ME/CFS
Severe → no benefitIll for 7.5 yearsNeeds ongoing treatment
ME/CFS and still ill with no improvement; return to work lasted under half a day
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 7.5 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
I have ME/CFS since 2019.
In context ↗ - At worst: Severe
Portable shampoo bowl for when I can't wash my hair myself. ... I move a lot less!
- Now: No benefit
I went back to work because *I* was thinking maybe I just needed to pass a readaptation phase and... I could not even finish half a day.
In context ↗
Read from 27 of their posts and comments; links to the 18 this page draws on
Summary
Has had ME/CFS since 2019 and remains ill: a return to work ended after less than half a day in 2024. Relies on an adjustable bed, bed desk, Loop earplugs and a chiropractor for pacing. Takes Biphentin for ADHD — an earlier course seemed to make things worse by encouraging push-through, but they are back on it — plus CBD/CBG for migraines and muscle pain; lost 50 pounds on intermittent fasting.
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What they tried
Also tried
Journaling· HelpedIntermittent fasting· HelpedLoop earplugs· HelpedNeuro-optometry, new prescription and eye exercises· HelpedHeated blanket· HelpedBed desk· HelpedBedroom reorganization· HelpedChiropractor· HelpedCBD/CBG capsules and topical· HelpedClassical music and white noise app· HelpedAdapted hobbies· HelpedUndercut hairstyle· HelpedPortable shampoo bowl· HelpedAdjustable bed· HelpedAdjustable overbed table· HelpedSleeping with hair braided· HelpedElimination diet (dairy, soy)· No changeBiphentin· WorseGoing back to work· WorsePhone support· Not said
Their words about each treatment
- Biphentin · Worse
I was taking Biphentin before ME and I stopped taking it - we think it made me worst since it was making me push through
In context ↗ - Journaling · Helped
I started journaling last year and it really helps me a lot!
In context ↗ - Elimination diet (dairy, soy) · No change
I had to stop eating dairy products and it was my favorite food. Then I had to stop eating soy.
In context ↗ - Intermittent fasting · Helped
It's simple (you just have to resist the urge to eat a part of the day) and it helps. I lost 50 pounds with it in about one year!
In context ↗ - Loop earplugs · Helped
When I feel too sensitive to sounds I use loop earplugs and it helps a lot
In context ↗ - Going back to work · Worse
I went back to work because *I* was thinking maybe I just needed to pass a readaptation phase and... I could not even finish half a day.
In context ↗ - Neuro-optometry, new prescription and eye exercises · Helped
my optometrist sent me to a colleague who specialized in neuro-optometry and after tests and all, she changed my prescription, proposed exercices and it went better since then.
In context ↗ - Heated blanket · Helped
Was advised to get one by other PWEM last year when I started being cold all the time and now I use it all the time. It really changed my life!
In context ↗ - Bed desk · Helped
I had it for 5 years and it helped a lot.
In context ↗ - Phone support · Not said
After two tendinitis related to my use of a phone, I take no chance for a prolonged use of my phone.
In context ↗ - Bedroom reorganization · Helped
Reorganization of my bedroom ... which helps me feel less isolated
In context ↗ - Chiropractor · Helped
My chiro helps as much as my doctor ... She helps me a lot with pacing
In context ↗ - CBD/CBG capsules and topical · Helped
I use CBD/CBG capsules because it's easier to manage and I also use it in topic (stick, cream, roll on) for migraines and muscle pain.
In context ↗ - Classical music and white noise app · Helped
Classical music via apps like Idagio and a white noise app help a lot!
In context ↗ - Adapted hobbies · Helped
switching from books to audiobooks, less tv and more podcasts
In context ↗ - Undercut hairstyle · Helped
My hairdresser proposed an undercut... and I'm never going back!!
In context ↗ - Portable shampoo bowl · Helped
Portable shampoo bowl for when I can't wash my hair myself.
In context ↗ - Adjustable bed · Helped
it changed my life. It's not only helpful for comfort and pacing, but being able to adapt my position so easily and as often as I need to, made a lot of pain vanish
In context ↗ - Adjustable overbed table · Helped
Adjustable overbed table.
In context ↗ - Sleeping with hair braided · Helped
Sleeping with my hair braided to avoid having to brush them.
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 5.8 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 |
|---|---|---|
| 2019 | ME/CFS onsetI have ME/CFS since 2019.In context ↗ | Not stated |
| 2024-11 | tried returning to work, could not finish half a dayI went back to work because *I* was thinking maybe I just needed to pass a readaptation phase and... I could not even finish half a day.In context ↗ | Severe |
| 2025 | vision improved after neuro-optometry assessment and exercisesshe changed my prescription, proposed exercices and it went better since then.In context ↗ | Severe |
| 2026-05 | adjustable bed and pacing support reduced painbeing able to adapt my position so easily and as often as I need to, made a lot of pain vanishIn context ↗ | Severe |
| 2026-09-06 | still ill, back on Biphentin and pacingSo I'm back on Biphentin, but I need to take care of pacing even more.In context ↗ | Severe |
Adverse events
- Methylphenidate (Ritalin, Concerta)“we think it made me worst since it was making me push through” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodGut problemsHeadaches & migraineLight & noise sensitivityPain & fibromyalgiaPost-exertional malaiseTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
without something to help me manage my ADHD, I keep putting myself in PEM
In context ↗ - Light & noise sensitivity
When I feel too sensitive to sounds I use loop earplugs and it helps a lot
In context ↗ - Headaches & migraine
I also use it in topic (stick, cream, roll on) for migraines and muscle pain
In context ↗ - Pain & fibromyalgia
for migraines and muscle pain
In context ↗ - Vision problems
Yes! Last year my optometrist sent me to a colleague who specialized in neuro-optometry and after tests and all, she changed my prescription, proposed exercices and it went better since then.
In context ↗ - Temperature regulation
when I started being cold all the time and now I use it all the time
In context ↗ - Anxiety & low mood
I have experienced depression and stress, and anxiety, and it doesn't feel like it at all
In context ↗ - Gut problems
Then I still have problems, so I guess I'll have to gave up something else soon.
In context ↗