Over-Diagnosing or Under-Diagnosing

This post follows on from Repairing Ruptures in Clinical Care and the Future of Health App-Ointments.  It also links to An Appleby a Day and Tangled up in Bureaucracy.

Repairing Ruptures had a lot of comments from Lucy.  One of them kicks things off here.

Lucy’s Struggle

Since waking up to the adverse effects of psychiatric drugs, I have written countless letters to psychiatrists and GPs, telling them about my experiences of psychiatric harm and trying to inform them of the dangers of antidepressants. I sent Katinka Newman’s book to several psychiatrists. An article in a major newspaper covered my experiences of postnatal psychosis and I took part in a short film to give hope to people suffering with mental ill-health – sadly, it was before I realized the drugs were the cause, but my intentions were honourable.

I’ve spoken to groups of mental health professionals about the hell of my experiences. I have tried to warn friends and family about the dangers of antidepressants through my writing, social media posts and discussion. As a practice nurse, going against mainstream thinking, I’ve told numerous patients and colleagues about the potential adverse effects of antidepressants and the dangers of withdrawal. I’ve written to psychiatric teams many times to challenge inappropriate diagnoses and polypharmacy but have mostly been ignored.

I’m just one of tens of thousands of psychiatric survivors who are helping to get the message out there. We may not be an organized group (YET!), but many of us are busting a gut to challenge the status quo, even though it is massively triggering to do so – pushing ourselves out of our comfort zones we risk making ourselves ill in the process.

See Shane Cooke’s Discarded by GSK.

As Lucy says, she is just one of many.  She expects that their collective efforts will or should make a difference, but they likely won’t.  As an observer of this scene for over 30 years, my view is things are getting worse not better.  The Ruptures and Futures posts paint a grim picture. A.I. is more likely to support company narratives rather than empower ‘us’,

Thalidomide in 1962 illustrated that powerful forces can be quickly ranged against any acknowledgement a drug can cause a problem. Readers might wonder at an apparent alliance between Putin and Trump now, but this is less surprising than the alliance between ex-Nazis and Israeli scientists mobilized to defend thalidomide 60 years ago.

Despite this, it was still a matter of common sense centered on a rules-based-order that doctors would recognize novel problems a new drug caused soon after its release, and medical journals would report their observations, and clinical practice would become better in the sense of having more drugs with most of their drawbacks commonly accepted, giving doctors and patients more resources to draw on when treating serious conditions.

But this Scientific Stream that kept most of us living in a temperate medical climate has turned into a Guff Stream that has upended prior assumptions.  Something has turned medicines which once held the promise of enabling us to live the lives we wanted to live into Probity Blockers – vehicles to get us to live lives some corporate behemoths want us to live. Probity blockers that increasingly put obstacles in the way of us living the lives we want to live.

We can no longer depend on our doctors to be made of The Right Stuff.

Unless that is…. Unlike the decades long struggle Lucy and others face, Pride in Practice below illustrates that perceptions of medical common sense can be rolled over very rapidly. Doctors can be injected with The Right Stuff.  Are there lessons here for Shane and Lucy?

Pride in Practice

Medical generalists now face patients sent their way by gender partialists (or ADHD, sleep or other partialists – see Futures) diagnosed with ‘gender dysphoria’ or ‘gender incongruence’.  The partialist may have prescribed hormones or blockers but is sending the person back to a generalist for continuing prescriptions.

Good generalists, until recently, ordinarily did not want to rush into a prescription whether it be for hypnotics, stimulants or hormones. They wanted to see the person more than once and perhaps make a referral to a partialist when there was some chance the partialist would agree there is nothing wrong.

Which, until recently, respirologists, ophthalmologists, cardiologists and others asked by a generalist to see one of us and give a view did. They were likely to respond that there is nothing wrong with this man’s heart, lungs or eyes.  More recently the partialist might add a note – Functional Neurological Disorder? FND means hysteria, or psychosomatic problem. Unable to see a problem in our chest, heart or eyes, the easy option for a partialist is to locate it in our mind.

(The real hysteria here stems from partialism, which, while boxing doctors into a restricted view of a medical issue, primes them to view themselves as experts whose views count outside their limited area – when they don’t or shouldn’t).

An FND diagnosis gets us out of the partialists hair but condemns us to endless medical input from a system that will never again take us seriously.

Some generalists opt against shared care for gender dysphoria cases – opt not to work with gender partialists. They are likely to say something like we have had no training in this complex area. This translates as – if you, a partialist, want to go ahead and prescribe and monitor that’s fine but it’s not for us.

One problem with this is that the partialist has raised the expectations of the person referred and they are likely to be confused by a generalist’s refusal to engage. The partialist’s letter may stress the risk of suicide if the system doesn’t respond as required. An understandably confused person, or their family, may consider a complaint to the service company that employs these generalists or a complaint to a medical registration board.

Another problem is the gender transition movement has reached out to politicians and others. This has led to Quality Marking. In Britain generalist clinics can have Pride in Practice Certificates and Gold Awards, which are gained on the back of hard to refuse appeals to be respectful to trans people who consult them.

Mary and Shane’s psychotropic withdrawal group get zero support from their local health services in North Wales whose health services have spent the better part of a decade in Special Measures – this means they were Black Marked as a failing service with their mental health services failing in particular.

However some years ago, this badly failing service shot up from 199 to 72 on Stonewall’s list of LGBT friendly institutions.  The service had set up a special facility to provide residential care for transgender people with dementia. The media were briefed that this was needed as their transition might make these folk more confused than others later in life.

Regulators give the impression they will come down heavily on people who claim a treatment benefit without evidence. You will never hear a regulator say – of course herbs or vitamins work.

Off-label prescribing – using a drug without several controlled trials showing it works for condition X – is a mortal sin these days for regulators, managers, politicians, critics of medicine and many doctors.

But June Raine, when the acting head of Britain’s regulatory agency, said to a group of patients and their families who have Enduring Sexual Dysfunction linked to isotretinoin that surely doctors can remedy anything – these days they can even turn men into women.

Puberty-blocking drugs like Lupron (Made in AbbVie) are endorsed on all sides as is their use off-label to stop teens developing normally.

Around 2016, Medical Registration Boards like the General Medical Council in the UK, issued Guidance on Good Practice for Gender Medicine – stressing that generalists essentially should do what partialists recommend. Failing to do so would put patients at risk of suicide. There is no such guidance for the much higher risk of triggering a suicide by failing to support people withdrawing from antidepressants.

The British Medical Journal ran feature articles stressing (and ignoring) the same points  entertaining no explanation other than a failure of a doctor to comply would mean they were transphobic. The New England J of Medicine has done and continues to do the same to this day – see The Corruption of the NEJM.

I had spent a decade before that seeing transgender folk, older men mostly, for two reasons – one is they were decent people and the other was that most of my colleagues refused to see them so the only one willing to see them was me.  This was before a cat was thrown among the pigeons by the rapid onset of rapid onset gender dysphoria in young women, who started transitioning and soon after de-transitioning.

Amazed at the Tsunami that came our way around early 2016. I wrote to the GMC and BMJ – see link – ending with this point that looked pretty obvious.

Gender Identity issues in the United States now come wrapped in Title IX issues and the actions of the Office of Civil Rights. Over the weekend, there have been developments with the White House wading into the issue.  They may have set up an open goal for Donald Trump to shoot into later this year.  The issues are this big.

Reasonable Expectations

The outcome I noted in 2016 took longer to materialize than I expected but has since arrived in dramatic fashion.

In contrast:

• In 1999, I thought we’d have the suicide on SSRIs question sorted within a year of the Forsyth case – Nope. Helped I hoped by the BMJ – Nope.
• In 2000, I was fired by the U of Toronto for saying it was wrong that I, as an expert witness, should have access to company data that none of my colleagues could see. Incompetent enemies are sometimes the best possible friends. This firing helped put the hazards of the SSRIs on the map more than writing articles for the BMJ ever did. I thought we’d have things sorted soon. No joy.
• In 2001, the Tobin case and its verdict against GSK, would sort things. Nope.
• In 2004, New York’s Attorney General took a fraud case against GSK. Eliot Spitzer said this would change medicine for the better.  If anything things are worse.
• In 2012 GSK resolved a US Dept of Justice case for $3 billion, leading GSK to play a part in creating All-Trials. Sold as bringing Sense to Science, All-Trials has entrenched the ability of corporations to imprison us in the lives they want us to live rather than liberate us to live the lives we want to live.
• In 2015, despite the efforts of a BMJ editor, with links to GSK, to block the publication of Study 329, the article was published.  The Restored Study 329 is a great symbol of just how much the reality in which we are living is at odds with the claims for that reality.  A great symbol of how the establishment has become a major purveyor of misinformation. Could the system survive this – Yes it could.

Mary, Shane, Lucy and thousands of others crippled by drug induced harms, as Lucy notes, have reasonable expectations of being met sympathetically by doctors and treated decently but they aren’t.

Folk with drug induced injuries hold a gateway to Nobel Prizes. Observations like those of Anne-Marie – see Antidepressants, Alcohol and Anne-Marie – that her SSRI caused an alcohol use disorder are as good as Arvid Carlsson observations of patients’ observations that led to the creation of SSRIs – see Restoring the Magic to Medicine. People with PSSD have a condition that opens a door to a major new understanding of how medicines work and the same holds true for the enduring sexual dysfunctions other drugs cause and enduring visual and balance problems antidepressants in particular cause..

Yet, Mary, Shane, Lucy and others don’t seem to be able to prize open an entry into the system the way the gender dysphoria community has.  Why the difference? Is it because sex attracts interest where suicidality and dependence don’t?

Parallel Universe

Around 2000, a bright woman introduced me to Post-SSRI Sexual Dysfunction (PSSD). She asked if the bromide in her citalopram hydrobromide might have caused her problem.  She had found bromides were used by the British army in World War I to kill libido.  The Brits didn’t want a coalition of the willing between British men and French women. Although impressed with her research, I had to tell her bromides would not cause what she was describing.

She had been off citalopram for over 3 months and could take a hard bristled brush and rub it up and down her genitals and feel nothing.

This nailed the SSRI cause and PSSD effect for all time, There is no condition in medicine that can cause this severe form of what SSRIs can cause while you are on them.

Sex and drugs was surely an irresistible combination for the media. Nope.

The print and televisual media wanted nothing to do with the topic – they didn’t want to deter people from taking their drugs. See An Appleby a Day. The media, it seems, felt no responsibility toward the adolescents who were starting to take these drugs and might end up never being able to make love for the rest of their lives.

Many of my colleagues in Wales in 2016 figured people who wanted to change gender and insisted they were changing sex were insane but none of them ever detained a trans person in hospital or told the person they were insane and needed an antipsychotic as has happened to people around the world with PSSD.

In mid-February 2021, five years after predicting that the transgender tsunami might lead to a Trump triumph, I was left wondering if an event also involving DJT and sex may have triggered consequences a lot faster than I expected and might impact on the prescription-drug-induced-harm cause.

I gave a Sex and Evidence Based Medicine lecture for the Therapeutics Initiative in Vancouver. A good talk that starts with the sex lives of Eels.

Perhaps it can be better appreciated by cool heads now than it was in the moment. It contained a key slide aimed at making it impossible for folk to ignore, dismiss or forget the reality of PSSD. This caused uproar. The T.I. censored it in the version of the talk posted on their website. The full talk in its original and gory glory is in Sex and Evidence Based Medicine (EBM) link above.

In an echo of the Toronto Affair, a week later I got fired from a clinical post in Guelph. My first reaction was to link the firing to the lecture. I had circulated my colleagues in Guelph with details of the lecture a week before it happened. Some quiet medical lifers perhaps didn’t want a whiff of scandal and PSSD and the questions it poses about EBM is a scandalous story.

The dudes firing me made no mention of the Sex and EBM lecture. They said my practice was almost too good – if I was doing it privately and people could choose to come and see me rather than be streamed to someone else. Every service should have one of me but it was too awkward administratively for them to fit into the Guelph set-up those who:

• Wanted a doctor willing to consider tapering their medication burden – tapering in the sense of TaperMD – this was the reason I was hired.
• Wanted a doctor willing to contemplate the possibility that an adverse event they thought they were having actually was a treatment related adverse event.
• Didn’t necessarily want to be put on a medicine on the basis of one interview only.
• Figured it might be useful to be able to get hold of their doctor by email or phone at the drop of hat if need be – by phone or at weekends.

The early morning firing squad hadn’t thought through what they were going to do with the patients I was due to see later that day or the following day.  They had no resources to pick up the care of the 300 other people who had passed through my hands that year.  So I wrote to the recently seen, and due to be seen soon again, folk saying that I would not be able to continue seeing them but that I was not deserting them and they should have confidence in the things we had discussed as the management figured far from doing anything wrong, my care had been what some might call exceptional. The letter forestalled management lies.

The management explanation seemed incredible. In contrast the impression that the real reason was the Sex and EBM lecture seemed all too credible.

But there was another angle. The leader of the firing squad had trained with, and was a great admirer of, Neal Ryan – the main architect of Study 329.

Under-diagnosis

Just as Legal Systems make Verdicts, Doctors make Diagnoses. Many doctors view the Trans Tsunami as a classic case of Over-Diagnosis.

Looking at the suicidality, homicidality, sexual dysfunction, alcohol use disorder and other problems triggered by antidepressants, many doctors again point to over-diagnosis – too many people are being inappropriately put on these pills for mood or anxiety disorders or other problems. They are being diagnosed with disorders they do not have.

This likely sounds a not unreasonable point of view.

In 1990, 3 Boston clinicians diagnosed Prozac induced suicidality in 6 of their patients. Eli Lilly fought back claiming there was no evidence base to these diagnoses even though they did not get company doctors or other experts to assess these patients. Assisted by BMJ, FDA and other regulators, NICE and other Standards of Care, and Suicide Prevention Programs, they made this diagnosis essentially illegitimate.

Lilly’s argument – that only the doubly-blind can make a diagnosis – is obviously ridiculous.

And

• Within 18 months of the original article, 20 or so clinical groups, some very distinguished published similar observations to the Boston group.
• There was clear evidence in a deeply, likely intentionally misleading, BMJ article that the doubly-blind RCTs supported the position of those with Eyes Wide Open.
• Arvid Carlsson, the creator of SSRIs, agreed they could cause suicide.

Soon After

• Juries said it’s obvious these drugs can cause suicide and homicide.
• There was clear evidence company efforts to hide the truth breached regulations.
• SSRI companies were charged with fraud.
• SSRI companies were fined billions.
• It was clear the bulk of the literature on these drugs was ghost-written and even published in distinguished journals made claims directly the opposite of what the data showed when accessed.

Those who are injured by treatments and their doctors or anyone taking their side now have a operate in a world of Vampire Medicines.  The Double Blind means the chemicals that used to come with warnings and precautions now cast no shadow.

There was an old medical adage –

You are a Case of Valium I am going to give you Anxiety,
which became You are a Case of Prozac, I am going to give you Depression. 

We need an update on this adage.  Suggestions welcome.  Here is a starter.

You have become suicidal or have sexual problems,
stop going to your Doctor (Google) to get a Diagnosis   

 

Double-Blind Cure © Billiam James 2020