ME/CFS
Severe → no benefit
Mostly bedbound with severe ME/CFS, still severe; pacing apps and rest, no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Jun 2026
In their words
- Condition: ME/CFS
we both feel confident it’s ME
In context ↗ - At worst: Severe
I think I’m at the higher end of severe
In context ↗ - Now: No benefit
I’m mainly bed bound and it’s all come back.
In context ↗ - Began after: nothing they could name
I’m not sure how long I’ve had ME, I think my other disabilities masked symptoms for a while.
In context ↗
Read from 34 of their posts and comments; links to the 22 this page draws on
Summary
Says they have had ME of uncertain length, masked at first by other disabilities, and were severe and mostly bedbound by 2025 with pain, PEM and sound sensitivity, needing a full-time carer and commode. They credit pacing apps, radical rest and oxaloacetate with helping them cope, though oxaloacetate was unaffordable. In late 2025 they described themselves as at the higher end of severe.
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What they tried
Also tried
Routinery app· Helped a lotweed (THC oil)· Helpedheated blanket· Helpedstomach breathing· Helpeddietician small meals every hour and a half· HelpedInsight Timer· HelpedCBD oil· HelpedForest app· Helpedoxaloacetate· Helpedcyclic sighing· Helpedradical rest· Helpedice pack on the chest· Helpedsomatic experiencing· Helpedxylimelts· Helpedheart rate monitoring· No changeweighted blanket (lap sized)· Worsedextromethorphan (DXM)· WorseCymbalta· Not saidotc antihistamine· Not saidVisible· Not saiddaily meditation group· Not saidmagnesium cream· Not saidminimum tolerable stimulation pacing· Not said
Their words about each treatment
- Cymbalta · Not said
I take 30mg cymbalta with an otc antihistamine every evening and I’ve never noticed any drowsiness after
In context ↗ - otc antihistamine · Not said
I take 30mg cymbalta with an otc antihistamine every evening
In context ↗ - weed (THC oil) · Helped
Only weed helps me so far ... weed has been a game changer because it gives me an appetite
- heated blanket · Helped
Only weed helps me so far, and my heated blanket.
In context ↗ - stomach breathing · Helped
my physio recommended stomach breathing which is a pretty low stimulation thing that actually made a really big difference on my clavicle & shoulder pain.
In context ↗ - dietician small meals every hour and a half · Helped
she advised small meals every hour and a half or so. It’s been really helpful
In context ↗ - Insight Timer · Helped
I find the insight timer lives helpful especially those that are at the same time each week
In context ↗ - Visible · Not said
I’ve started using visible the last few days and oof.
In context ↗ - CBD oil · Helped
Cbd oil really helped when I had a t-break
In context ↗ - weighted blanket (lap sized) · Worse
I bought a lap sized on last week and had the same experience as you :((
In context ↗ - daily meditation group · Not said
join my daily meditation group with a few friends who are also severe
In context ↗ - magnesium cream · Not said
Before bed my carer massages magnesium cream into my legs.
In context ↗ - heart rate monitoring · No change
I don’t use HR monitoring because I didn’t find it super helpful once I was horizontal most of the time.
In context ↗ - minimum tolerable stimulation pacing · Not said
I just try and stick to something I saw on here a while ago ‘minimum tolerable stimulation’.
In context ↗ - Forest app · Helped
I like forest a lot too! I like how you can set a timer or use a stopwatch, sometimes I’m anxious to commit to much but end up resting a lot longer than I expected.
In context ↗ - dextromethorphan (DXM) · Worse
I tried it but it made me wired (both syrup and pill form).
In context ↗ - oxaloacetate · Helped
oxaloacetate has helped me a lot but it’s so unaffordable
In context ↗ - cyclic sighing · Helped
I find cyclic sighing helpful. ... But doesn’t always work
In context ↗ - radical rest · Helped
I’ve been really working at it lately and slowly increasing length and today I did 2 hours and I’m really pleased.
In context ↗ - ice pack on the chest · Helped
Haven’t seen anyone mention ice pack on the chest, that’s been really helpful for me
In context ↗ - somatic experiencing · Helped
I’m working on somatic experiencing which helps me with this a bit.
In context ↗ - Routinery app · Helped a lot
it’s made a huge difference to my ability to pace
In context ↗ - xylimelts · Helped
I love xylimelts! I get through so many it’s ridiculous but they’ve been a game changer for my sleep
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. 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 |
|---|---|---|---|
| — | ME/CFS onset, symptoms masked by other disabilitiesI’m not sure how long I’ve had ME, I think my other disabilities masked symptoms for a while.In context ↗ | Not stated | |
| November 2024 | severe, lying in the dark all dayI’ve been severe for the last few months and I’m struggling with it emotionallyIn context ↗ | Severe | |
| November 2024 | bedroom moved downstairsMy parents moved my bedroom downstairs to makes things more accessible for me :)) it’s only been a few hours but easier alreadyIn context ↗ | Severe | |
| April 2025 | mainly bedbound, pain returnedSpent years working on my strength and pain was finally under control when I developed ME and now I’m mainly bed bound and it’s all come back.In context ↗ | Severe | |
| January 2026 | oxaloacetate helpedoxaloacetate has helped me a lot but it’s so unaffordableIn context ↗ | Severe | Oxaloacetate |
| January 2026 | worked up to two hours of radical restI’ve been really working at it lately and slowly increasing length and today I did 2 hours and I’m really pleased.In context ↗ | Severe | Radical rest |
| June 2026 | Routinery app made pacing easierit’s made a huge difference to my ability to paceIn context ↗ | Severe | |
| June 2026 | still severe, bedbound with carersI have direct payments, they mainly go to my mum as she is my main carer but I also have 2 outside carers who are family friends.In context ↗ | Severe |
Adverse events
- “I bought a lap sized on last week and had the same experience as you :((” In context ↗ Made symptoms worse
- Dextromethorphan (DXM)“I tried it but it made me wired (both syrup and pill form). But also everything makes me wired.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
now I feel like I can’t do anything without causing PEM
In context ↗ - Pain & fibromyalgia
pain was finally under control when I developed ME and now I’m mainly bed bound and it’s all come back
In context ↗ - Light & noise sensitivity
I can’t use headphones either and it makes everything so much harder. And the world is so incredibly loud
In context ↗ - Sleep problems
It’s nearly 6 am so I’m a couple of hours from sleeping
In context ↗ - Anxiety & low mood
instead I just lie in the dark all day feeling miserable
In context ↗