ME/CFS
Severe → much betterIll 5 years before improving or writingNeeds ongoing treatment
Bedbound with ME/CFS, now much better after new drugs
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
I took Accutane (acne medication) for around 3 months, had a strange photosensitive reaction to it and developed ME/CFS.
In context ↗ - At worst: Severe
My late diagnosis caused my condition to significantly worsen and become severe. I was bedbound and barely awake for a long time.
In context ↗ - Now: Much better
Suddenly after my medications have kicked in, I have dramatically improved.
In context ↗ - Began after: mould or toxic exposure
I took Accutane (acne medication) for around 3 months, had a strange photosensitive reaction to it and developed ME/CFS.
In context ↗
Read from 31 of their posts and comments; links to the 16 this page draws on
Summary
She fell ill in November 2020, aged 13, after a reaction to Accutane, and was dismissed as depressed and forced back to school, becoming severe and bedbound. Low-dose naltrexone in early 2023 let her walk again; colchicine eased pain and headaches. New drugs from late 2025, including low-dose Abilify, ivabradine, mirtazapine and duloxetine, brought a dramatic improvement, though brain fog remained.
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What they tried
What they credit
Also tried
the pill· HelpedDuloxetine· HelpedGentle floor/lying down pilates· HelpedCetirizine· HelpedGuanfacine· WorseModafanil· Worsenatto and serra· Not saidnatto and serra· Not saiddietitian-recommended diet· Not saidpsychologist· Not saidsleep medications· Not saidb vitamins· Not said
Their words about each treatment
- Low Dose Naltrexone · Helped a lot
In early 2023(?) I started Low Dose Naltrexone. It did something immediately for me. I could walk and move again.
In context ↗ - Colchicine · Helped a lot
It wasn't a super super immediate improvement but a month later I was already much improved, and being alive was much more tolerable.
In context ↗ - natto and serra · Not said
they were called like natto and serra something I don't know if they're doing anything
In context ↗ - Guanfacine · Worse
Guanfacine- Made my dizziness way way worse
In context ↗ - Modafanil · Worse
Modafanil- Just overall felt bad
In context ↗ - the pill · Helped
For me I find skipping my period and taking the pill as much as possible is best
In context ↗ - dietitian-recommended diet · Not said
She strongly recommended adding fat (like full fat milk and such) and sugar where I can.
In context ↗ - psychologist · Not said
Every fortnight I see my psychologist.
In context ↗ - sleep medications · Not said
I experience a lot of insomnia and restlessness, even though I am on some sleep medications.
In context ↗ - learnt to manage my health · Helped
after I properly learnt to manage my health and improved a bit
In context ↗ - Duloxetine · Helped
in the long term i found the medication good for helping my mental state without making me a zombie
In context ↗ - Gentle floor/lying down pilates · Helped
Gentle floor/lying down pilates exercises work the best for me when I can handle it
In context ↗ - Low Dose Abilify · Helped
noticed improvements in brain fog and energy at 0.3mg on week 3
In context ↗ - Ivabradine · Helped
I'm no longer having hypomania or too much adrenaline, maybe thanks to heart meds.
In context ↗ - Mirtazapine · Helped
Especially the sleep meds OMG it's amazing.
In context ↗ - Cetirizine · Helped
Cetirizine- 10mg x2 a day for 3 weeks, greatly helps allergy symptoms and throat pain.
In context ↗ - b vitamins · Not said
me and my mum took b vitamins and got extremely high b6.
In context ↗
Approaches: POTS medication · Other antidepressants · Other drugs and medicines · Pacing
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| November 2020 | ME/CFS began after a photosensitive reaction to Accutane, aged 13I was quite mild after the initial trigger, but my brain fog was relatively strong.In context ↗ | Mild | |
| 2022 | became severe and bedbound after her late diagnosis and being pushed to attend schoolMy late diagnosis caused my condition to significantly worsen and become severe. I was bedbound and barely awake for a long time.In context ↗ | Severe | |
| early 2023 | could walk and move againIt did something immediately for me. I could walk and move again.In context ↗ | Severe | Low-dose naltrexone |
| early 2024 | much improved, being alive more tolerable, less headaches and nauseaIt wasn't a super super immediate improvement but a month later I was already much improved, and being alive was much more tolerable.In context ↗ | Moderate | |
| early 2025 | came off colchicine for two months; headaches, low mood and noise sensitivity much worseI went off Colchicine for around 2 months and it was a nightmare my quality of life was so low and my headaches were so so much worse.In context ↗ | Severe | |
| 2025-11-13 | dramatic improvement after new medications; went shopping, to a musical, started writing a novel and online schoolSuddenly after my medications have kicked in, I have dramatically improved.In context ↗ | Moderate | Low-dose Abilify / aripiprazole |
| 2026-08 | episodes of being unable to move or speak stoppedI used to have episodes where I could barely move and couldn't speak, but it stopped when I took Low Dose Naltrexone.In context ↗ | Moderate | Low-dose naltrexone |
Adverse events
- Guanfacine“Already tried Guanfacine for brain fog unfortunately made my dizziness (I got POTS, Vasovagal Syncope, Orthostatic Hypotension) worse.” In context ↗ Made symptoms worse
- Guanfacine“Guanfacine- Made my dizziness way way worse (I do have POTS, Vasovagal Syncope and Orthostatic Hypotension btw) and I passed out once” In context ↗ Low blood pressure or fainting
- Modafinil / armodafinil“Modafanil- Just overall felt bad” In context ↗ Side effects
- Mirtazapine (Remeron)“although I may be suffering a little drowsiness as a side effect from the sleep med” In context ↗ Side effects
- Vitamin B complex“me and my mum took b vitamins and got extremely high b6” In context ↗ Other
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
I end up making myself crash worse.
In context ↗ - Brain fog
I still have brain fog
In context ↗ - POTS & dysautonomia
I got POTS, Vasovagal Syncope, Orthostatic Hypotension
In context ↗ - Mast cell (MCAS) & allergies
greatly helps allergy symptoms and throat pain
In context ↗ - Sleep problems
I suffer from insomnia so sometimes I only get 8 hours, it's torture
In context ↗ - Pain & fibromyalgia
I'm hoping it can help me with joint pain mostly, but no help so far.
In context ↗ - Headaches & migraine
Headaches are a big part of my whole tired and wired thing.
In context ↗ - Gut problems
Struggles with appetite, nausea and weight loss and a very sensitive stomach.
In context ↗ - Light & noise sensitivity
I wear sunglasses a lot, even inside, and sometimes I use things for my ears.
In context ↗ - Heart symptoms & palpitations
My heart speeds up.
In context ↗ - Muscle weakness
I suffered a lot from heaviness of basically everything before.
In context ↗ - Anxiety & low mood
I have begun to feel some anxiety again
In context ↗ - Temperature regulation
I always overheat and it got even worse over the Australian summer.
In context ↗
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