ME/CFS
Severe → relapsedIll 3.5 years before improving or writingNeeds ongoing treatment
Mostly horizontal and housebound with ME/CFS, acupuncture and qigong helped, then relapsed
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3.5 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
I was in quite a bit of denial about being CFS/ME level sick
In context ↗ - At worst: Severe
I was at a 2-3 when we started(housebound/mostly horizontal).
In context ↗ - Now: Relapsed
I’m in a PEM crash flare worst ever and I have not come back to baseline yet.
In context ↗
Read from 16 of their posts and comments; links to the 12 this page draws on
Summary
Glacier 43925 had been ill with ME/CFS for about 3.5 years, and before acupuncture was housebound and mostly horizontal. Acupuncture with a skilled practitioner plus daily qigong lifted their energy from 2-3 to 6, and by 2025 they were moderate, able to run errands and drive. They credited LDN, propranolol, diet and pacing for slow further gains, but by August 2026 they were in the worst PEMA crash/flare they had experienced.
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What they tried
What they credit
acupuncture (TCM)· Helped a lotqigong· Helped a lot · mainPrimal Trust brain training program· Helped a lot · mainLDN· Helped a lot · mainpropranolol· Helpedlow histamine diet· Helpedquercetin· HelpedPepcid· Helpedvagal toning practices· Helpedtrauma therapy with Brainspotting· HelpedEFT tapping· Helpeda good therapist· Helpedfish oil and SPM omegas· HelpedD3-K2· Helpedmagnesium and electrolytes· Helpedmagnesium and electrolytes· Helpedl-theanine· HelpedB vitamins· Helpedtraditional Chinese herbs· HelpedCBT-I for sleep· Helpedproper hydration· Helpedpacing· Helpedrest· Helpedsomatic awareness· HelpedAtivan / benzos· Helped
Also tried
Emotion Code / Body Code· HelpedNSAIDs· HelpedPectaSol (modified citrus pectin)· WorseB vitamins / thiamine protocol· Not said
Their words about each treatment
- acupuncture (TCM) · Helped a lot
and seriously working with her has been a game changer. I’m doing so much better after only 2.5 months of tcm with her.
In context ↗ - Emotion Code / Body Code · Helped
I’ve used this modality to help process emotions and can say it’s definitely been helpful.
In context ↗ - qigong · Helped a lot
I started doing qigong at my doctors suggestion, and I attribute a lot of my recovery to this.
In context ↗ - B vitamins / thiamine protocol · Not said
When I first started I could only consume foods with b vitamins because I reacted to strongly to the vitamins themselves.
In context ↗ - Primal Trust brain training program · Helped a lot
Primal Trust Brain training program online helped me learn to pace better and start regulating my very dysregulated nervous system. This reduced my symptoms and calmed my stress levels.
In context ↗ - LDN · Helped a lot
LDN has continued to be a powerhouse for my recovery.
In context ↗ - propranolol · Helped
I really think the beta blocker has made it possible for me to eat more diversely.
In context ↗ - low histamine diet · Helped
This looks like going low histamine diet the week prior to menstruation ... It doesn't fix it, but it reduces and the hard days are fewer.
In context ↗ - quercetin · Helped
Low histamine diet plus quercetin and Pepcid helped mitigate flares.
In context ↗ - Pepcid · Helped
In the past a couple days of Ativan and Pepcid, some rest and nourishing soups and I was feeling on my way to “normalish”.
In context ↗ - vagal toning practices · Helped
Daily vagal toning practices/ritually throughout the day helped train my system to locate more regulated states.
In context ↗ - trauma therapy with Brainspotting · Helped
Trauma therapy and processing with Brainspotting started unpacking the trauma in my system without having to talk it out alone.
In context ↗ - EFT tapping · Helped
EFT tapping helped with daily emotional validation and additional safe trauma processing.
In context ↗ - a good therapist · Helped
A good therapist helped rebuild my bridge to connection after so much medical trauma
In context ↗ - fish oil and SPM omegas · Helped
Fish oil 2-4g daily and SPM omegas also helped my brain. My mood and personality, executive functioning improved with their addition.
In context ↗ - D3-K2 · Helped
some basic supplements like B’s, D3-K2, magnesium, electrolytes, and omegas as well as ltheanine to help with calming, all the things I choose to put in my body are helpers.
In context ↗ - l-theanine · Helped
as well as ltheanine to help with calming, all the things I choose to put in my body are helpers.
In context ↗ - B vitamins · Helped
some basic supplements like B’s, D3-K2, magnesium, electrolytes
In context ↗ - traditional Chinese herbs · Helped
Along with mindset, nervous system regulation, trauma work, pacing myself, proper balanced diet, CBT-I for sleep, traditional Chinese herbs, proper hydration
In context ↗ - CBT-I for sleep · Helped
CBT-I for sleep
In context ↗ - proper hydration · Helped
proper hydration
In context ↗ - pacing · Helped
Pacing, vagus nerve and brain training, diet, rest, trauma therapy and working on medical trauma, reducing outside stress wherever possible.
In context ↗ - rest · Helped
I will of course need to rest before and after this
In context ↗ - somatic awareness · Helped
Somatic awareness helped me learn how to work with my body better.
In context ↗ - PectaSol (modified citrus pectin) · Worse
I am 7 days into a flare which seemed to be triggered by pectasol(after 3 days on 1-2 mg doses)
In context ↗ - Ativan / benzos · Helped
a couple days of Ativan and Pepcid, some rest and nourishing soups and I was feeling on my way to “normalish”
In context ↗ - NSAIDs · Helped
That helps take the edge off(my rescue kit includes NSAIDS and benzos, which do help a little
In context ↗
Approaches: CBT & mindset · H2 blockers · POTS medication · Alternative therapies · Amino acids and carnitine · Benzodiazepines · Beta-blockers · Brain retraining · Diet · Mind-body practices · Pacing · Radical rest · Supplements · Trauma & somatic work · Vagus nerve stimulation
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. The chart starts 12 months after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | became ill with ME/CFSIt’s been 3.5 years, and I’m not recovered.In context ↗ | Not stated | |
| 2022-11 | needle shock during an acupuncture session caused a major relapseI recently experienced needle shock from an acupuncture session and it completely caused a major relapse.In context ↗ | Severe | |
| 2022-12 | housebound and mostly horizontal, energy 2-3, on deaths doorwhen we started(housebound/mostly horizontal)In context ↗ | Severe | |
| 2023-02 | energy up to 6, able to run errands, cook and do dishesI’m doing so much better after only 2.5 months of tcm with her. ... Now I can run errands, cook, do dishes and other tasks right afterwards.In context ↗ | Mild | Qigong, tai chi and isometric yoga |
| 2025-05-06 | self-rated moderate, can run errands, drive and work online 90 minutesBut I’m moderate and not severe. I can run errands now. I can drive.In context ↗ | Moderate | Low-dose naltrexone |
| 2026-04-13 | 7-day flare after pectasol, felt they slid backwardsI am 7 days into a flare which seemed to be triggered by pectasol(after 3 days on 1-2 mg doses)In context ↗ | Moderate | |
| 2026-08-09 | worst PEM crash ever, not back to baseline, sliding from moderate to severeI’m in a PEM crash flare worst ever and I have not come back to baseline yet.In context ↗ | Severe |
Adverse events
- Acupuncture“I recently experienced needle shock from an acupuncture session and it completely caused a major relapse. I went into shock on the table from the needles.” In context ↗ Made symptoms worse
- Thiamine / benfotiamine“When I first started I could only consume foods with b vitamins because I reacted to strongly to the vitamins themselves.” In context ↗ Side effects
- Modified citrus pectin (PectaSol)“I am 7 days into a flare which seemed to be triggered by pectasol(after 3 days on 1-2 mg doses), and one of the symptoms around day 5 was reactivity in my bladder akin to cystitis symptoms.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodGut problemsHeadaches & migraineLight & noise sensitivityMast cell (MCAS) & allergiesPOTS & dysautonomiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
in the worst PEMA crash/flare I’ve ever experienced
In context ↗ - POTS & dysautonomia
I still have POTS symptoms so I sit for some of the exercises
In context ↗ - Mast cell (MCAS) & allergies
I get serious about histamine sensitivity and management related to my cycles.
In context ↗ - Headaches & migraine
taking my rescue remedies for migraine/flare ups
In context ↗ - Gut problems
migraine intensity, GI troubles, cramp intensity
In context ↗ - Sleep problems
combined with poor sleep, nutrition, and disorganized functioning
In context ↗ - Anxiety & low mood
which do help a little to calm the accompanying anxiety with a crash
In context ↗ - Light & noise sensitivity
having to handle being stupidly limited by exhaustion and overstimulation
In context ↗ - Temperature regulation
temperature dysregulation, fatigue and agitation
In context ↗
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