ME/CFS
Moderate → no benefitIll for 16 years
ME/CFS for 16 years with pain and no energy, no benefit from CBT or GET
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 16 years
- Last post
- Sep 2021
In their words
- Condition: ME/CFS
I'm 29 this year and have had this since I was 14 (I know I'm not unique).
In context ↗ - At worst: Moderate
My go-to is lemon drizzle cake, I've just got it down to an manageable process, still takes a few days to recover after making it
In context ↗ - Now: No benefit
inhaler has helped breathing, CFS symptoms very much still there.
In context ↗
Read from 9 of their posts and comments; links to the 7 this page draws on
Summary
Flint 28011 fell ill at 14 in Northern Ireland and had ME/CFS for 16 years, going through NHS tests, CBT and GET; GET brought a relapse after a few weeks each time. They used a walking stick from their teens, had pain and no energy, and later developed depression treated with medication. A Pfizer COVID vaccine in May 2021 left them weak and faint, and they said their tolerance had been very low since getting the vaccines.
Ask Miruvor AI
What they tried
Also tried
Their words about each treatment
- walking stick · Helped
sometimes I hate the looks I get, other times I love it - I can actually get out.
In context ↗ - CBT · Not said
Some tests then it's CBT, Psychiatry & GET
In context ↗ - GET · Much worse
Years of trying GET only to relapse everytime after a few weeks of it.
In context ↗ - antidepressants · Not said
I do get some medication for depression now
In context ↗ - Bearable · Not said
Its called bearable, it a symptom tracker. I use it regularly, it's quite good.
In context ↗ - antibiotics · Helped
my GP wasnt concered and gave some antibiotics, it went away now its back and worse.
In context ↗ - Pfizer vaccine · Worse
After I felt quite weak and faint. My legs wouldn't walk me to the car, my partner wheeled me out
In context ↗ - inhaler · Helped
inhaler has helped breathing, CFS symptoms very much still there.
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. The chart starts 16 years 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 |
|---|---|---|
| age 14 | ME/CFS began at age 14I'm 29 this year and have had this since I was 14In context ↗ | Not stated |
| 2021-05-28 | weak and faint after Pfizer COVID vaccine, wheeled to the car; tolerance stayed very lowAfter I felt quite weak and faint. My legs wouldn't walk me to the car, my partner wheeled me outIn context ↗ | Moderate |
| 2021-09-09 | still ill, low tolerance since the COVID vaccines, breathing helped by inhalerI wouldn't say I'm in a flare up but my tolerance has been very low since getting the covid vaccines.In context ↗ | Moderate |
Adverse events
- Graded exercise therapy (GET)“Years of trying GET only to relapse everytime after a few weeks of it.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“After I felt quite weak and faint. My legs wouldn't walk me to the car, my partner wheeled me out” In context ↗ Low blood pressure or fainting
- COVID vaccination as treatment“Side note: I wouldn't say I'm in a flare up but my tolerance has been very low since getting the covid vaccines.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBreathlessnessHeadaches & migraineMuscle weaknessPain & fibromyalgiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
still takes a few days to recover after making it, tho not as bad as it was
In context ↗ - Pain & fibromyalgia
I'm not depressed I just have no energy and I'm in pain
In context ↗ - Muscle weakness
I'm weak, sore and slight headache
In context ↗ - Headaches & migraine
slight headache
In context ↗ - Anxiety & low mood
Oh and yes 'now' I do have depression, who wouldn't with the way we get treated.
In context ↗ - Breathlessness
inhaler has helped breathing, CFS symptoms very much still there
In context ↗