ME/CFS
Severe → much betterIll 30 years before improving or writingNeeds ongoing treatment
ME/CFS housebound three months after infections, now much better; pacing helped
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 30 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I've had ME since I was 13, I'm in my 40s now.
In context ↗ - At worst: Severe
I had a couple of years of very severe symptoms at the start and then fell into a milder baseline that I can mostly maintain with pacing
In context ↗ - Now: Much better
ME diagnosed 30 years ago, mostly maintaining mild/moderate baseline with exacerbations into severe if I catch the wrong virus.
In context ↗
Read from 27 of their posts and comments; links to the 21 this page draws on
Summary
She had ME/CFS since age 13, nearly 30 years, with two very severe years at the start before settling into a mild-to-moderate baseline she mostly maintained with pacing, though viruses could push her into severe symptoms. Pacing, acetyl-l-carnitine, vitamin C and zinc, and a Mirena coil with an oestrogen patch helped her manage; she has worked part time and raised two children. Two COVID infections and a chest infection in 2025 left her housebound about three months, and she was still nearing her old baseline seven months later.
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What they tried
What they credit
lying fully supported and awake in a dark room with earplugs daily· Helped a lot · mainless processed diet and reduced gluten· Helpedless processed diet and reduced gluten· Helpedpacing (including pacing mental activity and strict pacing)· Helped · mainmirena coil and oestrogen patch· Helpedmirena coil and oestrogen patch· Helpedvitamin C (high dose)· Helpedzinc/copper· Helpedzinc/copper· Helpedfasting up to 24 hours· Helped
Also tried
Sarah Myhill appointment / advice· Helpedlowering shower temperature· Helpedacetyl-l-carnitine· Helpedself hypnosis deep relaxation, yoga nidra and contemplative prayer· HelpedCBT and person-centred counselling· Helpedcourse of steroids· Helped · wore offcutting out caffeine· No changecocodamol (codeine/paracetamol)· WorseWegovy (semaglutide)· Worseketo· Worseoral contraceptive pill· WorseCoQ10· Worsealpha lipoic acid· WorseLDN· Much worsevitamin D· Not saidB12· Not saidl-lysine· Not saidnattokinase· Not saidsalt and hydration· Not saidProgesterone (Prometrium, Utrogestan)· Not said
Their words about each treatment
- cocodamol (codeine/paracetamol) · Worse
some of the pain that I had at that time was a side effect of the opiates. The opiates were also fracking with my digestion and sleep
In context ↗ - Sarah Myhill appointment / advice · Helped
The advice was basic but safe, not a cure but set me on the path to good enough self-management that I've been able to work and raise kids since then.
In context ↗ - LDN · Much worse
Naltrexone side effects were completely emotionally disregarding and it was the closest to a psychotic experience I've ever had
In context ↗ - lowering shower temperature · Helped
lowering the temp from the higher to the lower end of warm made a big difference to how tiring showers are for me and how high my heart rate goes
In context ↗ - Wegovy (semaglutide) · Worse
Definitely had much worse fatigue for the first 2-3 weeks but it evened out. The first few days after I increase the dose can be bad as well.
In context ↗ - keto · Worse
I can't do keto personally, it helps with energy but triggers bad depression every time I try it
In context ↗ - less processed diet and reduced gluten · Helped
a less processed diet and reduced gluten helps me
In context ↗ - lying fully supported and awake in a dark room with earplugs daily · Helped a lot
Once I developed the discipline to do that I turned a corner and symptoms moved to a milder severity bracket.
In context ↗ - pacing (including pacing mental activity and strict pacing) · Helped
If I can avoid PEM for at least 6 months I do tend to see my capacity for activity improve significantly.
In context ↗ - acetyl-l-carnitine · Helped
Sometimes acetyl-l-carnitine can help with slightly faster brain fog recovery
In context ↗ - self hypnosis deep relaxation, yoga nidra and contemplative prayer · Helped
It tends to leave me feeling lighter inside myself and more grounded, less sad, lonely and worried.
In context ↗ - mirena coil and oestrogen patch · Helped
it gave me some stability with fatigue (although obviously didn't cure me)
In context ↗ - oral contraceptive pill · Worse
every oral contraceptive pill that I have ever tried triggered non-stop migraine but works very well for many other people
In context ↗ - CoQ10 · Worse
Coq10 and alpha lipoic acid did weird things to my heart rate variability, heart bpm and sleep.
In context ↗ - vitamin D · Not said
I tolerate vitamins D, C (high dose), B12, zinc, l-lysine, acetyl-l-carnitine and nattokinaise comfortably.
In context ↗ - vitamin C (high dose) · Helped
I've been mega dosing vitamin C and zinc/copper and strict pacing to try to avoid another virus which I think has helped.
In context ↗ - CBT and person-centred counselling · Helped
I even had some helpful and restorative CBT - not a cure! - as well as person centered counselling when I can afford it
In context ↗ - cutting out caffeine · No change
I cut out caffeine for a year but had no real benefits.
In context ↗ - fasting up to 24 hours · Helped
when that happens I've learned to rest and fast immediately and it can protect me from more disabling flare-ups
In context ↗ - salt and hydration · Not said
I've been dizzy a lot and have to be strict about salt and hydration
In context ↗ - course of steroids · Helped
I was given a course of steroids for a post-covid cough a couple of years ago and the sensation stopped, my body went quiet
In context ↗ - Progesterone (Prometrium, Utrogestan) · Not said
every oral contraceptive pill that I have ever tried triggered non-stop migraine
In context ↗
Approaches: Diet · Hormones & thyroid · Pacing · Radical rest · Sex hormones · 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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| age 13 | ME began at age 13I've had ME since I was 13In context ↗ | Severe | |
| first two years | very severe symptoms at the startI had a couple of years of very severe symptoms at the startIn context ↗ | Severe | |
| a year or two later | settled into a milder baseline; school part timethen fell into a milder baseline that I can mostly maintain with pacingIn context ↗ | Moderate | Pacing and the energy envelope |
| age 17 or so | full-time sixth form made her ill againI started 6th form because I was feeling better by then, but had to drop out after a year ... full time education made me ill againIn context ↗ | Moderate | |
| mid 20s | distance-learning degree and part-time workI'm able to work, part time from home and I use a lot of sick leave, but I've been employed most of the time since my mid 20sIn context ↗ | Mild | Pacing and the energy envelope |
| after her children were toddlers | massive relapse after the toddler stagethe toddler stage triggered a massive relapse that lasted a few yearsIn context ↗ | Severe | |
| 2025 | two COVID infections plus a bacterial chest infection left her houseboundI've been house bound and mostly bed bound for about 3 months with covid and bacterial infections one after another that inevitably flared up my MEIn context ↗ | Severe | |
| March 2026 | approaching pre-infection baselineI'm 7 months post onset of my last covid infection and am only just starting to approach my pre-infection baselineIn context ↗ | Mild | |
| October 2026 | part-time academic work, weight loss on Wegovy, more dizzinessmostly maintaining mild/moderate baseline with exacerbations into severe if I catch the wrong virusIn context ↗ | Mild | Semaglutide (Ozempic, Wegovy) |
Adverse events
- Low-dose naltrexone“Naltrexone side effects were completely emotionally disregarding and it was the closest to a psychotic experience I've ever had.” In context ↗ Mood or psychiatric effects
- “some of the pain that I had at that time was a side effect of the opiates” In context ↗ Side effects
- “The opiates were also fracking with my digestion and sleep.” In context ↗ Side effects
- CoQ10 / ubiquinol“Coq10 and alpha lipoic acid did weird things to my heart rate variability, heart bpm and sleep.” In context ↗ Heart rhythm problems
- CoQ10 / ubiquinol, Alpha-lipoic acid (ALA, R-ALA)“Coq10 and alpha lipoic acid did weird things to my heart rate variability, heart bpm and sleep.” In context ↗ Heart rhythm problems
- Semaglutide (Ozempic, Wegovy)“Wegovy seems to make fatigue slightly worse but it's tolerable for a few months while I lose some of the extra 80lbs I cart around.” In context ↗ Made symptoms worse
- Progesterone (Prometrium, Utrogestan), Estrogen (estradiol)“every oral contraceptive pill that I have ever tried triggered non-stop migraine” In context ↗ Side effects
- Keto and low-carb diets“I can't do keto personally, it helps with energy but triggers bad depression every time I try it” In context ↗ Mood or psychiatric effects
- Intermittent fasting“Fasting at other times or for longer than about 30 hours tends to make me more fatigued.” In context ↗ Made symptoms worse
- Semaglutide (Ozempic, Wegovy)“Definitely had much worse fatigue for the first 2-3 weeks but it evened out.” In context ↗ Made symptoms worse
- Semaglutide (Ozempic, Wegovy)“I've lost 40lbs and that seems to be making orthostatic intolerance (awaiting POTS assessment) worse, so I've been dizzy a lot” In context ↗ Low blood pressure or fainting
- Semaglutide (Ozempic, Wegovy)“I haven't noticed a significant impact on ME symptoms except for being a bit tired for a day or two after I take the dose.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogHeadaches & migraineNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
fatigue and PEM are daily problems, but I function
In context ↗ - Brain fog
The cognitive fatigue and bran fog can feel like the most crippling symptoms.
In context ↗ - POTS & dysautonomia
I have ME/CFS and suspect POTS
In context ↗ - Pain & fibromyalgia
to manage my ME/CFS pain
In context ↗ - Headaches & migraine
every oral contraceptive pill that I have ever tried triggered non-stop migraine
In context ↗ - Neuropathy & tingling
The all over tingly feeling getting stronger is my first sign of PEM kicking in, that and numb lips
In context ↗ - Sleep problems
I only get restorative, restful sleep in my bed or hammock, according to my heart rate and hrv stats
In context ↗ - Anxiety & low mood
with a history of an episode of unipolar depression a few years prior
In context ↗
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