ME/CFS
Severe → somewhat betterIll 4.5 years before improving or writingNeeds ongoing treatment
Mostly housebound then mostly bedbound with ME/CFS after COVID, partial gains from pycnogenol
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4.5 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
I do have ME, and I started 50-100mg/morning of Vitamin Shoppe brand pycnogenol last week.
In context ↗ - At worst: Severe
I actually went from mostly bed bound to exercising again (the first time yet since I have been severe)!
In context ↗ - Now: Somewhat better
I've made small improvements by timing my crashes so I no longer get stuck in a chair all night (unable to get up).
In context ↗ - Began after: COVID
I caught COVID at the start of the pandemic in the US, but didn't require hospitalization. My energy has been deteriorating since then
- Says they never had: POTS & dysautonomia
I do not have POTS
Read from 32 of their posts and comments; links to the 23 this page draws on
Summary
After a March 2020 COVID infection, they had fatigue issues starting in December 2021 and fully blown ME/CFS by August 2022; trying to treat it with exercise left them mostly housebound and at one point mostly bedbound. Organ-meat supplements, pycnogenol and vitamin K2 MK-7 each brought partial or temporary gains. MK-7 relieved their PEM but caused insomnia and palpitations; when its effects wore off, they were back at their ME/CFS baseline with no lasting improvement.
Ask Miruvor AI
What they tried
What they credit
Also tried
100% grass fed calf brain supplement (Heart & Soil Mood, Memory & Brain)· Helped a lotsteroid injection in the ER· Helped a lotPaleo diet· Helpedjaw botox· Helpedturmeric· HelpedSchiff Knock-Out sleep formula· Helpeddark room, eye mask and earplugs for pain· HelpedHeart & Soil Histamine and Immune supplement· Helpedginger supplements· Helpedpycnogenol· Helpedamitriptyline· HelpedCodeage pancreas supplement· Helpedbovine kidney (high in DAO)· Helpedvitamin K2 MK-7· Helped · wore offseveral sleep supplements· No changeGABA· No changeglutathione· No changemelatonin· No changeL-theanine· No changevarious magnesium supplements· No changeNSAIDs· Worsetreating with exercise· Much worseCodeage spleen supplement· Not saidpasture-raised organ meats (heart, tripe, bone marrow)· Not saidMK-4· Not said
Their words about each treatment
- Paleo diet · Helped
I eat very healthy--fulltime Paleo for nearly 10 years, which improved my life significantly.
In context ↗ - treating with exercise · Much worse
I tried "treating with exercise" and slowly became mostly housebound / "fully blown" CFS/ME by 8/2022.
In context ↗ - jaw botox · Helped
Had jaw botox once for TMJ and that seemed to help a bit might try that again.
In context ↗ - turmeric · Helped
I have found turmeric to help a lot as well, but I am nervous taking it every day considering the lack of long-term studies.
In context ↗ - NSAIDs · Worse
In my experience, NSAIDs helped short-term but likely caused significant long-term side effects
In context ↗ - Schiff Knock-Out sleep formula · Helped
I took it every day for years. It was just so effective and reliable!
In context ↗ - several sleep supplements · No change
They were all "highly rated" and reputable but ended up being not very good and barely doing anything.
In context ↗ - dark room, eye mask and earplugs for pain · Helped
I have been managing pain instead by being proactive against known triggers and laying down in a dark room with an eye mask and earplugs.
In context ↗ - Heart & Soil Histamine and Immune supplement · Helped
I still have better energy and sleep when I take the supplements vs when I do not
In context ↗ - 100% grass fed calf brain supplement (Heart & Soil Mood, Memory & Brain) · Helped a lot
I started taking a 100% grass fed calf brain supplement every day and it is working well for me.
In context ↗ - ginger supplements · Helped
I've been trying them over the past few days, and they seem to be helping a lot!
In context ↗ - pycnogenol · Helped
I think it is helping, but I'm not entirely sure yet. I did not stop PEM crashing, but I do think it improved my fatigue threshold significantly (and without any discernible side effects).
In context ↗ - amitriptyline · Helped
I'm taking 10mg at night as needed for sleep. It knocks me out quickly for at least 7 hours
In context ↗ - Codeage pancreas supplement · Helped
I would choke on my food every day before I started taking these
In context ↗ - Codeage spleen supplement · Not said
Morning Codeage spleen supplement x1
In context ↗ - pasture-raised organ meats (heart, tripe, bone marrow) · Not said
Occasional lamb or chicken heart consumption
In context ↗ - bovine kidney (high in DAO) · Helped
They seem to help with my breathing (which is why I got them) but also unexpectedly, they appear to have stopped my severe tension headaches
In context ↗ - steroid injection in the ER · Helped a lot
got a steroid injection and hadn’t breathed better in my two years of CFS!!!
In context ↗ - GABA · No change
tried melatonin, ginger, GABA, and L-theanine, but none of these measures alleviated the insomnia
In context ↗ - glutathione · No change
Didn't work for me.
In context ↗ - going outside every day · Helped
I made a lot of improvements just going outside more.
In context ↗ - vitamin K2 MK-7 · Helped
only thing that has worked for my PEM is vitamin K2 MK-7
In context ↗ - MK-4 · Not said
Interestingly MK-4 instead just makes me sleepy.
In context ↗ - various magnesium supplements · No change
They helped with bowel regularity, but too much gave me loose stools. Unfortunately, none of them helped with the insomnia or palpitations.
In context ↗
Approaches: Supplements
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 |
|---|---|---|---|
| 12/2021 | Fatigue began, later called ME/CFSI did have a moderate case of COVID in 3/2020 but didn't have fatigue issues until 12/2021.In context ↗ | Mild | |
| 8/2022 | became mostly housebound, later mostly bed bound, after treating with exerciseslowly became mostly housebound / "fully blown" CFS/ME by 8/2022. I have been stuck there sinceIn context ↗ | Severe | Everyday exercise and activity |
| 2022-09-08 | self-developed plan with organ supplement, stopping NSAIDs and turmericI am trying a new self-developed treatment plan and am noticing a significant improvement so far!In context ↗ | Moderate | |
| 2023-02-20 | organ meat protocol; went from mostly bed bound to exercisingI upped and varied my "dose" and have since felt fantastic. Longest yet without a PEM crashIn context ↗ | Moderate | |
| 2024-02-05 | small improvements from timing crashes and better sleepI've made small improvements by timing my crashes so I no longer get stuck in a chair all night (unable to get up).In context ↗ | Moderate | |
| 2026-08-17 | major improvements from going outside every dayI have already made major improvements just by going outside every dayIn context ↗ | Moderate | |
| 2026-09-08 | back at baseline after MK-7 effects wore offleaving me back at my previous ME/CFS baseline with no lasting improvementIn context ↗ | Moderate |
Adverse events
- NSAIDs (unspecified)“likely caused significant long-term side effects (stomach pain and exacerbated eczema, anxiety, and future headaches)” In context ↗ Gut side effects
- NSAIDs (unspecified)“likely caused significant long-term side effects (stomach pain and exacerbated eczema, anxiety, and future headaches)” In context ↗ Mood or psychiatric effects
- NSAIDs (unspecified)“likely caused significant long-term side effects (stomach pain and exacerbated eczema, anxiety, and future headaches)” In context ↗ Other
- “I noticed a spike in inflammation a few times after taking Histamine and Immune supplement” In context ↗ Autoimmune or inflammatory flare
- Amitriptyline (Elavil)“I do feel groggier than normal the next day” In context ↗ Side effects
- Vitamin K and K2“BUT I get heart palpitations at night and worse sleep” In context ↗ Heart rhythm problems
- Vitamin K and K2“Reducing the dose lessened the insomnia ... higher doses provided greater relief but worsened the insomnia” In context ↗ Insomnia from treatment
- “Interestingly MK-4 instead just makes me sleepy.” In context ↗ Side effects
- Magnesium“They helped with bowel regularity, but too much gave me loose stools.” In context ↗ Gut side effects
Symptoms mentioned
Brain fogBreathlessnessFlu-like symptomsHeadaches & migraineHeart symptoms & palpitationsMuscle weaknessPain & fibromyalgiaPost-exertional malaiseSleep problemsTinnitus
Their words about their symptoms
- Post-exertional malaise
only thing that has worked for my PEM is vitamin K2 MK-7
In context ↗ - Brain fog
My brain feels like literal mush
In context ↗ - Headaches & migraine
Frequent headaches, almost daily
In context ↗ - Muscle weakness
I can barely walk before my muscles become extremely weak and I collapse
In context ↗ - Pain & fibromyalgia
Definitely noticeably fewer muscle aches and improved walking functionality.
In context ↗ - Breathlessness
Last night was particularly bad and I could hardly breathe or talk.
In context ↗ - Sleep problems
I would otherwise get maybe 4-5 hours of very light, easily interrupted sleep
In context ↗ - Heart symptoms & palpitations
I get heart palpitations at night and worse sleep
In context ↗ - Flu-like symptoms
I still frequently feel my lymph nodes and tonsils swollen up.
In context ↗ - Tinnitus
Tinnitus for four years
In context ↗
Ask Miruvor AI
Similar stories
-
Almost bedridden with ME/CFS, now much better after a specialist regimen and pacing
A California woman infected with COVID in March 2020 was sick six months, partly recovered, then relapsed and was almost bedridden by early 2023, unable to drive and sensitive to light and noise. An out-of-pocket ME/CFS specialist regimen of LDN, Abilify,…
-
Bedbound at worst with ME/CFS after COVID, now somewhat better with pacing
A person in New Zealand became ill with COVID around mid-2022. They worsened for 14 months to severe and bedbound, and are not working. Pacing, an electric wheelchair, mast-cell and arthritis drugs, and vitamin D later brought them to mild (moderate side of…
-
Long COVID at its worst mostly lying down, now nearly back to normal with Zepbound
Ill with long COVID from July 2024; at worst sleeping or lying down most of the day, barely functioning, with fatigue, PEM, brain fog, palpitations and POTS. Antihistamines and supplements raised energy within a week, and nattokinase, bromelain and curcumin…
-
Mostly bedbound with ME/CFS, now somewhat better with fludrocortisone and beta blockers
Kestrel 92313 had ME/CFS for about 15 years, mild at first and severe/mostly bedbound (90–95% bedbound) by early 2026. Fludrocortisone, beta blockers, salt and fluids for POTS were part of measures giving about 10% improvement, and they remained severe and…