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Replying to @PFMDwithPatient
Replying to @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
The System has more than a part in this also
NHS and Private
My experience and that of others that eg both attentive healthcare and defensive healthcare can build on themselves
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There should never be a ranking table as it doesn’t help
That said it can seem often that the interval between late 2019 and Spring 2020 was a bonanza time for securing long term systemic health damage
Replying to @CounsellingSam
Between late November 2019 and April 2020 my entire health changed
Via multiple stages of not being believed/reflected regarding what I was actually describing, 'why' I was so concerned, or what was usual for me and what really wasn't
Regardless of sector
Definitely still ok
And a massive improvement on the ‘inverted commas’ inflection that came for too long with any pronunciation of Long Covid
It can never be repeated too many times that a patient has two battles in this
The one with actual and worsening symptoms ‘and’ the one with (not) being heard
At the same time
Together with compromising your health, not being believed and reflected in what you are actually describing and why you are describing it can eat away at your identity and your credibility
Nothing to do with health sector
And a completely terrible experience
Personally I rank the sustained experience of not being believed, even about what symptoms and pain not even slightly like, together with having to start over with new clinicians, and being heard less each time, as the most betraying and profoundly stressful experience of my life
‘It sounds like what you're describing is kind of like a domino effect, where one thing triggers another, which triggers another, which triggers another, which makes it so hard to treat, right?’
Sequelae, and sequelae of sequelae …
Grateful to @NPR for the chance to talk about how stress and infections like COVID can stir dormant viruses in our bodies, and what that may mean for our immune system. Still much to learn, and I’m thankful to my team and colleagues for their work 🎧 npr.org/2026/10/23/nx-s1-598…
My second thought was that having conveyed to clinicians that had tooth then more teeth becoming necrotic (via alarming stages of pain then lost sensation) I was prescribed 'lifestyle changes', and CBT
Replying to @mgtmccartney @BBCFrontRow
My first thought on reading term 'Social Prescribing' was to wonder what it means
And think all sorts of sides of this same coin eg
'MUS' coming, at times with startling ease, to mean 'therefore we will work on basis issue not happening'
And eg 'if we can't (yet) cure/treat best not to diagnose'
Think latter can be divide between patients and clinicians
Replying to @NeleHelena
Yes think this is fundamental
And an 'I don't know' or even 'I am not sure' 'so' issue is (therefore) psychological is not in fact saying 'I don't know' at all
There can be tendency to suppose patients can get 'upset' by psychologising of what is not psychological because it's 'insulting'
Would say this literally beside point
Point is that it can give no chance at all to related care/related action
And be insulting because of this
Replying to @PaulGadsden82
I don't suffer from ME but relate completely to eg the idea that to treat as psychological what definitely isn't has the capacity to do and be so much worse than putting patient back to square one
It can be a complete shut down of related action while actual symptoms worsening
If 'Lessons will be learned' and 'Lessons have been learned' are to remain as standard responses surely they need to come with an explanation or demonstration of what this looks like eg
What has been learned?
Which part of healthcare has learned it?
How do we know it is working?
All between late November 2019 and April 2020
As ever mean this literally
Also literally meant eg: blood supply, necrotic, leached, lost sensation, tooth, more teeth, temperature change, skin suddenly thinned, new high colour on cheeks, new and sudden loss of usual muscle power in legs
Everything described literally meant
This alongside eg non sequiturs like
‘People can have necrotic teeth for years without issue’
And
‘Patients can still have the pain after root canals’
last straw
Replying to @KerenLL
What I was so emphatic about was ‘that’ more teeth were becoming necrotic
‘that’ this accompanied by leached sensation was beyond alarming
‘that’ my gums changed colour
‘that’ the lost sensation even more alarming than the pain
And my goodness, even in a universe in which eg grief and being distressed causes teeth serially to lose blood supply, CBT and 'lifestyle changes' would still not be a way to address
The suggestion of both genuinely horrifying given predicament was in
I was referred, without related action having been taken on actual symptoms rather than on symptoms clinicians most comfortable with them being (and which they were not) with an introduction of:
'Kindly review this lady with psychosomatic symptoms'
They were so importantly not



