Crowdfunding ME research!

image_thumbME – officially called ME/CFS, often called chronic fatigue syndrome – is a horrible disease: It doesn’t kill you, but it takes your life away. Unfortunately, the causes and symptoms are so vague that both treatment and research is not prioritized, many doctors have unsubstantiated opinions about the illness (“we don’t know what it is, so it is probably psychological”,) and the ME patients cannot themselves fight for their rights, since they are so deadly tired. As a father of a daughter with ME I have many times been distraught by how little is done, and the degree to which the patient (and sometimes the relatives) are treated with indifference and suspicion in a health system that does not know how to nor has any interest in dealing with them.

But things are moving slowly for the better. There are more and more indications that this, at least for a large percent of the sufferers, is an autoimmune disease. Ola Didrik Saugstad, Norway’s most cited pediatrician, says that in a few years, ME will be like stomach ulcers – initially seen as the patient’s fault (too much stress and/or spicy food,) until two physicians, Robin Warren and Barry J. Marshall, showed that it was a bacterial colonization that could be treated with medicines.

Two doctors at the cancer ward of Haukeland research hospital in Bergen has had very interesting results in treating ME patients with Rituximab, a medicine used against certain cancer types, such as leukemia. They now need to do a study of 140 patients. This is, as far as I know, the first real, bona fide research projects on using medicines to fight ME – the medicine is there, the initial results are very promising, and what is needed is a proper double-blind test with enough subjects. Unfortunately, the medicine is expensive, and for inexplicable reasons, this study was not prioritized by the Norwegian Research Board, even though it was deemed very worthy application.

Maria Gjerpe (www.mariasmetode.no), a physician suffering from ME herself, has taken the initiative to crowdfund this project. 7 million NOK ($1.2m) is needed, and you can donate from their home page (via PayPal or bank transfer.)

You can see a video (Norwegian, subtitles) below: Maria explains some of the background, and there are contributions by Ola Didrik Saugstad, MP Erna Solberg (probably Norway’s next Prime Minister) and MP Laila Dåvøy:

ME/CFS has for too long been a disease where quacks of all kinds have been allowed to prey on patients with nowhere else to go. Rituximab and other medicines can be the solution for at least some patients with this disease. Donate today – this is both solid medical research and, if we can get some patients back to a productive life, a very worthwhile investment!

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  1. Pingback: Støtte til ME-forskning | According to Julie

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