ME/CFS, at worst only short sessions, now somewhat better and tracking heart rate for PEM
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3 years
- Last post
- Jul 2026
In their words
- Condition: ME/CFS
I've been sick for a little over 2yrs and don't have a diagnosis but I am in queue to a me/cfs clinic
In context ↗ - At worst: Moderate
when I was at my absolute worst I took sessions online a few times. Max 30min but more often 20 once a month
In context ↗ - Now: Somewhat better
when I was at my absolute worst I took sessions online a few times ... all the rest still there
Read from 11 of their posts and comments; links to the 7 this page draws on
Summary
They became ill in early 2023 and more than two years on still had no ME/CFS diagnosis while waiting to see a specialist clinic. In June 2025 their thyroid problems returned and beta blockers left them barely able to eat. At their worst they could manage only 20-30 minute online therapy sessions once a month; by July 2026 they were working as a therapist, tracking their sleeping heart rate to head off PEM.
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What they tried
What they credit
Also tried
Their words about each treatment
- betablockers · Worse
got betablockers in the meantime. Now, they seem to have a really bad impact on my whole body.
In context ↗ - vagus nerve breathing, meditation · No change
I've tried vagus nerve breathing, benzo, meditation and then some, non of it does a thing when in that state.
In context ↗ - therapy sessions · Helped
when I was at my absolute worst I took sessions online a few times ... But it helped a lot.
In context ↗ - Amazfit band 7 / heart rate tracking · Helped
I just keep track of my heart rate while sleeping. When it suddenly goes up from 64 to 80 I know I need to do nothing at all for a few days.
In context ↗ - iron infusions · Helped
I gut a few iron infusions last year. Ferretin levels are ok and symptoms from hyperthyroidism better but all the rest still there.
In context ↗ - meds for hyperthyroidism · Helped
I now get meds for hyperthyroidism ... symptoms from hyperthyroidism better but all the rest still there.
In context ↗
Approaches: CBT & mindset · Pacing
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| 2023 | became ill, no diagnosis yetI've been sick for a little over 2yrs and don't have a diagnosisIn context ↗ |
| — | at absolute worst, could only do short online therapy sessions monthlywhen I was at my absolute worst I took sessions online a few times. Max 30min but more often 20 once a monthIn context ↗ |
| June 2025 | got much worse, ER visit; thyroid problems back and beta blockers made eating impossibleLast week I got much worse and went to the ER where they found out that my thyroid problems are back.In context ↗ |
| July 2026 | working as a therapist, using sleeping heart rate to head off PEMI work as a therapist so I've got many tools with me ... I still get PEM but I can kind of catch it and prevent it from being really horribly bad. |
Adverse events
- Beta-blockers (unspecified)“Now, they seem to have a really bad impact on my whole body. I can't eat and if I eat ever so little I get so much worse.” In context ↗ Made symptoms worse
- CBT and psychotherapy“It was hard and did make me a bit worse, then. But it helped a lot.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Brain fog
my brain ain't braining
In context ↗ - Post-exertional malaise
I still get PEM but I can kind of catch it and prevent it from being really horribly bad.
In context ↗ - Heart symptoms & palpitations
High pulse when sleeping = pem around the corner.
In context ↗ - POTS & dysautonomia
My blood pressure is always low but I haven't measured it since I got the medicine.
In context ↗ - Gut problems
I can't eat and if I eat ever so little I get so much worse.
In context ↗
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