ME/CFS
Moderate → somewhat betterIll 3 years before improving or writing
Severe ME/CFS with rolling PEM, somewhat better with pacing and rest
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
I had a doctor confirm my ME/CFS diagnosis this week
In context ↗ - At worst: Moderate
I’m moderate, mostly housebound for reference, sometimes out of my house for a few hours but usually not bedbound.
In context ↗ - Now: Somewhat better
I feel so lucky that I am able to travel when two years ago I could not handle leaving my house most days
In context ↗ - Began after: COVID
it seems EM had a slow onset after a covid infection in 2022
In context ↗
Read from 75 of their posts and comments; links to the 35 this page draws on
Summary
They are in France and fell ill after a COVID infection in 2022, and were diagnosed with ME/CFS in February 2025. Their worst was rolling PEM and a severe state eighteen months before January 2026; they then improved on aggressive rest, pacing, POTS/MCAS medication and LDN. A COVID reinfection in September 2025 and home oxygen therapy in April 2026 set them back. By August 2026 they could travel on holiday with pacing and mobility aids; they had last described themselves as moderate in January 2026.
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What they tried
What they credit
Also tried
medication for lowering my hr· Helpedyoga nidra and breathing exercises· Helpedlow prescription glasses· HelpedValenflaxine· Helpedantihistamines· HelpedXanax· HelpedCoQ10· No changedrinkable B12· No changegraded physical therapy· Worseshort yoga sessions· Worseamitriptyline· Worselymphatic drainage· Worseat home oxygen therapy· Much worsesupplements· Not saidcompression socks· Not said
Their words about each treatment
- graded physical therapy · Worse
Had a terrible crash after only 30 minute physical therapy twice a week when I was misdiagnosed with fibromyalgia.
In context ↗ - pacing · Helped a lot
took me months to decrease my activity enough to not crash non stop and be stable enough no to be constantly triggered
In context ↗ - aggressive rest · Helped
At first it felt quite good, I noticed that I actually needed the rest ... I seemed to recover from activity quicker by taking these breaks.
In context ↗ - supplements · Not said
I also started some medication, mainly for POTS and some supplements but nothing miraculous.
In context ↗ - medication for lowering my hr · Helped
It also allowed me to get a pots diagnosis and medication for lowering my hr which did help a lot of course.
In context ↗ - Garmin vivoactive · Helped
I really believe I would not have made so much progress without tracking my heart rate.
In context ↗ - short yoga sessions · Worse
I used to do short yoga sessions at home but I think now it doesn't work well for me anymore.
In context ↗ - CoQ10 · No change
It's been almost a month, Im also taking other meds so it's hard to say if it's making an impact. But anyhow I haven't seen any major improvement
In context ↗ - drinkable B12 · No change
I started a few weeks ago, I do not see any major improvements yet.
In context ↗ - yoga nidra and breathing exercises · Helped
Sometimes I do yoga nidra or some breathing exercice at the beginning to help get in a good relaxing state.
In context ↗ - low prescription glasses · Helped
I had no idea such a low prescription could make a difference, but the eye fatigue was real !! Screens are much more manageable since.
In context ↗ - Valenflaxine · Helped
Valenflaxine helped a bit for my brain fog, but no effect on general fatigue
In context ↗ - no-carb diet · Helped
reducing carbs to almost zero, this seemed to impact me most
In context ↗ - CBD · Helped
CBD helps me get back into blue zone too sometimes
In context ↗ - antihistamines · Helped
Mcas meds helped a bit but my nose is still congested
In context ↗ - vagus nerve stimulation (TENS) · Helped
I believe it contributed to some improvement for me but of course I can't be sure as it could also just be me getting better at pacing !
In context ↗ - compression socks · Not said
I also wear compression socks most of the time, but I don't know how impactful this is.
In context ↗ - CBD cream · Helped
I use CBD cream for my pain in these areas and it usually helps
In context ↗ - Xanax · Helped
I've had a good experience a few days ago with taking Xanax after an event. Still out of PEM 3 days after
In context ↗ - amitriptyline · Worse
It did help me sleep but I did not notice any other improvements.
In context ↗ - LDN · Helped
I also have more energy and my PEM threshold feels higher so I still feel like it's a win.
In context ↗ - at home oxygen therapy · Much worse
When I started I kept deteriorating for days, I felt wired, my HRV was tanking, my resting HR rising
In context ↗ - lymphatic drainage · Worse
I started at some point but I was also seeing some kind of strong detox effect from it and was not strong enough to deal with it at that point.
In context ↗
Approaches: Diet · Other drugs and medicines · Pacing · Radical rest · Vagus nerve stimulation
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 | After |
|---|---|---|
| 2022 | slow onset of ME/CFS after a COVID infectionit seems EM had a slow onset after a covid infection in 2022In context ↗ | |
| 2024 | severe state with rolling PEM, mostly orange on the watch even at restI got severe (or at least in rolling PEM that put me in a severe state) one and a half year agoIn context ↗ | |
| 2025-03 | diagnosed, on sick leave, started aggressive rest and careful pacingI think I am moderate but on the mild side, I can’t work right now, I can leave the house but not everydayIn context ↗ | Pacing and the energy envelope |
| 2025-04 | bad PEM after restarting water physiotherapy, bed bound for a weekI had a quite bad PEM that kept me kind of bed bound for a week and lasted probably 3 weeks totalIn context ↗ | |
| 2025-08 | music festival and outings without crashingI went to a music festival, it’s been a week now and I’m okayIn context ↗ | Pacing and the energy envelope |
| 2025-09 | COVID reinfection, back in bed and barely able to walk down the corridorGot Covid again…I was doing so much better with my pacing ... And now I’m back in bed barely able to walk to the end of the corridorIn context ↗ | |
| 2025-11 | able to do more in the day, new hobbies and cookingI am able to do more during my days and it feels great.In context ↗ | |
| 2026-01 | higher PEM threshold and HRV up on LDN, MCAS and POTS medicationI’ve started LDN 4 month ago and I’m seing more progressIn context ↗ | Low-dose naltrexone |
| 2026-04 | deteriorating for 10 days on at-home oxygen therapyWhen I started I kept deteriorating for days ... My baseline was going down everydayIn context ↗ | |
| 2026-08 | first holiday since diagnosis, with pacing, mobility aids and planningI’m on my first holiday since I’ve been diagnosed two years ago ! ... two years ago I could not handle leaving my house most daysIn context ↗ |
Adverse events
- Graded exercise therapy (GET)“you made me aware of the dangers of graded physical therapy so I stopped very quickly when it was prescribed to me and I started getting worse” In context ↗ Made symptoms worse
- Graded exercise therapy (GET)“they did send me to physical therapy after based on these results and then I crashed hard.” In context ↗ Made symptoms worse
- Graded exercise therapy (GET)“Had a terrible crash after only 30 minute physical therapy twice a week when I was misdiagnosed with fibromyalgia.” In context ↗ Made symptoms worse
- Graded exercise therapy (GET)“when I went back again I had a quite bad PEM that kept me kind of bed bound for a week and lasted probably 3 weeks total” In context ↗ Made symptoms worse
- “When I started I kept deteriorating for days, I felt wired, my HRV was tanking, my resting HR rising, my stress level went up and my sleep worsen.” In context ↗ Made symptoms worse
- “Yesterday I tried just 5 minutes of oxygen therapy again and once again sleep was bad, HRV low, and I felt wired the next day.” In context ↗ Insomnia from treatment
- Low-dose naltrexone“tried going up but fatigue was worse” In context ↗ Made symptoms worse
- Low-dose naltrexone“I do feel a little wirred and I have more difficulty falling asleep.” In context ↗ Insomnia from treatment
- Amitriptyline (Elavil)“long term it did not help and probably even worsen things for me” In context ↗ Made symptoms worse
- Manual lymphatic drainage“I started at some point but I was also seeing some kind of strong detox effect from it and was not strong enough to deal with it at that point.” In context ↗ Herx / die-off reaction
Symptoms mentioned
Anxiety & low moodBrain fogHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
- Post-exertional malaise
I did more for a few days, but now I’m in PEM again
In context ↗ - Brain fog
I also feel the brain fog is very difficult for me
In context ↗ - POTS & dysautonomia
I have POTS and I’ve noticed that after meals my HRV was lower for many hours and I couldn’t get any rest.
In context ↗ - Mast cell (MCAS) & allergies
I have medication for my mcas and my pots now so this probably is the reason why I was able to improve.
In context ↗ - Sleep problems
I sleep a lot too but sleep is “un refreshing “ according to my watch.
In context ↗ - Pain & fibromyalgia
I also had a diagnosis of fibromyalgia at the time which I was not sure about and turns out once I was out of rolling PEM I had no more daily pains.
In context ↗ - Light & noise sensitivity
for exemple I found that noise make things worse so I avoid busy cafes
In context ↗ - Heart symptoms & palpitations
my HR gets triggered by brushing my teeth and stuff
In context ↗ - Muscle weakness
I was so weak, in so much pain, dizzy… but still walking and carrying my suitcase !
In context ↗ - Anxiety & low mood
Agressive rest became more difficult and less relaxing because my anxiety was bad.
In context ↗ - Vision problems
I had no idea such a low prescription could make a difference, but the eye fatigue was real !!
In context ↗
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