Doing her bit for ME research

English2. December 2014

Maria Gjerpe, a doctor and sufferer from myalgic encephalopathy (chronic fatigue syndrome), has raised NOK 3 million to back work on a disease about which little is known. She is now also getting support from the Kavli Trust.


Teresa Grøtan

Gjerpe herself had glandular fever (infectious mononucleosis), colloquially known as the “kissing disease”, as a child, but nevertheless succeeded in qualifying as a physician.
During discussion with doctors at Bergen’s Haukeland University Hospital, she learnt that a drug called rituximab had surprisingly positive effects not only on cancer but also on ME.
This made her very curious, and raised the possibility that she and other sufferers from the condition could get help. She was asked to take part in a pilot study.

Treatment

What form did the treatment with rituximab take?
I was given an infusion directly into the artery. This took many hours, and was closely monitored by a doctor and cancer nurses.

What was your condition when the treatment began?
I was very ill. I had to be accompanied by somebody to help me get to the hospital, was placed in a wheelchair and had to be assisted into bed.
During the first treatment sessions, I lay in be with all the curtains drawn, earplugs in and blindfolded. I could hardly speak after the effort of getting from Oslo to Bergen.

Following the third course, however, I was able to travel on my own, no longer needed a wheelchair, was seated during the treatment and chatted with people I met.
I felt like a new person. The nurse who had greeted me on the first occasion got tears in her eyes when she saw how well I had become.

Think clearly

What effect did the medication have on you?
My first reaction was that I could think clearly again. I got questions which I managed to answer without having to prepare an response first.
I could do everyday things again, without it costing me anything – like making dinner, taking a shower, going for a walk, buying food or being in a shopping centre. Long walks became possible – and I didn’t get ill afterwards. I could drive a car and play loud music on the radio.
I’m now working full-time in a permanent job. I can promise you that my life has changed since that first infusion.

How and why did you start MEandYou?
Because Norway has about 10 000 people suffering from ME who receive no form of treatment which can restore them to health.
When I realised that the scientists at Haukeland risked being unable to continue their research on the medication which had made me so healthy, I felt I couldn’t stand idly by.

I’m a doctor and concerned with knowledge-based therapy – and I’m a patient who couldn’t leave my fellow sufferers without research, diagnostic tools and treatment. It just wasn’t possible.

Now that I felt restored to health, I promised myself that I’d move this world. I grew up believing that it’s my responsibility, and opportunity, to change things which don’t work well for those who’re not best placed.

So I quite simply had no other choice than to do this.

Simple

How did you come by the idea of crowdfunding?
It was quite simple, really. Since I wanted this research to continue, I felt there must be many others in the world with the same desire.
In fact, I was convinced that this was true, and didn’t doubt for a second that I’d succeed – even though nobody had yet crowdfunded a clinical research trial.

How does it work?
Crowdfunding takes place on the internet, where many people go around with virtual collection boxes and invited others to contribute. It’s normally been used for such projects as films, music, health-related tools and the like.

Various approaches exist. You can use dedicated websites and tools, for example, where the site takes a share of what you collect and the giver gets a gift in return. Moreover, the donor don’t have their donation accepted until it’s certain that the project has been fully funded.

I chose not to use a ready-made site because I wanted every krone to go directly to the scientists. MEandYou hasn’t had any expenses, other than my time, expertise and willingness, and I’ve been give good help by supporters along the way.

More than 5 000 people from 49 different nations opted to put their trust in me by paying in almost NOK 3 million in the course of 90 days.

Web shop

Have you used any other methods to raise money?
With very good help, I created a web shop which people could donate to – often fantastic things they’d made themselves. We held an auction where people could bid for objects.
The whole “pools league” of top-flight Norwegian football clubs donated signed T-shirts, for example, and international chess champion Magnus Carlsen gave us his chessboard.

What do you hope to achieve?
I’ve ensured that the study with 152 ME sufferers being conducted by the cancer department at Haukeland Hospital is now fully funded. That was my primary target.
My secondary objective was to change the discourse on chronic fatigue syndrome. I wanted to show that this patient group is concerned in a positive way to secure correct diagnosis, treatment and research – particularly in the biomedical sphere.

Third, I wanted to achieve a health policy awakening which lasted. ME sufferers are ill. They want to recover their health and are therefore concerned about the quality of their treatment.

What’s your role in this project today?
MEandYou is a big movement with a tiny administration. I fill virtually all the roles, but have good assistance with accounting and the web shop as well as 4 000 firm supporters on our Facebook site.

This means I’ve taken the initiative, developed the concept, done all the communications work, been responsible for day-to-day operations and chair the board.

Pioneering

How did you come into contact with the Kavli Trust?
The trust has made a pioneering commitment and been bold in its support in many areas, and I knew it had previously supported research at Haukeland.
In my analysis phase, I sent an e-mail to everyone I thought might be willing to participate in a joint effort, and the trust was on my list.


When Maria Gjerpe learnt that doctors were not getting funding for their research on chronic fatigue syndrome (ME), she decided to raise the money herself. She explains why this is so important on the www.meyou.no website. (Photo: private)

Research is the key to learning about ME

Chronic fatigue syndrome or myalgic encephalopathy (ME) is a complex illness without known causes, which affects about 0.2 per cent of Norwegians. The main problem is a long-lasting fatigue which can at times turn sufferers into invalids.

The Kavli Trust has been supporting cancer scientists Olav Mella and Øystein Fluge at Bergen’s Haukeland University Hospital since 2011.

Their hypothesis is that ME could be a form of autoimmune condition, in which the body is attacked by its own immune system.
Go here to read an interview with ME patient Maria Gjerpe, who has been fighting for some time on behalf of fellow sufferers worldwide.

The Kavli Trust was founded by Knut Kavli in 1962 and owns Norway’s Kavli food group. It is charged with distributing the profits from the commercial business in accordance with Kavli’s wishes. It has made grants totalling about NOK 40 million so far this year to humanitarian, cultural and research projects.

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