The use of an arbitrary alternative term, orthostatic tachycardia, is weird. There already are orthostatic intolerance, dysautonomia and POTS. It needlessly adds confusion to the issue
GPs will feel self-righteous handing out this stuff to patients as usual.
Infographic said:
Explain to patient: May be caused by overactive nerves to heart, but serious cardiac disease is unlikely ... Relaxation techniques such as yoga
(I have followed some of the advice on the infographic and have found it helpful in terms of symptom management, but it isn't treating whatever is the underlying cause.)
Last week I had an in-person appointment with an occupational health physician at my hospital (I got the sense may also be part-time GP). If doctors are said to make the worst patients, I'm sure doctors with ME could raise the bar, particularly if they're able to closely follow the latest research developments. It was over an hour and I resolved to assume the best, and aimed not to get off-piste with theories and conjectures. They had described themselves as "very knowledgeable about ME" and were certainly kind in manner and supportive. On the whole it went as well as I could hope, though it's unfortunate that given the pervasive BPS ideas and outright lying to patients that can occur, it's initially uncertain whether you can de facto trust what a new person is saying vs actually thinking.
Anyhow, there were two notable comments during the consult. One was "I disagree, you definitely don't have ME, because your numbers [tachycardia] do not meet criteria." This was after I had talked about ortho intolerance symptoms and also briefly mentioned my conceptualisation of their cause: esp. relating to reduced cerebral blood flow as pretty robustly demonstrated in publications. I did challenge this as
symptoms of orthostatic intolerance and asked what criteria this was based on. No answer, but insistence that ME requires 30+ BPM increase and without this I couldn't possibly have ME. I thought that was strange, but only one of us is living and breathing this stuff.
For reference, my initial POTS diagnosis was made by a cardiologist who has good experience in that area. I was seen very late in the day, when at my best, so didn't quite mount the 30+ BPM elevation at that time. This was recognised as likely under-representing the situation and they were perfectly happy that I qualified for the diagnosis on history, exam, with various rule-out cardiac investigations.
So back to my consult. The physician noted my sports watch and asked me to take a reading. This was sitting, 40 minutes in, during a calm and generally very sensible review and discussion. 67 stable over 20s — a perfectly normal and serviceable HR, even if my prior normal would have been mid 50s or lower. Asked to stand, I gently stood from sitting. It stayed unchanged for about 10 seconds and then went 74 - 83 - 109 - 115 over the next 10s. Hopefully that satisfied that question and I certainly didn't get the response of "how are you doing that?" that I think I recall reading from one of our members previously!
The other comment wasn't problematic as such and of course was very well-meaning, but is a modest example of the whole BPS philosophy and how publications such as
this one quoted below encourage medicine to think it's helping by "jollying us along". "Looking at your notes over the last 18 months, you have made great improvements from where you were and I'm very confident that you will recover completely." "I very much appreciate the sentiment and certainly hope that is true, but we can't predict this with any certainty. It can naturally recover, but can also last for decades and even deteriorate." (Good job "ME personality" isn't an official classification criterion, as I might now have qualified!)
Quote from NZ Doctor on cardiology management post COVID said:
You adopt a reassuring, supportive and “expectant” management plan, with advice to your patient to slowly increase her exercise over several weeks and months. With several reviews in the next few weeks, she recovers both emotionally and physically, and returns to her normal self.
Tilt Tests can also be unreliable but I am sure he didn't have one handy.
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