Establishing a Plan to Promote and Fund Research into Side Effects
September 3, 2016 at 1:43 pm #1937
Good to see there are already a few people who are serious about pursuing legitimate scientific research into our side effects! Nearly all of the presumed links between Accutane’s effects and our symptoms have been based on the majority of people who are left relatively unscathed. We need to find out why we reacted differently from them, down to the finest details.
Some good points were brought-up on the Repairing Long Term Damage thread:
I have been thinking more lately about fundraising research for those of us devastated by these side effects. Has anything been set up yet?! Let’s jump in. I know this is a goal of LastingSides and I applaud that. Like them, I am just tired of waiting. There are two-three ways we go do this.
1. Contact that university who initially expressed interest in doing research. Tell them we want to get started so they can set up a spot for donations directly on their site. This will circumvent the usual fees associated with fundraising sites. People will also KNOW they are NOT giving their money to a scammer.
2. Reach out (send emails, phone calls, etc.) to other universities and try to set up something similar.
3. Find a fundraising website that allows for multiple admins. On some platforms, it is possible to give multiple people a key for releasing funds. For example, money is raised in a certain account. 3 admins have a unique password for releasing the money to another source, and at least 2 out of 3 must input their specific code for anything to happen. This safeguards against fraud or anyone holding the money hostage. However, I do not know of any mainstream fundraising websites with this feature. (Please let this be possible for more than just bitcoin. . . )
Okay, someone give me some input. What do you think? I obviously prefer option 1 or 2.
No, nothing has been set up yet. There was some talk of a small study a couple years ago but the opportunity has likely expired. I can’t go into more detail now but can check into it again soon to see if the offer is still on the table by some chance.
In regards to option #1: I received an email from the parent of one of the Roaccutane suicide victims when the topic was still being hotly debated in the UK. If memory serves me, he mentioned that the University of Bath (performed the studies on the hippocampal system) was to perform further studies funded by the government to identify any potential organic links between Accutane and depression/suicide. That obviously never happened but maybe the interest is still there.
Option 2 and 3 aren’t bad ideas.
Option #4: We could have an existing NPO with a proven track record manage the fund until we get on our feet.
Option #5: Lobby pharmacovigilance agencies and genomics companies to pursue development of diagnostic tests based on whole-genome sequencing of side-effect sufferers and determine the genotypes associated with certain side effects.
- We would likely find some answers (possibly therapeutic targets)
- There would be a huge market for this emerging industry in potential candidates for Accutane treatment since the drug is so carelessly prescribed for mild and moderate acne
- Pharmaceutical companies and dermatologists can say for the first time with sincerity that precautions are being taken against needless suffering
- The genomics companies would foot the majority of the bill
- Side-effect prone patients would drastically reduce their risk and seek alternative treatments
- This is a hot topic at the moment and will likely receive abundant media attention because one of the most controversial prescription drugs in history will be made much safer to prescribe to children
It would be better if no one took it, but who can argue against risk reduction if possible. IMO, pre-treatment testing of patients, such as this, should be required of all of these off-label chemotherapy drugs and any drug that carries the possibility of long-lasting side effects.
When it comes down to it, perhaps approaching the right university researchers personally with a statement defining our problem/problems from an angle that relates to their area of expertise should be the first step? If someone shows interest and has the capabilities, then we can justify asking for donations and participants. Not sure how useful it would be to gather funds without a project in mind first but it wouldn’t hurt to have money in the bank for when the time comes.
September 6, 2016 at 7:43 pm #1942peteKeymaster
Yeah, it’s time to get this thing moving. The PFS guys have made a massive imapct – it’s time to do the same for Accutane, Lupron and SSRIs.
Personally I would hope that the future would involve an organisation which researched for each of these meds. The PFS Foundation is in a good position to do this. They could adapt their strategy by invoking the plight of patients affected by the above groups, and requesting donations into their existing studies on PFS. They could do this by adjusting their messaging – to say that we Accutane, SSRI and Lupron patients can gain a lot by investing into the studies on Propecia. By setting out this case, they can gain additional donations and start a snowball-effect.
September 6, 2016 at 8:22 pm #1947
I’ll be at Medical School in London commencing September. I’ll have a look around to see if they have any sort of avenue where something of this nature could possibly be pursued. A very good idea considering the impact the PFS community have had. As Pete said, it has the potential to snowball if it could encompass all of the afflicted as it drastically increases numbers, thus, interest and if a similar mechanism is discovered, well that’s a bonus.
September 6, 2016 at 9:43 pm #1950
Hi Pete, Hi Crank.
Thanks for dropping in. On vacation for the first time in years this week, so don’t have much time to put into the site till I return.
As you can see, we’ve had several new members join lastingsides.org in the matter of a couple days last week and start posting. For some reason, the conversation was carried over to acne.org.
Glad to have some people on board, but we need to get to the bottom of why this site isn’t being used. If there are technical difficulties, they need to be made known and addressed. Report them in this thread. If it is the core message of androgen deprivation being an overlapping component of the MOA and many side effects of all drugs featured on the site that is turning some people off, the message needs to get out that people won’t be restricted from using the Accutane forum simply for not supporting that particular hypothesis and that we only ask that any theorizing be supported with information directly from journal-published sources. (If you can find it on Google Scholar, it’s probably good.)
September 6, 2016 at 10:02 pm #1951
forgottendreams said on acne.org regarding Dr John Santmann:
Right, I completely understand he isn’t our “friend” and that the only solution is to form our own initiative, like they have done.
Not necessarily true. I only say that I cannot put words into his mouth because I haven’t spoken to him directly about it. Pete, Awor and I had a discussion a couple years ago about the potential to set up a separate fund for scientific research into mental/depressive symptoms caused by Accutane and for that fund to be managed by the PFSF. We simply cannot expect the foundation or anyone involved to actually put up money for our cause because the donations sent to them thus far are not intended for that. That does not mean they have refused to help us in some way.
That was a couple years ago though, and we may need to stand on our own at this point.
I literally sent out hundreds of emails to doctors, universities and researchers – almost no response. A researcher in Brasil who has researched Vit A toxicity got back to me a few times (his articles scare the hell out of me) but expressed concerns about the difficulties in researching such a drug as accutane; the fear factor re the pharmaceutical companies – I kid you not!
There are 4 charities in the US who invite applications from people who are suffering from rare/genetic disorders. They have doctors that research the conditions. I got no response from any of them.
You would think Doug Bremner would take up our cause but I got no response from him either. (Only see him discuss depression and brain damage from accutane).
We should all bombard David Healy – I at least got a response from him but only to say that no research was going on. He said that my situation was very grave but that he couldn’t help me because he gets hundreds of emails from people like me every day and that there is nothing that he can say that will help. I was in a bad way when I contacted him and I did not find his response helpful. However I do think he is in a position to speak out in the media if enough pressure was put on him. He knows the damage that accutane causes and he should be doing more to help!!
If we had representatives from this forum that was able to put forward a case we might actually get more response.
I think you, Dubya or Indigo would all be great for this. I wish indigo would do more youtube, but be more aggressive about getting the message out there about accutane and the long lasting side effects. I wish in his pod casts he would act as a spokesman for all the stories that he hears and knows about, not just his own personal experience. I know this is a big ask but I really think he would be a great representative for us all.
He would need a lot of help of course.
If we could build up enough credibility and media attention it would eventually lead to some research being done.
What we need is one of them daytime shows to interview someone like Indigo and then ask people who have taken accutane to get in touch and give their stories. I though there were quite a lot of shows in the US that do this type of thing.
Some of you must have seen the interview that Paul gave about propecia on the ‘this morning’ show UK, it garnered a lot of media attention which will certainly help him with his claim for compensation.
I know a group of parents set up a action group but they no longer exist and it’s hard to get info on them as all their websites were shut down.
That’s what we really need again but it takes man-power, money and commitment.
I really like the way you are thinking Accuity – keep driving things forward!
Thanks for going through the trouble of contacting scientists. As you mentioned, there is fear among researchers of “biting the hand that feeds” when it comes to adding supporting evidence of drug side effects. This was said to be a major concern when the PSFS was soliciting scientists to help. The drug companies give generously to many universities and the universities would not be happy about one of their own doing anything to jeopardize that relationship. Not sure what we can do except keep trying.
Dr. Bremner’s focus is on Accutane’s effect on the brain and it makes sense that he would not have much interest i n sexual side effects alone. Nevertheless, he is currently making a movie parodying his clash with Roche that is to be released in the next year: The Goose That Laid the Golden Egg. He is on our side and we can hopefully share a mutually beneficial alliance with him. When that movie comes out, it will give us an opportunity to make some noise again.
Same with Dr. Healy. He is on our side. He believes those of us with sexual dysfunction from Accutane suffer from a form of PSSD, but can only do so much to help. He has done quite a bit to publicize the horrors of drug side effects and featured several stories about Accutane, Propecia, SSRIs, and Lupron on the RxISK site over several consecutive weeks.
They will both be approached regarding this site once we gain momentum.
Like your idea about posting our Accutane stories on youtube. Some of us must maintain our anonymity because of our careers, but it doesn’t matter much to me any longer. I will post a video sometime this fall. Would only encourage anyone who wishes to do this to take their time in planning and preparing for their video.
September 8, 2016 at 3:06 am #1952
Well, I don’t have too much more too add aside from what is contained in the original post. In an ideal world, we would be actively gathering funds for a study, but nothing is in motion yet. I think the best course of action now is to contact as many universities and scientists as we can. Emphasize the fact that we acknowledge science does not have any precise answers for our ills, but we would like to set a study in motion for post-Accutane sufferers. Say that the community would be willing to crowd-source the funds. I have already been sending emails out to some of the names people have thrown around in the Acne.org forum and here. I don’t think there is a such thing as overkill in this case. If anything, repetitive messages from multiple users would show that this is an area worth pursuing. As this site grows, it will add credence to our problems. (I hope administrators of this site do not mind if I name-drop this website within my emails. I know it is still small, but its mere existence shows people are serious about this.)
In terms of HOW such a study on post-Accutane sufferers would look, that is certainly an interesting discussion. Genetic markers would be a worthwhile avenue. In the mean time, I’d love to compare results from those who have already taken a 23andMe test and gotten their data analyzed on Promethease. Brain scans don’t always tell as much as one would expect (and they are also pricey), so perhaps that should be left for each individual to check on his/her own. I would be interested in nuanced hormone testing or measurement of cellular metabolite activity (I’m thinking of the recent CFS study). Control groups preferred. I’m not sure though. Is anyone? At the end of the day, we’re probably all going to be funding this study collectively. So we can’t all get exactly what we want. Just getting a study to take place would be a HUGE momentum boost. I’ll take whatever we can get initially, and go from there.
- You must be logged in to reply to this topic.