ME/CFS
Very severe → much betterIll 25 years before improving or writingNeeds ongoing treatment
Bedbound with ME/CFS after graded exercise, now much better with pacing and rest
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 25 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
Very clear post viral sudden onset MECFS in 2001.
In context ↗ - At worst: Very severe
Bedbound and v severe from about 2002-2004 (in bed but able to go to the bathroom which was about 10 steps from my bedroom, sleeping 17h a day ... Say 5% of normal energy.
In context ↗ - Now: Much better
I went from fully bedbound constant toxic feeling horror show ... to now still housebound but comparatively doing much better. I can listen to audiobooks or watch some TV without issues 90 percent of the time.
In context ↗ - Began after: another virus
2001, got sick during sports training, shivery, cold, fever ... was sick for 2 weeks with what felt like a weird flu. Never got better.
- Says they never had: Mast cell (MCAS) & allergies
I don't really have any mast cell issues
- Says they never had: Pain & fibromyalgia
I do not have fibromyalgia, so normally don't have muscle pain
Read from 131 of their posts and comments; links to the 35 this page draws on
Summary
Heron 99807 fell ill in 2001 after a two-week viral illness and never recovered. A prescribed graded exercise programme left them bedbound and very severe for two years, with very low energy. Very slow improvement over two decades of pacing, rest and avoiding PEM brought them to housebound, with two to three hours of home computer work a day and small extra gains from methylcobalamin.
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What they tried
What they credit
Also tried
T4 and T3 thyroid medication· HelpedT4 and T3 thyroid medication· Helpedlow sugar and limited dairy diet· Helpedlow sugar and limited dairy diet· Helpedparacetamol· HelpedN95/N99 masking and infection avoidance· Helpedsalt and compression socks· Helpedsalt and compression socks· HelpedDr. Ellie dental care routine (Closys, Crest, Listerine, ACT)· Helpedsupplement mix from an MECFS specialist· No changeseveral diets· No changeGupta and ANS Rewire· No changeregular B12 (cobalamin) tablets· No changemaca root powder· No changeVisible app and band· No changevegetarian diet· Worseyoga· WorsePfizer COVID vaccine (2 doses)· Worsecooler showers· Worsedoxycycline· WorseQigong, tai chi and isometric yoga· Worsephysical therapy / graded exercise (GET)· Much worseGarmin Vivoactive watch· Not saidvitamin D supplements· Not saidNAC· Not said
Their words about each treatment
- physical therapy / graded exercise (GET) · Much worse
Physical therapist prescribed GET. ... I quickly transitioned to bedbound and very severe (though not feeding tube severe) for 2 years directly after the GET.
In context ↗ - T4 and T3 thyroid medication · Helped
My brain fog lessened when I started taking T3. (Was already taking T4)
In context ↗ - supplement mix from an MECFS specialist · No change
gave up on taking all of that after a few months when I didn't notice any difference
In context ↗ - pacing · Helped
I attribute it to pacing and avoiding crashing like the plague.
In context ↗ - several diets · No change
Tried several diets, each for at least a month, with no or very minimal improvement
In context ↗ - low sugar and limited dairy diet · Helped
I feel a little better when I cut it sugar and severely limit dairy
In context ↗ - vegetarian diet · Worse
Going vegetarian was a clear energy decline
In context ↗ - Gupta and ANS Rewire · No change
I've tried the brain retraining programs (Gupta, ANS rewire). They did nothing more than any other meditation or relaxation techniques I tried.
In context ↗ - yoga · Worse
I try yoga occasionally, but it's not or miss when it comes to PEM/crashing after, and always results in really sore muscles for days.
In context ↗ - paracetamol · Helped
load up on paracetamol (this works well enough so I've not looked into anything else)
In context ↗ - Garmin Vivoactive watch · Not said
which I think also is a decent "did too much" indicator
In context ↗ - vitamin D supplements · Not said
Vit D was also really low, slight surprise because I was already half-assed supplementing that.. Upped that dosage and am now taking it daily, plus attempting some sunlight
In context ↗ - N95/N99 masking and infection avoidance · Helped
I have not been sick at all since the start of 2020 and that (or just time passing) has improved my baseline a little I think
In context ↗ - Pfizer COVID vaccine (2 doses) · Worse
Definite PEM, but a relatively mild crash.
In context ↗ - regular B12 (cobalamin) tablets · No change
Took regular B12 cobalamin before, did nothing
In context ↗ - methylcobalamin (methyl B12) tablets · Helped
Methylated B12 definitely got me a little permanent extra energy!
In context ↗ - cooler showers · Worse
just cooler showers. Nope, crashed from the easing into it part.
In context ↗ - salt and compression socks · Helped
I used to get really dizzy when standing, but it's much less of a symptom/problem for me now I am not careful with salt
In context ↗ - maca root powder · No change
I tried it for a month but by then had grown to dislike the taste and since it did absolutely nothing for any of my symptoms I stopped.
In context ↗ - Visible app and band · No change
Visible did not work well either for me
In context ↗ - Dr. Ellie dental care routine (Closys, Crest, Listerine, ACT) · Helped
I just started the Dr. Ellie dental care stuff (2x/day rinse with Closys, brush with Crest - rinse with Listerine, rinse with ACT ) and my teeth are super smooth.
In context ↗ - doxycycline · Worse
I've never felt so nauseous in my life! Couldn't lay down, couldn't sit up, couldn't nothing. Skin was crawling.
In context ↗ - NAC · Not said
And maybe NAC a little bit that stuff is so acidic I haven't really tried it yet.
In context ↗
Approaches: 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 |
|---|---|---|---|
| 2001 | flu-like illness during sports training; never recoveredwas sick for 2 weeks with what felt like a weird flu. Never got better.In context ↗ | Mild | |
| 2002 | bedbound for two years after prescribed graded exerciseI quickly transitioned to bedbound and very severe (though not feeding tube severe) for 2 years directly after the GET.In context ↗ | Very severe | Graded exercise therapy (GET) |
| 2004 | began very slowly improving after two years bedboundI started to improve after 2 years bedbound - no clue why - which has been great!In context ↗ | Severe | |
| 2020 | crashed for weeks after trying short walks outsideI tried to go for a short walk outside a few days a week for a while, but that was a bit of a disaster ... It inevitable led to a week(s) long miserable crashIn context ↗ | Moderate | |
| 2022 | housebound but able to work 2-3 hours a day; credits pacingNow housebound and working 2-3 hours a day. ... I attribute it to pacing and avoiding crashing like the plague.In context ↗ | Moderate | Pacing and the energy envelope |
| September 2024 | small baseline energy gain on methylcobalaminBaseline is up I'd say 5 percent from about 15-20 percent of a normal healthy person to 20-25 ish?In context ↗ | Moderate | Vitamin B12 |
| July 2026 | still housebound, working three hours a day from home, mostly stableNow still housebound but working a few hours a day.In context ↗ | Moderate |
Adverse events
- Qigong, tai chi and isometric yoga“I try yoga occasionally, but it's not or miss when it comes to PEM/crashing after, and always results in really sore muscles for days.” In context ↗ Made symptoms worse
- Graded exercise therapy (GET)“Exercise as ordered by physical therapy started with a 5 minute walk and quickly increased to 1 hour ... rapidly declined and ended up bedbound for 2 years.” In context ↗ Made symptoms worse
- Cryotherapy and cold exposure“I didn't even try a bath (don't have one), just cooler showers. Nope, crashed from the easing into it part.” In context ↗ Made symptoms worse
- Vitamin D and sun exposure“plus attempting some sunlight - but have tolerance issues with that one.” In context ↗ Side effects
- Graded exercise therapy (GET)“A slow walk for 20-30 minutes (that while I was walking felt ok!) had me unable to get out of bed for 2 weeks after getting like death.” In context ↗ Made symptoms worse
- “I did have some gum issues with the toothbrush she recommends so got a regular one” In context ↗ Side effects
- Doxycycline (Vibramycin)“I've never felt so nauseous in my life! Couldn't lay down, couldn't sit up, couldn't nothing. Skin was crawling.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
as soon as I do too much it's guaranteed PEM and all symptoms are back at full intensity in the foreground
In context ↗ - Brain fog
Brain fog has lessened a lot compared to years ago.
In context ↗ - Sleep problems
I have trouble falling asleep and wake up one or two times a night, and then have trouble falling asleep again
In context ↗ - Headaches & migraine
PEM is pretty much always followed by back/neck -> head pain that ends in a migraine.
In context ↗ - Light & noise sensitivity
major issues with scents sound light food etc
In context ↗ - Flu-like symptoms
The feverish toxic feeling has toned down considerably, only increases with pem
In context ↗ - Temperature regulation
If it's too cold or hot and I go outside, I can still feel it drain energy so fast though.
In context ↗ - Heart symptoms & palpitations
already have a rapid heart rate tendency, especially when sick. Waking up with a fever and 140-180 bpm is horrible.
In context ↗ - Muscle weakness
with very easily fatiguing muscles a book gets uncomfortable and heavy to hold
In context ↗ - Neuropathy & tingling
the whole tingly legs/feet at night stuff that I thought was part of CFS seems to be going away
In context ↗ - Anxiety & low mood
I did get a ton of anxiety since onset though, never had that before either
In context ↗
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