ME/CFS
Severe → no benefitIll for 22 years
Bedbound with ME/CFS and worst PEM, still ill, no benefit from Novavax
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 22 years
- Last post
- Sep 2023
In their words
- Condition: ME/CFS
I not only have ME but also Severe Combined Immunodeficiency (SCID).
In context ↗
Read from 8 of their posts and comments; links to the 6 this page draws on
Summary
A man in Australia who had had ME/CFS since about 2001 and also had severe combined immunodeficiency. A treatment tried four years into his illness did nothing. FL-41 glasses helped him, but he got the worst PEM. He was bed bound by mid-2022, and a first Novavax dose in March 2022 had no impact on him; he was still ill in September 2023.
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What they tried
Also tried
FL-41 light sensitivity glasses· Helpedglutathione injections· No changenovavax· No changeswimming· Worseexercise· Much worsesubcutaneous immunoglobulin injections· Not said
Their words about each treatment
- glutathione injections · No change
I tried it 16 years ago (4 years into having CFS), did nothing for me.
In context ↗ - FL-41 light sensitivity glasses · Helped
I wear these. I find them very helpful.
In context ↗ - exercise · Much worse
Yes it did for me. Bed bound now
In context ↗ - swimming · Worse
Me too, while I'm in there and then I get the worst PEM.
In context ↗ - novavax · No change
I had no impact at all when I took it.
In context ↗ - subcutaneous immunoglobulin injections · Not said
I require weekly subcutaneous immunoglobulin injections.
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 21.2 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 | onset of CFSI tried it 16 years ago (4 years into having CFS)In context ↗ | Not stated |
| 2022-06-27 | bed bound after exercising despite CFSYes it did for me. Bed bound nowIn context ↗ | Severe |
| 2023-09-14 | still ill, on weekly immunoglobulin for SCIDI require weekly subcutaneous immunoglobulin injectionsIn context ↗ | Severe |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
then I get the worst PEM
In context ↗ - Light & noise sensitivity
I wear these. I find them very helpful.
In context ↗