14 mths Long Covid RHR 110 bpm ^ to 147 bpm *just* on standing. Still experiencing hypnagogic auditory hallucinations. There is an ongoing pathological process; it’s not rehabilitation patients need. #TreatLongCovid #pwLC #pwME #MedTwitter #MedEd #TeamGP
For anyone who thinks I’m exaggerating. Postural Orthostatic Tachycardia Syndrome (POTS) everybody:
Medics, if you haven’t heard of POTS pls educate yourselves. Many patients with Long Covid have a high resting HR (for the majority this is due to dysautomnia; a faulty autonomic nervous system, *not* anxiety). Some will also have POTs (i.e. ^ tachycardia on standing), as shown
My POTS is worse today because yesterday, I tried to *read* a document on Long Covid.
Not only was my autonomic dysfunction & POTs worse, but it also triggered a worsening of all my Long Covid symptoms: tinnitus, desaturating, chills, sore throat, otalgia, to name a few.
Not only was my autonomic dysfunction & POTs worse, but it also triggered a worsening of all my Long Covid symptoms: tinnitus, desaturating, chills, sore throat, otalgia, to name a few.
And before anyone accidentally misdiagnoses my autonomic dysfunction as anxiety. Anxiety does not cause positional changes in heart rate.
This worsening of symptoms after *mental* OR *physical* exertion is postexertional malaise (PEM)
Personally, I very much dislike the term postexertional malaise (PEM).
The name implies ‘malaise’ after ‘exertion’ - Surely this is normal? Everyone feels tired after exercise?
The name implies ‘malaise’ after ‘exertion’ - Surely this is normal? Everyone feels tired after exercise?
Except the ‘exertion’ isn’t working at 14 hour shift in A&E, or running a marathon.
It can be as little as climbing the stairs, trying to take a shower or having a telephone call.
It can be as little as climbing the stairs, trying to take a shower or having a telephone call.
And ‘malaise’ is not just tiredness.
Mental or physical ‘exertion’ triggers a worsening of ALL symptoms.
Mental or physical ‘exertion’ triggers a worsening of ALL symptoms.
PEM can be a feature of Long Covid, and is part of the diagnostic criteria for ME/CFS.
When patients tell you they have PEM - This is what they mean.
Pls take it seriously & treat both the condition, and patients with it, with the respect it, and they, deserve.
When patients tell you they have PEM - This is what they mean.
Pls take it seriously & treat both the condition, and patients with it, with the respect it, and they, deserve.
I dislike the term PEM. In my opinion, it seeks to normalise serious pathology.
If when speaking to my own doctor or colleagues, I were to instead say ‘I have autonomic nervous system dysfunction’, then I suspect PEM might be taken more seriously.
If when speaking to my own doctor or colleagues, I were to instead say ‘I have autonomic nervous system dysfunction’, then I suspect PEM might be taken more seriously.
Nor do I believe the term PEM was coined by accident. Certain members of the medical profession have spent decades actively seeking to psychologise a serious physical illness.
Attempts to psychologise physical illness *must* end. This change will start with medical education.
Attempts to psychologise physical illness *must* end. This change will start with medical education.
Patients with ME/CFS have had their symptoms dismissed for decades & have been victims of medical gaslighting.
Many dread having to speak to a doctor, for their past maltreatment has triggered the formation of PTSD.
Do *not* underestimate the trauma a lack of empathy can cause
Many dread having to speak to a doctor, for their past maltreatment has triggered the formation of PTSD.
Do *not* underestimate the trauma a lack of empathy can cause
Imagine being so unwell that getting a shower triggers a resting HR of 110 bpm.
And when you try to stand up, your HR increases to 147 bpm.
Then, upon seeking medical help, you were told you needed to gradually increase your exercise. It’s nothing short of barbaric.
And when you try to stand up, your HR increases to 147 bpm.
Then, upon seeking medical help, you were told you needed to gradually increase your exercise. It’s nothing short of barbaric.
The medical community will soon look back on their treatment of patients with ME/CFS with the same level of shame we now feel when look back at the treatment of those with depression in the 1960’s.
For those unaware, we used to lock people with depression up in lunatic asylums.
For those unaware, we used to lock people with depression up in lunatic asylums.
The only silver lining to this pandemic, is much research is now taking place across the world on post-viral illness.
My hope is that underlying pathological mechanisms will be uncovered & treatments found.
My hope is that underlying pathological mechanisms will be uncovered & treatments found.
So when a patient comes to you and says they have PEM, pls take it seriously. At the very least, believe them. This psychologisation of a serious physical illness *must* stop.
End.
End.
#MyalgicEncephalomyelitis #MyalgicE #ME #millionsmissing @doctorasadkhan @ClareRayner6 @shaun_qureshi @b_m_hughes @doctorsaz #TreatLongCovid #pwME #pwLC @BinitaKane
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