ME/CFS
Severe → somewhat betterIll 4 years before improving or writingNeeds ongoing treatment
Bedbound with ME/CFS for over a year, now somewhat better with POTS medication and pacing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
From what i can tell, I have ME/CFS, POTS, and hypoglycemic now.
In context ↗ - At worst: Severe
I was bedbound for about a year, could not carry on a conversation, couldn't tolerate light or noise.
In context ↗ - Now: Somewhat better
I'm not able to work, but I'm no longer bedbound. I use a power wheelchair when I go, but I *can* go out now.
In context ↗ - Began after: COVID
Didnt get sick until 8/22. Somewhat mild to mid level covid.
In context ↗
Read from 73 of their posts and comments; links to the 32 this page draws on
Summary
Hare 14118 became ill after COVID-19 in August 2022 and was bedbound for over a year at one point, unable to work or converse. A COVID booster in late 2024 reduced their symptoms for about two months before they returned. By 2026 they credited POTS medication, repeated iron infusions and Visible-band pacing with a large gain: no longer bedbound, but still mostly housebound in a power wheelchair and unable to work, though they still had crashes, a flare and worsening.
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What they tried
What they credit
Also tried
gastric bypass· Helped a lotafternoon nap / rest· HelpedXanax / 'pams· Helpedmelatonin· Helpedmagnesium· HelpedCPAP· Helpedsleep mask with headphones and sleep music· Helpedsemiglutide/wegovy/GLP1· Helpednutritionist· Helpedcompression and extra salt· Helpedcompression and extra salt· Helpedraw cornstarch in water· Helpedpower wheelchair and adaptive devices· HelpedChatGPT conversations· HelpedEpsom salt bath· Helpedoral iron· No changeantihistamines· No changecannabis gummies and tinctures· No changesupplements (many)· No changeguanfacine· No changetherapy· No changecalcium and general multivitamin· Not saidseveral other POTS medications· Not said
Their words about each treatment
- iron infusion · Helped a lot
I ended up getting an iron infusion and my brain fog went away.
In context ↗ - oral iron · No change
oral iron use (didn't keep my levels up)
In context ↗ - afternoon nap / rest · Helped
I get about a 90 minute nap and it's enough to clear my head.
In context ↗ - Xanax / 'pams · Helped
Unfortunately yes; but they are very addictive.
In context ↗ - melatonin · Helped
Xanax, melatonin, magnesium, CPAP, music, and an eye mask.
In context ↗ - sleep mask with headphones and sleep music · Helped
A sleep mask with built in headphones (music cozy on Amazon).
In context ↗ - COVID booster · Helped a lot
I got the booster this year, two weeks ago. No other changes.
In context ↗ - antihistamines · No change
I do take the recommendationed meds (animtihistonin, etc).
In context ↗ - cannabis gummies and tinctures · No change
I had no effect from gummies or tinctures.
In context ↗ - semiglutide/wegovy/GLP1 · Helped
I've only really had any luck with semiglutide/wegovy/GLP1.
In context ↗ - nutritionist · Helped
Nutritionist to ensure my vitamins, nutrition, etc was supplimented and optimized
In context ↗ - gastric bypass · Helped a lot
I've had gastric bypass before I developed ME/CFS.
In context ↗ - visible band and app · Helped a lot
The only thing that has made a difference has been my visible band
In context ↗ - pacing · Helped a lot
Pacing is the only thing that works for me.
In context ↗ - supplements (many) · No change
I think they just give me expensive pee. And I've tried a lot of supplements.
In context ↗ - calcium and general multivitamin · Not said
I'm moving forward with just a calcium and general multivitamin (regulated, bariatric-grade vitamin).
In context ↗ - Florinef · Helped a lot
Florinef was life changing. I feel like I'm 90% recovered.
In context ↗ - compression and extra salt · Helped
Compression and extra salt helped, but Florinef was life changing.
In context ↗ - several other POTS medications · Not said
I tried several (I can't remember all the names) but midodrene and florinef have helped the most.
In context ↗ - midodrine · Helped a lot
Treating my pots with fludro and mitod has been life changing
In context ↗ - strict low carb / keto diet · Helped
I have to eat mostly protein, fat, and veggies. I'm under 50 carbs a day
In context ↗ - raw cornstarch in water · Helped
I take aabout a tablespoon of raw cornstarch in water
In context ↗ - power wheelchair and adaptive devices · Helped
Power wheelchair and other adaptive devices to conserve energy
In context ↗ - aggressive resting · Helped
Aggressive resting
In context ↗ - guanfacine · No change
Didn't do anything for me.
In context ↗ - therapy · No change
I tried therapy and it didn't work
In context ↗ - ChatGPT conversations · Helped
The conversations about how to process the grief and disability and forgiveness changed my life
In context ↗ - Epsom salt bath · Helped
*Epson salt bath
In context ↗
Approaches: POTS medication · Diet · Pacing · Radical rest · Supplements · Vaccination
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 |
|---|---|---|
| August 2022 | COVID-19; long COVID beganDidnt get sick until 8/22. Somewhat mild to mid level covid.In context ↗ | |
| 2023 | bedbound over a year; stopped workingI was bedbound for over a year. Pacing with Visible was the one thing that gave me my life back.In context ↗ | |
| early 2024 | iron infusion cleared brain fogI ended up getting an iron infusion and my brain fog went away.In context ↗ | Iron infusion / ferritin repletion |
| July 2024 | back to part-time receptionist workNow I'm a part time receptionist. It's physically easy and my days are not long.In context ↗ | Pacing and the energy envelope |
| November 2024 | COVID booster cleared symptoms for about two monthsI've been active like this every day. No brain fog.In context ↗ | COVID vaccination as treatment |
| early 2025 | booster benefit wore off and symptoms returnedI felt recovered for about two months post flu/pneumonia/COVID/shingles vaccines. Then it all came back.In context ↗ | |
| 2025-2026 | bedbound a year; could not converse or tolerate light or noiseI was bedbound for about a year, could not carry on a conversation, couldn't tolerate light or noise.In context ↗ | |
| September 2026 | POTS medication, iron infusion and pacing; no longer bedboundI'm not able to work, but I'm no longer bedbound. I use a power wheelchair when I go, but I *can* go out now.In context ↗ | Iron infusion / ferritin repletion |
Adverse events
- COVID vaccination as treatment“this seems to have damaged my heart” In context ↗ Other
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I still have mecfs and experience pem.
In context ↗ - Brain fog
I have a lot of cognitive issues these days
In context ↗ - POTS & dysautonomia
I finally have a pots diagnosis and a cardiologist who will attempt to help me
In context ↗ - Sleep problems
I have terrible insomnia at night.
In context ↗ - Pain & fibromyalgia
I sleep, im in pain.
In context ↗ - Gut problems
I have to follow with a solid food or my stomach pains me terribly
In context ↗ - Light & noise sensitivity
I wear noise dampening earbuds so I can join my husband when he watches tv
In context ↗ - Breathlessness
my HR just gets high and I'm out of breath, so I stay seated
In context ↗ - Heart symptoms & palpitations
it yells at me when my heart rate gets too high without me realizing it
In context ↗ - Muscle weakness
I can not self propel. I do not have the strength and stamina.
In context ↗ - Anxiety & low mood
I'm still depressed at watching everyone else live and enjoy life though.
In context ↗
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