In June 2017, I put out a series of blog posts about Dr. Willy Eriksen’s hypothesis regarding the causes and potential treatment of ME/CFS (myalgic encephalomyelitis, aka chronic fatigue syndrome): summary, interview, and reaction. Now, in September 2018, Dr. Eriksen has provided an update:
Has your hypothesis changed since you published it?
No, my hypothesis is the same. So far, I have not seen any study results that have convinced me that the hypothesis is wrong.
Have your ideas regarding potential treatments changed?
I still think that Epstein-Barr virus (EBV)-specific T-cell therapy is the most interesting therapy for the time being. Infusions of EBV-specific T-cells will enhance the body’s EBV-specific immune response, and this could perhaps remove the EBV-infected cells from the nervous tissues.
There may be lessons to learn from studies of patients with multiple sclerosis (MS). MS patients seem to have EBV-infected cells in aggregates of lymphocytes in their brain. And Michael Pender and coworkers reported in October last year that they had given infusions of EBV-specific T-cells to 8 MS patients. They had not seen any significant adverse effects of the infusions. Clinical improvement was seen in 5 of the patients. The strongest beneficial effects were seen in patients who had been given T-cells with extra high activity against EBV. Pender and coworkers are now going to do a larger study in which they will use T-cells from healthy donors instead of multiplying the patients’ own cells (which are often weakened). If such T-cells from healthy donors («off-the-shelf» from cell banks) can be used without side effects, the cell products would probably be more easily accessible and less expensive.
Taking out all EBV-infected cells in the body is not currently possible. But as I mentioned in my most recent article (published online for a few weeks ago in the journal Fatigue: Biomedicine, Health & Behavior), there is a drug under testing that might be capable of doing that. This drug has been developed by a team at the Wistar Institute in USA, and is designed to stop latently EBV-infected cells from reproducing themselves. If the trials with this drug is successful, it would be of enormous significance for a range of patient groups with EBV-related disorders, and possibly also for ME/CFS patients.
So, what about about valganciclovir? Valganciclovir (and some other drugs on the market) suppresses the production of whole Epstein-Barr viruses, and thereby reduces the spread of the virus to other cells. In patients whose EBV-specific immune cells are not too exhausted, the suppression of the production of whole Epstein-Barr viruses could over time (many months) result in fewer EBV-infected cells. But valganciclovir does not suppress other forms of EBV-related activity that may take place in EBV-infected cells, such as the production of a wide range of inflammatory substances. So, it is unlikely that valganciclovir may have an immediate effect on ME/CFS symptoms. One should also be aware that valganciclovir may have serious side effects. So the long-term courses that are necessary for an effect on ME/CFS are associated with a risk of developing other health problems.
I mentioned in my most recent article that a laboratory study indicates that also apigenin (one of the many flavonoids in plant foods) may suppress the production of EBV and that this substance seems to suppress viral production at an earlier stage of viral production than valganciclovir does. It is unclear, however, how large doses that are required to get a clinical effect [that is, how large the dose needs to be to make a discernible difference]. And large doses could perhaps cause adverse effects. So, further studies are needed. It is an interesting finding, though.
Have you or others attempted this treatment [T-cell therapy] yet, or are there preparations underway to do so?
I have so far not conducted any trial with EBV-specific T-cells. I have been in contact with many cell therapy centers in Europe, USA, and Australia. And I have been in contact with the two cell therapy centers in Norway. I have also done a great deal of relevant literature research. A trial conducted in Norway will require that at least one of the two centers in Norway participate and cooperate with a cell therapy center abroad. But one of the centers here has been in an establishment phase and has little experience with T-cell therapy so far. And at the other center, in which they do have experience with T-cells, the scientists are focused on cancer therapy and seem to have low interest in ME/CFS. I have not given up on this, however, and keep on working to find a way around the obstacles.
The only test of this treatment in ME/CFS patients that I am aware of is the trial that was conducted by a team at Baylor College of Medicine, Texas, 15 years ago (Savoldo et al., 2002). I have been in contact with professor Rooney about that study. And as far as I understand, the research team did not attempt to diagnose the patients according to any of the sets of ME/CFS criteria. However, the patients in the trial, were selected from a larger group of patients with «chronic fatigue». And patients with some serological signs of EBV-activity were preferred. Based on the symptoms and signs reported in the description of the patients in the trial, I guess that at least some of the patients had ME/CFS. The T-cell therapy was associated with a positive outcome, although one of the patients relapsed after a few months. No significant side effects were seen.
Some months ago, I got mail from a ME/CFS patient abroad, who wrote that he planned to go to Thailand for EBV-specific T-cell therapy. I have not heard from him after that, and I do not know where in Thailand he thought he could get the therapy.