ME/CFS
Moderate → near normalIll 9 years before improving or writingNeeds ongoing treatment
ME/CFS at worst unable to cross a room, now close to normal after pacing
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 9 years
- Last post
- May 2025
In their words
- Condition: ME/CFS
Diagnosed CFS for 9 years. Mid 30s male from the UK.
In context ↗ - At worst: Moderate
From a moderate level where I couldn't get up and walk across the room without having a high heart rate, breathlessness, constant neck pain etc.
In context ↗ - Now: Near normal
Maybe to an 80-90% level ... to now I can live a pretty normal life
In context ↗ - Began after: nothing they could name
I had fatigue for many years and struggled a lot but could lead a comfortable sedentaryish lifestyle.
In context ↗
Read from 46 of their posts and comments; links to the 25 this page draws on
Summary
A UK man had years of fatigue, then pushed himself with exercise and became moderate, diagnosed with CFS around 2016; 2017 was his worst year, unable to cross a room without a racing heart, breathlessness and neck pain. Slow improvements over years, which he credits to low-dose naltrexone, pacing, a positive mindset and vitamin D, brought him to about 80-90% of normal, though mould still triggers crashes.
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What they tried
What they credit
Also tried
stellate ganglion block (SGB)· Helped a lot · wore offexposing myself to dust· Helpedneck traction (self and PT)· Helpedsleep timing (6 hours; consistent 9+ hours)· Helpedinflatable neck cushion· Helpedcarnivore / all meat diet· Helpedstress reduction and positive mindset· Helpednot using a pillow / posture changes· Helpedrelaxing beach holiday with sun and ocean swimming· HelpedD-Ribose· No changevitamin B1 (thiamine)· No changestopping all cosmetic and cleaning products· No changehot baths / warm baths· Worsephysiotherapy and neck exercises· Not saidvitamin B2 (riboflavin)· Not said
Their words about each treatment
- exposing myself to dust · Helped
exposing myself to a particularly dusty item gives me an alergic reaction ... my CFS symptoms seem to subside very noticeably after that
In context ↗ - neck traction (self and PT) · Helped
I've tried traction on myself and briefly had a PT do it. To some degree it relieves my neck pain/headache
In context ↗ - physiotherapy and neck exercises · Not said
I've tried physio but he wasn't very good ... I almost feel that trying to address and improve my neck makes my cfs worse (not certain on this but feels that way)
- hot baths / warm baths · Worse
Hot baths always get my heart rate too high and I think results in PEM. Warm is definitely the way to go.
In context ↗ - one meal a day / intermittent fasting · Helped
I just eat one meal a day and have done for several months. I think it improves the base line a bit.
In context ↗ - low carb diet · Helped
keeping it relatively low carb and in the daytime now I've been more mentally sharp, no bloating, less pain, less general fatigue
In context ↗ - sleep timing (6 hours; consistent 9+ hours) · Helped
Sleeping for 6 hours a night can improve energy and pain somewhat ... consistent 9+ hour sleeping
- D-Ribose · No change
I've taken 5g for a week solid and have noticed absolutely no difference
In context ↗ - inflatable neck cushion · Helped
I've tried this inflatable cusion one and pumped that up previously, I think it did help to a degree
In context ↗ - vitamin B1 (thiamine) · No change
I'm trying 500mg of B1 per day and have done so for nearly 2 weeks without noticing any improvement
In context ↗ - vitamin B2 (riboflavin) · Not said
I've been taking B1 and B2 for a little while now
In context ↗ - carnivore / all meat diet · Helped
being on the carnivore diet and waking up early too and felt amazing waking up in the middle of the night
In context ↗ - LDN (low-dose naltrexone) · Helped
LDN, I still take daily and it has a very noticeable effect.
In context ↗ - vitamin D · Helped
Vitamin D, I was very deficient and I think improving those levels will have only helped.
In context ↗ - pacing / avoiding PEM · Helped
Pacing - obviously hugely important.
In context ↗ - stress reduction and positive mindset · Helped
A positive mindset helped because stress strongly affected me and caused PEM.
In context ↗ - not using a pillow / posture changes · Helped
I've found not using a pillow and not sitting at an office desk for long hours has helped manage symptoms a lot
In context ↗ - stellate ganglion block (SGB) · Helped a lot
It took a week or two but my CFS got a lot better, then over the months slowly went back to baseline.
In context ↗ - relaxing beach holiday with sun and ocean swimming · Helped
my cfs was very good during a nice relaxing beach holiday. And good stressors like the sun and ocean swimming helped too
In context ↗ - stopping all cosmetic and cleaning products · No change
at once point stopped all cosmetic a cleaning products and went on an all meat diet and had nothing dramatic like you report
In context ↗
Approaches: Diet · Pacing · 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 |
|---|---|---|---|
| onset | years of fatigue but could live a sedentary lifeI had fatigue for many years and struggled a lot but could lead a comfortable sedentaryish lifestyle.In context ↗ | Mild | |
| 2017 | pushed himself with exercise and became moderate2017 was when I felt my worst. From a moderate level where I couldn't get up and walk across the room without having a high heart rate, breathlessness, constant neck pain etc.In context ↗ | Moderate | |
| July 2021 | mild/moderate, on the sofa 90% of waking timeI'm mild/moderate so not in bed all the time, but lay/sit on the sofa 90% of the time I'm not sleeping.In context ↗ | Moderate | |
| August 2022 | more mild than after the exercise crashYears later I'm more mild, but not to the point I was before I pushed myself.In context ↗ | Mild | |
| late 2023 | CFS got a lot better after four stellate ganglion blocksIt took a week or two but my CFS got a lot better, then over the months slowly went back to baseline.In context ↗ | Mild | Stellate ganglion block |
| 2024 | stellate ganglion block benefit faded back to baselinethen over the months slowly went back to baselineIn context ↗ | Mild | |
| April 2025 | mould-induced crashalthough going through a mold induced crash right nowIn context ↗ | Mild | |
| May 2025 | partially recovered, about 80-90% of normalFeel like I'm partially recovered at this point. Maybe to an 80-90% level.In context ↗ | Near normal | Low-dose naltrexone |
Adverse events
- D-ribose“I also tried D-Ribose for 3-4 days a month ago and felt I had heart palpations which didn't go away for a few days after stopping.” In context ↗ Heart rhythm problems
- “Then I tried to improve my health by exercising, pushed myself for months and ended up moderate and got diagnosed at that point.” In context ↗ Made symptoms worse
- “Did perhaps 8 sessions, 1 per week and didn't have any improvement and actually had worse pain for a while following at least one of the sessions.” In context ↗ Made symptoms worse
- Stellate ganglion block“I had a very sore throat barely able to speak and my right eyelid dropped, this lasted about 4-5 hours.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineMast cell (MCAS) & allergiesPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
Exercise can cause lower baseline energy for days/weeks or longer.
In context ↗ - Brain fog
Brain fog (struggle to understand and remember simple things)
In context ↗ - Pain & fibromyalgia
I constantly have neck ache and it's worse on days when I have PEM.
In context ↗ - Headaches & migraine
Tension headaches
In context ↗ - Gut problems
Bloating and stomach ache
In context ↗ - Breathlessness
couldn't get up and walk across the room without having a high heart rate, breathlessness, constant neck pain etc.
In context ↗ - Sleep problems
I find I need sleep like a normal person, well probably more.
In context ↗ - Anxiety & low mood
stress strongly affects my anxiety
In context ↗ - Mast cell (MCAS) & allergies
gives me an alergic reaction; itchy eyes, scratchy throat
In context ↗ - Flu-like symptoms
I get a lot of neckache, headaches, malaise, exercise intolerance etc.
In context ↗
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