ME/CFS
Very severe → much betterIll 12.5 years before improving or writingNeeds ongoing treatment
Very severe ME/CFS, now much better with radical rest and a carer
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 12.5 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I got ME at about 17 years old in 2012
In context ↗ - At worst: Very severe
I ended up completely bedbound, apart from walking to the bathroom a few times when that flare hit.
In context ↗ - Now: Much better
I'm currently severe, down from very severe
In context ↗ - Began after: glandular fever or EBV
either mono, swine flu or both
Read from 150 of their posts and comments; links to the 38 this page draws on
- Jun 2025
- Sep 2021
- Jul 2025
- Dec 2020
- Sep 2021
- Sep 2021
- Sep 2021
- Nov 2024
- Sep 2021
- Aug 2023
- Sep 2023
- Aug 2023
- Apr 2024
- Apr 2024
- Apr 2024
- Dec 2024
- Oct 2024
- Oct 2024
- Apr 2024
- Nov 2024
- Apr 2025
- Feb 2025
- Feb 2025
- Jun 2025
- Feb 2026
- Oct 2026
- Dec 2024
- May 2020
- Aug 2023
- Aug 2023
- Feb 2025
- Jan 2025
- Jan 2026
- Feb 2025
- Mar 2025
- Sep 2026
- Dec 2024
- Jan 2025
Summary
Island 11984 fell ill at 17 in 2012 after a virus, was mild with a remission in their late teens, then declined to very severe, worsened by a cold and gastro, malnutrition and thyroiditis. A carer 14 hours a week from late 2024 plus radical rest helped them improve from very severe; they remain largely bedbound but are slowly improving, and paid near $4k AUD for an electric bed.
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What they tried
What they credit
Also tried
carer and hygiene help· Helped a lotlow intensity muscle building exercises· Helpedpropranolol· HelpedNSAIDs· HelpedValium / diazepam· HelpedPhernergan· Helped · wore offmetrazopam· Helpedelimination diet· Helpedmelatonin· HelpedB3· HelpedGABA· HelpedL-tryptopham· Helpedfamotadine· Helpednexium· HelpedB12· HelpedSamsung Galaxy Watch 8c· Helpedcaffeine· Helpedantibiotics· Worseexercise and hard work (doctor-advised)· Much worsemulti· Not saidvitamin C· Not saidprobiotics· Not said
Their words about each treatment
- low intensity muscle building exercises · Helped
I've also found low intensity muscle building exercises are the least likely to set off pem for me.
In context ↗ - B1 · Helped a lot
B1 was the kickstarter to all this and super critically low.
In context ↗ - B complex · Helped
that plus a B complex has made me already bounce back so much in 6 days
In context ↗ - multi · Not said
I'm on B1, multi, B complex and C.
In context ↗ - propranolol · Helped
For me it helps me avoid pem from a bad gut which can shoot tachys of up to 160bpm lying down. So it's a life saver of a thing to be on.
In context ↗ - NSAIDs · Helped
The biggest two I've come across that mask symptoms for me are NSAIDs and Valium class drugs. Made me feel normal, still hit the same consequences
In context ↗ - Valium / diazepam · Helped
I need 10mg of valium a night just to get 6-8 hours.
In context ↗ - Phernergan · Helped
Phernergan is an antihistamine I used that knocked me solid for a week or two but I got used to it.
In context ↗ - metrazopam · Helped
I found metrazopam amazing for my anxiety and it's a completely different class of drug to ssris.
In context ↗ - probiotics · Not said
I noticed I had severe gas, bloating and constipation like mentioned when I was on probiotics for a long time.
In context ↗ - elimination diet · Helped
The best I did to slow it was carefully go through my diet and find all irritation triggers. It gave me a little extra time and less intensity.
In context ↗ - melatonin · Helped
Also very severe, still have to use benxos but it made me sleep even better ontop.
In context ↗ - B3 · Helped
I can't remember what the b3 does off the top of my head but when I forgot it I noticed a difference.
In context ↗ - GABA · Helped
Melatonin, B3, GABA (gamma amino buteric acid) L-tryptopham ... That's the 4 I use to good effect!
In context ↗ - LDN · Helped
It's definitely helped me a lot! No miracle but a it feels like it lessens flare severity and duration.
In context ↗ - famotadine · Helped
Have to take h2 famotadine plus nexium to keep it at bay
In context ↗ - single strain probiotic · Helped
There is a new single strain probiotic out thats helped me well, I don't know the name though
In context ↗ - B12 · Helped
I take B1 and B12 along side a multi after a malnutrition episode
In context ↗ - pacing · Helped
For now, always assume you still have it and keep by the principles of pacing.
In context ↗ - carer and hygiene help · Helped a lot
A lifesaver of a carer bringing up my hygiene that my family members were unable to do
In context ↗ - radical rest · Helped a lot
It took me 3.5+ years, but I eventually turned around at a point with the most radical rest I could do.
In context ↗ - antibiotics · Worse
I can understand and relate to the antibiotics. They mess with my gut, which in turn crashes me severely.
In context ↗ - omega 3 · Helped
It could also be omega 3 deficiency correction
In context ↗ - cleaning mould · Helped
It could be completely nuking any mold found in the bathroom.
In context ↗ - exercise and hard work (doctor-advised) · Much worse
before it came back with a vergence amongst doctors encouraging me to push myself with exercise and hard work.
In context ↗ - Samsung Galaxy Watch 8c · Helped
I find having a smart watch useful for having a rough guide of how I've done in terms of activity.
In context ↗ - caffeine · Helped
Now I'm on the lower end of severe I find it's useful, especially for trying to maintain a better sleep schedule and a more consistent bowel movement
In context ↗
Approaches: Mould avoidance · Pacing · Radical rest · Supplements
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 |
|---|---|---|---|
| 2012 | ME onset at 17 after mono or swine flu; mild, sleeping 18-20 hours a dayI got ME at about 17 years old in 2012, either mono, swine flu or bothIn context ↗ | Mild | |
| 18-19 | remission for a year or two, rated at 100Best was 100 for a year or twoIn context ↗ | Recovered | |
| 2020 | relapse after pushing exercise and stress; mostly housebound by age 24led to me slowly rolling myself in constant crashes over and over pulling me down to mostly housebound by age 24In context ↗ | Moderate | |
| early 2021 | major crash after exertion; completely bedbound for 3.5 yearsI ended up completely bedbound, apart from walking to the bathroom a few times when that flare hit.In context ↗ | Very severe | |
| September 2021 | hospital found critically low B1; B1 and B complex, bounced back to mild-moderatethat plus a B complex has made me already bounce back so much in 6 daysIn context ↗ | Mild | Thiamine / benfotiamine |
| late 2021 | crashed a week after the B1 recovery, then a cold and gastro; never bounced backthings went well for the first week then the crash hitIn context ↗ | Severe | |
| August 2023 | thyroiditis with a 180bpm tachycardia; almost two weeks in hospitalan acute episode brought me into hospital that absolutely tanked me hardIn context ↗ | Severe | |
| April 2024 | caught COVID in hospital; smashed down for 6 monthsit left me smashed down for 6 moths before slowly pulling back out of the crashIn context ↗ | Very severe | |
| December 2024 | got an NDIS carer 14 hours a week and did radical rest; big bounce backfrom barely being able to use social media for 10 minutes once every 2-4 weeks ... to being online a lot of the dayIn context ↗ | Severe | Radical rest |
| January 2026 | high end severe, about 90% bedbound, slowly climbingI am 90% bedbound and don't workIn context ↗ | Severe |
Adverse events
- Probiotics and fermented foods“I noticed I had severe gas, bloating and constipation like mentioned when I was on probiotics for a long time.” In context ↗ Gut side effects
- Low-dose naltrexone“The worst effect I had starting it was diarrhoea.” In context ↗ Gut side effects
- Low-dose naltrexone“I also experienced the prickles for 30m-1hr after it took effect. This went away within a couple of weeks.” In context ↗ Nerve pain
- Diazepam (Valium)“I get a bit of a drugged, sorry effect from valium.” In context ↗ Side effects
- Antibiotics (unspecified)“They mess with my gut, which in turn crashes me severely.” In context ↗ Gut side effects
- Elimination diets (other)“led to a very restricted diet and an eating disorder. Between that I ended up severely malnourished and even up crashing fast to very severe.” In context ↗ Refeeding or deficiency problems
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsLight & noise sensitivityLoss of smell or tasteMuscle weaknessPOTS & dysautonomiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
Any aerobic activity that gets my heartrate above 130bpm for more than 15 minutes is more than guaranteed a crash.
In context ↗ - Brain fog
I was also so constantly fogged memory and thought was quite low
In context ↗ - POTS & dysautonomia
a sinus tachy to deal with at times
In context ↗ - Sleep problems
I get about 5-6 hours of sleep in one go and then I get wokem up
In context ↗ - Gut problems
I have IBS/Git issues caused by CFS
In context ↗ - Light & noise sensitivity
Sound is still heavily overloading, but not too the same extent.
In context ↗ - Muscle weakness
I've also experienced a reduction in muscle weakness
In context ↗ - Anxiety & low mood
I'm on an anti-anxiety now for anxiety
In context ↗ - Temperature regulation
feeling overheated 24/7 and sweaty
In context ↗ - Loss of smell or taste
random loss of taste every now and then
In context ↗
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