KerenL

Freelance writer. Regular contributor to the Guardian. Lover of open water swimming. And of Greece. Likes pools that aren't kidney-shaped and far horizons

[KerenL @KerenLL]

@PFMDwithPatient @ptsafetylearn

[KerenL @KerenLL]

At time

Invariably wrong symptoms
Invariably wrong nature of symptoms
Invariably wrong location of symptoms
Invariably wrong order
Invariably wrong priorities
Invariably wrong urgency
Invariably wrong department

[KerenL @KerenLL]

I think it might be a relation of eg 'baffled' and 'perplexed'

[KerenL @KerenLL]

A language plea

Please can we only use 'frustrating' for eg minor issues which can't be helped

[KerenL @KerenLL]

A language plea

Please can we only use 'frustrating' for eg minor issues which can't be helped

[KerenL @KerenLL]

@elisaperego78 I mean it's tempting at times just to cut to chase and say Covid can have 'a broad range of sequelae' and cut out the infuriatingly less important debate about whether the term 'Long Covid' could be improved upon

It isn't the point

[KerenL @KerenLL]

@DrGrahamLJ If ever there was an example of when it's worth 'Googling' it has to be 'holobionts'

[KerenL @KerenLL]

Or psychogenic, or psychological

Where it is none of these the difference is academic

[KerenL @KerenLL]

Luckily there are huge numbers of clinicians and researchers who know very well that Long Covid is not 'largely psychosomatic'

That said, if the equivalent of this kind of view (60-80% one) were to be expressed in eg the arena of politics there would be a deafening outcry

[KerenL @KerenLL]

Luckily there are huge numbers of clinicians and researchers who know very well that Long Covid is not 'largely psychosomatic'

That said, if the equivalent of this kind of view (60-80% one) were to be expressed in eg the arena of politics there would be a deafening outcry

[Long Covid Advocacy 💙 @LongCovidAdvoc]

We have discovered that Alan Levinovitz's new book has already sold to publishers

And it's about psychogenic illness. No wonder he thinks Long Covid is 60-80% psychogenic & why he won't reconsider his framing. He is invested

That a major publisher @HenryHolt is running this raises serious concerns

[KerenL @KerenLL]

I do think it's extraordinary that there are any clinicians out there proposing that 'psychosomatic' in this context is somehow a new thought

[Nicole Lee Schroeder, PhD @Nicole_Lee_Sch]

Whats so offensive to me about that Wired piece is that every single time there is a complex condition in medicine, and biomed cant immediately measure it, patients are told its psycosomatic. Esp if youre a woman. All in your head. You just have to want to get better

[KerenL @KerenLL]

@AutonomicBrad77 My sympathy as ever with any and all patients conveying that the blood flow / blood supply usual for them has changed from anything they recognise

[KerenL @KerenLL]

@NeleHelena Oh my goodness

‘Has anyone explained to you what ‘referred’ pain means?’

Yes, I don’t have it

‘I am not sure I have understood you correctly’

Oh yes, you have. And I understood you also

‘Psychosomatic doesn’t mean not ‘very real’’

Argghhhhh!!!!

[KerenL @KerenLL]

(Not that Oral Medicine performs dentistry, but it makes the point)

[KerenL @KerenLL]

@1goodtern It was as shocking to me that eg Oral Medicine should prescribe ‘Lifestyle changes’ in a context in which tooth then more teeth becoming necrotic (via stages of pain then lost sensation) as it would be were a psychiatrist to perform dentistry

[KerenL @KerenLL]

@pash22 @Chapman_GE ‘Fixed, false beliefs’ can come to be a hallmark of quite a bit beyond psychotic illness

‘Fixity’ included

[KerenL @KerenLL]

@1goodtern It was as shocking to me that eg Oral Medicine should prescribe ‘Lifestyle changes’ in a context in which tooth then more teeth becoming necrotic (via stages of pain then lost sensation) as it would be were a psychiatrist to perform dentistry

[KerenL @KerenLL]

@1goodtern Having forgotten on a few occasions in my life that I had left a candle burning in my home overnight the relief is immense that nothing happened to make it catch fire

[KerenL @KerenLL]

@LarcombePeter @ExNHSorthopod @Johnrashton47 Indeed

On both points

[KerenL @KerenLL]

@Imperial_PCPH @Azeem_Majeed Good to see ‘enabler’ written down

The impression you can form as patient is that The System so busy doing its ‘Protocol’ and ‘Protecting’ enabling is secondary consideration if one at all

That said defensive medical environment can make this apply as much in private sector

[KerenL @KerenLL]

@subversivepsych @drkeithsiau It wasn't as popular a diagnosis (ie misdiagnosis) as eg TMJs, atypical facial pain, Burning Mouth Syndrome, referred pain, psychogenic, FND etc but still featured during long interval in which no clinician took seriously what patient describing and clarifying, on repeat

[KerenL @KerenLL]

@subversivepsych @drkeithsiau They thought I had it too while focusing on pain which was never the issue. They then established this was not the case

It was one of a stream of preferred diagnoses and misdiagnoses at time. All based on the pain where the pain was never the point and I was always clear on this

[KerenL @KerenLL]

@1goodtern But not necessarily ‘linear’ in terms of previous health

[KerenL @KerenLL]

@1goodtern Different interactions also (in non specialised meaning of word)

[KerenL @KerenLL]

@1goodtern Equally the fact some have had a bad response to vaccines is a separate point from the fact of extensive damage by variants before any vaccines even available

As they say, ‘which part of that is hard to understand?’

[KerenL @KerenLL]

@1goodtern You are

But it’s the worst kind of insight that it’s necessary