The BPF's LEP/PPS forum

Please use this forum to share experiences, swap ideas etc. on managing the late effects of polio/post-polio syndrome

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How was PPS "proved" as a syndrome?

Dear PPS experts

Bear with me... this is a bit complicated. Over on the UK and US GBS (Guillain Barre Syndrome) forums, we're trying to do a bit of research because we seem to be accumulating members who have a second attack of GBS about 20 years after the first, which according to the docs is not possible (you either get GBS just the once, or you get the relapsing recurring form CIDP. You don't get a "second" bout.)

In developed countries, GBS is now the leading cause of paralysis due to the "eradication" of polio but it is a rare disease (about 1500 cases a year in the UK with around 70-85% recovering pretty much completely in 2 years. What we wondered is, how was post-polio syndrome "proved"? How do we go about getting researchers to investigate whether something similar to PPS is affecting GBS patients?

Any thoughts gratefully received.

Imogen

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