Informed Consent - Irrelevant, Inappropriate Spam

 

Spam

irrelevant or inappropriate messages sent on the internet to a large number of recipients.

Following on from 'Are Nurses Conspiracy Theorists?', which contained a video of nurses who gathered at a town hall in Minnesota to air their views about the safety and efficacy of the vaccine, I now have to report that Facebook have deemed that the 1 hour plus presentation is deemed to be going against Facebook's "community standards". (Fig 1)

Fig 1

It seems a bizarre move by the social media giant given that they are, allegedly, all about correct information being disseminated on their platform. What can be more 'on the ball' than nurses working the front lines in hospitals? Or are Facebook suggesting they are 'tin-foil hat' wearers?

If you've not seen the video yet, then I highly recommend it.

Today, I share another video. It was posted by Instagram user, kaitlinjaramillo, and features two women who show us all the patient information leaflet that accompanies the current Covid vaccines. Obviously, one cannot take a video at face value, so I did some digging into this.

It appears it's not the first video to hit social media regarding the, for want of a better word, "lack" of information being handed out to pharmacists and, indeed patients.

The reasoning behind this "lack" of information is equally baffling.

Here's the video:

According to Truthmeter, an apparent fact-finding website, patient inserts on vaccines are intentionally left blank because data is constantly changing. Instead, the blank pages offer the reader a QR code and a website on which the latest vaccine information is published.

This, at first glance, appears all well and good, however, you can only access the website if you are  a Healthcare Professional in the US. Patient's, it appears, cannot access what is, in essence, theirs. (Fig 2)

Fig 2 (Click on image to enlarge)

So, with Facebook, seemingly, cautioning people who post access to information regarding the vaccine, and Janssen, a pharmaceutical company, only allowing healthcare professionals access to this information, where does that leave the consumer?

It appears Janssen will only allow healthcare professionals access, this includes nurses who, according to the definition of the word 'Spam' sees Facebook flagging such posts because they are "irrelevant or inappropriate" (Fig 3)

Fig 3

What's more "irrelevant or inappropriate", access to patient safety information or no access to patient safety information?

These are the times we are living in, folks!

Bob Fiddaman

Back Stories

Informed Consent ~ Changing the Paradigm

Are Nurses Conspiracy Theorists?

Seroxat Withdrawal Woes Continue for British Patients

Despite Glaxo denying that there's any real problem with getting off their antidepressant, Seroxat, many patients are still struggling to do just that.

What do Glaxo do about it?

Nothing.

What about the British drug regulator, the MHRA?

Nothing.

So, it's left to support groups created, in the main, by former sufferers of Seroxat withdrawal. One such support group is Paxil Paroxetine, Seroxat..The truth in getting off safely, a Facebook group where over 1,000 sufferers of Seroxat withdrawal write about their daily plight, a plight which both GlaxoSmithKline and the MHRA ignore. How caring they both are!

The group was created by two former Seroxat users, one of whom is still on Seroxat, he is still, after 14 years, trying to withdraw. The other, a former nurse, slow tapered for 56 months (almost 5 years) to get off just 20 mg of Glaxo's powerful antidepressant.

GlaxoSmithKline will have no doubt seen the comments, they will have, no doubt, cringed at some of the tales on there but, as is the norm, they will have also ignored them and classed them merely as "anecdotal evidence". Same can be said for the MHRA.

In the meantime, it's patients helping patients because the manufacturer and those responsible for regulating the product that comes from the manufacturer are too busy burying their heads in the sand over the whole Seroxat addiction issue. Hardly surprising, given that the current CEO of the British drug regulator is the former World Safety Officer for GSK. I mean, if they acknowledge a problem now then questions will be asked why they missed the problem years ago, right?

Here's a selection of reader comments from the Facebook support group, each one being accompanied by support and advice. Something neither GlaxoSmithKline nor the MHRA offer.

Coming off of this drug is absolutely horrendous. Any change in dosage and it's like I fall into the fiery depths of withdrawal. I have a husband who is trying his best to be supportive, and 4 beautiful boys that can't understand why mommy is so sick, and so angry. I'm trying my best to get through this, and praying God doesn't make me suffer long. This is absolutely miserable.

After dropping too much too fast in December/January --9mg down to 7mg then down to 5 mg , and withdrawal hitting hard last week-I up-dosed to my last stable dose last Friday (went back to 9 mg). By later Saturday and Sunday I was feeling quite better. Then Monday came and I was terrible again and still am. Nausea, vomiting, racing inside, ruminating thoughts, can't regulate body temp, flushing with any bit of stress, extreme crying spells, agitation, etc.

I was on Seroxat for 12 years, I did some awful things to myself whilst I was on it, I came off it only because I was pregnant with my son and it would have caused serious harm to him, which I found out 3 months into my pregnancy. The withdrawal was awful I had to go onto liquid form it was one of the hardest things I have ever done.

I've been taking Seroxat for 17/18 years. I have been trying for years to come off it, by using the suspension liquid form. Reducing it by 1 ml has given me the shakes in the past. I managed to get down to just 1.5mls using a syringe. 

I have dropped my dose from 40 mg to 20 mg. Been a little over a week now.  Been on it for 14 months now. Gained 40 lbs. never interested in anything anymore. So far since I dropped my dose, I get God-awful brain zaps and I'm very irritable. The insomnia is driving me and my family nuts.

Been 2 months on 10mg after tapering down. Waking up with a bad headache, not sure if from disturbed sleep because of the disturbing dreams.

As of last Wednesday I have finally tapered myself off Seroxat after 15 years. Feeling really awful. Contrast dizziness and headaches. Feeling faint all the time. Struggling to focus at work too.  Feels like I am sea-sick, drunk and hungover all at the same time.

There are many more.


GlaxoSmithKline will be defending allegations later this year in the UK that Seroxat causes serious adverse events in a number of people who take it - they claim that there is "no merit in the claims".
They had previously, via lawyers, tried to get the litigation stopped but were denied by the presiding Judge (Back story)

Contrast the above withdrawal comments with those from 2007 that appeared via an online protest petition, here, here and here and one could suggest that there are no merits in GlaxoSmithKline's defence. Let's hope, when those previously unseen documents are aired in court, that someone might see fit to open clinics for those still suffering at the hands of Glaxo's infamous antidepressant, let's hope too that Glaxo will have to foot the bill.

Groups such as "Paxil Paroxetine, Seroxat..The truth in getting off safely" should be applauded, they are doing the work (unpaid) that both Glaxo (paid) and the MHRA (paid) should be doing.




Bob Fiddaman.

Rxisky Business - The Importance of Being Earnest

I've always wanted to use film titles as a title for a post, the above, Rxisky Business - The Importance of Being Earnest, kills two birds with one stone and, if I say so myself, is pleasing on the eye.

So, what am I trying to say here and why have I misspelled the word 'Risky'?

Well, this post is about the importance of filing adverse reactions to prescription drugs on RXISK.ORG, a reporting system with a difference in as much that they actually follow through the reports you send to them.

So, why report to RXISK opposed to the FDA, MHRA, TGA or Medsafe?

2012 - The Year of Dr David Healy

Internationally respected psychiatrist, psychopharmacologist, scientist, and author Dr David Healy has been busy of late. The launch of two new websites [one in blog form] and a book has got people talking in the blogsphere and on Twitter.

For those who don't know, Healy became a household name in the advocacy circles when he first spoke out about antidepressant use, particularly those of the SSRi family, of which Seroxat is one. He has been used as an expert witness in many cases against the pharmaceutical industry and, to my knowledge, is the only UK based health professional who has got to grips with the whole SSRi withdrawal issue, even offering tapering regimes for those who are struggling with their, apparent, non-addictive medication.

He's met with the MHRA, the UK regulatory agency who claim there are other SSRi withdrawal specialists based in the UK [but they cannot name who they are or where they are located] and provided them with a withdrawal protocol for SSRi's. Sadly, and predictably the withdrawal protocol fell on deaf ears and still remains on the table at the MHRA collecting dust and cobwebs.

It's safe to assume that the MHRA, who remember are fully funded by the pharmaceutical industry, are not one of Healy's biggest fans, to actually agree to meet with him back in 2010 must have stuck in the throats of those present. You see, the MHRA do not like being told how to steer their ship, they don't like being told that they are wrong. It's clearly evident, to me at least, that they are failing miserably in safeguarding human health. PIP implants and hip replacements are just two of the medical devices that have recently hit the news and highlighted the MHRA's failings. Prescription drugs such as Avandia, Vioxx, the class of SSRi antidepressants and benzos have also shown how the MHRA are failing to regulate properly.

Anyway, this post is about Healy's new ventures, namely his two new websites, Data Based Medicine Limited, which operates through its website RxISK.org and his personal website davidhealy.org.

Data Based Medicine Limited, of which Healy is the founder and Chief Executive Officer, aims to make medicines safer through online direct patient reporting of drug effects. Some may say it was created in direct opposition to the MHRA's current patient reporting system, the Yellow Card Scheme [YCS], a scheme that, over the years, has proven to be about as useful as a sailboat without a sail. The MHRA, of course, will argue that they have the best worldwide reporting system in place, in essence it's probably the best of a bad bunch and not something I'd shout from the rooftops if I were in charge of the MHRA.

Where Data Based Medicine Limited differ from the MHRA is that they intend to take anecdotal evidence and to present it as real based evidence. The YCS is, after all, an official anecdotal reporting service lacking in any follow-up or action.

The blurb for RxISK.org reads:

RxISK.org is your site to help make medicines safer for all of us. No-one knows drug side effects like the person who is taking a pill. Yet this voice is not heard. RxISK will provide a megaphone to you and your doctor to change the way we see drug safety.


Drug safety is an issue for us all. Prescription drugs are now a leading cause of death.


However, there is no evidence base for managing this new plague, nor are there any guidelines to help your doctor save you.


This means it takes time for the harmful effects of Vioxx, Avandia, and Prozac to be recognized.


You may have been told there is no evidence linking the treatment you are on to problems you are now having.


One reason there may be no evidence is because you and your doctor have been silenced. We need you to help us get across the message “We are not Anecdotes”. With your help, we're here to make medications safer for all of us.


Healy's other website, davidhealy.org, features articles, books, discussions and a regularly updated blog from Healy himself. His latest post is an eye-opener and relates to the way pharmaceutical companies admit and deny, almost in the same breath. That particular post can be read HERE.

If that weren't enough, Healy also has a new book [available March 2012] subtly entitled Pharmageddon,  "a searing indictment and forceful argument against the pharmaceuticalization of medicine..."


Once I land a copy of the book I'll review it and post on here.

All in all, the start of 2012 has been productive for David Healy. He's no martyr, he's just someone who has seen a problem and has set out to do something about it...without being answerable to those that created the problem in the first place.