Thanks for sharing your unique perspective with such dry humour, Richard. Honestly, if I wasn't laughing, I'd be crying.
What do they teach folks at med school these days? I know Lyme isn't included, which seems bizarrely myopic considering it’s an emerging infection.
Perhaps the Doolally are all too entrained in their binary logic of box ticking and flow chart following to connect with their inner 'House' (the fictional diagnostician played by Hugh Laurie in the naughties TV series). To some extent forgivable as a knock-on effect of our under resourced National Health Service, itself chronically sick.
In addition to groupthink though, how about the dangers of medical tunnel vision? There seems a woeful lack of cross communication between different medical disciplines. There's little joining up of any dots amongst parallel lines of tunnels. There's folly in the lack of cross pollination of ideas ...... and... we're back to groupthink.
Of all the syndromes without a cause included in my former diagnostic debacle, Functional Neurological Disorder had to be the motherload.
It appears those of us with fake Lyme (FND) can even be diagnosed remotely through social media and press articles. Amazing!
Prof. Stone seems to see chronic Lyme disease and some forms of MS, as a construct by which we as patients like to identify ourselves. Us patients must be a bit gaga anyway for believing in chronic Lyme. His special mission; to break down gaga patient constructs and spread the word of FND. He's keen to remove the associated stigma though to make it easier for us as dumb patients to accept a FND diagnosis. Maybe he'll transfer the stigma from FND and bank it with the Lyme stigma.
Ah, if only chronic Lyme symptoms were psychosomatic and not the result of being in the wrong place at the wrong time, probably whilst enjoying the great outdoors, blissfully unaware of the infected tick crawling up your leg.
I find all this particularly scary as I'm still traumatised from my own Doctor-Patient Lyme related farces. Functional Neurological 'Dysfunction' is on one of my hospital discharge papers and FND is now a pet hate of mine. Lately it’s also a 'rule in' diagnosis (thanks a lot Professor Stone)
I'm just an idiotic patient too. I was later found to have optic neuropathy and permanent partial vision loss which I stupidly thought might minimalise the 'faulty software' analogy favoured by FND protagonists. But the Doolally decided it was still FND (definitely not MS, and in no way was it Lyme in spite of my historic untreated bulls eye rash). What's a collective noun for neurologists? A numpty maybe?
Weirdly, my 'FND' symptoms are continuing to improve with combination antibiotic therapy. I don’t know how cognitive therapy cures optic nerve atrophy, but what do I know?
I wonder what Professor Stone would make of this study though;
There's a coincidence. FND and Lyme symptoms being caused by the same kind of neuro inflammation?
RIP Kris. Sadly, no mention in recent press announcements I've encountered of Kris Kristoffersen having had Lyme. Only that he suffered "memory problems". Maybe it was everyone else who forgot (his Lyme diagnosis).
So much for increasing awareness of Lyme disease....
Brilliant article! I was gaslit ten years ago when I was suicidal. Ended up almost in a wheelchair. Still here. Amazingly I recovered thanks to a near lethal dose of covid early 2020. Took out the parasites thx to five days of my temp at 41 degrees. Lucky I get another shot at life. Raising awareness is so important. Thank you for doing so. Emma
Thanks for sharing your unique perspective with such dry humour, Richard. Honestly, if I wasn't laughing, I'd be crying.
What do they teach folks at med school these days? I know Lyme isn't included, which seems bizarrely myopic considering it’s an emerging infection.
Perhaps the Doolally are all too entrained in their binary logic of box ticking and flow chart following to connect with their inner 'House' (the fictional diagnostician played by Hugh Laurie in the naughties TV series). To some extent forgivable as a knock-on effect of our under resourced National Health Service, itself chronically sick.
In addition to groupthink though, how about the dangers of medical tunnel vision? There seems a woeful lack of cross communication between different medical disciplines. There's little joining up of any dots amongst parallel lines of tunnels. There's folly in the lack of cross pollination of ideas ...... and... we're back to groupthink.
Of all the syndromes without a cause included in my former diagnostic debacle, Functional Neurological Disorder had to be the motherload.
Has anyone else come across Professor Jon Stone, FND specialist Extraordinaire’s diagnostic vignettes? https://www.youtube.com/watch?v=MPSDi-jBBXA (24:32 mins)
This looks like medical gaslighting taken to a whole new level.
And here's what could be a training guide on how to gaslight a problematic patient!
https://neurocom.be/uploads/Stone - Bare Essentials Functional Symptoms.pdf
My personal favourite is the paragraph on Page 3 of the PDF; 'ask what the patient thinks is wrong....'
There's more interesting reading for anyone remotely interested;
https://www.research.ed.ac.uk/files/89500363/JNP_19010025_au_SP_final_JS.docx
It appears those of us with fake Lyme (FND) can even be diagnosed remotely through social media and press articles. Amazing!
Prof. Stone seems to see chronic Lyme disease and some forms of MS, as a construct by which we as patients like to identify ourselves. Us patients must be a bit gaga anyway for believing in chronic Lyme. His special mission; to break down gaga patient constructs and spread the word of FND. He's keen to remove the associated stigma though to make it easier for us as dumb patients to accept a FND diagnosis. Maybe he'll transfer the stigma from FND and bank it with the Lyme stigma.
Ah, if only chronic Lyme symptoms were psychosomatic and not the result of being in the wrong place at the wrong time, probably whilst enjoying the great outdoors, blissfully unaware of the infected tick crawling up your leg.
I find all this particularly scary as I'm still traumatised from my own Doctor-Patient Lyme related farces. Functional Neurological 'Dysfunction' is on one of my hospital discharge papers and FND is now a pet hate of mine. Lately it’s also a 'rule in' diagnosis (thanks a lot Professor Stone)
I'm just an idiotic patient too. I was later found to have optic neuropathy and permanent partial vision loss which I stupidly thought might minimalise the 'faulty software' analogy favoured by FND protagonists. But the Doolally decided it was still FND (definitely not MS, and in no way was it Lyme in spite of my historic untreated bulls eye rash). What's a collective noun for neurologists? A numpty maybe?
Weirdly, my 'FND' symptoms are continuing to improve with combination antibiotic therapy. I don’t know how cognitive therapy cures optic nerve atrophy, but what do I know?
I wonder what Professor Stone would make of this study though;
https://www.news-medical.net/news/20210316/Researchers-identify-a-possible-cause-of-functional-neurological-disorder.aspx
There's a coincidence. FND and Lyme symptoms being caused by the same kind of neuro inflammation?
RIP Kris. Sadly, no mention in recent press announcements I've encountered of Kris Kristoffersen having had Lyme. Only that he suffered "memory problems". Maybe it was everyone else who forgot (his Lyme diagnosis).
So much for increasing awareness of Lyme disease....
Mel
Just read your great article on Lyme.org. Thank you Richard! Hope you are on a good path!
Moni from Oz
Brilliant article! I was gaslit ten years ago when I was suicidal. Ended up almost in a wheelchair. Still here. Amazingly I recovered thanks to a near lethal dose of covid early 2020. Took out the parasites thx to five days of my temp at 41 degrees. Lucky I get another shot at life. Raising awareness is so important. Thank you for doing so. Emma
Thank you for your comment and I’m very sorry to learn that you’ve had such s difficult time.
The article is not sarcastic. There is irony, but not sarcasm (which doesn’t win arguments).