Thread by @doctorasadkhan

I’ve just been made aware of a #POTS management clinic run out of @uclh autonomic service. Brace yourself. I’ve had feedback from an attendee and it isn’t good. @UKPoTS you may be aware of this @YorkCardiology @dysclinic it’s awful 1/n

Run by 2 specialist nurses. Some jewels:
“We learn to think in particular ways
These ways may not always be helpful when you have ongoing health issues. Unhelpful thinking can increase symptoms. 2/n

These thoughts are automatic, you may not even be aware of them, until we train ourselves to think differently”
Hypervigilance, particularly of body sensations is a common thinking pattern in PoTS”
The website neurosymptoms.org was recommended for dissociative symptoms 3/n

Logic- this was relevant when people reported symtoms which they believed that they experienced but were not caused by PoTs.
This website is an FND resource!They claimed that patients responded to their approach to dissociative symptoms! 4/n

ZERO mention of pharmacological approaches- beta blockers, ivabradine, midodrine. Apparently they had used medication in the past but due to ‘inconsistent response’ they had changed their approach 5/n

The lead nurse of this ‘autonomic nursing team’ asked that if anyone had any (thought-based) strategy for being able to ignore PoTs symptoms they should contact her as she would be very interested to hear them. 6/n

Some examples of claimed ‘unhelpful thought patterns’

-Thinking the worst
‘The palpitations are so bad, it must be my heart

-Predicting the worst
‘I will never feel better’

Question your thoughts

Is this really true?

Is there a different way to think about this?” 7/n

They stressed the clinic was ‘evidence based’ however none of the above is. This is dangerous nonsense. @uclh this service of yours is peddling pseudoscience. Not only is this ineffective, but patients will get worse if they do not receive proper biomedical treatment 8/n

@Dysautonomia @DysSupport #MECFS #LongCovid #Lyme #Fibromyalgia #HSD #EDS #MCAS
These are excerpts from the slides & the accompanying oral presentation by the ‘autonomic nursing team’.

I have #POTS. It is a dreadful, disabling organic condition. It requires biomedical investigation & drug treatment. Fluids, electrolytes, compression are key.
It is NOT caused by ‘unhelpful thought patterns’.
There is ZERO evidence for the nonsense being peddled by this clinic.

This is the unit the clinic is run out of uclh.nhs.uk/our-services/f…