ME/CFS for more than 11 years, now bedbound, no treatment helped
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 12 years
- Last post
- Jan 2021
In their words
- Condition: ME/CFS
I have had cfs for 11+ years from glandular fever
In context ↗ - At worst: Severe
I have been fully bed-bound and off part-time work since November 2020
In context ↗ - Now: No benefit
I have been getting progressively worse over 10 years ... I have been fully bed-bound and off part-time work since November 2020
- Began after: glandular fever or EBV
I have had cfs for 11+ years from glandular fever
In context ↗
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
A UK patient who had had CFS for more than 11 years after glandular fever worked part-time through most of the illness despite daily symptoms. A traumatic disability benefits process in 2019 caused a relapse, and after moving house in late summer 2020 they declined further. They became fully bed-bound and off work in November 2020 and were still bed-bound in January 2021; no treatment was reported to help.
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What they tried
Also tried
Their words about each treatment
- CBT · Worse
which turned out detrimental anyway
In context ↗ - GET · Worse
he brought up more GET as well. Which I have already done while working and made me crash.
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 10.2 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 |
|---|---|---|
| onset | CFS began after glandular fever, then parvovirusI have had cfs for 11+ years from glandular fever and i contracted parvovirus after itIn context ↗ | Not stated |
| 2019 | relapsed after a traumatic disability benefits process, became suicidali became severely suicidle last year after being made to go through universal credit process after redundancy and losing working tax credits ... the process was horrific and i relapsed obviouslyIn context ↗ | Moderate |
| late summer 2020 | moved house and went downhill sinceI had to move house late summer too and I have been going downhill since thenIn context ↗ | Moderate |
| November 2020 | became fully bed-bound and off workI have been fully bed-bound and off part-time work since November 2020In context ↗ | Severe |
| January 2021 | still fully bed-bound; OT pushing antidepressants and GETI have pushed myself for 10 years to carry on working, and now I am paying the priceIn context ↗ | Severe |
Adverse events
- CBT and psychotherapy“CBT, which turned out detrimental anyway” In context ↗ Made symptoms worse
- Graded exercise therapy (GET)“more GET as well. Which I have already done while working and made me crash.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I’ve learnt the hard way of ignoring my PEM symptoms and pushing through
In context ↗ - Brain fog
brain fog isn’t helping
In context ↗ - Anxiety & low mood
I have anxiety and depression but it is tied in with PEM symptoms and crashes
In context ↗