Editorial: This post by Johanna Ryan is one of several that will pick up on the Fake News theme. But we also want anyone who has PPI stories to get in touch. And to pick up Dee Mangin’s legacy prescribing issue, do PPIs lead to SSRI use or is it the other way around? There is a complementary post – Fake What – on dh.org.
Increasingly, any information about adverse effects is smeared as “Fake News” – and patients who pay attention to it are condescended to or outright dismissed. The implication is that because we are so much less educated than our doctors, we can’t tell sensationalism from science. So we fall prey to “Internet fear-mongers,” who do us harm by scaring us away from taking medicines we really need.
The effect of the Fake News epithet on patients is to make us feel stupid, but the effect on our doctors is worse. Not only does it increase their confidence that the patient has nothing to tell them – it gives them a sense of virtue about shutting us down.
Twenty years ago they might have felt a bit arrogant when they did so, even if convinced they were right. But now they are encouraged to feel proud of their refusal to listen – even proud of “firing” a patient who, say, refuses a vaccine or drug the doc recommends. They’re not arrogant! They are brave warriors for Science. And the patient is not just a fool – he’s a dupe of the same forces trying to deny climate change and keep kids from learning about evolution in school.
Just ask leading UK psychiatrist David Nutt, who insists there is “overwhelming evidence” that mental health problems are caused by chemical imbalances in the brain.
“It’s like the climate change debate. Some people do not want it to be true, but there is a biological element. It’s not a myth. We know the chemistry of depression.”
Scaremongering
Or as AstraZeneca (makers of Nexium, the blockbuster “Purple Pill” for GERD) tells us: Your doctor wouldn’t try to do your job, would he? So stop trying to do his job! You’ll only screw it up.
Esomeprazole (nexium) is along with omeprazole (losec), pantoprazole, lansoprazole, dexlansoprazole and rabeprazole are proton pump inhibitors (PPIs).
Scripture
Well, since this blog has been dipping into Scripture of late, I will take my text from Luke, Chapter 6, verse 42 (English Standard Version):
How can you say to your brother, ‘Brother, let me take out the speck that is in your eye,’ when you yourself do not see the log that is in your own eye? You hypocrite, first take the log out of your own eye, and then you will see clearly to take out the speck that is in your brother’s eye.
Verily I say unto thee, Doctor, there are two lessons here:
- Your patient may have absorbed some Fake News lately via Facebook, or on dodgy websites where hucksters peddle miraculous herbs. But do you even realize how much Fake News you are being fed?
- As for Fear-Mongering: sure, those grubby Internet sources may dish out plenty of it. But the dodgiest and most damaging scare propaganda your patient ever heard just may have come straight from the medical authorities (including, maybe, you).
Fake Science & Prole Feed
The first point is probably the most important. Most doctors think the journal articles on which they rely were written by the Harvard or Stanford med school professors listed as official authors. More importantly, they also think those eminent experts actually did the research (or at least supervised those who did it) and have the actual data as to the results. But as regular readers of this blog realize, chances are neither one is true.
But the second lesson is important too. Fear-mongering shapes much of the “mainstream” consensus on drugs and diseases: deliberate, focused, relentless fear-mongering. It’s led by the drug companies and their marketers, with the full complicity of those Harvard and Stanford guys, who clearly know better.
The fear-mongering directed at U.S. patients is especially crude and all-pervasive. But increasingly it’s directed at doctors too. Things would be bad enough, of course, if the average doctor’s views were shaped by reading medical journals. But for the most part they are much too busy for that. Instead, they rely on medical “newsletters” and Continuing Medical Ed seminars that digest the latest studies for them and spit the correct conclusions into their open mouths, like baby birds.
I call it Prole-Feed, after the stage-managed “news” served up to the lower classes in George Orwell’s 1984. It comes in both Doctor and Patient Editions. It allows the medical establishment to aggressively push notions that have been thoroughly discredited and that the leading experts would insist no one seriously believes—like the “chemical imbalance” theory of depression offered us by Dr. Nutt. Worse yet, it allows the average doctor to absorb these notions, and transmit them to his or her patients.
Don’t you know GERD can lead to cancer?
One of the worst examples, in my book, was the campaign to make us all very, very afraid of Acid Reflux. Check out this scary 2002 ad for Nexium, AstraZeneca’s blockbuster PPI:
An earlier version of this ad raised an even bigger scare: Esophageal cancer. That’s right, the Big C. I can’t find that version online. I believe it was a “disease awareness” spot, produced before Direct-To-Consumer drug advertising was legalized in 1997, and thus did not mention a specific drug by name. But it featured the exact same forbidding “eroded” desert landscape, and the same anxious people repeating the same lines:
“I thought it was just—heartburn.” “I didn’t know.” “I didn’t know!”
The later, Purple Pill version replaced the cancer warnings with vague talk of “erosions” and “damage” – probably in order to satisfy the FDA. But the original spot remains embedded in the memory of every American TV watcher of a certain age. The Big C tends to have that effect.
You think I’m kidding? Check out this ad for Mylanta, a non-prescription acid-reflux remedy, which aired back in 1991:
The intensity of this ad may surprise you: Why is that nice, healthy-looking woman so terribly anxious about consulting her doctor for heartburn—and so blissfully relieved as she tells us that “My doctor said Mylanta”? Any US Baby Boomer would know: The poor soul lay awake for weeks worrying she had cancer, like they told us on TV. But thank God! It wasn’t GERD – it was “just heartburn.”
So what’s the difference, anyway? That’s one problem with this scare story: there isn’t much. “GERD” and “heartburn” are not really two separate diseases. They’re more like two sides of an arbitrary line in the sand: If your bouts of heartburn happen at least once or twice a week, and a product like Mylanta doesn’t totally fix them, we will agree to call them GERD. Since as many as 50% of Americans may have these symptoms at least once a month, estimates of the number of people with GERD run as high as one in every four of us, or about 80 million.
And while it’s true that people diagnosed with GERD have a higher relative risk of esophageal cancer, the absolute risk remains incredibly low, as a 2010 survey confirmed. For a 60-year-old woman who’s had weekly “GERD symptoms” for years, the risk is roughly equivalent to a man’s risk of breast cancer. For younger “GERD patients,” it’s even lower.
The “Prole-Feed” never dies …
And yet, we still worry – because medicine has taught us to do so. Here are the top queries Google suggested to me just last week:
The persistence of Cancer Panic as a marketing tool for PPI’s was brought home to me in a recent article from Consumer Reports, titled “Should You Still Be Taking That Medicine?”
In general Consumer Reports is fairly good at giving Pharma claims a skeptical once-over. And this article was based in part on an interview with one of my favorite doctors: Dee Mangin, professor of family medicine and medical director of RxISK.org. Dee and her colleagues had just published a study examining why so many older people continue on prescription drugs for years longer than official guidelines recommend – legacy prescribing. The resulting “polypharmacy” (reliance on multiple meds) is not just useless, but can cause serious health problems in its own right.
But Consumer Reports also dug up an “independent expert” to comment on Dr. Mangin’s study (in the interests of balance, I guess): one Robert M. Breslow, a pharmacy professor from the University of Wisconsin. Breslow agreed polypharmacy has health risks, but sagely opined that in some cases doctors might have good reasons to continue the drugs for longer than usual:
But at certain times, experts say, this increased risk may be worth it. For example: If a person is suffering from gastroesophageal reflux disease (GERD), which can lead to esophageal cancer, the extra risk of a PPI may well be worth the extra protection it offers. “We have to deal with each patient as an individual and really assess them in a holistic way in terms of risk and benefit,” Breslow says.
“GERD, which can lead to esophageal cancer.” It just slid right in there, attributed to unnamed “experts.” In 2018, yet. The named expert, Dr. Breslow, would not likely want to be directly quoted saying this, because it’s so deeply misleading. Nonetheless, a casual reader would definitely see his expertise as giving it the stamp of truth. Taking PPI’s for mere heartburn might cause “rare but serious problems,” we’re told. But what if we actually Have The Disease Of GERD? Best to do what we gotta do, we’re apt to think, to avoid getting cancer.
It’s hard to imagine the developers of Proton Pump Inhibitors, or the “thought leaders” in gastroenterology, ever seriously believed that 80 million Americans should be on PPI’s for life to save them from death by cancer. That business of “absolute risk” versus “relative risk” can be understood by anyone with a high-school education. It’s hardly rocket science. Yet thanks to well-designed Prolefeed, plenty of medical-school graduates are powerless to sort this out. They can be counted on to advise their patients to stay on those PPI’s no matter what, for the sake of “prevention.”
Why does that matter? The potential harms go far beyond wasted time and needless worry, or even the billions spent on AstraZeneca’s patented “purple pill.”
Editorial Note
For the record GERD/GORD is an entirely made up disorder invented in the 1980s by companies attempting to block the bitter taste of the disappearance of the most lucrative market in medicine – the duodenal ulcer market – after a brash Aussie discovered a short course of antibiotics could cure ulcers. The Acid blocking drug companies did everything they could to block anyone hearing about cures for ulcers. When they failed they created GERD/GORD.
The human body is not designed to take drugs chronically. When PPIs emerged first they were thought to be so powerful that they should only be taken for a week. They are now routinely prescribed for ever.
In clinical practice I see a large number of people who become anxious on them and who often end up prescribed anti-anxiety meds without anyone realising its the PPI that causes the problem. Stop the PPI and they become much less anxious. But others seem to end up on PPIs after their SSRI.
Spruce says
I have had first hand experience of being accused of falling for ” internet fear mongers”.
One of the first responses from AWP to my complaint included something along the lines of ” Lots of things can be found on the internet. But because Post SSRI sexual dysfunction hasn’t been acknowledged by medicine as a real condition, I am unable to confirm whether you may be suffering from it”.
I had sent in some information about PSSD from the internet with my complaint (from scientists and some doctors expressing concern about persisting sexual effects), and the implication was that I was a poor misguided patient who had swallowed hook, line, and sinker, some scaremongering on the internet about how sexual side effects from SSRI’s can persist after you come off them.
The letter then went onto point out that depression and anxiety can cause lowering of libido, even after I had strongly stated I didn’t feel that my sexual problems had been caused by depression or anxiety, and had given detailed reasons why I felt this, including that depression and anxiety don’t cause genital anaesthesia or pleasureless orgasms. This important point was ignored by AWP, and they defaulted to blaming “other factors”.
No matter what I said they would try and twist things around to make out “other factors” were to blame. It was always “other factors”, never the SSRI.
What particularly angered me and made me feel very betrayed, is I actually found one GP (about the only GP who did know about PSSD), who openly told me he was an ex psychiatrist and had, had, a number of patients who had persisting sexual side effects from SSRI’s, that lasted for years after they came off SSRI’s.
I became quite excited and realised that now I had a doctor who believed me and surely he would do the right thing and speak to my Psychiatrist (who he actually told me he knew).
I did absolutely everything I could to get this GP who knew about PSSD to talk to my psychiatrist about PSSD, even getting my MIND advocate to write to him asking him to tell my psychiatrist he was aware that sometimes the sexual side effects from SSRI’s can persist when you come off them.
He was having none of it, and politely declined to write to my psychiatrist.
After asking him to speak to my psychiatrist about PSSD he turned quite nasty. He would do everything he could to avoid talking about PSSD, would shift uncomfortably in his chair whenever I brought it up (I used to mention it everytime I went to get a refill for tapering off benzos), and he would change the subject at every chance he got.
He would try and keep our appointments as short as possible, often reminding me that my 10 minutes was nearly up (he never used to do this before I started asking him to talk to my psychiatrist about PSSD).
Also once I came in with the written response from the MHRA saying they were looking into sexual dysfunction from SSRI’s persisting. I handed it to him to read, and he handed the piece of paper straight back to me within a second or two, without even glancing at it. I found this very rude and arrogant.
No matter what I did he would not talk to my psychiatrist about his experience with PSSD.
I felt particularly betrayed by this doctor. He knew about PSSD but he refused to help me, even after I had expressed to him the amount of distress the condition had caused me.
Carla says
Hi Spruce,
So sorry to acknowledge your situation
The turmoil some of these Drs put you in, is just unacceptable.
If had a doctor like that, he would of been given the ‘flick’ a long time ago!
You are already suffering from a problem you never had before you ingested these meds.
If some Drs do not want to side with you, with all honesty, they are not worth your precious time.
There is already enough information about the damages these meds are causing.
If they don’t believe you, it is very demoralizing.
You deserve better!
annie says
‘You were there for two years, why won’t you help me?’
This was an email I sent in desperation to my doctor.
I had no choice but to continue seeing the same village doctor who took me off Seroxat cold turkey and who was relentlessly dismissive, extremely rude and did not take any advice given by a psychiatrist. In fact, his advice was unanimously ignored by both doctors in the surgery and the practice nurse.
Two years was a very long time to be hospitalised twice; the story of those hospital stays was not pretty. In actual fact, the whole process of drug withdrawal was not pretty.
It took me a long time to realise how manipulated I had been, far too familiar with the patient …
When a few years later, I took the bull by the horns, and directed my medical records back to the surgery, now living across the loch, the £99 I paid for boss doctor to read through my medical records drew an unexpected revelation.
The invoice said, £99 for reading through medical records.
That is quite a lot of money and I would have expected a thorough report.
It was only as I got up to leave, that he dropped a bombshell about this drug and that drug …
Verbal.
My entire Seroxat Saga written up, recorded, over 40 surgery and home visits contain a muddled disjointed scenario with areas of malfeasance ..
The lengths they went to subsequently, when everything had calmed down, was to end the matter which was easy for them to do …
Like Spruce, I found an expected ally.
A really great locum called me in and I was with him over an hour.
Like Spruce, he wanted to remain anonymous ‘don’t tell anyone I said so’ remarks
He even said, I went to your other surgery once, and never, never again
So, we try so hard to get at the truth and it seems that at every turn we are knocked back and people should realise this is what happens – doctors can be ruthless, if pushed …
Carla says
Hi Spruce, Annie & (many others souls going through this relentless experience),
I understand, only too well, your dilemma.
This is why I gave up on Drs and the system a long time ago.
I have very little tolerance for this very kind of behaviour and culture that fails to treat me with the dignity or respect, I deserve.
Sadly, I am doing what they did to me. Rejected me when I needed proper treatment and care of just acknowledging that the meds caused me harm.
When I hear/see that kind of ‘carry on’, I gently remove myself from a dismal situation.
Once they damage you, either by: (the meds that they prescribe or a dodgy treatment they do on you), it is like no one cares and quite frankly, this is very problematic for people who need genuine care.
I have no time for ‘childish games’ or professionals who are not willing to form a united front and say it as it is.
Don’t want to be part of a culture that lacks integrity.
My motto is:
Man up or I will give you the ‘flick’ ~ If your or anyone else cannot be on the square, I am not giving any more of my time to you guys,
Sadly, people just put up with this ‘nonsense’ because they are on the welfare system and have no choice. This must be totally gut-wrenching.
Yes, I can empathise totally with this kind of hear/see/speak NO evil. (what a bunch of baloney!)
Marc Casañas Escarré says
Hi Johanna Ryan. You say “in my book” in your post but I can find it anywhere. Do you have a link?
Thank you. Your cases are like ultradisease mongering. Best of the best.
Johanna says
I’m totally unpublished … that’s just an Americanism I’m afraid. “In my book” means in my opinion. As in that good old love song from Gladys Knight & the Pips: “You’re Number One In My Book”
https://www.youtube.com/watch?v=ZFwkwoMOk9k
Marc Casañas Escarré says
Never read the expression Johanna, thanks for the explanation (and for the song!). You could write one :D. I would buy it for sure.
mary H says
Hi Marc, when Johanna says ‘in my book’ she does not mean that literally – it’s just a saying which means ‘in my opinion’ or ‘the way I see it’.
Johanna – brilliant piece and I like your continuation of the ‘sermon headings’. It almost got me paraphrasing a hymn for the ‘service’ –
‘All over the world’ are you acquainted with the words?!
annie says
Couch-in-crisis…
Sorting Out the Antidepressant “Withdrawal” Controversy
Ronald W. Pies, MD
David N. Osser, MD
Jan 16, 2019
In 4 parts
http://www.psychiatrictimes.com/couch-crisis/sorting-out-antidepressant-withdrawal-controversy
Taster..
While we do not deny that severe reactions can and do occur when antidepressants are stopped suddenly (or the dose reduced too rapidly), we also believe that fears of such “excruciating” experiences are greatly overstated, in the context of proper psychiatric care.
Indeed, we are unaware of any reports of lethal withdrawal reactions when SSRIs/SNRIs are rapidly or even suddenly discontinued.
“what they might teach us regarding so-called “antidepressant withdrawal”
Dee Mangin
Professor of family medicine, McMaster University, Hamilton, Ontario
https://www.cbc.ca/radio/whitecoat/i-was-sobbing-uncontrollably-patients-say-antidepressants-difficult-to-quit-1.4658787
“I think that one of the difficulties patients have faced over the years is that reporting these symptoms to friends or family or their doctors and not being believed. To have the symptoms attributed to some sort of psychological illness rather than being heard or acknowledged.”
She said although patients have reported the problems for more than 20 years, there’s been little research because drug companies are invested in getting new drugs onto the market, “not to get them off.”
She credits patients with filling the void.
annie says
Polypharmacy in primary care: Are medications being appropriately prescribed?
By
Monica Naatey-Ahumah
January 16, 2019
https://www.medicalnewsbulletin.com/polypharmacy-primary-care/
Researchers retrieved data from the McMaster University Sentinel and Information Collaboration, an epidemiological database, on patients who were at least 18 years old by the end of 2016. Of particular interest in this study was legacy prescribing and its contribution to polypharmacy.
Interestingly, antidepressant and PPI prescriptions were often found together, suggesting the adverse effects of the antidepressants may result in PPI prescriptions to alleviate those side effects.
susanne says
The psychological abuse so many of us have and are still experiencing should be subject to the same law brought in a few years ago to deal with domestic abuse –
Coercive Control – defined as humiliation both overt and covert; threats ‘if you don’t like what I’m telling you, you can go elsewhere’ ; when there is no elsewhere and the ‘networking’ in an area will make things worse) ; intimidation – ‘this is my clinical judgement and how I was taught – do you know more than us?’ The use of ‘us’ rather than ‘me’ is important as it leaves a person isolated from getting a different consultation with an unbiased
medic/healthworker
– importantly included in the definition which can lead to a fine or imprisonment in a domestic abuse case – support and reliance on the perpetrator.
Gas lighting – has a role in abusive power games and is recognised as having 7-10 identifiable markers by the psychological society in Psychology Today . Gas Lighting in Relationships, April 30 2017 Includes using psychological means to make someone doubt their sanity It is a common tactic used by dictators and cult leaders ‘if you repeat a lie often enough it can become accepted as the truth and can occur over a whole society; (re Peter Gordon’s blog) The term came from a film called Gas Lighting which dealt with abuse of women.
Catch 22 – a situation from which a person cannot escape often resulting from rules and regulations individuals are subjected to but have no control over. (from a book of the same title ) For a brilliant exposure of how the department for work and pensions uses this , if you can -see Ken Loach’s film ‘I Am Daniel’
Just like you Spruce are ‘I am Spruce’ and ‘I am Susanne’ not what others destructively define us as.
None of this would be addressed by the group which is suggesting the drawing up of a specific code of practice for making complaints – they are part of the problem. I would still go through the current processes for making complaints though as if the time comes when they can be used individually or collectively to change the system they will be useful – just a those who contribute to blogs are compiling a hugely important body of evidence.
Carla says
Sadly, gas lighters are everywhere and they exists amongst ‘professionals’ we trust.
https://www.verywellfamily.com/is-someone-gaslighting-you-4147470
Knowing, all too well what they are capable of doing, I do a runner. They never see me again!
Anne Marie says
The terrible thing with gas lighting is that if you become aware of being gas lighted you then end up suffering paranoia so much you then end up not trusting anyone at all. This can result in you not getting any help at all. Most vulnerably ill people are not capable of surviving all this unnessary excessive abuse.
I read today a politician say the Brexit referendum was only a black and white vote of in and out and it shouldn’t have been because it’s a vast rainbow of issues that’s involved.
It made me think of our own problems because the medical community only sees the positive results and not the negative results that we suffer. Medicines are like the rainbow issues this politician was talking about, every colour/issue/side effect needs to be seen recognised and if the medical community can not see and speak up for their patients then they really should not be in their jobs as they are a danger to their patients full stop.
Any professional should remind themselves why they do the jobs they do, is it for the patients or the drug companies?
Samantha says
I’ve had terrible issues with gastric drugs. I went to my gp with gastric issues of bloating and not being able to eat much food. I was already on up to 80mgs pantoprazole per day and had been on pantoprazole for twenty years. Prescribed metoclopramide, had an extrapyramidal reaction and was still having akathisia 7 months later. I realised that continuing to take pantoprazole may be causing my issues. I had already cut out my contraceptive with no ill effects a month before. When I cut pantoprazole I noted immediate changes. The rebound was horrific. I was awake for 18 days and my stomach did not work. It was frozen and my whole abdomen was bloated. I had breathing difficulty. I was so constipated I could not stand up. It took 3 months of taking calcium, magnesium and vit d to clear and 6 months for my stomach to work, something which I had difficulty with for years, just was never hungry, bur my stomach freezing after tge cut was a whole new level. I think the bloating and hunger issues were caused by the pantoprazole and set up the environment for the extrapyramidal reaction. Its only now when my stomach function seems to be returning that I have realised just how nasty pantoprazole was for me.