ME/CFS
Severe → no benefitIll for 12 years
ME/CFS progressing to severe gut symptoms and carers, new medication gave no benefit
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 12 years
- Last post
- Nov 2025
In their words
- Condition: ME/CFS
My cfs has since progressed and I’ve been hospitalised for 2 weeks lol.
In context ↗ - At worst: Severe
It is impossible to eat like this. I’ve needed morphine to have a small breakfast drink.
In context ↗ - Now: No benefit
Sick from 2013 and had some normalish years until 2023. Don’t wanna do this shit forever.
In context ↗ - Began after: a vaccination
Did my first of 3 doses as a kid, had a reaction that I would now relate to cfs/dysuatonomia.
Read from 14 of their posts and comments; links to the 10 this page draws on
Summary
Fell ill in 2013 and had some normalish years until 2023, then got worse. Working 20 hours a week from home with lots of rest in mid-2024, they got sick for two weeks after each COVID vaccine and their CFS has progressed since, including a two-week hospital stay. By 2025 severe gut symptoms needed morphine to eat, and they relied on a hospital table, air mattress and carers. In November 2025 they had just started a new medication at 0.1.
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What they tried
Also tried
rest· Helpedwalking stick / cane· Helpedbenzos· Helpedsealegs· Helpedsoft food· Helpedmorphine· HelpedSsris· No changebeta blockers· Worseprobiotics· WorseCOVID vaccination as treatment· Worsefortisip· Not saidantacids· Not saidLDA· Not said
Their words about each treatment
- rest · Helped
rest which is the only reason I can do it
In context ↗ - fortisip · Not said
Living off fortisip, 300cals~ for a little bottle and covers a good variety of nutrition.
In context ↗ - walking stick / cane · Helped
its amazing how much more I can tolerate with it ... having something to lean on and balance me has actually been helpful
- benzos · Helped
I have tried benzos which work ok
In context ↗ - sealegs · Helped
I’ve had some luck with sealegs lol
In context ↗ - Ssris · No change
Ssris don’t touch it
In context ↗ - beta blockers · Worse
I react badly to beta blockers
In context ↗ - soft food · Helped
Improved after two weeks of soft food, now just ate a bit of solid food and it’s back.
In context ↗ - probiotics · Worse
Some strains in probiotics can trigger an MCAS reaction, I had to learn this the hard way…
In context ↗ - morphine · Helped
I’ve needed morphine to have a small breakfast drink.
In context ↗ - LDA · Not said
I just started at 0.1 2 days ago and got crazy hungry right away
In context ↗ - COVID vaccination as treatment · Worse
I got sick for 2 weeks after each of my covid vaccines.
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. The chart starts 10 years after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|
| 2013 | became illSick from 2013 and had some normalish years until 2023.In context ↗ | Not stated |
| 2023–2024 | normalish years ended; working 20 hours a week from home with heavy resthad some normalish years until 2023 ... WFH 20 hours a week at home. | Mild |
| 2024-12-26 | crashed after COVID vaccines; hospitalised two weeks; CFS progressedI got sick for 2 weeks after each of my covid vaccines. My cfs has since progressed and I’ve been hospitalised for 2 weeks lol.In context ↗ | Severe |
| 2025-03-20 | severe gut symptoms; needed morphine to drink a breakfast supplementI’ve needed morphine to have a small breakfast drink.In context ↗ | Severe |
| 2025-08-24 | largely bed-based, using hospital table and carers for cooking and cleaningHospital table that can go over bed ... Caretakers who can do all the cooking/cleaningIn context ↗ | Severe |
| 2025-11-19 | started LDA at 0.1, very sensitive to medicationI just started at 0.1 2 days ago and got crazy hungry right awayIn context ↗ | Severe |
Adverse events
- Beta-blockers (unspecified)“Ssris don’t touch it and I react badly to beta blockers.” In context ↗ Side effects
- COVID vaccination as treatment“I got sick for 2 weeks after each of my covid vaccines.” In context ↗ Made symptoms worse
- Probiotics and fermented foods“Some strains in probiotics can trigger an MCAS reaction, I had to learn this the hard way…” In context ↗ Autoimmune or inflammatory flare
- Low-dose Abilify / aripiprazole“I just started at 0.1 2 days ago and got crazy hungry right away” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Gut problems
Burning in stomach when eating food ... Violent diarrhea/nausea shortly after cramps
In context ↗ - Muscle weakness
Feels so extreme, the muscles are so uncomfortable and weak.
In context ↗ - Mast cell (MCAS) & allergies
Mcas treated, any food type/volume reacts this way
In context ↗ - Anxiety & low mood
Last year I woke up with panic attacks every day
In context ↗