Artikkel i Aftenposten: ME-pasienter demonstrerer for medisin som kan bedre livskvaliteten. ME-pasienter og pårørende markerte sin fortvilelse med laken i foran Stortinget ettermiddag. Hvert laken representerer timevis med lidelse.
The big Norwegian newspaper, Aftenposten, covered our event today, Sheets and stories. It´s in Norwegian, but this is the Google translation, beneath the picture:
“ME patients demonstrate for medicine to improve the quality of life”
ME patients and their families marked their despair with sheets in front of the Parliament afternoon. Each sheet represents hours of suffering.
The reason for the event is that doctors at Haukeland have not got the necessary ten million kroner to continue a research project to diagnose and treat ME patients with the cancer drug rituximab.
She (Maria Gjerpe) says that patients has as one of the symptoms that they are exhausted, and therefore does not have the ability to shout themselves.
– Most families have more than enough to take care of their very sick. Now, when I feel healthy after treatment at Haukeland Hospital, perceived as essential to voice the need for more research. Who else will do it?
Maria Gjerpe is the initiator of the association MEandYou with the goal of grassroots fund the remaining 7 million required to start a clinical trial with 140 patients.
We want to show what I believe is an economic mud hole that we will soon have to get up from. The saving rope out of the hole is biomedical research with solid study design so that we can get more knowledge. There is 10000-20000 sick people who can not attend a full life because they are sick. These have no real treatment options today. It is an economic waste, says Gjerpe.
Gjerpe is even a doctor and have been trying out the treatment with the cancer drug against her serious neuroimmune disease, myalgic encephalomyelitis (ME).
Healthy for 90 days
After treatment, she has a newfound health that is expected to last 90 days before she can become bedridden again. In the period up to June 6 she takes aim through crowdfunding to fund a larger clinical trial of the medicine she has been given.
If she succeeds, this is probably the first crowdfunding of clinical research that has been done.
– I feel that the demonstration is an admission of failure. It is unreasonable that patients from all over the world, the private sector and foundations to fund research in a field that is completely underpriority. We know it is between 10 and 20,000 patients with ME, but very little research on this, says Maria Gjerpe.
- Medical Breakthrough
She thinks it is especially bad that it does not set aside money for research, especially because it was research year in Norway last year.
– We might standing in front of a medical breakthrough and so we choose instead to close their eyes.
Maria Gjerpe runs a blog spot, Marias Method, which has received funding from the Freedom of Expression. She notes that it is widely recognized in Norway that we know too little about ME.
– SINTEF came in 2011 with a report in which they described that there is insufficient knowledge. She points out that the politicians have earmarked four million for ME research in the national budget over two years.
– Politicians have seen that this is a national responsibility. The medical specialists may appear to be bottlenecks because SINTEF showed that there is deep disagreement about whether ME at all is a disease. If you do not recognize that ME is a disease, as WHO has defined it, it leads to other explanatory models – and still lack of research and treatment.
Maria Gjerpe in contact with many ME patients.
– They are normal people. They are so common that it also could have been you, now healthy. Sick has the same needs to be healthy, get back to work and have a social life that everyone else has, she says.
The medicine that is been researched, is called Rituximab. It must be given in a drip with every few months to keep the patient healthy.
80 percent of patients in the Phase 2 study of 30 patients became ill again when they received multiple doses.
– Patients with cancer and autoimmune diseases, receive rituximab at intervals of 3-6 months to keep healthy. I know that my time will probably be limited, and I spend all my time with regained health to ensure that research continues.
– I am collecting money as long as my health permits, says Maria Gjerpe.
Gjerpe appeal to patients and those who support patients from all over the world to participate in fundraising and to fund research.
The neuroimmune disease, myalgic encephalomyelitis (ME) is one of the diseases that lead to the greatest degree of disability. About 25 percent of patients are bedridden or husbundne. In Norway it is estimated that there are about 10,000 sick. We do not know how many children are sick, but estimated to be between 1000 to 2000. Globally, it is considered to be 17 million sick. About 70 percent of cases are associated with a viral infection, especially mononucleosis / mononucleosis.
Influenza and pain
Examples of symptoms are flu-like malaise, pain, sensory hypersensitivity, insomnia, lack of energy, and difficulty with concentration and memory. The symptoms increased significantly after mental or physical activity, and takes days before they subside. The disease is in most cases permanent and there is currently no effective treatment.