ME/CFS
Severe → much betterIll 38 years before improving or writingNeeds ongoing treatment
ME/CFS at rock bottom, now much better but still often in bed with pacing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 38 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I've had CFS for 31 years
In context ↗ - At worst: Severe
Largely bedridden, mobility scooter, couldn't walk far. Could go out in car once or twice a week.
In context ↗ - Now: Much better
From this rock bottom, I clawed my way back to being functional. Not well enough to work enough hours to support myself. But to have a reasonable life.
In context ↗ - Began after: another virus
I went for a walk and felt like I had the flu coming on.
Read from 498 of their posts and comments; links to the 69 this page draws on
- Nov 2019
- Apr 2022
- Apr 2026
- Nov 2021
- Jul 2021
- Jun 2021
- Jan 2020
- Jan 2020
- Dec 2019
- Feb 2022
- Feb 2020
- Aug 2022
- Nov 2020
- Mar 2022
- Aug 2023
- Aug 2026
- Feb 2025
- Aug 2024
- Jul 2021
- May 2022
- Oct 2021
- Aug 2022
- Aug 2024
- Dec 2022
- Aug 2022
- Jul 2022
- Sep 2021
- Oct 2020
- Mar 2020
- Mar 2020
- Sep 2023
- Jun 2024
- Apr 2025
- Aug 2020
- Aug 2021
- Mar 2022
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- Jun 2024
- Oct 2020
- Apr 2022
- Apr 2026
- Jan 2021
- Jun 2026
- Dec 2019
- Aug 2020
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- Oct 2023
- Jun 2025
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- Jul 2026
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- Mar 2026
- Jul 2023
- Nov 2024
- Sep 2020
- Jun 2020
- Dec 2019
- Oct 2026
- Aug 2022
Summary
Cedar 14930 has had ME/CFS for over 30 years, with a sudden flu-like onset, and deteriorated until hitting rock bottom around 11 years before 2020; since then they have improved but remain far from well, often spending 16–23 hours a day in bed and unable to work more than 1–2 hours a day. They lost their house and career and have been on an Invalids Benefit for over a decade. APS microcurrent, D-ribose before it caused palpitations, Threelac probiotics, pacing, walking and a dog helped; vagus-nerve microcurrent gave high-energy days followed by crashes.
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What they tried
What they credit
pacing· Helped a lot · maind-ribose· Helped a lot · main · wore offMetagenics Adrenotone / adaptogenic herbs· Helped a lot · mainAction Potential Stimulation microcurrent machine· Helped a lot · maingentle non-aerobic walking and exercise· Helped a lot · mainThreelac / Fivelac probiotics· Helped a lotCoQ10· Helped a lot · mainnicotine gum· Helped a lot · mainmoringa and bupleurum· Helped a lot · mainmould avoidance· Helped a lotButeyko breathing· Helped a lotlow-sugar and anti-inflammatory diet· Helpedlow-sugar and anti-inflammatory diet· Helpedthyroid medication· Helpedmidodrine· Helpedcreatine· Helpedantihistamines· Helpedfish oil· Helpedcurcumin and piperine· Helpedcold water· Helpedloving-kindness meditation and positive psychology· Helpedvagus nerve microcurrent stimulation· Helped
Also tried
baby aspirin· Helped a lotcannabis cream· Helped a lotSt John's Wort· Helpedquercetin· Helpedmagnesium and iron· Helpedmagnesium and iron· HelpedIV saline and electrolyte powder· Helped · wore offIV saline and electrolyte powder· Helped · wore offCBT and psychotherapy· HelpedWeight Watchers· HelpedFeldenkrais and stretches· Helpedlymphatic drainage massage· Helpedgarlic, clove oil and oregano oil· Helpedgarlic, clove oil and oregano oil· Helpedgarlic, clove oil and oregano oil· HelpedGaviscon· Helpedalcohol· Helpednaturopathy· Helpedlavender oil and chamomile tea· Helpedlavender oil and chamomile tea· Helpedlow-dose naltrexone· No changeliving in a van· No changestatin· Worsemassage· Worsemercury chelation with DMSA/DPS· Much worsevitamin D· Not saidvitamin C· Not saidNAC· Not saidSAMe· Not saidacetyl l-carnitine· Not saidallergy shots· Not saidtraditional Chinese medicine, faith healing and homeopathy· Not saidibuprofen· Not saidNT Factor· Not saidAntidepressants (unspecified)· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- pacing · Helped a lot
I improved when I finally started pacing!
In context ↗ - d-ribose · Helped a lot
Taking d-ribose really marked a turning point in my recovery.
In context ↗ - Metagenics Adrenotone / adaptogenic herbs · Helped a lot
I've found these herbs really helpful for PEM
In context ↗ - Action Potential Stimulation microcurrent machine · Helped a lot
It has made an amazing difference to how much I can do.
In context ↗ - gentle non-aerobic walking and exercise · Helped a lot
After 10 years of gradually building up I can now walk for one to two hours a day, up from less than five minutes.
In context ↗ - Threelac / Fivelac probiotics · Helped a lot
what made the critical difference was taking a probiotic called Threelac
In context ↗ - low-sugar and anti-inflammatory diet · Helped
I have found an anti-inflammatory diet, with low processed food, and high fruit veg, chicken, wholegrain and legumes helps.
In context ↗ - St John's Wort · Helped
I also take st John's wort and an iron tab at night and they knock me out.
In context ↗ - baby aspirin · Helped a lot
I've been prescribed baby aspirin and they work really well.
In context ↗ - statin · Worse
I stopped the statin because of side effects
In context ↗ - thyroid medication · Helped
She prescribed hypothyroid meds which made a real difference.
In context ↗ - midodrine · Helped
put me on mifodrine, which has also helped
In context ↗ - CoQ10 · Helped a lot
It's been a game changer for me.
In context ↗ - creatine · Helped
did reduce my number of days of crashes. Only thing I've ever found that did.
In context ↗ - nicotine gum · Helped a lot
Nicotine gum continues to make a big difference to my functioning
In context ↗ - low-dose naltrexone · No change
I personally didn't find it helped but many have.
In context ↗ - antihistamines · Helped
Labixten was fantastic. No nausea, no sleepiness.
In context ↗ - quercetin · Helped
quercetin to stabilise my mast cells
In context ↗ - fish oil · Helped
I've found fish oil helpful for heart symptoms.
In context ↗ - moringa and bupleurum · Helped a lot
I take 2 plant anti-virals, which are also anti-inflammatory and anti-fungal, and have found them very helpful. Moringa and bupleurum.
In context ↗ - curcumin and piperine · Helped
I also started taking other anti-inflammatories based on veges. Curcumin and piperade.
In context ↗ - magnesium and iron · Helped
I started magnesium for another reason. So I didn't make the connection with fewer palpitations
In context ↗ - vitamin D · Not said
vit d to reduce severity of covid
In context ↗ - vitamin C · Not said
vit c and a multi vitamin
In context ↗ - NAC · Not said
I took coq10, NAC, SAMe, quercetin, fish oil, vit c and a multi vitamin.
In context ↗ - acetyl l-carnitine · Not said
I'm also taking acetyl l-carnitine.
In context ↗ - IV saline and electrolyte powder · Helped
I've tried IV saline and it was unpredictable
In context ↗ - cold water · Helped
I've often found I feel a lot better if I spend 30-60 mins in cold water
In context ↗ - CBT and psychotherapy · Helped
I do both and find them very helpful.
In context ↗ - loving-kindness meditation and positive psychology · Helped
Loving kindness meditation. Once you have the mantra down you can do it even when very sick.
In context ↗ - Weight Watchers · Helped
I went on Weight Watchers without enthusiasm
In context ↗ - Feldenkrais and stretches · Helped
I love Feldenkrais.
In context ↗ - massage · Worse
I generally avoid massage now because no matter how much I ask them to be gentle most masseuses hurt me.
In context ↗ - lymphatic drainage massage · Helped
I do lymphatic drainage massage on myself and it helps with congestion/tinnitus
In context ↗ - cannabis cream · Helped a lot
I've found the cream marvelous for pain, anxiety and sleep.
In context ↗ - garlic, clove oil and oregano oil · Helped
If you can't afford that raw garlic also helps.
In context ↗ - Gaviscon · Helped
The gaviscin st least takes away the burning in my throat.
In context ↗ - alcohol · Helped
Someone suggested taking an alcoholic drink at the end of a busy day to stimulate the central nervous system and reduce PEM. I've found it works
In context ↗ - naturopathy · Helped
Then found a naturopath who really helped me.
In context ↗ - mercury chelation with DMSA/DPS · Much worse
chelation with DMSA and DPS? Heavy Sulphur drugs that made me much worse
In context ↗ - mould avoidance · Helped a lot
Getting out of a mouldy flat into a dry one made SUCH a difference!
In context ↗ - living in a van · No change
I think my health has stayed pretty steady since I moved into the van, no big improvement.
In context ↗ - allergy shots · Not said
ATP microcurrent machine, coq10, allergy shots, dribose, adaptogenic herbs
In context ↗ - traditional Chinese medicine, faith healing and homeopathy · Not said
traditional Chinese medicine, faith healing, homeopathy
In context ↗ - lavender oil and chamomile tea · Helped
I find chamomile tea great.
In context ↗ - Buteyko breathing · Helped a lot
I do a breathing practice called buteyko for my asthma and it's very effective.
In context ↗ - ibuprofen · Not said
If desperate I take an ibuprofen.
In context ↗ - vagus nerve microcurrent stimulation · Helped
the vagus nerve stimulation is giving me high energy on the day
In context ↗ - NT Factor · Not said
Currently trying NT factor to repair mitochondrial walls and magnesium to help mito function.
In context ↗ - Antidepressants (unspecified) · Not said
I had bad experiences with tricyclic antidepressants
In context ↗ - COVID vaccination as treatment · Not said
Had a real bad week after my second booster despite taking antihistamines. New symptom - feeling nauseous when I stand up and move.
In context ↗
Approaches: H1 antihistamines · POTS medication · Alternative therapies · Diet · Mind-body practices · Mould avoidance · Pacing · Physiotherapy and rehab · Supplements · Thyroid hormones · 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 1988 | Flu at age 30; kept working for 20 yearsI got mild ME just after my 30th birthday. It was when I got the flu.In context ↗ | Mild | |
| age 42 to 50 | Slow decline with study, work, a breakup and botched mercury chelationFrom age 42 to 50 started slowly going downhill after going back to uni and working, breakup and mismanaged mercury chelation.In context ↗ | Moderate | |
| 2009 | Largely bedridden, mobility scooter, gave up work at 50Lowest point in 2009 at age 51. Largely bedridden, mobility scooter, couldn't walk far.In context ↗ | Severe | |
| 2011 | Picked up after d-ribose and APS microcurrent; ditched the mobility scooterPicked up a lot in 2011 when I discovered APS microcurrent therapy and d ribose. Ditched the mob scooter at that point able to walk more.In context ↗ | Moderate | Microcurrent |
| 2021-08 | Self-rated a 4 on the severity scale; most of most days in bedI'm a 4 on this but it in no way reflects the reality of my life.In context ↗ | Moderate | |
| 2024-06 | Nicotine gum; less PEM, more driving and writingI'm able to do more, drive more, spend less time in bed, spend more time writing. I have less PEM.In context ↗ | Moderate | Nicotine patches |
| 2026-07 | Relapse after a bad fall, pleurisy and hospitalI went back to largely bedridden, not able to walk as much as before the fall, or go out in the car.In context ↗ | Severe | |
| 2026-07-27 | Rhodiola added; first shower and dishes in three weeksIt has made a really big difference. I was able to have a shower for the first time in 3 weeks and do the dishes.In context ↗ | Severe | |
| 2026-09-24 | Recovered well from the relapse; one or two good days a week, walked to the beachI've recovered well (I mean, I still spend most of my time in bed, but I have 1 or 2 good days a weekIn context ↗ | Moderate |
Adverse events
- D-ribose“Then it started making me feel Ill and giving me heart palpitations. ... it made me feel worse.” In context ↗ Heart rhythm problems
- Microcurrent“Eventually my knees started to get inflamed and painful from the treatment.” In context ↗ Autoimmune or inflammatory flare
- “She also prescribed sulphur drugs in a protocol that made my mercury poisoning worse and that's one of the big reasons I can't work today.” In context ↗ Made symptoms worse
- Statins (unspecified)“I stopped the statin because of side effects but kept on with the aspirin cos it helped so much.” In context ↗ Side effects
- “I had one thing that made me terribly unwell, and I could I'd it because it was the only new thing I was taking. Never been able to undo the damage, sadly.” In context ↗ Made symptoms worse
- Graded rehab and self-made programmes“I tried high intensity interval training this year for SIX SECONDS at a time, 10 times a day, total one minute a day. It made me sicker.” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“I had bad experiences with tricyclic antidepressants” In context ↗ Side effects
- COVID vaccination as treatment“Had a real bad week after my second booster despite taking antihistamines. New symptom - feeling nauseous when I stand up and move.” In context ↗ Side effects
- Nicotine patches“Even with the lowest dose available I got so hyper I couldn't sleep. So I gave up. I'm very sensitive to drugs so I think that's the problem.” In context ↗ Insomnia from treatment
- Nicotine patches“I was using nicotine gum and found it great. Then i started getting awful stomach pains. My kidney function was abnormal. So I stopped the gum and it came right.” In context ↗ Liver or kidney problems
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeart symptoms & palpitationsPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTinnitus
Their words about their symptoms
- Post-exertional malaise
I do get PEM pretty prefictably.
In context ↗ - Brain fog
have had brain fog badly in the past
In context ↗ - POTS & dysautonomia
I have POTS now, which complicates things.
In context ↗ - Sleep problems
my busy little brain wakes me up from 1 to 3.30am
In context ↗ - Pain & fibromyalgia
The main issue is back problems. But I've just found some stretches on YouTube and they've pretty much solved that problem/pain.
In context ↗ - Gut problems
My problem is Candida overgrowth and leaky gut syndrome.
In context ↗ - Heart symptoms & palpitations
I have a heart condition brought on by chronic low blood pressure associated with ME.
In context ↗ - Breathlessness
I get exhausted and puffed really easily.
In context ↗ - Anxiety & low mood
I have ME, POTS, and have suffered major Depressive Disorder several times.
In context ↗ - Tinnitus
it helps with congestion/tinnitus
In context ↗
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