Dr. Maria Gjerpe, the founder and chairman of the board in MEandYou was interviewed by the German newspaper Der Spiegel. About Der Spiegel Online

The original article in German is translated to English.

“Chronic fatigue syndrome: Patient wants to finance drug study by crowdfunding

A cancer drug may also help people who suffer from chronic fatigue syndrome, as previous, smaller studies indicate. But there isn’t enough money available to conduct a larger study. A person affected by the syndrome is now addressing the problem – via crowdfunding.

Normally, clinical trials in which a drug is being tested, do not have a funding problem.

Pharmaceutical companies, who want to bring the drug to the market, pay. But what happens when the drug has long since been approved as a cure for another disease and the producer is not interested in the study?

A Norwegian physician now wants to solve this exact problem by crowdfunding. A very unusual step in medical research.

Maria Gjerpe herself suffers from CFS, chronic fatigue syndrome, which is sometimes known as Myalgic Encephalomyelitis. The physician has participated as a volunteer in a small study, in which the cancer drug Rituximab was tested. Gjerpe who got the remedy and not a placebo, felt much better afterwards. She wished she could conduct a larger study, which is needed to confirm the benefits of the drug more clearly – or possibly to disprove them, since good results from smaller trials are not always confirmed in larger studies.

The study was lead by physicians of the Haukeland University Hospital in Bergen, Norway. A few years back, by chance, the oncologists found out that the cancer drug could help with CFS. For a cancer patient, who also suffered from CFS, many symptoms of the mysterious suffering that is often associated with sleep disturbances, headaches, muscle pain and difficulty concentrating, disappeared. The afflictions can be so severe that sufferers are unlikely to be able to leave the bed.

Hope after the first studies

In a pilot study, and after a further study with 30 subjects, it was confirmed that Rituximab helps many persons affected, at least for a certain period. (Link to PlosOne) But the number of patients is far too small to justify the widespread use of the drug. At the next trial at the University of Bergen, at least 140 subjects are planned to participate. As Maria Gjerpe reported on her website, the study will cost the equivalent of 1.4 million euros.

Admittedly, pharmaceutical company Roche, which markets the cancer drug under the name MabThera, told SPIEGEL ONLINE after the publication of the study in 2011, that the results are “interesting in principle”. But it was also said that “We currently have no plans to check MabThera for possible treatments for CFS in clinical trials.”

The Norwegian government is only partly financing the planned study, Gjerpe wants to provide the remaining 930,000 euros by June 6th., via crowdfunding. By Good Friday, ME and YOU has received about 92,000 euros. The donations range between two crowns (converted 27 cents) and 100,000 kroners (13,350 euros), the physician reported. (Continue under the pic)

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The donors will not be able influence the study itself, because its execution is already precisely planned. In contrast to projects that are presented on e.g. Kickstarter, there is no money-back guarantee. If, according to Gjerpes, revenues should prove to be insufficient for this study, they will be used to finance a number of smaller studies with CFS patients at Haukeland Hospital. Should the revenues be insufficient for these projects too, the money would be used to help finance another CFS study which would then be selected. ”

Thank you, Bernd, for translating!

Marias comments:
- CFS is not ME. The scientist at Haukeland Hospital are researching on patients with “ME”, not “CFS”.  ME is a distinct neurological diagnose, approved by WHO, but CFS is a diagnose based upon a long term feeling of exhaustion and fatigue. That feeling can be very different conditions and is not to be mixed with the illness ME, although a lot of people mix them. In the end everybody tend to believe that it is the same condition. The scientist are very eager to only do research on patients with ME and follow strickt criteria to be sure of whom the patients are.
- The correct numbers for the donations are 20-100 000 NOK.
- Major or moderate overall response, defined as lasting improvements in self-reported Fatigue score during follow-up, was seen in 10 out of 15 patients, 2/3, (67%) in the Rituximab group, as shown in  in PlosOne http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0026358

 

This is a interview with

Maria Gjerpe, founder and chairman of the board in MEandYou
Bent Høie (Cons.) — MP, Leader of Standing Committee on Health and Social Affairs.
Arvid Hallén — Chief Executive Officer, The Research Council of Norway

where we discuss initiativ like MEandYou. How to bring science and people tighter together and how to empower them to do contribute with what they want?

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