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.
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Thanks for posting this Tracy. I have watched Michael Penders M.S. research for years, and I think it may benefit M.E. /C.F.S. eventually. He is only funded to research M.S., so even if he does come up with some ground breaking treatment, it might be a while before it benefits ME/CFS.
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Just found your website. Have y.ou an more up to date articles? Do you still support Ericksens hypothesis? What is your opinion of COVID long haulers? Thanks
Hi, Tara – I’ve never actually supported or rejected Eriksen’s hypothesis; I just thought it deserved attention as a possible explanation. My current belief is that the mechanism he describes MIGHT contribute to sustaining or worsening ME/CFS in a lot of people (including me) but that it’s not the central problem.
I believe that some, but definitely not all, COVID long-haulers have ME/CFS. This is a horrible tragedy, and it’s difficult to read stories about people’s lives being ruined like mine has. The tragedy’s silver lining is that there will be more effort to find treatments. Selfishly, I’m concerned that people with longstanding ME/CFS will be excluded from clinics that treat long-haulers because we didn’t get COVID. (Actually, I might have, but that’s a different topic.)
Thanks for the reply. I agree our lives have been ruined by this and like you I worry that we will continue to be ignored and maligned by the medical community. I feel a bit guilty for expressing this because the long haulers are suffering and deserve treatment, but some of us have been bedridden for decades with no hope and negligible funding for research. I also worry about what will happen to research for ME as most of the current ME researchers are jumping on the band wagon and taking advantage of the generous funding for COVID.
I think, or at least hope, that we’ll benefit from the research too and that, in time, we’ll all be recognized as having the same disease and deserving the same care. For my part, I’ve already tried two things that have helped some long haulers: 1) Ivermectin, which was a dud and 2) breathwork, which has helped a bit (https://stasisperformance.com/covid19).
I am trying Ivermectin as well. Was told to follow the FLCCC protocol. I’ve followed some of the online comments and some are taking far larger doses and seem to think that helps. I thought perhaps the anti viral and anti inflammatory properties would help with the ME.
I hope it works for you.