ME/CFS
Moderate → no benefit
Mostly housebound with moderate ME/CFS; no benefit from blocks or stimulants
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I contracted COVID but it didn't seem to affect my ME/CFS at all.
In context ↗ - At worst: Moderate
For reference, I currently meet the moderate "mostly housebound" severity rating.
In context ↗ - Now: No benefit
There were no long-term improvements to my ME/CFS as a whole.
In context ↗
Read from 16 of their posts and comments; links to the 10 this page draws on
Summary
Wave 36297 has moderate ME/CFS and is mostly housebound. A confirmed COVID infection left them feeling much healthier for a couple of weeks before the improvement faded. Four stellate ganglion blocks gave only about a week of relief from the injected steroid, and a sinus infection since has been slow to clear. Stimulants helped push through fatigue but made post-exertional malaise easier to trigger.
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What they tried
Also tried
Their words about each treatment
- manual therapy (remedial massage) · Helped
I find it relaxing, it hurts in a good way, and a kind thing to get done for myself.
In context ↗ - Cannabis (THC) · Helped
THC mainly helps with sleep and appetite for me.
In context ↗ - Stimulant drugs · Worse
Stimulant drugs helped me push through fatigue, but they did not prevent PEM in any way.
In context ↗ - caffeine · Not said
My stimulant of choice these days is caffeine.
In context ↗ - Stellate ganglion block (SGB) · Helped
I experienced about a week of improved ME/CFS symptoms; however, I realised it was the steroid that is injected with the nerve block agent that was responsible for that.
In context ↗ - surgery · No change
A few times, they didn't make me worse.
In context ↗ - person-centred therapy (PCT) · Helped
my opinion of therapy -- after many years and many psychologists -- has improved dramatically
In context ↗ - modafinil and armodafinil · Worse
I've personally found long term use of stimulants, including these drugs, to be very anxiety-inducing and, yes, you start drawing down on energy reserves you don't really have to spare.
In context ↗ - benzodiazepines · Worse
They personally either do nothing or make every limb on my body feel as heavy as tungsten.
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were |
|---|---|---|
| 2023 | felt healthier for a few weeks after confirmed COVIDI felt much healthier for a few weeks after my confirmed COVID infection.In context ↗ | Not stated |
| 2023-09-13 | sinus infection, hardly recoveredI did get a sinus infection since then, did not come up as a positive on a PCR, and that I have hardly recovered from at all.In context ↗ | Not stated |
| 2024-12-30 | mostly housebound, moderate severityFor reference, I currently meet the moderate "mostly housebound" severity rating.In context ↗ | Moderate |
Adverse events
- Stimulants (unspecified)“they did not prevent PEM in any way. In fact, they made it easier to experience PEM because I had a harder time pacing” In context ↗ Made symptoms worse
- Stimulants (unspecified)“I also found the side-effects frustrating. I dislike drugs that dull my appetite, and they are very good at that” In context ↗ Side effects
- Stimulants (unspecified)“Spending long periods of time artificially stimulated started affecting my mind in a negative way too, I started to feel weird, wired and strung out.” In context ↗ Mood or psychiatric effects
- Modafinil / armodafinil“long term use of stimulants, including these drugs, to be very anxiety-inducing and, yes, you start drawing down on energy reserves you don't really have to spare” In context ↗ Mood or psychiatric effects
- Modafinil / armodafinil“I really hated the wired feeling and appetite problems as well.” In context ↗ Side effects
- Benzodiazepines (unspecified)“They personally either do nothing or make every limb on my body feel as heavy as tungsten.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
In fact, they made it easier to experience PEM because I had a harder time pacing
In context ↗ - Sleep problems
THC mainly helps with sleep and appetite for me.
In context ↗ - Pain & fibromyalgia
I get manual therapy (remedial massage) every 6 to 10 weeks due to a bad back.
In context ↗