ME/CFS
Very severe → somewhat betterIll 24 years before improving or writingNeeds ongoing treatment
98% bedbound with ME/CFS, now moderate at severe end after valacyclovir and diet changes
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 24 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I believe I've had mild ME since then but I was thrown into moderate when I got covid in 2020 and then severe in 2023ish.
In context ↗ - At worst: Very severe
Last year I was fully bedbound for 3 months and lost a lot of muscle mass.
In context ↗ - Now: Somewhat better
I'm still severe but down the bottom end now and able to walk around my flat and sit outside again
In context ↗ - Began after: glandular fever or EBV
EBV was my first big infection when I was 14, 24 years ago and I had fatigue for 2 years after that.
In context ↗
Read from 49 of their posts and comments; links to the 27 this page draws on
Summary
Rain 57951 dates their illness to EBV at 14, which left two years of fatigue and then mild ME/CFS; COVID in 2020 made them moderate and 2023 severe, and in 2025 they were 98% bedbound. By mid-2026 they were still mostly bedbound (80–90%), using a self-funded electric wheelchair and paid carers; by September they described themselves as moderate at the severe end. Valacyclovir, midodrine, ivabradine and diet changes gave partial benefit, while guanfacine helped sleep and their nervous system but caused depression and was stopped. They paid about £150 a week for care.
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What they tried
What they credit
Also tried
Metformin· HelpedPsyllium husk· HelpedLiquid meals· HelpedLow sugar, high protein and fibre diet· HelpedDextromethorphan· HelpedMidodrine· HelpedCPAP· HelpedGarmin watch· HelpedFerritin treatment· HelpedVisible app· No changePsilocybin mushrooms· No change2.5 mg drug (not named)· WorseBeta blockers· WorseMelatonin· WorseAmitriptyline· WorseNortriptyline· WorseTopiramate· WorseBerberine· Not saidSumatriptan· Not saidH1 blocker· Not saidH2 blocker· Not saidKetotifen· Not saidSodium cromoglycate· Not saidHRT· Not saidPhysio exercise programme (Muldowney-style)· Not said
Their words about each treatment
- 2.5 mg drug (not named) · Worse
I started at 2.5mg thinking I'd be OK and I think it may have contributed to a crash I'm in.
In context ↗ - Valacyclovir · Helped
It took over 6 months for me to see any effect from it.
In context ↗ - Guanfacine · Helped a lot
I credit it for getting me part way out of a bedbound crash
In context ↗ - Metformin · Helped
I've recently started metformin. Only at 500mg ER at the moment and I am noticing positive effects on terms of less crashing from eating
In context ↗ - Berberine · Not said
might use it to work out what dose of metformin/berbarine is working best for me
In context ↗ - Psyllium husk · Helped
I do think it helps my digestion
In context ↗ - Protein powder · Helped
I have clear flavoured protein powder now which helps.
In context ↗ - Liquid meals · Helped
At times when I've been really ill I've only had liquid food to reduce the stress on my Digestive system which has helped.
In context ↗ - Low sugar, high protein and fibre diet · Helped
So I reduced sugar and added protein and fibre where possible and kept everything else the same and I'm back to normal range now.
In context ↗ - Dextromethorphan · Helped
I think it helps both prevent ans alleviate PEM for me.
In context ↗ - Beta blockers · Worse
I was initially prescribed beta blockers by my GP but it lowered my blood pressure too much.
In context ↗ - Sumatriptan · Not said
Sent for head CT and given Sumitriptan.
In context ↗ - Melatonin · Worse
Melatonin which I couldn't tolerate because it make me paradoxically agitated at night
In context ↗ - Amitriptyline · Worse
Amitriptaline - side effects too bad for me
In context ↗ - Nortriptyline · Worse
Noratriptaline - same
In context ↗ - Topiramate · Worse
Topirimate - made my face and extremities go numb from low potassium
In context ↗ - Ajovy CGRP inhibitor injections · Helped a lot
They've improved my quality of life massively even though I still have persistent daily headache and migraine disorder.
In context ↗ - H1 blocker · Not said
I managed to get a H1 and H2 blocker prescribed by my GP.
In context ↗ - Ketotifen · Not said
who prescribed ketotifen
In context ↗ - Sodium cromoglycate · Not said
I also managed to get sodium chromoglycate from immunology though this was a big fight.
In context ↗ - HRT · Not said
Hormonally I have HRT and a coil to treat PMDD and endometriosis.
In context ↗ - Hormonal coil · Helped
I got a hormonal coil which then stopped my periods and had a positive effect on my baseline and overall health.
In context ↗ - Midodrine · Helped
am now medicated for othostatic hypotension (low blood pressure on standing) with midodrine
In context ↗ - Ivabradine · Helped
I also was prescribed ivabradine after a while as my resting heart rate was too high which helped my body to rest more.
In context ↗ - CPAP · Helped
It definitely improves my sleep somewhat and makes me less sleepy in the day though I wouldn't say its affected my fatigue that much
In context ↗ - Garmin watch · Helped
I've had a garmin watch for 3.5 years and find it really helpful.
In context ↗ - Visible app · No change
I don't think visible works for me
In context ↗ - Psilocybin mushrooms · No change
I was hoping to improve my mood with them though I don't think it had much effect.
In context ↗ - Physio exercise programme (Muldowney-style) · Not said
I'm currently tentatively doing this with the support of a physio
In context ↗ - Ferritin treatment · Helped
once I treated it i was able to see how much it was affecting my cognition
In context ↗
Approaches: POTS medication · Antivirals · Hormones & thyroid · Biologics & antibodies · Other drugs and medicines · 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 |
|---|---|---|---|
| age 14 (24 years before 2026) | EBV infection, two years of fatigue, then mild MEEBV was my first big infection when I was 14, 24 years ago and I had fatigue for 2 years after that.In context ↗ | Mild | |
| 2020 | COVID-19 pushed her from mild to moderate MEI was thrown into moderate when I got covid in 2020In context ↗ | Moderate | |
| 2023 | Became severethen severe in 2023ishIn context ↗ | Severe | |
| 2025 | Crashed to 98% bedbound; gave up going outside and used a wheelchair indoorsLast year I crashed from mod/ severe to severe 98% bedbound.In context ↗ | Very severe | |
| 2026-04-25 | Down to the bottom end of severe; can walk around her flat and sit outsideI'm still severe but down the bottom end now and able to walk around my flat and sit outside again.In context ↗ | Severe | Guanfacine |
| 2026-09-16 | Still mostly bedbound; uses electric wheelchair outdoors and manual indoorscurrently I'm too ill/weak to self propel outdoors or even steer itIn context ↗ | Severe |
Adverse events
- “I started at 2.5mg thinking I'd be OK and I think it may have contributed to a crash I'm in.” In context ↗ Made symptoms worse
- Valtrex / valacyclovir“Ive been on it 2.5 months now and suddenly got much worse 3 weeks ago. ... now being completely bedbound except going to the toilet for the last 3 weeks” In context ↗ Made symptoms worse
- Metformin“I was on immediate release to begin with and had too much nausea, diarrhoea and Bloating.” In context ↗ Gut side effects
- Guanfacine“Guanfacine was amazing for helping me sleep ... but I also got really depressed and thought it was that so I stopped it.” In context ↗ Mood or psychiatric effects
- Guanfacine“The first month I slept worse and wasn't sure it was working (1mg XR)” In context ↗ Insomnia from treatment
- Guanfacine“It made me really constipated and gave me a dry mouth but it was tolerable.” In context ↗ Gut side effects
- “For me it caused a 2 month crash initially and just generally was very damaging to me and I was only moderate then.” In context ↗ Made symptoms worse
- Beta-blockers (unspecified)“I was initially prescribed beta blockers by my GP but it lowered my blood pressure too much.” In context ↗ Low blood pressure or fainting
- Melatonin“Melatonin which I couldn't tolerate because it make me paradoxically agitated at night” In context ↗ Side effects
- Amitriptyline (Elavil)“Amitriptaline - side effects too bad for me” In context ↗ Side effects
- Nortriptyline (Pamelor)“Noratriptaline - same” In context ↗ Side effects
- Topiramate (Topamax)“Topirimate - made my face and extremities go numb from low potassium” In context ↗ Other
- Dextromethorphan (DXM)“It does give me a bit of a high/false energy so i have to be careful taking it in PEM because then I might overexert” In context ↗ Side effects
- Dextromethorphan (DXM)“If I take it too late I think it affects my sleep negatively.” In context ↗ Insomnia from treatment
- Dextromethorphan (DXM)“I did used to take it in liquid form as robutissan and that gave me diarrhea but I tend towards constipation so it was manageable” In context ↗ Gut side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
leaving the house 1 x per week (albeit with it causing PEM)
In context ↗ - Brain fog
once I treated it i was able to see how much it was affecting my cognition
In context ↗ - POTS & dysautonomia
am now medicated for othostatic hypotension (low blood pressure on standing) with midodrine
In context ↗ - Mast cell (MCAS) & allergies
I have MCAS, POTS, EDS, endometriosis and various other stuff going on
In context ↗ - Sleep problems
I got tested for sleep apnoea due to unrefreshing sleep and now have a CPAP.
In context ↗ - Pain & fibromyalgia
I'm in pain so much of the time just lying down because my body is so unstable
In context ↗ - Headaches & migraine
I've had a persistent daily headache for over six years now since my first covid infection.
In context ↗ - Gut problems
I tend towards constipation
In context ↗ - Light & noise sensitivity
reducing daylight and noise as much as possible helped because both were costing me energy
In context ↗ - Heart symptoms & palpitations
I also was prescribed ivabradine after a while as my resting heart rate was too high
In context ↗ - Muscle weakness
currently I'm too ill/weak to self propel outdoors or even steer it
In context ↗ - Flu-like symptoms
less swollen glands, stopped the constant sore throat
In context ↗ - Anxiety & low mood
I also got really depressed and thought it was that so I stopped it
In context ↗
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