MHRA meeting update

Firstly thank you to @infinite, @Andrew35 and @espresso who were actively involved in the pre work and the meeting itself, to those who supplied testimonials and to those outside of the UK who expressed an interest in getting involved. .

Without the yellow card submissions, letters and emails from sufferers none of this would have been possuble.

Now to the meeting itself.

The MHRA representative was very open and it was clear she accepted that things do need to change. She will conduct the review which will take approximately 2 months. She stated its been given the highest rating.

From the scene setting Infinite provided the walk though of a presentation which was invaluable in providing pfs related factual data and information

We then gave individual verbal personal accounts of our finasteride experience.

Which was followed by a discussion around what we’re hoping to get from the MHRA going forward

It was clear that we were taken seriously. Patient feedback/interaction forms an important part of the review process. There will be investigative analysis of all related data/contact with other government departments, stakeholders and relevant agencies before any decisions or recommendations can be made.

We were advised of the MHRAs remit but also re assured that recommendations can made to other bodies etc where needed. (Obviously review findings dependant)

She also stated that she’d be happy to field questions from the wider community and that these could be brought to the next meeting which is yet to be arranged.

Overall it was a very positive even refreshing, there was no challenge or dispute.

The changes in France and work by Sylviane has also been key.A special thank you too @lacreland21

We also have the upcoming exclusive in the Mail on Sunday this weekend which will mainly be focused on the review. Thanks to those who are speakjng to reporters this week. @Tyr

Collaboration across countries, all of the on going work (which as at an all time high) may actually result in getting pfs officially recognised, ultimately leading to wider investment.

We may come out with asks in the coming weeks.
Relevant updates will provided.

Last but not least continue to submit to the yellow card scheme and to the authorities as it is essential tool that is used to identify issues

I hope I’ve captured the salient points guys but feel free to chip in. As stated many times, apologies
for any grammatical errors, because of the cognitive issues.




Thank you so much, that is very encouraging news :slight_smile:

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Merci beaucoup à vous, c’est tous ensemble que nous y parviendrons. J’espère de de plus en plus de personnes vont s’impliquer.

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The MHRA have advised today that the review will now be concluded late August, they stated the reason for the delay is due to the detailed analysis and other reasons outside of their control… Further slippage was not ruled out.

As a reminder please Everyone report every symptom to your authorities, in the UK. It’s the yellow card scheme low numbers = very limited credibility and no action (understabily) . High numbers = validity and action this in part has been the reason why the MHRA review is taking place Don’t undersell this disease, report it all, we cannot complain if nothing is being done if the basics are not carried out. We are getting better at this but many still dont report sighting it doesn’t matter or make any difference.


Hey Ryan it’s Celia- will you message me. I haven’t been I’m touch because I switched phones and lost yours

I received another update from the MHRA today.

Because of other dictated priorities the review outcome has now been moved to October. The lead investigator re iterated this remains a priority. Something urgent came up.

As an aside but a very important one. A FOI request showed numbers recorded for insomnia alone only totalled 3 as of 2021. This is an absolute joke but would explain why little has been done to entertain complaints to bolster warnings and shows that the yellow card scheme is grossly underutilised it also gives weight to my suspicion that you must report your symptoms seperatley for them all to get recorded. I would ask everyone on here from the UK to immediately re record all of their symptoms . I recently reported 3 suicides to the MHRA that had not been notified. One thing is for sure over reporting is certainly better than the opposite.

Please do this. It’s extremely important

I’ll keep you posted on the review front.