ME/CFS
Very severe → much betterIll 9 years before improving or writing
Bedbound with ME/CFS, now much better and working part-time after rest and LDN
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 9 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I've had ME for 9 years.
In context ↗ - At worst: Very severe
I literally wore a nappy, couldn't lift my head, couldn't stand noise, light or sound.
In context ↗ - Now: Much better
Now I can work 4 hours a day, 3 days a week but still rest most of the time outside that.
In context ↗
Read from 45 of their posts and comments; links to the 27 this page draws on
Summary
Diagnosed with ME/CFS in 2017, they were very severe and bedbound for about two years around 2024, unable to eat, sit up or tolerate light and sound. They credit total rest, low-dose naltrexone (up to 4.5 mg twice daily), Effexor, a vagus nerve device, high-dose CoQ10 and large doses of probiotics, and low-dose Abilify for brain fog. By October 2026 they could work four hours a day, three days a week, though a virus and a flu jab each set them back.
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What they tried
What they credit
Also tried
nattokinase· Helpedserrapeptase· Helpedprebiotics (psyillium husks, potato starch, inulin)· Helpedivabradine· Helpedabilify· Helpedwegovy· Helpeddiet· No changedoxycycline· WorseModafinil· WorseFlu vaccine· Worsenicotine patches· Not saidcholine· Not saidlysine· Not saidalpha lipoic acid· Not saidniacin· Not saidrivotril· Not saidberberine· Not saidtaurine· Not saidelectrolytes· Not saidcompression stockings· Not saidh1 blocking antihistamines· Not saidh2 blocking antihistamines· Not saidvit c· Not saidquercetin· Not saidsteroids· Not saidantivirals· Not saidantibiotics· Not said
Their words about each treatment
- nattokinase · Helped
weirdly went away when I started taking nattokinase and serrapeptase
In context ↗ - serrapeptase · Helped
I have no idea why they help my hands and feet get warm but they really do
In context ↗ - Co enzyme q10 · Helped
When I saw my ME specialist, I was taking 200mg and having no effect. He told me to take 600mg with bioperine
In context ↗ - Symprove, vivomixx, udos super 8, hivital probiotics · Helped
The prebiotics and probiotics almost cure me every time I have a bad and prolonged crash
In context ↗ - prebiotics (psyillium husks, potato starch, inulin) · Helped
for prebiotics I take psyillium husks, potato starch and inulin
In context ↗ - nicotine patches · Not said
I used nicotine patches, too.
In context ↗ - choline · Not said
nicotine patches with choline
In context ↗ - lysine · Not said
sorry forgot lysine and alpha lipoic acid, niacin
In context ↗ - doxycycline · Worse
I actually have been on 100mg of doxycyline daily or 40mg slow release doxycycline daily for my skin
In context ↗ - Modafinil · Worse
It just gave me false energy, a rapid heartbeat, inability to get a proper deep breath and terrible restless legs unfortunately.
In context ↗ - ivabradine · Helped
I was on ivabradine for a while and it worked well for me too.
In context ↗ - low dose naltrexone · Helped
taking it in the morning it made a difference after 3 months
In context ↗ - full and complete bed rest · Helped a lot
The single main reason I think I am recovering is absolutely not pushing myself in any way ever. Full and complete bed rest for 12 months.
In context ↗ - amofit S vagus device · Helped
I got it when I was severe and wore it every day on green except when it was charging. I eventually got the strength to take supplements and sit up in bed.
In context ↗ - amitriptyline · Helped
10mg amitriptyline at night
In context ↗ - effexor · Helped
150mg of effexor in the morning
In context ↗ - abilify · Helped
1mg of abilify (which really helped with brain fog, I literally had no thoughts for about a year before that
In context ↗ - ritalin · Helped
the medications ldn, lda, ritalin, amytriptyline and effexor
In context ↗ - rivotril · Not said
Been on 0.5mg for 3 years. No side effects.
In context ↗ - NAC · Helped
1200mg X2 of Nac
In context ↗ - ginkgo biloba · Helped
600 mg Co enzyme q10 and ginkgo biloba 3x6000mg twice a day really helps me
In context ↗ - creatine · Helped
3 scoops of creatnine daily
In context ↗ - berberine · Not said
NAC, Berberine and 600mg of Co-enzyme Q10 are also recommended
In context ↗ - taurine · Not said
Ginko Biloba, Taurine
In context ↗ - electrolytes · Not said
She might need electrolytes, compression sackings and h1 and h2 blocking antihistamines or vit c and quercetin. I use all these too.
In context ↗ - wegovy · Helped
I'm on the sustain dose of wegovy now and convinced it helped me with brain fog
In context ↗ - diet · No change
Diet makes no difference to my ME at all unfortunately.
In context ↗ - steroids · Not said
my doctor gave me steroids to dampen down my immune response
In context ↗ - antivirals · Not said
and antivirals and antibiotics
In context ↗ - Flu vaccine · Worse
I got the flu jab on Friday the 9th and got severe PEM, sore throat and bad headaches. I've been signed off work since
In context ↗
Approaches: SNRIs · Radical rest · Stimulants · Supplements · Tricyclic antidepressants · Vagus nerve stimulation
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 6.5 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 | After |
|---|---|---|---|
| 2017 | diagnosed with ME/CFSI was diagnosed in 2017.In context ↗ | Not stated | |
| early 2024 | very severe, bedbound, unable to eat or sit upI was extremely severe this time last year. I couldn't eat, sit up, brush my teeth, etc.In context ↗ | Very severe | |
| December 2024 | walking 50 minutes, hoping to return to workI walked for 50 minutes today and am hoping to go back to work( after more that a year out-sick) in Feb.In context ↗ | Moderate | Low-dose naltrexone |
| September to December 2025 | working three and a half days a weekWent from severe and not functioning to working 3.and a half days a week from September to Christmas.In context ↗ | Mild | |
| January 2026 | caught a virus, bedbound againI caught a virus and am bed bound again now though unfortunately. Pretty devastating.In context ↗ | Severe | |
| May 2026 | working 11 hours a weekgone from bedbound and constantly sleeping for 2 years to working 11 hours a week.In context ↗ | Moderate | Low-dose naltrexone |
| June 2026 | short walk and ten minutes cyclingNow I can even take a short walk and yesterday I cycled for ten minutes.In context ↗ | Moderate | |
| October 2026 | severe PEM after flu jab, signed off workI got the flu jab on Friday the 9th and got severe PEM, sore throat and bad headaches. I've been signed off work sinceIn context ↗ | Severe | |
| 26 October 2026 | working four hours a day, three days a weekNow I can work 4 hours a day, 3 days a week but still rest most of the time outside that.In context ↗ | Moderate |
Adverse events
- Modafinil / armodafinil“It just gave me false energy, a rapid heartbeat, inability to get a proper deep breath and terrible restless legs unfortunately.” In context ↗ Side effects
- Modafinil / armodafinil“It just gave me false energy, a rapid heartbeat” In context ↗ Heart rhythm problems
- Doxycycline (Vibramycin)“when it made me vomit blood my doctor switched me to one gentler on my stomach” In context ↗ Gut side effects
- Probiotics and fermented foods“I take extreme quantities that cost me a fortune and get major flatulence from them though” In context ↗ Gut side effects
- Flu vaccine“I got the flu jab on Friday the 9th and got severe PEM, sore throat and bad headaches. I've been signed off work since” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogFlu-like symptomsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
I had severe fatigue and terrible trouble thinking with pem.
In context ↗ - Brain fog
1mg of abilify (which really helped with brain fog, I literally had no thoughts for about a year before that
In context ↗ - Light & noise sensitivity
I literally couldn't sit upright for 18 months or tolerate light or sound
In context ↗ - Flu-like symptoms
I'm still low energy and have a bad permanent sore throat
In context ↗ - Muscle weakness
Last year I literally wore a nappy, couldn't lift my head
In context ↗ - Sleep problems
I am still mostly bed bound and sleep a lot
In context ↗ - Headaches & migraine
I got the flu jab on Friday the 9th and got severe PEM, sore throat and bad headaches.
In context ↗ - Temperature regulation
I get cold flashes and I always have to sleep with my electric blanket
In context ↗ - Heart symptoms & palpitations
I was also on ivabradine some years ago for sinus tachycardia.
In context ↗
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