Anne Örtegren
Stockholm, Sweden

On their live album Rattle and Hum, U2’s Bono says, before launching into Helter Skelter, “This is a song Charles Manson stole from the Beatles. We’re stealin’ it back.

Like U2, Anne Örtegren wants to steal her life back from CFS.

She caught a major respiratory infection 10 years ago at age 28 and simply never got well. She still feels like she has a major flu every day. “Any activity will aggravate the illness and make me completely bed-bound. I have had to give up work and my busy social life, my travels all over the world and my trekking in jungles and mountains,” Anne says. “I am now home-bound, barely capable of getting up to have dinner. ME/CFS has stolen everything that was my life.”

When she was diagnosed with CFS three years later, she researched where to turn for hope and help. “I realized that awareness of ME/CFS is low and that ME/CFS research is hugely underfunded. I understood that until reasonable funding is directed towards biomedical research, I will remain severely ill and isolated from life. I needed to turn to people and organizations who could make things change. The CFIDS Association of America was one,” says Anne.

Anne also understands the challenge CFS patients face in the research arena:

“Right now, it is up to us patients and friends and family members to bring on the change. Sadly, federal funding for ME/CFS research is ludicrously low. In Sweden, there is no budget at all. In the USA, the NIH, the world’s largest medical research funder, spends a smidgen on ME/CFS. A ‘normal’ NIH budget for comparable diseases is around $150 million per year. For example, around $130 million per year is directed at MS … the figure for ME/CFS is $5 million per year. That is around 30 times less than it should be!

“This means that in one year, MS researchers can get done what it takes ME/CFS researchers 30 years to accomplish. No wonder there are no biomarkers or effective treatments for ME/CFS. No wonder there is such little understanding of underlying disease processes. In the past 25 years, biomedical ME/CFS research has come up with a number of interesting findings and launched several possible theories of disease process, as well as potential subgroups. There has been no lack of promising leads and exciting possibilities. But all too often, the initial pilot studies have not been followed by larger studies or independent confirmation, due to lack of funding. Many leads have been left without proper follow-up. In the meantime, our lives go by. As a patient, I can’t just sit and let this happen.”

Anne’s income comes primarily from a small disability allowance, yet she made one of the first gifts to THECatalystFUND. “I know small donations matter, too. With THECatalystFUND, I know my donation before year-end will also be matched by two generous donor families, so it will have double impact,” she notes. “The hope for me and other ME/CFS sufferers lies with organizations such as the CFIDS Association. In the years I have been ill, I have seen the Association fund some of the most important and hopeful ME/CFS research. We have many leads. This makes me hopeful and helps me endure for another year.

“In the ME/CFS community, we need to start helping ourselves, by giving small donations, and then reach out to our family and friends and ask them to contribute. There are researchers out there just waiting to get started on solving our disease. All that is needed is funding. Please join me in contributing with a small gift to THECatalystFUND. Let’s move ME/CFS research forward!”

[pulled quote] Biomedical research is the only way to get me and other ME/CFS patients out of our desolate situation. We need to find biomarkers, understand the disease mechanisms and find treatment, hopefully one day a cure. Only research can do this.

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