Sometime in the first half of 2012 I believe.
Can we get an update here, please? What was said on T.V, anything.
There is no update at moment. I don’t have a copy of the footage, but based on what was translated of the scientist who was speaking, this is the most important part:
“It’s very difficult to understand this group of symptoms and what is causing them. When we tested hormones, on the contrary of that which I would have expected, the testosterone levels were in range. However, there is a difference that is statistically significant regarding a hormonal hypothesis that we are looking at. There’s a molecular signal that reveals that these subjects [PFS sufferers] are different from normal people, and from hypogonadal individuals.”
Based on the info you have available, Mew, what sort of “molecular signal” could they be talking about? Could you give us some kind of parallel example (if you don’t know the specifics or are prevented from being explicit)? And could this be a symptomatic marker that distinguishes PFS cases? Or is it proof-positive of some permanent alteration? I know that this is preliminary stuff, so I guess I am asking for your best interpretation/speculation. Thanks.
Unfortunately I do not know the answers to your questions, nor am I at liberty to speculate at this stage. I would expect we will all have further clarity once something is published.
Yes, Prop posted this of a hairloss forum a few days ago. Very interesting indeed.
I’m obviously interested in the modular signal he speaks of but even more interested in potential treatment etc. Lets hope this is a break through.
Assuming we are no longer getting the molecular signal we did Pre-medication, or are getting an altered/unwanted molecular signal Post-medication- Does the technology/ability to alter specific molecular signals exist, in any form, with today’s medicine?
I think the only thing that could be said at this point is that whatever they have found, this research is the most important thing to this community since this whole mess began.
It’s clear now that simply going and getting blood tests, seeing an endocrinologist etc. is not going to get us anywhere. We’ve been going around in circles for years. When the time comes we all need to give awor our 100% support because this might be our only shot at serious research into this. Otherwise we’ll likely be doing trial and error treatments for the rest of our lives.
Well said.
Amen.
Although if you have the money then you should definitely do at least 1 round at the doctors. A comprehensive hormone panel including sex hormones, thyroid hormones and cortisol is the very least we should all have done. Nutritional, allergy and candida testing is also worth looking into but again it all depends on whether you have got the money.
Personally if i had the cash i would visit Goldstein or Crisler to look into hormones and someone like Emerson to do a thorough check of everything and cover the ‘alternative’ aspect. If nothing came of that i could probably say i have done my best and accept that waiting for research to progress is the only option. People’s self prescribed experiments and reporting of results on the forum is still very important too.
Any updates for this thread??? Just trying to keep the anticipation alive…
They are, unfortunately, keeping everything quite about whats going on here.
yeah its sad really. i offered myself to the study and when told i didnt meet the criteria offered to pay flight costs etc for another to go. all this secretness has certainly put me off any future funding or participation.
If you did not meet the eligibility criteria, then you did not meet the eligibility criteria. It wouldn’t matter what study it is, there are certain criteria required in order to have a correct sample size with non-confounding variables.
For example, clinical trials such as clinicaltrials.gov/ct2/show/NCT01296672?term=finasteride&rank=1
Sorry you feel miffed, but that’s the reality of any study or clinical trial, PFS-related or not.
There is no “secretness”, there really are no updates to give at this point in time. The researchers are likely still evaluating data and developing their thoughts on the matter. Details cannot be published until they are published by the authors themselves. Patience is a virtue in this regard, and I personally do not know all the details anyway.
On another note, to not want to contribute to future research because you did not meet the eligibility criteria for one particular study or because you feel you aren’t being given “the full story” at the moment will likely be to your disadvantage as a fellow sufferer, since we’re all in this boat together trying to figure out the root cause of PFS.
I appreciate there is strict criteria to meet and I unnderstand i didnt meet it - thas not the point i was trying to make, rather what would be the point in any future donations to studys if we neaver get to here of the results.
If you were open about the results whether that be detailig progress or lack of progress and i think it would encourage future donations and participations.
As mentioned previously, results should be published by the authors once they have written a paper, it has been peer-reviewed, etc.
Also as mentioned previously, I’m not aware of any additional news or updates at this time. Refer to my last few posts where I quoted what one of the scientists said on TV for the last public update.
When there is information to be released, it will be published. Until then, complaining about “lack of updates” or thinking there is a conspiracy of “secretness” isn’t going to make any difference on outcomes – scientists have their own timeline for authoring/publishing papers which they adhere to.
It’s seems very easy to understand (no offense meant) that details of an ongoing study cannot be released. Why would you ever announce preliminary finding of a study before you are ready to publish? The point isn’t to exclude any sufferers from information. Of course I do understand everyone’s frustration.
As far as participation goes- we all have a responsibility to ourselves and more importantly eachother to participate fully in each and every study for which we are eligible. We’ve all been through too much and these studies are far too hard to come by.
You are both missing my point. Those doing the study are not doing it for our benefit but rather they have financial gain or recognition, unless I’m mistake and then I apologise profusely. I would be a little pissed off if i was one of the guys who jumped on a plane and took part in the study and a great expense to be told now wait until a paper is released. Surly timescales would have been set when this paper will be written, is it this year, next year, when? One would assume the scientists want participants and much as we want to partake. I check this thread daily i hope of some news and find it a little frustrating that’s all. And given the need for future involvement of members here a bit more communication would go a long way especially given a number of members including myself are on the verge of ending our miserable lives and its this very study that keeps us going.
We really do not know motives entirely and it’s hard to come to those conclusions from a few posts on an internet thread. Yes, I’m sure they are doing it at least to some degree for some sort of financial benefit and/or recognition. I suppose you could argue the two go hand in hand. But that’s how things get accomplished. It’s really our main goal at the moment to make the case to these institutions that those benefits exist.
I am sorry to be so direct on Christmas annon, but you are truly a bloody idiot! I am one of the main drivers of this study and have invested in every sense. I don’t see any chance whatsoever that I will ever get any return on this besides the small hope, that our better understanding of this problem may someday help us get cured. Since I don’t live in the US, I probably won’t even ever see any money out of a potential law suit either. The other person, who has invested even more than I have, has exactly the same motives.
The sad fact behind science is, that it moves slowly, especially if you don’t have millions to throw at the problem. But rest assured, the brave men that “jumped onto that plane” have laid the ground work for what will possibly become one of the most important discoveries of the decade. The results we now have in our hands are significant and clearly show us that we are investigating in the right direction. Based on this, we are now working on designing the next step in this research. Yesterday, I just completed a major step in this direction. I hope to be in a position to communicate much more detail about what we are doing and where we will be going in the first few months of next year.
Until then, I wish every sufferer in this place a merry Christmas and a happy new year. I also wish for us all that our bodies will somehow find a way out of this mess.
Awor
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