When she was 14, new Scottish Liberal Democrat MSP for the Highlands and Islands Morven May-MacCallum contracted Lyme Disease after being bitten by a tick.

Yesterday made her first speech in the Scottish Parliament in which she spoke of her experience and committed to campaign on behalf of people living with ME/CFS, fibromyalgia, endometriosis, POTS, Ehlers-Danlos syndrome and other chronic illnesses.

It’s an incredible speech which will resonate with anyone who suffers from these and other conditions and who has had to fight to be believed.

Watch here:

The text is below.

“It is an immense privilege to stand here today.

Not only because I have the honour of representing the incredible people of the Highlands and Islands, where I was born and raised but because there was a time when my family feared I might not live to be here today.

There are many issues I could speak about when it comes to healthcare in the Highlands and Islands but today, I want to speak about something that remains largely hidden from view.

I want to speak about chronic illness and do so through my own experience.

As a teenager, I was bitten by a tick and infected with Lyme disease.

What should have a few weeks of treatment became years of medical uncertainty. I was repeatedly misdiagnosed, repeatedly denied treatment and ultimately left to fend for myself as my health deteriorated.

I spent more than eight years largely housebound and bedbound.

While my friends were studying, travelling and building their futures, I was fighting simply to survive each day.

It was only through the determination and financial sacrifice of my family that I am here today.

Even now, I live with a lifelong illness which affects every aspect of my day.

But my story should never have been my story and nor should it become anyone else’s.

Yet, all these years on, I constantly hear from people whose experiences mirror my own.

The tragedy is that, for many patients, a few weeks of the correct antibiotics can prevent a lifetime of ill health and disability.

Despite the NICE guidelines on Lyme disease being in place since 2018, people are still being refused treatment, prescribed inappropriate antibiotics or diagnosed far too late.

The main reason for this, is that we that still don’t have an accurate blood test for this disease.

Lyme disease is caused by an extraordinarily complex bacteria.

But complexity should never become an excuse for neglect.

More worryingly still, these failures are not only harming lives—they are costing lives.

Scott Beattie was a gamekeeper from Ross-shire who died at Raigmore Hospital at the age of just 43 after being misdiagnosed and mistreated.

What happened to Scott should never have happened.

And we owe it to him, his partner and their two children to do better.

We owe it to all those who were left with so little hope by the very system that is meant to support them that they felt their only choice to ease their and their families suffering was to end their own life.

The issue of Lyme disease is widespread, from people being infected walking up Arthur’s seat, to people’s gardens being so overrun by ticks in the Highlands and Islands that they are scared to let their kinds play in them.

In fact, a 2024 survey by the Lyme Resource Centre found that 80 per cent of respondents reported being infected in the Highlands and Islands. Yet public awareness remains worryingly low.

The same survey found that 82 per cent said they, a family member, friend or colleague suspected Lyme disease before a medical professional did.

Patients should not have to diagnose themselves. But sadly, many people living with chronic illness will recognise the experience of having to self-diagnose.

Across Scotland, people living with ME/CFS, fibromyalgia, endometriosis, POTS, Ehlers-Danlos syndrome and many other chronic illnesses face similar struggles to get diagnosed, access support and treatment.

While the conditions may be different, their experiences are often remarkably similar to those who have Lyme.

Perhaps the most damaging experience of all though is not simply the illness itself.

It is not being believed.

People will chronic illness are often told:

“It’s probably anxiety.”

“You don’t look sick.”

“It’s all in your head.”

No patient should have to hear those words.

People with chronic illness should not have to sell their homes, spend their pensions, take out huge loans to pay for treatment that should be provided on the NHS.

Because behind every missed diagnosis and every waiting list statistic is a human being whose life has been torn apart.

I remain proud of our NHS and grateful to the staff who work tirelessly within it.

But supporting the NHS also means being honest about where it is failing.

We need better diagnostics for all chronic illnesses.

We need specialist expertise.

We need greater awareness among both healthcare professionals and the public.

And we need to ensure that patients are listened to when they tell us they are ill.

Because my story should never have been my story.

And Scott’s story should never have been his story.

And there are people across Scotland today whose stories are still being written.

And we have the power to change them.

So, I ask this chamber to work together to ensure that no one in Scotland has to fight harder to be believed than they do to get well.

Thank you.

Mòran taing.”

* Caron Lindsay is Editor of Liberal Democrat Voice and blogs at Caron's Musings. You can find her on Bluesky at caronmlindsay.bsky.social