ME/CFS
Severe → somewhat betterNeeds ongoing treatment
Bedbound with severe ME/CFS and POTS, now somewhat better on high-dose Mestinon
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I have severe ME/CFS and OI.
In context ↗ - At worst: Severe
I went from having mild ME/CFS to severe ME/CFS overnight due to a virus.
In context ↗ - Now: Somewhat better
I've gone from the borderline of severe-very severe to... still severe, but a much better version of severe.
In context ↗ - Began after: another virus
I went from having mild ME/CFS to severe ME/CFS overnight due to a virus.
In context ↗
Read from 69 of their posts and comments; links to the 27 this page draws on
Summary
Bedbound with severe ME/CFS and POTS for years, unable to wash her hair or speak outside appointments; a virus had turned mild ME/CFS severe overnight. High-dose Mestinon, over 400 mg daily, cut her PEM markedly after about four months, leaving her still severe but with a bigger envelope and less muscle weakness. Pacing, red light at night and cutting ultra-processed foods gave smaller gains; propranolol helped then backfired.
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What they tried
What they credit
Also tried
all red light at night (red bulbs, rubylith on screens, blacked-out window)· Helped a lotsilent meditation· Helpedskin moisturiser (QV Cream or Cetaphil) on the scalp· Helpeda wide variety of high-fibre foods· Helpedcutting out ultra-processed foods (all whole foods)· Helpedantibiotics for mycoplasma· HelpedPropranolol· Worsestimulants· Worsescalp-hydrating treatments, shampoos and scalp oils· Not saidcompression stockings· Not saidtalking to a therapist· Not saidrecumbent floor bike· Not said
Their words about each treatment
- silent meditation · Helped
I got into silent meditation years before ME/CFS kicked my butt ... The noise has reduced somewhat through meditation.
In context ↗ - skin moisturiser (QV Cream or Cetaphil) on the scalp · Helped
I used to use my skin moisturiser on my scalp before I became too severe to do it. It helped way more than any scalp-hydrating treatments
In context ↗ - scalp-hydrating treatments, shampoos and scalp oils · Not said
It helped way more than any scalp-hydrating treatments, shampoos or scalp oils I ever tried.
In context ↗ - probiotic tablets · Helped
And sometimes a few weeks of probiotic tablets too.
In context ↗ - daily Greek yoghurt · Helped
Daily yoghurt with naturally occurring probiotics, like greek yoghurt.
In context ↗ - a wide variety of high-fibre foods · Helped
A wide variety of high-fibre foods, so that my body can re-establish the gut microbiome.
In context ↗ - Fludrocortisone · Helped
I'm on it for co-morbid POTS. It helps me retain more salt, which helps me retain more water
In context ↗ - Midodrine · Helped
The Midodrine makes a difference for me. I would be completely screwed without it.
In context ↗ - Mestinon · Helped a lot
I was put on it for POTS. It did nothing for POTS, but has decreased my PEM dramatically.
In context ↗ - Propranolol · Worse
At first it helped, but then it backfired and it seemed to leave me with a lower baseline permanently.
In context ↗ - stimulants · Worse
I did also try stimulants. ... in the end I couldn't tolerate them anyway, so it was a non-starter.
In context ↗ - salt (with fluids) · Helped
it makes a dramatic difference how much salt I take each day and what time of day I take the salt
In context ↗ - compression stockings · Not said
I've been given mixed advice and I crash really badly even from seconds of orthostatic stress, so I've tried both. I've been okay either way
In context ↗ - all red light at night (red bulbs, rubylith on screens, blacked-out window) · Helped a lot
I spent years like this before switching to all red light at night ... From my first night doing this, I fell asleep three hours earlier.
In context ↗ - cutting out ultra-processed foods (all whole foods) · Helped
I have severe and I had to go through hell to try to find a way to cut out UPFs, but it was well worth it. ... I eat all whole foods and it's been very stabilising for my diet, as well as feeling better for me generally.
In context ↗ - pacing · Helped
I still pace constantly, but not obsessively. It is much more effective for me.
In context ↗ - introductory pacing course (cfsselfhelp.org) · Helped
I did their introductory course and found it kind of helpful.
In context ↗ - talking to a therapist · Not said
I've found it helpful talking to fellow pwME and even tried talking to a therapist.
In context ↗ - antibiotics for mycoplasma · Helped
It showed up in a blood test, I think, and it went away straightforwardly with antibiotics.
In context ↗ - avoiding speaking · Helped
I've only had two conversations since early in the year, apart from doctor's appointments. It's been a tough decision but it has really helped me.
In context ↗ - recumbent floor bike · Not said
I've used one of those lying on the floor and it was okay for me!
In context ↗
Approaches: POTS medication · Pacing · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. 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 |
|---|---|---|---|
| — | Mild ME/CFS before a virus made it severeI went from having mild ME/CFS to severe ME/CFS overnight due to a virus.In context ↗ | Mild | |
| — | Virus caused debilitating POTS and ME/CFS became severe overnightWhen my PEM was at its worst, I had full body muscle weakness.In context ↗ | Severe | |
| — | Small gradual gains from pacing, comfort and diet tweaksMicroscopic improvements in pacing, more comfortable pillow, tweaks to diet, etc. I slowly became able to tolerate light again.In context ↗ | Severe | Pacing and the energy envelope |
| — | Propranolol helped then backfired and lowered baselineAt first it helped, but then it backfired and it seemed to leave me with a lower baseline permanently.In context ↗ | Severe | |
| 2026-07 | Mestinon reduced PEM and increased her envelopeI've gone from the borderline of severe-very severe to... still severe, but a much better version of severe.In context ↗ | Severe | Mestinon / pyridostigmine |
| 2026-10 | Still severe but larger envelope; able to read and type a littleI can read a bit of light material. I can also type a limited amount of things like this without worrying about crashing.In context ↗ | Severe |
Adverse events
- Fludrocortisone / Florinef“I felt sick titrating on to the Fludro. Not horrible, but sick. After a month it was totally fine.” In context ↗ Side effects
- Propranolol (Inderal)“Propranolol looked promising but I had to stop because of side-effects.” In context ↗ Side effects
- Propranolol (Inderal)“At first it helped, but then it backfired and it seemed to leave me with a lower baseline permanently. Or maybe it was just a very, very long crash.” In context ↗ Made symptoms worse
- Stimulants (unspecified)“But in the end I couldn't tolerate them anyway, so it was a non-starter.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
If I over-exert myself, I get generalised symptoms like sore throat, flu-like symptoms, falling asleep a lot during the day, increased sensory sensitivity and general exhaustion.
In context ↗ - POTS & dysautonomia
I have co-morbid POTS
In context ↗ - Light & noise sensitivity
I've got less light and noise sensitivity at baseline
In context ↗ - Muscle weakness
I still have whole body muscle weakness, just not as badly as before.
In context ↗ - Heart symptoms & palpitations
it's taken the edge off my palpitations and my HR spikes are slightly less high
In context ↗ - Sleep problems
I spent years like this before switching to all red light at night
In context ↗ - Temperature regulation
Since becoming severe, I tend to get night sweats for a few days leading up to my period.
In context ↗ - Flu-like symptoms
I get generalised symptoms like sore throat, flu-like symptoms
In context ↗ - Brain fog
I still have cognitive issues that come directly from my ME/CFS.
In context ↗ - Pain & fibromyalgia
I have wrist and forearm pain which can extend to my fingers if it flares enough.
In context ↗ - Anxiety & low mood
I've grappled with boredom, self-comparison to able-bodied friends and families, grief over dreams about the future
In context ↗
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