ME/CFS
Severe → no benefitNeeds ongoing treatment
Stuck in bed on bad days with ME/CFS, now managing symptoms with no benefit
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Feb 2026
In their words
- Condition: ME/CFS
I have ME, ED and DID
In context ↗ - At worst: Severe
I am a uk size 38k and l am able to use the handkerchiefs without a bra whilst stuck in bed.
In context ↗ - Now: No benefit
When I’m really struggling then brushing once or twice a week is typical.
In context ↗
Read from 11 of their posts and comments; links to the 7 this page draws on
Summary
They can be stuck in bed on bad days, washing their hair once a week and relying on a carer, delivered frozen meals and a walking cane. They live in the UK and also have IBS, ED and DID. Their posts describe managing symptoms rather than recovery: Mounjaro eased their IBS but led to only 3lb weight loss, while Wegovy and venlafaxine brought side effects.
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What they tried
Also tried
Their words about each treatment
- Wegovy · Worse
I took Wegovy for three months and felt worse for it. ... the headaches and lethargy on top of my existing headaches and lethargy zapped away the little life I had.
In context ↗ - Mounjaro · Helped
Mounjaro has pretty much cured my IBS and I also need a wee less frequently.
In context ↗ - B12 · Not said
I was on B12 due to anemia from poor diet last year
In context ↗ - laxatives · Not said
I am laxative dependant (after operation in 1998) and have found I need a little extra to prevent the constipation
In context ↗ - Promethazine · Worse
Unfortunately it gave me Restless Leg Syndrome after taking it.
In context ↗ - venlafaxine · Worse
I was on high dose venlafaxine for several years. It was great at first but then I felt trapped by side effects. The worst were the soaking wet night sweats.
In context ↗ - fluoxetine · Helped
I’ve been on 60mg fluoxetine for a few years now and it suits me much better.
In context ↗ - IFS · Helped a lot
I did 18 months of IFS and it helped me to find a true Self ... it honestly changed my life.
In context ↗
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2025-10-13 | stuck in bed at her lowestwhilst stuck in bedIn context ↗ | Severe |
| 2025-12-27 | still too ill to write muchI am unable to write too much todayIn context ↗ | Severe |
Adverse events
- Semaglutide (Ozempic, Wegovy)“I took Wegovy for three months and felt worse for it. ... the headaches and lethargy on top of my existing headaches and lethargy zapped away the little life I had.” In context ↗ Made symptoms worse
- Tirzepatide (Mounjaro, Zepbound)“I am laxative dependant (after operation in 1998) and have found I need a little extra to prevent the constipation you’ve probably heard about happening often.” In context ↗ Gut side effects
- Promethazine (Phenergan)“Unfortunately it gave me Restless Leg Syndrome after taking it.” In context ↗ Side effects
- Promethazine (Phenergan)“Spending nights drowsy from it but unable to sleep because I was trying not to cut my legs off was not fun.” In context ↗ Insomnia from treatment
- Venlafaxine (Effexor)“It was great at first but then I felt trapped by side effects. The worst were the soaking wet night sweats.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Brain fog
I don’t have the full cognitive ability
In context ↗ - Headaches & migraine
on top of my existing headaches and lethargy
In context ↗ - Gut problems
have found I need a little extra to prevent the constipation
In context ↗ - Temperature regulation
I do still get night sweats a few times a week
In context ↗ - Anxiety & low mood
this makes me sad and feel like I’m majorly neglecting essential self-care
In context ↗