Very severe and bedbound with ME/CFS, now small gains from GLP-1 micro-dose and ADHD meds
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- Not stated
- Last post
- Jun 2026
In their words
- Condition: ME/CFS
KPV helped me a lot when I was on the border of very severe and severe (constantly fluctuating both) during a PEM episode last year.
In context ↗ - At worst: Very severe
I used to be very severe and by luck was I just severe now
In context ↗ - Now: Somewhat better
Not quite recovered but it's a stark difference between having to watch your vitals drop every day and praying to stay awake.
In context ↗
Read from 17 of their posts and comments; links to the 12 this page draws on
Summary
Breeze 94049 had ME/CFS with POTS, MCAS, hEDS and a neck injury, and was very severe and bedbound with a heart rate in the 30s-50s, hypoxia and fainting. KPV from December 2025 stopped gut bleeding and lifted inflammation and suicidal thoughts; in May 2026 a GLP-1 micro-dose and ADHD medication brought small gains, and by June 2026 they had a first shower without crashing and were brushing their teeth daily, though they remained not recovered and bedbound.
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What they tried
Also tried
Their words about each treatment
- KPV · Helped a lot
When I first started kpv in December it was amaze. Was the only thing to make my gut stop bleeding
In context ↗ - ARA 290 · Helped
KPV + ARA 290 have helped
In context ↗ - GLP · Helped
It helped indirectly. I was able to eat more food and.. it actually sped up my digestion
In context ↗ - ADHD meds (atomoxetine) · Helped
I did get started on atomoxetine ... the ADHD meds specifically gave me so much mental clarity
In context ↗ - nic patch · Helped
my nic patch helped the fever!
In context ↗ - luteolin · Helped
I was fine on nic patches and luteolin
In context ↗ - caffeine · Helped
Caffeine helps me during tachycardia
In context ↗ - cold baths / ice bath for feet · Helped
I have pots as well so the cold really help me stay awake and conscious.
In context ↗ - breath work / humming exercises · Worse
But, usually too stimulating and I just crash after now
In context ↗ - red light · Helped
red light helps when I absolutely need light for something or a virtual appt and my eyes are fatigued from visual stimulation
In context ↗ - eating the same type of food everyday · Helped
also having the same type of food everyday
In context ↗ - better prescription glasses · Helped
having a better perscription apparently relaxed my scalp, head, and shoulders so much I fell asleep after wearing them for 15 minutes
In context ↗ - being nonverbal · Helped
also being nonverbal helps immensely
In context ↗ - carb heavy meals (healthy carbs with healthy fats) · Helped
carb heavy meals(like healthy carbs with healthy fats) help me a lot during those confusing stages
In context ↗
Approaches: GLP-1 drugs · Pacing · Peptides
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | long-standing ME/CFS, with a remission of about two years in the pastI've had spontaneous symptom remission in the past and it was an incredibly tough and lonely transitionIn context ↗ | Not stated | |
| 3-4 months before December 2025 | neck injury from a fall left them utterly illI was so utterly ill the day of the neck injury that it was obvious I would need surgery.In context ↗ | Very severe | |
| December 2025 | started KPV; gut bleeding stopped and inflammation and suicidal thinking liftedWhen I first started kpv in December it was amaze.In context ↗ | Severe | |
| May 2026 | despair, planning a walk to die slowlya month ago I was planning on going on a walk to die slowly and peacefullyIn context ↗ | Severe | |
| mid-May 2026 | GLP-1 micro dose; tiny increase in ease, less pain eatingI did notice the tiniest bit of increase in ease.In context ↗ | Severe | GLP-1 drugs (unspecified) |
| 2026-06-17 | shower and daily teeth brushing without crashing, eating double their old foodI took a shower for the first time. And I didn't crash!! At ALL.In context ↗ | Severe |
Adverse events
- Meditation, yoga, breathwork“But, usually too stimulating and I just crash after now” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
fevers to hypothermia that are always triggered by exhaustion and pem
In context ↗ - Brain fog
though my cognition is not rebooted
In context ↗ - POTS & dysautonomia
I have pots as well so the cold really help me stay awake and conscious.
In context ↗ - Mast cell (MCAS) & allergies
how heavily the MCAS and nueroinflamation was taking a hold
In context ↗ - Sleep problems
I'm not too wired most nights to sleep
In context ↗ - Pain & fibromyalgia
quite literally been in less pain and fatigue
In context ↗ - Gut problems
the only thing to make my gut stop bleeding from the fall
In context ↗ - Light & noise sensitivity
my ears feel like they're bleeding and popped
In context ↗ - Heart symptoms & palpitations
panging chest pain from bradycardia
In context ↗ - Anxiety & low mood
the impending doom/ slightly depressive/suicidal thoughts
In context ↗ - Temperature regulation
my nic patch helped the fever!
In context ↗
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