic research which needs to be done, but there is a big gap between the academic world and doctors on the front line in their surgeries. If someone wants to go ahead and try and spread the word among family doctors, then how can that possibly be harmful?