A magazine published by the Norwegian Society of Graduate Technical and Scientific Professional has a good article on ME. Jørn Tore Haugen tells of his story as ME sufferer since a flu in 2012. He follows research into ME closely and this is what gives him hope. He says the government must think much more long term, and that the good research projects are financed by patients themselves. He also mentions the psychosomatic approach and has little positive to say.
DecodeME and the Daratumumab-study are used as examples of progress in the field.
ME researcher Olav Mella is also interviewed and talks about how it all started and about the debate surrounding the diagnosis.
Quote:
– There have been different views on ME for many years. Especially in recent years, more and more data have become available that can explain the widespread symptoms from different organ systems. The emergence of long Covid, with a disease picture that in many people has striking clinical similarities to traditional ME, has contributed to a new impetus in the research field.
– There is considerable concern among health authorities in many countries about the prospects of a new, large group of patients with disability lasting decades.
He believes that the press tends to pit different views on ME and long Covid against each other.
– But personally, I believe that further research results must be awaited before any agreement can be reached. As long as the disease is not understood better, it is easy to assert different views on the disease. Because the discussion has been heated and brings little new, we have kept a low profile and worked to better understand the disease mechanisms and conduct clinical studies to find effective treatment.
– It is still a disease with an extremely high level of suffering and long-term disability, he says.
Tekna:
Jørn Tore har ikke kunnet jobbe på 13 år
google translation:
Jørn Tore has not been able to work for 13 years
There is also a section about the Daratumumab study which I didn't see until now:
– Our hypothesis has long been that ME is an immune disease
The larger study that has recently been initiated (ResetME) uses daratumumab as the treatment, while placebo is the control.
- Daratumumab is a monoclonal antibody, that is, a substance that identifies a special molecule CD38 on the surface of immune cells.
- The occurrence of CD38 is particularly high on so-called plasma cells.
- Upon binding to the plasma cell, another immune cell (the NK cell) is activated, which participates in killing the plasma cell.
- The effect of this is that the formation of antibodies is temporarily reduced, both the amount of normal antibodies and antibodies that damage various processes in the body.
– The reason for choosing daratumumab is that the drug has previously been shown to have a stronger effect on the so-called long-lived plasma cells than other immune drugs. Our hypothesis has long been that ME is an immune disease, in which autoantibodies are formed, especially functional autoantibodies, which affect body functions without causing inflammatory reactions.
– These autoantibodies are largely formed from long-lived plasma cells, which can continuously and indefinitely release such harmful molecules into the blood.
– Do you see any patterns or special features in the immune system of the ME patients who participate, which could provide insight into the disease mechanisms?
– Patients' so-called adaptive (acquired) immune systems differ, depending on the types of infections, bacteria and viruses patients have encountered in their lives. Because of this, immune manipulation cannot be expected to be effective in everyone. For example, in the pilot study, we saw that the patients who did not respond had one common feature, which we will use in the next study to find the right patients to investigate the effect of daratumumab.
– We are trying to find out as much as possible about the immune system of patients who participate in our studies. In the ResetME study that has just started, we have extensive collaboration with a research group at the University of Bergen (Professor Tronstad) and the Charite University Hospital in Berlin (Professor Scheibenbogen).
– In-depth analyses of the immune system are performed here and we hope to learn whether there are characteristic changes in the immune system in those who have a clinical response and those who do not.
– Can this potentially help everyone with ME, or only a certain subgroup?
– ME is an immunologically complex disease. We currently do not have evidence to say that treatment given as in the pilot study will have a similar effect in general for ME patients. We hope that ResetME can help us reveal this, he says.
Jørn Tore hopes and believes that Daratumumab can be a solution for him.
– Yes, it definitely gives hope!
– If it is an autoimmune disease that affects the citric acid cycle, then it makes a lot of sense to me anyway. I can't count how many times I have felt malnourished, which is a very unpleasant feeling where you are almost paralyzed and unable to respond until you have eaten something.
– I have felt this feeling for no reason many times, I may have eaten less than an hour before it happens. The common denominator is that I have done something a little hard active right before it happens.
www.forskersonen.no
meassociation.org.uk
www.euractiv.com
www.universitetsavisa.no
