Stories of mis-diagnoses in the media

[SNT Gatchaman]

Imagine if this passage could be written instead —

Now, I am being looked after, and it’s so reassuring – there’s always somebody on the end of the phone, including specialist ME nurses. ME nurses are amazing; if I have to leave a message, they always call back and, depending on your issue, they can speak directly to neurologists and refer patients accordingly.

They are very kind and caring, and I feel very lucky to have access to their help in my area. Charities like the ME Trust are also incredibly helpful. You’re not alone.

That’s not to say it’s been easy. Daily symptoms of ME can be hugely unpredictable; one day you might feel OK but the next, you might not be able to get out of bed.​

 

[wabi-sabi]

Of course MS is a psychosomatic disease. [sarcasm]
There's a new paper out on it.

"It includes the first mapping of maladaptive beliefs and behaviors arising from developmental challenges that are common to people with MS. An initial comparison shows these may be distinct from those of people with other chronic diseases. These beliefs and behaviors form the predisposing factors and contribute to the triggering factors, which are the acute stressors triggering disease onset. These often took two forms, a prolonged incident experienced as feeling trapped or stuck, and threat of a breach in a relationship." my bolding

https://www.frontiersin.org/journal...ence/articles/10.3389/fnint.2024.1365672/full

 

[bobbler]

Imagine if this passage could be written instead —

Now, I am being looked after, and it’s so reassuring – there’s always somebody on the end of the phone, including specialist ME nurses. ME nurses are amazing; if I have to leave a message, they always call back and, depending on your issue, they can speak directly to neurologists and refer patients accordingly.

They are very kind and caring, and I feel very lucky to have access to their help in my area. Charities like the ME Trust are also incredibly helpful. You’re not alone.

That’s not to say it’s been easy. Daily symptoms of ME can be hugely unpredictable; one day you might feel OK but the next, you might not be able to get out of bed.​

and being given the right advice, instead of confidently told by someone who is convinced by the wrong ideology.

But yes, that was the exact same part that came alive for me.

The idea that all of this suffering is about money is something I'd like to probe one day, because I'm not sure there isn't a heck of a lot being spent on the wrogn things and there is certainly if you think in economic terms a lot of saving a penny and causing a fortune to be lost. What could our lives have been if support had been the right thing at the right time.

The thing with ME is that the excuse is used of 'no treatment/cure' is used to infer there is nothing they can do and it isn't a medical problem.

But people fail to realise that (and this sort of overlaps with the article this week about heartsink moment) for many with ME, if it is persistent, then there are huge differences in severity, outcome and ability to live and contribute made by the cumulation of taking away what the health system in the last decade or so has seen as 'the small things' (not being prescribed hayfever or sinus meds, leaving skin conditions untreated and so on all add up), and adding in 'nudges' (making it really hard to get prescriptions, wasting energy).

So changes to save those pennies for example had a direct impact on people like me in severity because that added time and energy didn't mean my ailments disappeared, just meant that it stole half my energy envelope or if I couldn't get hold of one then yes they were serious enough on top of what couldn't be treated to exacerbate those and add the untreated issues on top. And it made, when it mattered and was resurrectable the difference between having any life opportunities like work and family with adjustments vs being eventually losing all independence and still chasing prescriptions becomes the task breaking you.

Simple things like whether someone has a car park space near or half a mile away add up over a year to someone's health being able to work then being so bad they can't. And it is all so unnecessary, no skin of any nose, unlikely to be takne the mick out of, and seemingly 'on principle' rather than for anything else. And switching that issue off after a year doesn't give them that health back (which is the bit most don't understand), so the dilly-dally of doing it eventually means it is a drop in the ocean vs their now lower threshold. Yet even when we are believed it seems we have to 'prove it will harm' first [by getting worse, without them acknowledging when we do get worse we aren't going to get better for a very long time if we do at all] - the terrible part of the vicious circle of ME being we need to get ahead of it but live in a world that insists on the other way around.

That part feels utterly fixable. And doesn't need difficult scientific breakthroughs, just judicious and unbiased record-keeping by what probably now needs to be independent medical-based clinics because GPs have been so misinformed. In order to then be providing proper prognosis information back to said GPs instead of the deluded fatigue clinics who think there is such a thing as pacing up. And have behavioural-only skillsets. So can't really see what's in front of them health-wise, or more accurately hear an accurate report and not misogynistically re-interpret it as 'self-neglect' or 'being pessimistic' or a motivational issue instead of 'can't'.

edited to add: I think one simple thing I'm saying is that one thing medical clinics for ME/CFS can do immediately is take a patient and make sure that for all of their other ailments they actually get treatment for them instead of being messed around. SO their added sinus, skin etc problems - areas that have been actively targeted in the last decade to remove prescriptions for (as if these things aren't bad) - are treated and don't make their ME worse and their ME means those are worse. Instead of being given the run-around when the political winds are such to deliberately make those things hard to get (which targets those with ME in particular) on a belief that on their on each of those small issues aren't that bad.

 

[wabi-sabi]

The idea that all of this suffering is about money is something I'd like to probe one day,

There's a researcher I like at University of Colorado, Daniel Goldberg, who looks at disability stigma and disability payments/accommodations. Looking at the history of railway spine, he clearly connects it to money. People claiming to be hurt in railway accidents were entitled to payment by the railway companies. Railway companies tried to prove that the people were faking their pain/disability, thus they were not legally or financially responsible. Whether the pain is real or all in your head is a financial question. It's a short journey from there to the BPS model, where you don't need real (expensive) care or assistance because your disease is curable with 8 weeks of CBT.

https://mh.bmj.com/content/43/4/238.long
Goldberg DS
Pain, objectivity and history: understanding pain stigma
Medical Humanities 2017;43:238-243.

 

[bobbler]

There's a researcher I like at University of Colorado, Daniel Goldberg, who looks at disability stigma and disability payments/accommodations. Looking at the history of railway spine, he clearly connects it to money. People claiming to be hurt in railway accidents were entitled to payment by the railway companies. Railway companies tried to prove that the people were faking their pain/disability, thus they were not legally or financially responsible. Whether the pain is real or all in your head is a financial question. It's a short journey from there to the BPS model, where you don't need real (expensive) care or assistance because your disease is curable with 8 weeks of CBT.

https://mh.bmj.com/content/43/4/238.long
Goldberg DS
Pain, objectivity and history: understanding pain stigma
Medical Humanities 2017;43:238-243.

Yes in that sense that is the driver behind it.

I worded things badly there. What I actually meant was I'm not sure re: the suggestion that (and I was reminded of it when I saw recently a thread where someone posted comments in response to the draft 2007 Nice guideline from the British Psychological Society noting that CBT is an expensive treatment) the BPS approach to treatment is cheaper or saves money (which is what eg IAPT sold itself on with LTC 'treatment' some of their presentations suggested cheap at any cost type things whilst claiming people had huge amounts of appointments).

If someone with ME was looked at with regards lifetime cost, and prognosis vs adjustments was understood I get the sense that a few not very expensive adjustments and making sure that smaller conditions are treated rather than messed around with (I have a sense pwme are particularly vulnerable to that cost-saving because we are more vulnerable to having other things due to our 'untreatable underlying condition') keeping people from getting worse is a heck of a lot less cost to a health service than what certain empires might be getting funded for their CBT and GET.

Same thing for there being little to no cost (just principle) about whether someone milder gets a parking space near their office from an employer, vs the long term impact for these types of adjustments (that are made or not made often based on whehter it is deserved) being that they add up and deteriorate someone to ending up severe and not just unable to work but unable to be independent. And would be done for other illnesses. And seem a one-off regarding time or cost.

 

[rvallee]

Of course MS is a psychosomatic disease. There's a new paper out on it.

"It includes the first mapping of maladaptive beliefs and behaviors arising from developmental challenges that are common to people with MS. An initial comparison shows these may be distinct from those of people with other chronic diseases. These beliefs and behaviors form the predisposing factors and contribute to the triggering factors, which are the acute stressors triggering disease onset. These often took two forms, a prolonged incident experienced as feeling trapped or stuck, and threat of a breach in a relationship." my bolding

https://www.frontiersin.org/journal...ence/articles/10.3389/fnint.2024.1365672/full

So they took the old stuff, shook it a bit, and called it new.

Despite this, even homeopathic water has more substance to it.

 

[wabi-sabi]

Same thing for there being little to no cost (just principle) about whether someone milder gets a parking space near their office from an employer, vs the long term impact for these types of adjustments (that are made or not made often based on whehter it is deserved)

Yes, I think it very much comes down to what healthy people think we deserve. For example, I have heard things like disability payments and disability accommodations being referred to as secondary gain. It's a shocking misunderstanding of how disability and accommodations are meant to work.

But it's also as you mention, the principle. Do we believe that sick and disabled people need extra help and should have it? Or is extra help a perk that we must earn? Is it a matter of what we deserve, not what we need? In order to give someone a closer parking spot, society must believe our disability or illness is real and that help will benefit us and them.

 

[bobbler]

Yes, I think it very much comes down to what healthy people think we deserve. For example, I have heard things like disability payments and disability accommodations being referred to as secondary gain. It's a shocking misunderstanding of how disability and accommodations are meant to work.

But it's also as you mention, the principle. Do we believe that sick and disabled people need extra help and should have it? Or is extra help a perk that we must earn? Is it a matter of what we deserve, not what we need? In order to give someone a closer parking spot, society must believe our disability or illness is real and that help will benefit us and them.

One thing I have noticed these days is how few and far between disabled parking spaces are. Particularly in places like hospitals where you'd anticipate there would be more than eg 4-5 people needing to use it who have mobility issues, and not a drop-off zone. But also high streets, where you might have one space (which might make sense if it might go unused and all the rest prime) but it is at one end and not in the middle meaning if someone needed to visit a shop or service at the other end which again might be a chemist or optician then it is a distance that mightn't seem significant unless you are disabled but could make all the difference.

And that obviously doesn't distinguish by condition.

I don't know whether this is a change that has happened over the years, and note I remember it being reported that during covid with the additional eg supermarket regs then it was disabled spaces that ended up being disappeared for the queues

So I know attitude to disability isn't great out there. And probably all that holds many back is taboo and their own reputation in the eyes of others. Or laws (eg in employment) and if they think they will be enforced.

So the muddying the waters with BPS ideas and 'challenge' approaches just speaks to the natural selfish instincts of some (I've observed that in friends it comes from their own innate laziness that I never had, of just avoiding work or helping with something 'for the sake of it' which I don't understand but has become even more clear as my health got worse and I wasn't just happy to be the pack horse for the sake of 'getting along', they just came up with new rotten excuses to put themselves first like 'it's so hard having kids'... frankly it has been eye-opening). And I think a lot of work stuff is about those whinge-bags and they don't realise that giving into them suggesting its a debate will mean they will never stop.

But yes it sets us up as low-hanging fruit, the disabled that you are allowed to bully. And taunt, and make life hard for 'because it might be good for them' nonsense.

I just think it is worth debunking the idea that everyone around us if they weren't closing their eyes and deluding themselves can't see that from a longer term perspective it makes economic sense. For the sake of a little bit of give for a few years, they instead of giving someone a chance to get their feet back under them instead bury them forever health-wise.

 

[Sly Saint]

Merged thread

Woman's palpitations brushed off as 'stress' before she died at 32

The family of a 'healthy' 32 year-old who suffered a shock death have urged young Brits to be persistent with doctors, after the tragic Manchester woman's symptoms were dismissed as 'just stress'.

Rhian Griffiths, who lived in Sale in Manchester, had suffered breathlessness and a racing heart for two years and a half years.

But medics — including an A&E doctor — consistently said her problems were related to stress, according to her sister, Ffion Griffiths-Armstrong, 31.

In March 2023, hours after telling her family that her heart was 'playing up', the surveyor was found unresponsive by her mother, having suffered a cardiac arrest.

Following her death, the family were told Ms Griffiths suffered an undiagnosed heart complication called myocarditis, which can weaken the heart muscle and increase the risk of deadly complications including heart attack and stroke.

Now, Ms Griffiths-Armstrong is urging people not to ignore any worrying symptoms and push for a diagnosis.

Ms Griffiths first experienced the palpitations after contracting Covid in September 2020, and sought help at her local A&E department, according to her sister.

'She had all the checks but was discharged the next day and was completely fine,' said Ms Griffiths-Armstrong.

Woman's palpitations brushed off as 'stress' before she died at 32 (msn.com)

 

[Ash]

Woman's palpitations brushed off as 'stress' before she died at 32 (msn.com)

How terrible
She was fatally let down.

I’ve been struggling since 2020 to get doctors to take my Covid triggered heart & lung symptoms seriously, with exactly no success. I’ve lost count of the LC sufferer losses from heart or vascular complications cohort of 2020.

People just dropping dead at younger ages after being told that they’re fine at such a rate.

Its not just Covid directly it’s the fact that “our NHS is overwhelmed” in no small part because Covid is destroying the health of all of us, and we’re just pretending it’s not happening.

The doctors are off sick the nurses the receptionists the radiologists, off sick with another ‘cold’ or ‘virus’.


You quite literally have to forget Covid exists here. I’d love to see the internal memos because people physically seize up and go silent when you mention Covid to anyone in the NHS.

 

[V.R.T.]

There were leaked memos going round the covid groups a while back where it was literally NHS policy not to test for covid if you were sick. Like if you took a covid test and it was positive you got in trouble.

Are we seeing a trauma response at an institutional level? This inability to acknowledge covid? I understand why govt and business want it disappeared but as to why Drs are playing along - maybe they find masking/seeing masks etc traumatic. It must have been hell for them in 2020/21. It's no excuse for the ableism they show to anyone who needs to take precautions but still I wonder...

 

[Ash]

I’ve just read the full article and I am confused, was she in hospital when she died?

What are the tests that they could have given her to find the myocarditis?

 

[SNT Gatchaman]

I’ve just read the full article and I am confused, was she in hospital when she died?

Yes. She'd been seen at A&E and discharged previously but was admitted for overnight observation. She was possibly on an ECG monitor though may not have been. It sounds like she went into unrecoverable cardiac arrest at 1-2 am.

What are the tests that they could have given her to find the myocarditis?

Standard tests include ECG, echocardiogram, possibly stress ECG/echo. The more specific / gold standard tests are endomyocardial biopsy (invasive) and cardiac MRI (non-invasive). I imagine most diagnoses are confirmed on CMR but you can also do nuclear medicine: scintigraphy or PET.

A review article is —

A Review of the Role of Imaging Modalities in the Evaluation of Viral Myocarditis with a Special Focus on COVID-19-Related Myocarditis (2022)
Adeboye, Adedayo; Alkhatib, Deya; Butt, Asra; Yedlapati, Neeraja; Garg, Nadish

Viral myocarditis is inflammation of the myocardium secondary to viral infection. The clinical presentation of viral myocarditis is very heterogeneous and can range from nonspecific symptoms of malaise and fatigue in subclinical disease to a more florid presentation, such as acute cardiogenic shock and sudden cardiac death in severe cases.

The accurate and prompt diagnosis of viral myocarditis is very challenging. Endomyocardial biopsy is considered to be the gold standard test to confirm viral myocarditis; however, it is an invasive procedure, and the sensitivity is low when myocardial involvement is focal. Cardiac imaging hence plays an essential role in the noninvasive evaluation of viral myocarditis. The current coronavirus disease 2019 (COVID-19) pandemic has generated considerable interest in the use of imaging in the early detection of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2)-related myocarditis.

This article reviews the role of various cardiac imaging modalities used in the diagnosis and assessment of viral myocarditis, including COVID-19-related myocarditis.

Link | PDF (Diagnostics) [Open Access]

 

[Ash]

Yes. She'd been seen at A&E and discharged previously but was admitted for overnight observation. She was possibly on an ECG monitor though may not have been. It sounds like she went into unrecoverable cardiac arrest at 1-2 am.



Standard tests include ECG, echocardiogram, possibly stress ECG/echo. The more specific / gold standard tests are endomyocardial biopsy (invasive) and cardiac MRI (non-invasive). I imagine most diagnoses are confirmed on CMR but you can also do nuclear medicine: scintigraphy or PET.

A review article is —

A Review of the Role of Imaging Modalities in the Evaluation of Viral Myocarditis with a Special Focus on COVID-19-Related Myocarditis (2022)
Adeboye, Adedayo; Alkhatib, Deya; Butt, Asra; Yedlapati, Neeraja; Garg, Nadish

Viral myocarditis is inflammation of the myocardium secondary to viral infection. The clinical presentation of viral myocarditis is very heterogeneous and can range from nonspecific symptoms of malaise and fatigue in subclinical disease to a more florid presentation, such as acute cardiogenic shock and sudden cardiac death in severe cases.

The accurate and prompt diagnosis of viral myocarditis is very challenging. Endomyocardial biopsy is considered to be the gold standard test to confirm viral myocarditis; however, it is an invasive procedure, and the sensitivity is low when myocardial involvement is focal. Cardiac imaging hence plays an essential role in the noninvasive evaluation of viral myocarditis. The current coronavirus disease 2019 (COVID-19) pandemic has generated considerable interest in the use of imaging in the early detection of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2)-related myocarditis.

This article reviews the role of various cardiac imaging modalities used in the diagnosis and assessment of viral myocarditis, including COVID-19-related myocarditis.

Link | PDF (Diagnostics) [Open Access]

Thank you very much @SNT Gatchaman for this information.

It seems like this patient and her family were badly let down. I am sure that they would have trusted that she would be given the tests needed at one of her many presentations and especially while admitted.

I doubt that there is the capacity in our de-funded, de-staffed, insufficiently equipped, pandemic ravaged health system to give people the tests they need and save lives.

I hope advances in this technology and assessment you mention will soon come and help people.

 

[Sly Saint]

a different person/article

Christina Applegate recalls ‘first sign of MS’ while filming Dead to Me pilot

“I remember falling that day. Hi, first sign of MS!” she said to the show’s creator Liz Feldman on Applegate and Jamie-Lynn Sigler’s MeSsy podcast, recalling a sequence in which her character Jen was running across a field.

Feldman said: “I remember you losing your balance a couple of times but it was very hard to figure out. I remember one time it was like really late at night, we’d been shooting probably 14 or 15 hours, it seemed completely reasonable that anybody would be collapsing.”

Speaking about slowly realising Applegate had a condition, Feldman added: “There’s no handbook for this. I could just sense that A, she was scared and B, that something was wrong, something in her body was not working the way that she wanted it to. I told her so many times that it’s just a TV show; we’re making a TV show and it’s so silly, you know, at the end of the day!

“I knew Christina well enough to know that something major had to be going on because she’s an extreme professional.”

On the NHS website, MS is described as “a condition that affects the brain and spinal cord. It cannot currently be cured, but treatment can often help manage it.”

Symptoms can include extreme tiredness, vision problems, numbness in parts of the body, being off-balance or dizzy, muscle cramps and spasms, urination issues, memory problems, and sexual dysfunction.

Christina Applegate recalls ‘first sign of MS’ while filming Dead to Me pilot

this could just as easily be someone with ME, yet what a difference in attitude towards the sufferer.

 

[Mij]

Merged thread

UK: Article in the Metro:
I told the doctor my symptoms, then I saw an eye roll

Finally I had the diagnosis I’d been searching for, for 19 years

In 2020 I had a relapse – where new symptoms arrive or old ones get worse –  that was so catastrophic it left me with a numb left side, limping, falling asleep in unexpected places and feeling constantly queasy until eventually I landed in casualty.

Another MRI scan (I’d lost count of the number I’d had by then) was ordered, only this time, it showed that my brain was peppered with scarring where MS had damaged my brain and spine. 

In all likelihood, I’d had MS this whole time but the scarring before this major attack had always been minor and therefore didn’t show up on tests. Now though, the damage was pronounced and dramatic making it impossible to miss.

You’d think, after all that time I’d be ready for it. Yet, in spite of the multiple times I’d been told I might have MS, it came as a huge shock and left me feeling unmoored and afraid for the future.

Oddly, I also felt relieved and validated. Everything made sense.

More at link.