Stories of mis-diagnoses in the media

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

 

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.

 

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.

 

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

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

 

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.

 

Merged thread

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

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.

 

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...

 

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?

 

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.

 

a different person/article

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

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.

 

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

More at link.