A call to all UK sufferers

General Discussion
#1

I rang PALS yesterday to make a complaint about the constant denial of my symptoms and the existence of PFS from Drs/consultants in the NHS. On explaining my situation it was suggested I contact NHS England who advised I contact the Medical Health Regulation Authority .

I will send the MHRA a mail outlining my journey and symptoms, pointing to the numerous supporting scientific evidence which now total in excess of 50 papers. The legal settlement in America, the redactment by Merck. I will ask why this drug remains on the market for cosmetic purposes despite all of this and that the labelling does not include or warn of any of the potential for life changing sides. I’ll also include the statistical data on the number of reported off label symptoms (17k) Asking the question what is their stance considering a major part of their role is post pharma vigilance/ to protect public health.

The email address is info@mhra.gov.uk

Can everyone in the UK please do the same. As a public organisation/body they are duty bound to respond to every query…

A veiled threat of raising this with your MP or the health minister would not harm. I worked in the public sector and such proposed actions do carry weight.

The greater the numbers the worse it looks when the public enquiry lands, which it will one day.

Please confirm your willingness to participate, sitting back and allowing the dismissive proffesion to silence us is not what any of us want. Shaking trees can only help.

As another reminder, if you haven’t already done so please report your sides via the yellow card scheme which directly feeds into post pharma vigilance.

Please do this!!! We can’t complain when we sit back feeling sorry for ourselves expecting others to carry the torch.

As per!!! Awareness and recognition are fundamental in getting support towards a treatment.

Regards.

16 Likes
#2

I’m in.

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#3

By the way, this is the exact kind of thing people should be doing, if you need help with this task don’t assume you can’t do it, say something and we will assist.

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#4

I can’t believe this topic isn’t full of people saying that they’re writing their emails now.

This isn’t far from the least you can do to help yourself and everyone else.

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#5

Well done mate. I’ll join you.

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#6

I can do this

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#7

@LazarusRy could you possibly post a copy of the email you send to them? So I can see it as a reference guide etc etc

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#8

Not a problem, send me your email address and I’ll forward it on to you

#9

@SkinDiesel good man

#10

Agreed @Greek thanks for doing this too

#11

Thank you @LazarusRy for leading the charge on this one.

1 Like
#12

No problem at all @Sugarhouse let’s just hope others get on board…

#13

can I have a copy as well. thanks

#14

@palpal @Forwardsnotbackwards have you both submitted to the yellow card scheme? This is fundamental in getting this disease recognised medically by the NHS. Without numbers we’ll not get traction when raising. It takes 5 minutes! Let me know please

1 Like
#15

I had a telephone appt consultation with a Dr at the imperial college in London which is an NHS hospital… During the call the Dr stated that she believed me and confirmed the existence of PFS. She asked if was aware that SSRIs can also cause the same constellation of issues. She stated mindfulness is the best thing in the absence of any treatment. Refreshing that it was recognised and she also praised the endo who put my diagnosis in writing — even though he gaslighted me 1 year into seeing me. Anyway my point is slowly slowly the medical world is waking to this. We need to continue pushing to get our voices heard.

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#16

Glad to hear it @LazarusRy, you’re an absolute gem.

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#17

Top man @LazarusRy.

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#18

I’ve submitted a yellow card years back about Roaccutane.

Others must have been doing the same, because they ended up listing libido loss and erectile dysfunction on the side effects leaflet. A small win. Would I have taken it if I’d seen that on the leaflet? I’d certainly have started Googling - and probably then I’d have run into sites like this…

Make sure to enter your reports, everyone.

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#19

I contacted the MHRA by telephone yesterday and they advised that they have an SLA of 18 days. So basically that’s when they must resply even if if it’s an initial holding response . My email is just about finalised and asks a lot of questions. Please “if you can” send one too! I’m happy to forward it to anyone for info /as a starting point, but do make it your own so it doesn’t look like a cut and paste job it may help give an idea of some of the questions to ask.though I may have missed some myself, I’m simply trying to get more of us to make a difference by writing this! PM me your email address and I’ll happily send it on. Same goes for guys in other countries who should also be knocking on the doors of their own regulation authorities. Come on guys let’s get some momentum going!!! I really think we’re starting to make the right noises and some in the pharma world may actually be starting to feel less confident in their position because of the poisons they’re rolling out. All of what we’re doing will help get us noticed, backing and some research Doing nothing is not the answer.

#20

Do you mind telling me who you saw at ICL? Was just wondering whether we may have seen the same person.