ME/CFS
Severe → no benefitIll for 27 years
Mainly bedridden with ME/CFS, no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 27 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
It's only since I've had mecfs that I've been aware of being adhd.
In context ↗ - At worst: Severe
2022 still majnly bedridden with huge variety of symptoms That cycle.
In context ↗ - Now: No benefit
I was a software dev, today I'm so far behind the ball I'm probably unemployable
In context ↗ - Began after: glandular fever or EBV
Glandular fever 1999
In context ↗
Read from 28 of their posts and comments; links to the 18 this page draws on
Summary
Flint 79254's timeline starts with glandular fever in 1999 and a year of fatigue, then good until stress and heat intolerance from 2005 and a collapse in 2015 with flu-like symptoms, chest infections and about four relapses in five months; they say it is hard to know where it really started. By 2022 they were still mainly bedridden. Later posts describe brief weight sessions, brain fog that cleared during a five-day prednisone course, being probably unemployable, and that overdoing things brings it all back.
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What they tried
Also tried
ssris / snri's· HelpedH1 antihistamines· Helpedanti-inflammatory· Helpedh2 antihistamine· HelpedRitalin· Helped · wore offpqq· HelpedPrednisone· Helpedcox2 inhibitors· Helpedamino acids· Helpedmushroom powder· Helpedsmall quantities of food· HelpedB2· Helpedbeta blocker (betaloc)· Helpedwater· HelpedD-ribose· No changeKeto· Worseweights· Worsemito q· Not said
Their words about each treatment
- ssris / snri's · Helped
2008 ssris for depression ... I'm actually back on ssris and feel better than ever (apart from M. E)
- D-ribose · No change
Nothing for me, I bought a big container of it.
In context ↗ - H1 antihistamines · Helped
H1 antihistamines help, as does taking an anti-inflammatory the night before the exercise.
In context ↗ - anti-inflammatory · Helped
Anti-inflammatories seem to help me if I thinknive gone over my limit
In context ↗ - h2 antihistamine · Helped
I feel slightly better on a h2 antihistamine but haven't tried the h1.
In context ↗ - Keto · Worse
Keto also (my n=1) gave me ectopic beats and I crashed with sjogren/raynaud type symptomology.
In context ↗ - Ritalin · Helped
Ritalin helps with mental energy as does coffee
In context ↗ - mito q · Not said
There's a coq10 suppliment called mito q , it's a lot more absorbable,(and expensive)
In context ↗ - pqq · Helped
I find pqq helps too ( it basically kills off old mitochondria).
In context ↗ - Prednisone · Helped
As an aside I've was on prednisone for about 5 days, about a month ago. my brain fog completely disappeared.
In context ↗ - cox2 inhibitors · Helped
antiinflamatories (prednisone or cox2 inhibitors)
In context ↗ - amino acids · Helped
amino acids sort of do something
In context ↗ - mushroom powder · Helped
I take a mushroom powder and somehow that seems to di something but it may just be a placebo.
In context ↗ - small quantities of food · Helped
told me to eat very small quantities of food , bit more regularly. I must say it helped crashing after meals.
In context ↗ - weights · Worse
Expect a lot of post workout muscle pain. Very hard to avoid PEM.
In context ↗ - B2 · Helped
so far nothing except maybe B2 has helped.
In context ↗ - beta blocker (betaloc) · Helped
A low dose beta blocker works well for me
In context ↗ - water · Helped
My blood flow is shocking if I don't drink Loads of water
In context ↗
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 |
|---|---|---|
| 1999 | glandular fever, then tired for a yearGlandular fever 1999In context ↗ | Mild |
| 2005 | could no longer handle stress or heataround 2005 I suddenly couldn't handle stress or heat of any typeIn context ↗ | Mild |
| 2012 | came off SSRI; balance, anxiety and anger problems2012 came off ssri, =>massive Balance/anxiety and anger issuesIn context ↗ | Mild |
| 2015 | collapsed with flu-like symptoms, chest infections and about four relapses in five months2015 collapsed literally , vagal issues, sjogrens like dryness, bad flu symptoms , chest infections, massive fatigueIn context ↗ | Severe |
| 2022 | still mainly bedridden, symptoms cycling2022 still majnly bedridden with huge variety of symptoms That cycle.In context ↗ | Severe |
| 2026 | still limited; does only brief weight sessions and calls themselves probably unemployabletoday I'm so far behind the ball I'm probably unemployableIn context ↗ | Moderate |
Adverse events
- Keto and low-carb diets“Keto also (my n=1) gave me ectopic beats” In context ↗ Heart rhythm problems
- Keto and low-carb diets“I crashed with sjogren/raynaud type symptomology. Stupidly I wondered if it was a genuine association, so I did it again, yeah, it happened again” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“2012 came off ssri, =>massive Balance/anxiety and anger issues ... I had awful withdrawals from snri's. Headzaos, balance issues, they went on fir a year” Withdrawal problems
- Metoprolol (Lopressor, Toprol)“I just take a low dose and if anything I get slightly colder feet and hands in winter” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsHeadaches & migraineHeart symptoms & palpitationsPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
Violently ill after exercise
In context ↗ - Brain fog
I can't focus on one thing for more than a few minutes
In context ↗ - POTS & dysautonomia
vagal issues ... the polling is better controlled
- Heart symptoms & palpitations
chest pain, heart aches
In context ↗ - Anxiety & low mood
2008 ssris for depression
In context ↗ - Flu-like symptoms
I will swear I have caught a flu
In context ↗ - Temperature regulation
can't tolerate heat
In context ↗ - Vision problems
balance perception, eyesight
In context ↗