ME/CFS
Very severe → somewhat betterIll 22 years before improving or writingNeeds ongoing treatment
Bedbound, sleeping 23 hours a day, now somewhat better and mostly housebound with pacing
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 22 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
I got ME/CFS age 11, disgnosed age 12.
In context ↗ - At worst: Very severe
I was at first extremely severe. Bedbound, sleeping 23 hours a day.
In context ↗ - Now: Somewhat better
Overall, in 18 years, I’ve gone from really severe to severe. Though it does fluctuate still. ... Like I still can’t have a job or go to uni but at least I can watch tv now, talk to friends and family, and eat actual meals instead of finger foods.
In context ↗ - Began after: another virus
whenever I got any kind of cold/virus, like the 3 in a row that left me bedbound at age 11
Read from 62 of their posts and comments; links to the 31 this page draws on
Summary
She fell ill at age 11 in 2004, bedbound and sleeping 23 hours a day. Pacing brought her to moderate by 2007-2012; 2020 was a good year, then an IBS and colitis flare caused a CFS crash. COVID in 2021 and 2022 temporarily worsened her baseline for several months. A wheelchair later helped; she remained mostly housebound using a wheelchair.
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What they tried
What they credit
Also tried
Stairlift· Helped a lotThe pill (contraceptive)· HelpedOmega fatty acid supplements· HelpedStomach massage· HelpedHeated swimming pool and floats· HelpedSauna· HelpedCannabis (weed)· HelpedWeekly massage· HelpedFitbit· HelpedWheelchair (manual and electric)· HelpedAntifungal tablets for recurrent thrush· HelpedMint-free toothpaste· HelpedSSRIs· No changeProbiotics· No changeSNRIs (duloxetine/Cymbalta)· WorseAmitriptyline· WorsePaxlovid· WorseStimulants / coffee· WorseBuscopan (IBS antispasmodic)· WorseSteroid creams for eczema· WorseMesalazine· WorsePelvic floor exercises· WorseCOVID vaccination as treatment· WorseIron supplements· Not saidMeditation· Not said
Their words about each treatment
- Pacing · Helped a lot
I went from sleeping 23 hours a day bedbound to going to school in person for 8-9 hours a week. So there was definite improvement the first few years that I put down to effective pacing.
In context ↗ - GET (own 15-second protocol) · Helped
My first physio did GET with me and I improved.
In context ↗ - SSRIs · No change
They helped a lot with the mental health problems. Has zero effect- positive or negative- on my ME/CFS.
In context ↗ - SNRIs (duloxetine/Cymbalta) · Worse
Helped some but the side effects sucked. ... the side effects were tiring to cope with which then made the ME/CFS worse.
In context ↗ - Amitriptyline · Worse
Amitriptyline gave me palpitations and a really fast heart rate. I didn’t realise it was second line for ADHD, but it did help calm my brain
In context ↗ - Paxlovid · Worse
The only thing it did was make me sick though.
In context ↗ - The pill (contraceptive) · Helped
So not only are my periods much better, I don’t have to use energy for dealing with my period and pads and everything as often anymore either.
In context ↗ - Probiotics · No change
I also drank them daily for months a couple years ago. They made zero difference to my ME/CFS.
In context ↗ - Omega fatty acid supplements · Helped
Personally I find supplements for omega fatty acids help with the aches and pains in my joints.
In context ↗ - Iron supplements · Not said
So I’m aiming to get mine to 25%. It can take months of iron supplements to get it consistently high enough.
In context ↗ - Stimulants / coffee · Worse
When I have tried them as an adult, I always feel dreadful.
In context ↗ - Buscopan (IBS antispasmodic) · Worse
Turns out between long term Buscopan (an IBS medication- not sure of the international name) and steroid creams for eczema were raising my heart rate
In context ↗ - Mesalazine · Worse
They gave me mesalazines (also a salicylate). I took them for 6 years- tablets, suppositories and enemas.
In context ↗ - Pelvic floor exercises · Worse
I now have issues with relaxing my pelvic floor muscles since doing pelvic floor exercises a few years back.
In context ↗ - Stomach massage · Helped
I find stomach massage (always in a circular direction in the same direction of your large intestine) helps to recreate some of that movement that I am missing but only a bit.
In context ↗ - Meditation · Not said
I’ve been trying to meditate for years and can’t manage more than 20 minutes. Around that point, it’s like my brain gets bored and starts paying more attention to the physical pains and I feel worse.
In context ↗ - Heated swimming pool and floats · Helped
I could use the floats to keep my head above water and then just let my body be weightless and it reduced the pain for a while as I floated
In context ↗ - Sauna · Helped
It also had a sauna and the heat also helped the pain
In context ↗ - Cannabis (weed) · Helped
affording a cleaner and convenience foods, and a weekly massage, and weed to manage some symptoms, were all helpful
In context ↗ - Fitbit · Helped
I set my target for 3000 so it buzzes at me if I reach that, and then I know I really need to stop.
In context ↗ - Wheelchair (manual and electric) · Helped
if I could reduce at least a bit of energy use, I didn’t have as many bedbound days after each appointment
In context ↗ - Stairlift · Helped a lot
I got a stairlift. Massive difference. Like life changing. My illness is now mostly stable instead of mostly chaotic.
In context ↗ - Bleach treatment of bedroom mould · Helped
When it comes back, I have a flare up of my CFS.
In context ↗ - Antifungal tablets for recurrent thrush · Helped
For recurrent thrush, you take three tablets with 72 hours between each tablet. I also always get them prescribed whenever I get antibiotics ready to use when I finish the antibiotics.
In context ↗ - Mint-free toothpaste · Helped
I now have mint-free toothpaste. And as soon as I used it, I realised that oh yeah it absolutely can make a big difference even with that tiny amount.
In context ↗ - COVID vaccination as treatment · Worse
My 7th vaccine, I ached all over so intensely that I could not move at all. It was hell. ... my ME/CFS has been bad since then (about 5 weeks).
In context ↗
Approaches: Mould avoidance · Pacing
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. The dashed part: the story doesn’t say when. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2004 | fell ill at age 11 after several viruses; bedboundI got sick in 2004. I was at first extremely severe. Bedbound, sleeping 23 hours a day.In context ↗ | Very severe | |
| 2007-2012-ish | improved to moderate, back at school part-timeThen in 2007-2012-ish, I was better. Probably considered moderate. I was in school about 40% attendence and able to walk without aids.In context ↗ | Moderate | Pacing and the energy envelope |
| after 2012 | another bad patch, bedbound except toilet trips in a wheelchairThen I had another bad patch. Bedbound except going to the toilet, which I used a wheelchair to get to.In context ↗ | Severe | |
| 2020 | best she had been since diagnosis, physically active at homeIn 2020, I was doing great.In context ↗ | Mild | |
| 2022 | IBS and ulcerative colitis flare triggered an ME/CFS flarestaying up late because I was on the toilet triggered a flare up of my ME/ CFS. I’m not bedbound or fully housebound now. But I only manage to go out maybe once or twice a month.In context ↗ | Severe | |
| August 2024 | bereavement in July and pneumonia in August, not recovering physicallyI’ve been having a particularly bad year after a death in july and getting pneumonia in august and just not recovering physically.In context ↗ | Severe | |
| October 2024 | seventh COVID vaccine caused intense whole-body aching and a lasting flareMy 7th vaccine, I ached all over so intensely that I could not move at all. It was hell. It was only like that for a couple of days but my ME/CFS has been bad since then (about 5 weeks).In context ↗ | Severe | |
| August 2025 | got a stairlift, illness now mostly stableI got a stairlift. Massive difference. Like life changing. My illness is now mostly stable instead of mostly chaotic.In context ↗ | Severe | |
| 2026 | uses an electric wheelchair to get out into the garden; PTSD still worsens MEit's actually comfy and I can easily move myself into the shade/sun as needed and can easily ride back inside for more snacks etc.In context ↗ | Severe |
Adverse events
- Meditation, yoga, breathwork“I’ve been trying to meditate for years and can’t manage more than 20 minutes. Around that point, it’s like my brain gets bored and starts paying more attention to the physical pains and I feel worse.” In context ↗ Made symptoms worse
- “an invasive test like a colonscopy or other scopes have triggered huge flare ups in me” In context ↗ Made symptoms worse
- “between long term Buscopan ... and steroid creams for eczema were raising my heart rate” In context ↗ Heart rhythm problems
- “between long term Buscopan ... and steroid creams for eczema were raising my heart rate” In context ↗ Heart rhythm problems
- Pelvic floor physical therapy“I now have issues with relaxing my pelvic floor muscles since doing pelvic floor exercises a few years back. It makes it difficult to go to the toilet.” In context ↗ Other
- Paxlovid / nirmatrelvir“I started vomiting again soon after and was up all night vomiting.” In context ↗ Gut side effects
- Amitriptyline (Elavil)“Damn side effects!! Amitriptyline gave me palpitations and a really fast heart rate.” In context ↗ Heart rhythm problems
- Graded exercise therapy (GET)“Every physio or doctor since has explained GET to me in a terrible way and I’ve got worse doing it their way.” In context ↗ Made symptoms worse
- Duloxetine (Cymbalta)“But recently I get hot sweats from medication ... Duloxetine which I think is called Cymbalta elsewhere.” Side effects
- Antidepressants (unspecified), Duloxetine (Cymbalta), Amitriptyline (Elavil)“Mostly I had nausea, weird vivid dreams, excess sweating and dry mouth.” In context ↗ Side effects
- Antidepressants (unspecified), Duloxetine (Cymbalta), Amitriptyline (Elavil)“the side effects were tiring to cope with which then made the ME/CFS worse.” In context ↗ Made symptoms worse
- Hormonal birth control (unspecified)“I take the pill. It has some negative side effects.” In context ↗ Side effects
- “I got high blood pressure from a different medication and had to stop the pill until my blood pressure came back down again.” In context ↗ Other
- COVID vaccination as treatment“My 7th vaccine, I ached all over so intensely that I could not move at all. It was hell. ... my ME/CFS has been bad since then (about 5 weeks).” In context ↗ Made symptoms worse
- Mesalazine / mesalamine“I took them for 6 years ... I kept saying the symptoms were getting worse so they would just increase the dose.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I appear to have PEM and fit all the criteria for diagnosis of ME
In context ↗ - Sleep problems
I only sleep about 12-14 hours a day now.
In context ↗ - Pain & fibromyalgia
my main symptom besides fatigue is muscle and joint pains all over my body
In context ↗ - Brain fog
I hope this makes sense (brain fog isn’t great today).
In context ↗ - Gut problems
I have severe acid reflux and severe IBS. And I have ulcerative colitis.
In context ↗ - Flu-like symptoms
13 years later and they are still swollen.
In context ↗ - Heart symptoms & palpitations
My resting heart rate is normally around 90bpm.
In context ↗ - Light & noise sensitivity
I cannot handle much stimulation now at all.
In context ↗ - Mast cell (MCAS) & allergies
I'm allergic to aspirin, and menthol (salicylates allergy).
In context ↗ - Anxiety & low mood
I went through a traumatic event age 14 which led to PTSD, with depression and anxiety and an eating disorder.
In context ↗
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