ME/CFS
Severe → no benefitIll for 10 years
Severe ME/CFS, photosensitivity, nausea, vertigo; needs soft collar to sit up
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 10 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I have had severe MECFS diagnosed at the beginning of this year
In context ↗ - At worst: Severe
I have had severe MECFS diagnosed at the beginning of this year, and likely has been severe for 3-5 years.
In context ↗ - Now: No benefit
just upset at how much I’ve deteriorated
In context ↗ - Began after: nothing they could name
began getting unwell around the time I was 12-13 (I am now 23)
Summary
Orchid 92279, 23 and in Australia, dates onset to age 12-13, with strep, possible glandular fever and prolonged stress; ME/CFS was diagnosed after 10 years and has been severe for 3-5 years. A disability-payment application triggered a month-long flare of photosensitivity, nausea, vertigo and a heavy, unsupported neck. A soft collar helped sitting, but removing it brought near-fainting, lost vision and an ambulance call; they still cannot sit up long without it.
Ask Miruvor AI
What they tried
Also tried
soft neck collar· Helpedenergy drinks and supplements· Worse
Their words about each treatment
- energy drinks and supplements · Worse
I have tried energy drinks and supplements, but I find they make me more tired (due to heart issues + adhd)
In context ↗ - soft neck collar · Helped
After having the collar on for a bit I was able to tolerate sitting up out there a lot more than sitting up without it in previous days.
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| age 12-13 | became unwell, low school attendance, moved to online schoolI wholeheartedly believe I was mild prior to this through high school ... began getting unwell around the time I was 12-13In context ↗ | Mild |
| 3-5 years before 2026 | went from mild to severe ME/CFSI have had severe MECFS diagnosed at the beginning of this year, and likely has been severe for 3-5 yearsIn context ↗ | Severe |
| 2025-08 | working and seeing friends, needing to stay awake longerwith my job, and sometimes when I am with friends, I need to stay up longer than I’d typically be able toIn context ↗ | Moderate |
| September-October 2026 | flare after disability payment applicationfrom a slight push to get through all the steps in applying for disability payments, my symptoms flared upIn context ↗ | Severe |
| 2026-10-24 | almost entirely bedbound; took collar off and nearly passed out, ambulance calledI was almost entirely bedbound yesterday and could not find a comfortable sleeping position for the life of meIn context ↗ | Severe |
| 2026-10-25 | still cannot sit upright or move about for long without a soft neck collari now can no longer sit upright, stand or move around for very long without a neck braceIn context ↗ | Severe |
Adverse events
- “I have tried energy drinks and supplements, but I find they make me more tired (due to heart issues + adhd)” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogBreathlessnessGut problemsHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
other than all the classic PEM symptoms
In context ↗ - Brain fog
worsening brain fog
In context ↗ - POTS & dysautonomia
Sitting upright continued to cause dizziness, nausea, lightheadedness, vertigo and balance issues
In context ↗ - Sleep problems
happens at all due to sleep issues
In context ↗ - Pain & fibromyalgia
smaller shoots of pain that comes and goes radiating through parts of the shoulders, neck
In context ↗ - Light & noise sensitivity
Much worse photosensitivity (unable to tolerate screens
In context ↗ - Gut problems
More nausea, dizziness
In context ↗ - Breathlessness
struggling to breathe
In context ↗ - Heart symptoms & palpitations
as well as high heart rate
In context ↗ - Muscle weakness
muscle weakness, balance issues when sitting or standing
In context ↗ - Vision problems
within a few minutes I began to lose vision
In context ↗ - Temperature regulation
I broke out into an extreme sweat despite being in a tshirt and shorts
In context ↗