ME/CFS
Moderate → somewhat better
Mostly homebound with ME/CFS, now mild to moderate and pacing to avoid PEM
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Dec 2025
In their words
- Condition: ME/CFS
I was diagnosed with ME/CFS last month after months of severe fatigue and exertion.
In context ↗ - At worst: Moderate
I’ve (31F) been dealing with moderate to severe CFS for the last 5 months ... I’m mostly homebound and I don’t have the energy to cook
- Now: Somewhat better
I'm mild/moderate currently after being more moderate for the last year.
In context ↗ - Began after: glandular fever or EBV
My ME/CFS was caused by EBV
In context ↗
Read from 22 of their posts and comments; links to the 18 this page draws on
Summary
A 31-year-old woman whose ME/CFS followed EBV had fatigue before it became debilitating in late 2024, leaving her mostly homebound, napping through the workday and sometimes sobbing from exhaustion. B12 shots, folate, omega-3, probiotics, vitamin D and a SAD lamp did not help. She had repeated upswings and crashes, and by late 2025 described herself as mild to moderate, pacing low-energy dates to avoid PEM.
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What they tried
Also tried
hydroxyzine· Helped400 mg THC salve· Helpedpacing· HelpedRitalin· No changeB12 shots· No changeprenatal for folate· No changeomega-3· No changeprobiotics· No changesuper B· No changevitamin D· No changeSAD lamp· No changeoutpatient mental health treatment program· WorseWegovy· Worseweed· WorseFlu and new Pfizer COVID vaccine· WorseKlonapin· Not saidTrazadone· Not saidCPAP· Not saidicey hot roll on· Not saidThe ACT for OCD Workbook· Not said
Their words about each treatment
- Ritalin · No change
Yes it does nothing for my fatigue. I take it for ADHD. I’m on 40 MG and have been for a while.
In context ↗ - outpatient mental health treatment program · Worse
I just got done with a 2 month mental health program and that made my fatigue 10x worse each day.
In context ↗ - B12 shots · No change
I’ve been doing B12 shots and taking prenatal for folate, omega-3, probiotics, super B, and vitamin D. I’ve also been using a SAD lamp. None have worked.
In context ↗ - SAD lamp · No change
I’ve also been using a SAD lamp. None have worked.
In context ↗ - Wegovy · Worse
I was on Wegovy and developed gastroparesis.
In context ↗ - Klonapin · Not said
I take 10 mg with Klonapin for anxiety or 25 mg with Trazadone if I need it.
In context ↗ - hydroxyzine · Helped
Mine makes me pass tf out. ... I take 10 mg with Klonapin for anxiety or 25 mg with Trazadone if I need it.
In context ↗ - CPAP · Not said
I use my CPAP every night and I had an appointment with my pulmonologist last month
In context ↗ - weed · Worse
I re-experimented with weed in February after I had move to more moderate/severe and that made my ME/CFS way worse on the days I didn’t take it. Stopped it after two weeks.
In context ↗ - 400 mg THC salve · Helped
I use a 400 mg THC salve for my joints. It’s topical so it doesn’t get you high but it helps the joints v much.
In context ↗ - icey hot roll on · Not said
I also use a version of icey hot roll on for my muscles that’s 1000mg
In context ↗ - The ACT for OCD Workbook · Not said
I also have used the The ACT for OCD Workbook
In context ↗ - Flu and new Pfizer COVID vaccine · Worse
I got the Flu and new Pfizer COVID vaccine on Saturday around 7 in the morning. About 12 hours later I started to feel awful.
In context ↗ - pacing · Helped
we've gone on a few more low energy dates which I can pace myself for
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 |
|---|---|---|
| — | fatigue began, later attributed to EBVMy ME/CFS was caused by EBVIn context ↗ | Not stated |
| November 2024 | fatigue became debilitating; days sobbing from exhaustionMy fatigue got extremely worse in November to the point where I have a couple days a week I’m so fatigued that I sob out of exhaustion.In context ↗ | Moderate |
| February 2025 | worse after re-experimenting with weedI re-experimented with weed in February after I had move to more moderate/severe and that made my ME/CFS way worse on the days I didn’t take it.In context ↗ | Moderate |
| March 15, 2025 | crashed after pushing herself too muchI haven’t had a true crash since March 15th where I probably pushed myself too much and could barely move at the end of the day and the next two days were awful.In context ↗ | Moderate |
| March 22, 2025 | day out of the house without a crashNot only did I sit on the bench for 40 mins in the sun but I also walked 1/4 mile.In context ↗ | Mild |
| April 9, 2025 | crash with sore throat, body pain and noise sensitivityI woke up with a sore throat and my body hurt so much that I wasn’t able to workIn context ↗ | Moderate |
| May 2025 | two-week upswingI’ve been in an upswing the last two weeks feeling really goodIn context ↗ | Mild |
| September 2025 | two days of pain after flu and COVID vaccinesAbout 12 hours later I started to feel awful. I was in a lot of pain yesterday.In context ↗ | Moderate |
| December 2025 | week of PEM after a first dateafter our first date which was just to sit outside and eat poke, the next day my uterus or bladder was in such severe pain and I could barely walk (PEM)In context ↗ | Moderate |
| December 23, 2025 | mild/moderate, pacing low-energy datesI'm mild/moderate currently after being more moderate for the last year.In context ↗ | Mild |
Adverse events
- CBT and psychotherapy“I just got done with a 2 month mental health program and that made my fatigue 10x worse each day.” In context ↗ Made symptoms worse
- Semaglutide (Ozempic, Wegovy)“I was on Wegovy and developed gastroparesis.” In context ↗ Gut side effects
- “I gained substantial weight over the last several years due to psychiatric medications (BP2), developing PCOS” In context ↗ Side effects
- Hydroxyzine (Atarax, Vistaril)“If I take it in addition to Klonapin or Trazadone I’m out and it’s even harder to wake up in the morning.” In context ↗ Side effects
- Cannabis (THC, marijuana)“I re-experimented with weed in February after I had move to more moderate/severe and that made my ME/CFS way worse on the days I didn’t take it.” In context ↗ Made symptoms worse
- Methylphenidate (Ritalin, Concerta)“I’m on 40 MG and have been for a while. It also can cause really bad crashes” In context ↗ Made symptoms worse
- COVID vaccination as treatment“About 12 hours later I started to feel awful. I was in a lot of pain yesterday. All my joints felt awful ... I should have spaced them out” Side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsLight & noise sensitivityMuscle weaknessPain & fibromyalgiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
the next day my uterus or bladder was in such severe pain and I could barely walk (PEM)
In context ↗ - Brain fog
the brain fog and lack of concentration is serious
In context ↗ - Pain & fibromyalgia
my uterus or bladder was in such severe pain
In context ↗ - Light & noise sensitivity
Noises sounded so fucking loud I had to put in my noise canceling earbuds
In context ↗ - Muscle weakness
my muscles feel so weak
In context ↗ - Anxiety & low mood
My OCD is going rampant right now.
In context ↗ - Flu-like symptoms
I woke up with a sore throat
In context ↗ - Gut problems
I was on Wegovy and developed gastroparesis.
In context ↗