ME/CFS
Moderate → no benefit
Bedridden for months after an ME/CFS crash, now moderate/severe, no improvement
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
I have ME and ADHD
In context ↗ - At worst: Moderate
I'm now in the moderate / severe border.
In context ↗ - Now: No benefit
Worse in general though it does fluctuate over the year.
In context ↗ - Began after: another virus
When I first got M.E. (post swine flu and pneumonia)
Read from 60 of their posts and comments; links to the 36 this page draws on
Summary
Fell ill with ME/CFS after swine flu and pneumonia, starting mild, and worsened after switching from citalopram to sertraline and again after COVID, which added a long COVID diagnosis. One crash left them bedridden for several months; they now sit on the moderate/severe border. Low-dose lisdexamfetamine helps their ADHD and anxiety and lets them rest, but higher doses mask fatigue and cause crashes; curcumin helped night-time joint pain.
Ask Miruvor AI
What they tried
Also tried
citalopram· Helped · wore offtai chi· Helpedpilates· Helpedsports drinks· Helpedgradual build-up of activity after a crash· Helpedextended daily rest· Helpedbreath retraining guided relaxation / meditation· Helpedlisdexamfetamine (elvanse)· Helpedprotein powder / extra protein· Helpedavoiding alliums· Helpedmultiple small meals and snacks· Helpedcircumin (curcumin)· HelpedVisible app· Helpedspironolactone· No changeCBT· No changegluten-free diet· No changemultivitamin· No changelong COVID fatigue management course· No changecreatine· No changeconstant heart rate monitor· Worsesertraline· Much worsedaily exercise· Much worseyoga (ten minute yoga for chronic pain)· Not saidGarmin Instinct 2· Not said
Their words about each treatment
- citalopram · Helped
found it responds well to citalopram however, since having the M.E. I don't tolerate drugs well
In context ↗ - sertraline · Much worse
Switching medications. Moved from citalopram to sertraline and it really spiked my symptoms and they never really recovered.
In context ↗ - daily exercise · Much worse
I did it most days. ... I'm now moderate/severe. ... This is not unrelated to exercising every day when mild!
In context ↗ - spironolactone · No change
I had a course of it when I had shingles a couple of years ago and unfortunately it didn't do anything for the M.E. symptoms
In context ↗ - CBT · No change
was sent off to various CBT people which was very hard work and achieved nothing
In context ↗ - tai chi · Helped
I found Tai Chi helped a bit. really low impact and it felt like my joints had been oiled afterwards
In context ↗ - pilates · Helped
Pilates and tai chi.
In context ↗ - yoga (ten minute yoga for chronic pain) · Not said
I use this ten minute yoga for chronic pain one a few times a week
In context ↗ - sports drinks · Helped
I've found some (but admittedly not much) effect from them.
In context ↗ - gradual build-up of activity after a crash · Helped
took probably two months of building up from sitting up in bed, through walking on the flat in the house then stairs then to stepping outside
In context ↗ - extended daily rest · Helped
I do always have an extended rest (often with some relaxation / meditation thrown in) at about 2-2.30 ish. ... It's not so much an option as a necessity for me!
In context ↗ - breath retraining guided relaxation / meditation · Helped
I use the breath retraining guided relaxation / meditation ... which is only about 10 mins long and I find it very helpful
In context ↗ - lisdexamfetamine (elvanse) · Helped
I'm on 30mg elvanse and it took about a month to settle for me. It was hard on the M.E. but the effect on the ADHD (and especially anxiety) was so marked that I thought it was worth it.
In context ↗ - protein powder / extra protein · Helped
I've found that adding additional protein to my diet has been helpful in at least marginally increasing my energy levels and reducing muscle wastage
In context ↗ - gluten-free diet · No change
no gluten thanks to a mistaken attempt to try gluten free (not convinced it makes a difference)
In context ↗ - avoiding alliums · Helped
no alliums ('cos they trigger IBS)
In context ↗ - multivitamin · No change
Not really to be honest. I take a multivitamin because I'm often too knackered to cook properly
In context ↗ - multiple small meals and snacks · Helped
I have 3 small meals and three reasonable sized snacks a day which seems to work for me.
In context ↗ - long COVID fatigue management course · No change
was sent off to a couple of online courses from the local Long Covid hub and didn't find them terribly helpful
In context ↗ - Garmin Instinct 2 · Not said
Personally I went for a Garmin Instinct 2 which seemed to do everything I wanted it to do
In context ↗ - circumin (curcumin) · Helped
after a week or two of taking it regular it's helped to the extent that I can now mostly sleep through the night
In context ↗ - Visible app · Helped
I've been using the free version of the visible app for a long time now and found it useful
In context ↗ - constant heart rate monitor · Worse
I found that having a constant heart rate monitor just stressed me out and was counterproductive
In context ↗ - creatine · No change
Tried for a couple of months taking a (roughly) 5 g daily dose split into four smaller doses through the day. I can't say that I noticed any difference
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| onset | M.E. began after swine flu then pneumoniaWhen I first got M.E. (post swine flu and pneumonia) I was in the mild/moderate rangeIn context ↗ |
| — | switched from citalopram to sertraline, symptoms spiked and never dropped backEven after coming off the sertraline my M.E. symptoms haven't dropped back and are now in the moderate/severe range.In context ↗ |
| — | one long crash, months in bedspent several months in bed and many more months slowly recovering from thatIn context ↗ |
| 2023-01-19 | rebuilt slowly after the long crash, walking short distances with a stickEven at the end of that two months I was only walking maybe 100 meters or so and often using a stick.In context ↗ |
| — | caught COVID, got worse and was given a long COVID diagnosisI got covid and got worse - I got an LC diagnosis to go with ME but that's probably more because of the way the NHS works than anything else.In context ↗ |
| 2026-08 | still on the moderate/severe border; ADHD meds do nothing for the ME itselfIt's done nothing for my ME/LC apart from if I take a high dose it masks fatigue leading to more frequent crashes.In context ↗ |
Adverse events
- Citalopram (Celexa)“we've tried to increase the citalopram (alternating 10 and 20mg tablets) and it seems to be spiking the M.E. symptoms yet again” In context ↗ Made symptoms worse
- Citalopram (Celexa), Sertraline (Zoloft)“Moved from citalopram to sertraline and it really spiked my symptoms and they never really recovered.” In context ↗ Made symptoms worse
- Lisdexamfetamine (Vyvanse, Elvanse)“although the ADHD meds do wonders for my head they have made the CFS symptoms worse” In context ↗ Made symptoms worse
- Lisdexamfetamine (Vyvanse, Elvanse)“I have recently trialed 40mg which helps more with the ADHD but leads to more sleep disruption and, after a couple of weeks, getting more flare ups.” In context ↗ Made symptoms worse
- Lisdexamfetamine (Vyvanse, Elvanse)“I'm on 30mg elvanse and it took about a month to settle for me. It was hard on the M.E.” In context ↗ Made symptoms worse
- Lisdexamfetamine (Vyvanse, Elvanse)“I absolutely can't have any caffeine on days that I take the elvanse though or my heart rate is through the roof!” In context ↗ Heart rhythm problems
- Lisdexamfetamine (Vyvanse, Elvanse)“it tends to mask the start of fatigue which leads to more and worse crashes” In context ↗ Made symptoms worse
- Lisdexamfetamine (Vyvanse, Elvanse)“when I try and increase it then it masks the start of fatigue and then I get really, really bad PEM” In context ↗ Made symptoms worse
- Everyday exercise and activity“This is not unrelated to exercising every day when mild!” In context ↗ Made symptoms worse
- Symptom-tracking apps and wearables (Visible)“I found that having a constant heart rate monitor just stressed me out and was counterproductive” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Anxiety & low moodGut problemsHeadaches & migraineMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
it feels like being hit by wall of pain, fatigue and nausea
In context ↗ - Pain & fibromyalgia
I struggle a lot with being woken with joint pain in the night
In context ↗ - Neuropathy & tingling
burning/tingling muscles and random electric shock feelings
In context ↗ - Muscle weakness
shaky, sweaty, weak, numb, tingly etc.
In context ↗ - Anxiety & low mood
I have bad anxiety that pre-dates the M.E.
In context ↗ - POTS & dysautonomia
I also have a PoTS diagnosis
In context ↗ - Sleep problems
my sleep quality nosedives
In context ↗ - Gut problems
no alliums ('cos they trigger IBS)
In context ↗ - Temperature regulation
constantly cold hands and feet and really sore fingertips and toes
In context ↗