Riding for CFS awareness

Kate Proctor plans to ride the Munda Biddi Trail in Western Australia. Picture: STEWART CHAMBERS

By Jed Lanyon

Yarra Ranges resident Kate Proctor will soon journey 1060 kilometers by bike to raise awareness and funds for her two family members suffering from a rare condition.

Ms Proctor’s brother and mum have been diagnosed with chronic fatigue syndrome (CFS), a disorder characterised by extreme fatigue or tiredness that doesn’t go away with rest and can’t be explained by an underlying medical condition.

“My brother was diagnosed about seven years ago. It really impacted his life, he was unable to go to uni. He’s been pretty much bed ridden for the last six or seven years and his social life has really dropped off. All that growth you do when you’re younger and coming out of school, he’s really skipped out on a lot of that.

“My mum was diagnosed not that long ago. For years she was told it was all in her head and that it didn’t exist or that her illness was fake. A lot of people have gone through a similar thing with chronic fatigue syndrome, but eventually she was diagnosed… Often she can’t even shower and get up to do daily tasks.

“We’re really trying to work on ways to try and improve both her and my brother’s health.”

The family has tried seeing multiple specialists, had tests undertaken and sent overseas and looked for natural remedies, all coming with varied results.

The causes of CFS aren’t fully understood yet. Some theories include viral infection, psychological stress, or a combination of factors. Because no single cause has been identified, and because many other conditions produce similar symptoms, the condition can be difficult to diagnose.

Ms Proctor plans to drive across to Western Australia in June where she will cycle from Albany to Perth along the Munda Biddi Trail. She hopes that travel restrictions to the western state will have eased throughout June, otherwise she will postpone the trip to a later date.

“I’ve been riding quite a bit since I was a kid. I don’t know whether I rode or walked first,” she joked. “I’ve done one five-day ride previously, but I’ve never done one like this, so maybe I’ve bitten off more than I can chew.”

Ms Proctor has set up a GoFundMe in a bid to help raise funds to support her family’s medical costs for experimental treatments and tests.

“We’ve spent so much money and time trying so many different things to help this illness, upwards of $20,000 a year sometimes on medical fees or to have things sent overseas, which is now even harder because of Covid.

“My dad is practically a carer for two and is supporting a family of five. So it is really stressful on them.”

Ms Proctor said she hopes to give people a better understanding of CFS.

“People who don’t know about it tend to assume that it is all in their head or that it is their fault that they’re feeling like this. I really want to create awareness that this is a real illness and people are suffering a lot from it.”

For more information about Ms Proctor’s fundraiser, visit: https://gofund.me/a47facc3