ME/CFS
Moderate → somewhat betterIll 2 years before improving or writing
ME/CFS crash: unable to swallow, tube fed, then housebound, now somewhat better
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 2 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I have had ME for almost 2 years now
In context ↗ - At worst: Moderate
my severity has been crawling down to moderate for a few months, and I had a massive crash at the end of April/start of May that threw me into the deep end of Moderate
In context ↗ - Now: Somewhat better
and now I am recovering I'd say I am in the middle
In context ↗
Read from 16 of their posts and comments; links to the 9 this page draws on
Summary
Tern 48401, 17 and in the UK, had mild-moderate ME from September 2024, managing college until daily attendance worsened them. At the start of May 2026 a crash left them unable to swallow; they were hospitalised and tube fed, then were housebound and moderately ill for months, with flares after cleaning or outings. Referred to a clinic in Birmingham, they have been largely housebound and had PEM after a flu jab in October 2026.
Ask Miruvor AI
What they tried
Also tried
Their words about each treatment
- cocodamol · No change
I'm in agony that cocodamol isn't helping with
In context ↗ - meal replacement shakes · Not said
she did get me meal replacement shakes
In context ↗ - pacing and rest · Helped
I now work very hard to make sure I do not worsen further
In context ↗ - perch chair from OT · Helped
today i was able to cook myself pasta with much less pain and hopefully less consequences of pem ect
In context ↗ - dissolvable electrolytes · No change
I tried dissolvable electrolytes for a bit but they didnt seem to help much
In context ↗ - Tube feeding (NG, NJ, PEG, TPN) · Not said
Even when they fed me with the NG tube for the first time I threw up the first 2 bottles almost immediately
In context ↗ - Flu vaccine · Worse
Had my flu jab 2 days ago and now have PEM symptoms- its not just flu symptoms its very typical for me
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 12 months after onset: the story doesn’t say how ill they were before that. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2025 (first year or so) | daily college attendance worsened her to mild-moderateI was mild-moderate for the first year or so but going to and from college daily worsened me significantly and I just ignored itIn context ↗ | Mild | |
| end of April / start of May 2026 | massive crash, hospitalised and tube fed, could barely walk or washI had a massive crash at the end of April/start of May that threw me into the deep end of Moderate ... was so weak that I lost the ability to swallow and was tube fed, and could barely walk the 5 steps to the bathroomIn context ↗ | Moderate | |
| June 2026 | home from hospital, housebound, middle of moderatenow I am recovering I'd say I am in the middle ... I came home about 5 weeks ago and have been housebound sinceIn context ↗ | Moderate | Pacing and the energy envelope |
| 2026-07-23 | perch chair from OT let her cook pasta with less painI got a perch chair from OT yesterday- and today i was able to cook myself pasta with much less painIn context ↗ | Moderate | |
| 2026-07-28 | bedbound after a lot of cleaningI've been cleaning a lot. Bad idea, today I have been bedbound other than going to the bathroom by crawlingIn context ↗ | Severe | |
| 2026-08-13 | pushed herself to sit her music A-level examDespite my body's immense protests, I got a C in my music a level exam!! I do immensely regret pushing myself into moderate to achieve itIn context ↗ | Moderate | |
| 2026-10-19 | PEM after flu jab; still housebound and moderateHad my flu jab 2 days ago and now have PEM symptoms- its not just flu symptoms its very typical for meIn context ↗ | Moderate |
Adverse events
- Tube feeding (NG, NJ, PEG, TPN)“Even when they fed me with the NG tube for the first time I threw up the first 2 bottles almost immediately” In context ↗ Gut side effects
- Tube feeding (NG, NJ, PEG, TPN)“get partially sedated when it goes in its awful, and let them do it quick so it's over and done with” In context ↗ Other
- Flu vaccine“Had my flu jab 2 days ago and now have PEM symptoms- its not just flu symptoms its very typical for me” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogHeadaches & migraineMuscle weaknessPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
ended up with horrible pem for about 2 weeks after
In context ↗ - Headaches & migraine
couldn't tolerate the light and ended up with migraines
In context ↗ - Muscle weakness
My legs have been super weak lately so thats helped
In context ↗ - Brain fog
I cant see or think too well
In context ↗ - Sleep problems
my body does not agree with sleeping between then and 11pm
In context ↗ - Temperature regulation
the heat is not doing any favours
In context ↗