Is there anything we can do to help with the research and move this forward?

I’ve done the survey and I’m a broke student so can’t really donate but is there anything else we can be doing? I feel like I’m at the end of the line here with no desire to keep living. I need a goal to work towards.
Is there anything we can do to push this research forward?

I’ve written about this before but the gist is that we as a community will not manage to fund the research ourselves, unless Justin Bieber, Elon Musk or someone else decides to fund it. We need government funding.

When I joined up here, I thought the focus on research was an indicator of progress being made. It is not. It’s a distraction from the reality that we can’t solve this on our own. Not with donations, not with health foods and diets.

People think that research is coming.

It won’t come until this is documented as a problem.

The things you can do fortunately don’t cost anything.

You can make sure your doctor knows.

Report your condition to your country’s health department (in the UK it’s the yellow card scheme).

Write an email to your Mp/representative saying that your health problems are being ignored.

Tell your parents, or your family, or a close friend.

Make a short video for us. Take part in a video podcast.

We know we get thousands of visits to this site, far, far, far in excess of the number of people who post.

But, this problem will not gain traction if people who are affected won’t tell anyone.

This problem will not have a cure funded by people kicking in $€£10 a month.

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What is the end goal?

A pill that will bring back libido?

First goal is to be acknowledged to exist.

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End goal is therapy that works. First step is getting recognized. Once we exist in the eyes of scientists and grant administrators medical research can leap forward. Until that happens, all of our lives will be tragedies.

We haven’t achieved anything in 15 years. It’s time to start. Bro science and googling herbs, pills, and injections has been a total failure that has caused untold suffering and loss of life.

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@JustTrynaMakeIt I’d encourage you to read this thread I created last month: PFS Research in 2021: PFSNetwork fundraising for research projects with the PFSFoundation in Summer

There is much to be excited about for 2021, and we’re working incredibly hard to secure research opportunities at this very moment. We can’t always share progress publicly, but please, hold on.

While we work privately to secure promising opportunities, there are many small but courageous steps patients can take. @Greek is right, that awareness and advocacy are often overlooked by this community, and the expectation is that research can occur without them. While research is always our number one goal, the importance of building awareness and acceptance of our condition cannot be overlooked.

For example, to be able to share the pfsnetwork.org website with researchers to provide a clear, concise understanding of our condition via the explainer video, and demonstrate the devastating human toll via the patient stories video, has been hugely successful. No longer do we need to send numerous documents, medical literature, and written patient stories - this resource does all the work for us.

I will soon begin our PFS Network video podcast, and 3 new patients have stepped up to appear. We also have 3 family members and a clinician scheduled in. Again, any patients who are interested are encouraged to reach out privately. We also announced our Family Advocacy Group, which I’m heartened to share we have almost 10 volunteers for, who will contribute to our awareness and advocacy projects.

Speaking publicly and sharing our condition with family and friends is an extremely difficult action to take and we are all burdened with the stigma of this disease. But speaking from personal experience, the response from my personal network, including friends, work colleagues and family has been overwhelmingly positive.

Currently, we are thousands of anonymous usernames, easy to dismiss. When we speak out loudly and publicly, the devastating impact of this disease becomes undeniable, and we begin to make real progress.

Some food for thought.

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My PFS doctor attends a conference on neurosteroids every year (this year virtually of course) and he said that there is a medicine coming down the pike that he would prescribe to his PFS patients.

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Interesting

What’s the doctors name ? Can you give that out

Hats off to him who ever he is for recognizing the problem and at least wanting to do something about it

Not sure what he has in mind exactly if he’s thinking we are just low in certain neurosteriods. Melchangi’s study found low Allopregnanolone and 3a-diol in the CNS of the PFS group in his study .

But we have myself with high range Allopregnanolone in my urine, two other guys who a user on this forum is aware of who allegedly have high Allopregnanolone in their urine and the user thisisrealbummer who posted a recovery thread on this forum who also said he had high Allopregnanolone in his urine.

So I think that it’s important for any doctor who’s looking into neurosteriods in PFS patients to be aware of this.

In my opinion our bodies can’t be producing low amounts of something that is found in high amounts in our urine even if it’s found in low amounts in our CNS. Two more guys on this forum are getting their urine Allopregnanolone and 3a-diol tested so I’m looking forward to those results and I’m keeping my fingers crossed that this pattern amongst us will continue to grow

I’m also hoping that we can get the data for the two other people who tested high in Allopregnanolone in their urine that another user is aware of . Having all the data organized in one thread is a must

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There is no reliable FDA approved urine test for allopregnanolone, this sounds like something some renegade lab invented to make money. The amount of anything in the urine is not necessarily going to tell you anything useful. Allo is in the human brain so what would urine have to do with it? Sounds like a scam, a waste of money. Just because something may be present in the urine or blood or whatever may not tell us anything. Case in point–many men with PFS and similar disorders have blood levels of hormones within normal range, some do not. Fin knocks out the enzyme while it is being taken, but DHT level post-fin may be normal. So we have to focus not on samples of this or that fluid. Instead we have to understand the FUNCTION that may be damaged or changed. And that is where the androgen receptor or retinoid receptor theories come in. Allo in the form of a pill may help us, but maybe not. We may have “normal allo” in our present body, but the function of the brain (based on allo that may have been knocked out when we took fin) has been changed or damaged.

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You claim that “There is no reliable FDA approved urine test for allopregnanolone, this sounds like something some renegade lab invented to make money”

Rebuttal directly from ZRT labs website:

“We invite collaborations with clinicians involved in research, including partnerships in clinical trials that require a CLIA-certified testing laboratory for analyses. We provide sample collection materials for serum, saliva, dried blood spot, or dried urine samples. Research samples are tested at ZRT by state-of-the art methodology, including FDA-approved immunoassays, enzymatic assays, inductively-coupled plasma mass spectrometry (ICP-MS), gas chromatography tandem mass spectrometry (GC-MS/MS), and liquid chromatography tandem mass spectrometry (LC-MS/MS)”

So that debunks your claim that the results are not reliable.

You say that “The amount of anything in the urine is not necessarily going to tell you anything useful. Allo is in the human brain so what would urine have to do with it? Sounds like a scam, a waste of money”

Rebuttal:

The reason why I am looking into the amount of Allopregnanolone in the urine is because it’s giving us an idea as to how much the body is still producing. Progesterone to 5aDHP via 5AR enzyme and 5aDHP to Allopregnanolone via 3aHSD enzyme. That’s how it’s produced. Allopregnanolone is found in the brain and they are only beginning to understand what it does in the brain. It’s known to act as an allosteric positive modulator of the GABA receptors in the brain. Melchangi’s study found very low amounts of Allopregnanolone and 3a-diol in the spinal fluid of PFS patients in his study from 2013. I’ll post the whole study if you want to read it. The point is though if Allopregnanolone and 3a-diol are high in our urine it means that it’s still being produced from 5a-DHP. So if it’s still being produced in the hormonal cascade (evidenced by high amounts of it in our urine) this suggests that we are not responding to it the right way in the brain. For anyone who thinks they have Issues with GABA like my self and others this is especially relevant

Yes you are correct that I don’t know what my Allopregnanolone and 3a-diol levels are in my brain. But if I have high amounts of it in my urine I’m probably not going to try to increase it with your Allopregnanolone pill. In fact I did try increasing it by taking 5a-DHP as did others and it did not help us. If I was really not producing any it would make sense that increasing it would help me. But it didn’t and seeing highish Allopregnanolone in my urine years into PFS kinda makes me understand why it did not help me. Because I’m already producing it. Now I ask my self why am I not responding to it ? If tons of other PFS patients have high amounts of it in their urine maybe it means our GABA receptors are not responding to it properly. Google positive allosteric modulator of the GABA receptors and read about it. You can also read about negative allosteric modulator of the GABA receptors.

Ugh, I’ve talked to two doctors about it (one just ignored me, the other just laughed and says yeah but it goes away) and I’ve submitted a form to the FDA about my experience as well as completed the survey.

Your comment was really disappointing…I realize it’s the truth, but that research was kinda keeping me going to be honest.

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Sincerely I am sorry to be the bearer of bad news.

If it helps, I am much better off than I was when I signed up here on every front and though people talk about milestones of 3 months or a year or whatever else, I saw improvements after that time. I also am aware of people saying they got better much after I did.

Though it may seem disheartening, the truth is that we are finally getting our ducks in a line. Expect a research announcement from the staff here this year. It’s imperative that we get on board with reality, that is where hope begins. We’re on our way to making real progress, making science fact, not fairy stories and con tricks.

This is actually really positive. Hold tight, say something if you need help and don’t be a stranger. We are all on your side and we will get somewhere as long as we all work together and we all play our part.

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Research needs funding?

Yes, research does need funding, but the amounts are large. Unless you can contribute significantly, the best thing you can do at this time is to contribute to our awareness programmes. Tell your friends and family what happened to you. Make a video for us. Take part in a podcast.

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Take part in THE podcast :wink:

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What about charitable nfts

Yes, starting a business with everyone’s help to raise capital and then using a portion of the profits from the business to carry out independent research. If a 1000 people chipped in £100 thats £100,000 which is more than enough to start up an E-commerce website and brand with an annual income and just keep investing to build up a strong financial portfolio.

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I did a major google search and the only lab that does such a test is the one you mentioned and pasted here. If these tests were approved and usual and standard of practice, labs like Quest and LabCorp would be doing them.
Just something can be found in a bodily fluid does not mean much in and of itself.
I know you want hope and possibities and are eager, but think about it: why would our kidneys excrete some biochemical we need? Makes no sense. The kidneys absorb and reuse some substances. The kidneys excrete waste products from the blood. You need to study Nephrology 101 and what they kidneys do and not do before you make some kind of belief in whatever that crazy lab is saying they do.

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Well if we keep seeing a pattern of high Allopregnanolone in the urine in PFS patients it obviously means we are excreting more of it then non PFS patients. I know how the kidneys are excreting things. That’s the point of what I’m theorizing…

Like you said if we need it why would our kidneys be excreting it in higher amounts compared to non PFS patients. My theory is that our bodies are struggling with “knowing” how much of each metabolite we need so it’s dumping higher then normal amounts. Now before you go nuts and say blah blah blah how do we know this just relax. We would need several of us tested to see how far this pattern goes.

What I’m getting at is that I think my body can’t regular neurotransmitters properly. It’s obvious too me based on my experimentation. So maybe our kidneys are excreting higher amounts of Allopregnanolone and 3a-diol and maybe that’s why Melchangi found low amounts of both in the CNS of PFS patients

Think about it. Body does not want Allopregnanolone and 3a-diol hitting GABA receptors in CNS it gets rid of it. Pretty straight forward theory actually . Your point about how body gets rid of it is moot and elementary so go read more Nephrology 101

LOL ZRT lab has the same credentials as lab Corp and quest . Already had this discussion with another know it all . And no lab Corp and quest cannot currently do dried urine steroids metabolite testing. They are not research labs. They are diagnostic labs for primary care physicians. LOL go see if your primary care physician can help you with PFS. Maybe they will order some basic hormone testing through quest or lab Corp and tell you that you are ok. They are diagnostic labs . If you don’t want to help me explore this theory take it somewhere else. I’m not impressed.