Research Update - Dec 21

It is gratifying to be able to report that research into the causes and effects of GBS have really blossomed in NZ in 2021. This is almost entirely the result of generous support provided by the GBS Support Group Trust (NZ). On behalf of the researchers, I would like to extend my thanks to all of you for making this possible.

Impact of a telerehabilitation physical activity intervention on fatigue levels for people with Guillain-Barré Syndrome:

Dr. Suzie Mudge and her team are investigating whether patients with residual fatigue following GBS could benefit from a supervised exercise programme. From May to July, the protocol was created and forms related to the intervention and research processes were prepared. This involved meeting with our advisory group (people who have had GBS and physios) to get their feedback. We used their feedback to refine our processes but particularly our wording in some of the documents that we share with participants. This was a very helpful process. Ethical approval was obtained from the Health and Disability Ethics Committee in mid-August and from AUT in late October. Recruitment of participants has now begun. As of Dec 1, 5 people have been screened, 4 of whom have entered the study as participants. Two other potential participants who have previously expressed interest are in the process of following up. A total of 10 participants are being sought. Anyone interested in participating or hearing more about the study, please contact Greta Smith for more information (

National GBS registry:

Research based in Hamilton has begun with the goal of establishing a National Registry of as many GBS patients as possible, going all the way back to 2015 and going forward indefinitely. The goal of this research is to find out how GBS affects New Zealanders. We already know that over the last 30+ years, NZ has had more GBS than other developed countries and that this high rate of GBS is linked to our high incidence of gastroenteritis caused by Campylobacter jejuni. In other countries, GBS following C. jejuni is usually more severe than other forms of GBS, recovery takes longer, and recovery is less complete. We want to see if that is also the case here. We also hope to be able to see how GBS affects Māori and Pasifika members of our communities, something which is almost completely unknown. The results of the research may give us more ammunition to lobby regulatory bodies to better control Campylobacter infection and may also enable us to focus more care on under-served populations. To date, 5 patients have been entered into the database. One from Nelson, 3 from Wellington and one from Waikato. We are seeking 400-500 patients, so we have a long way to go but it is good to see this started.

IVIg vs plasma exchange for the treatment of severe GBS:

GBS is usually treated with an infusion of a blood product called gamma-globulin, but it can also be treated with plasma exchange, where whole blood is removed, the plasma component of the blood is discarded, and the blood cells are returned to the patient along with donor albumin. Previous studies have shown that overall, the two treatments are equally effective, but some small studies have suggested that plasma exchange is more effective for people who are severely affected. We have launched a study comparing the two treatments in people who have GBS that is sufficiently severe to prevent walking. The study is ready to go but there have been no eligible patients so far.

GBS in the time of COVID:

Random observations by way of informal polling of a small number of neurologists around NZ have suggested that there has been a marked decline in the numbers of GBS cases since the onset of the COVID pandemic. We have therefore launched an investigation of monthly GBS incidence going back to the start of 2019 and matching that against reported cases of gastroenteritis. We suspect that government mandated social isolation may have reduced the spread of a variety of infectious diseases and therefore reduced the cases of GBS.

Identification of a local anaesthetic compound in ongaonga, the NZ native stinging nettle:

The project supporting the identification of a potential new long-acting local anaesthetic from ongaonga (Urtica ferox) reached an important milestone.  This project was funded to develop and test if a compound in this native New Zealand plant could potentially reduce neuropathic pain associated with disease such as GBS. A clinical trial protocol was developed that focused on applying a standardised extract to healthy volunteers and seeing if they experienced any reduced pain sensation.  The clinical trial was opened, and a local newspaper provided coverage of the story to solicit volunteers. At the end of November, the clinical trial achieved the targeted number of participants for enrolment. The data from this clinical trial are currently being analysed. The next step is to try to identify and characterise the exact chemical that causes the numbness which will be done in collaboration with the Cawthron Institute.