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I think that we have not cared for people with ME (myalgic encephelomyelitis, otherwise known as chronic fatigue syndrome) to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that." - Apology from the Norwegian Directorate of Health on publication of a study showing that the cancer drug rituximab is effective in the treatment of chronic fatigue syndrome/ME.
What was reason for this unprecedented apology from the public health authorities in Norway?
It was the publication of a study which showed that the drug rituximab improved the health of 10 of 15 patients (67%) with chronic fatigue syndrome/ME and that 2 of the 15 patients given the drug staged a complete recovery from their condition. You can read about the study in Medscape.
Why is this important to the autism community?
It's important because chronic fatigue syndrome/ME and autism share many common clinical indicators, including immune disregulation, increased oxidative stress, heavy metal retention, co-infection by other pathogens, and mitichondrial insufficiency. What is effective in treating chronic fatigue syndrome/ME may end up having some relevance to treatments for autism. I have written before about my daughter with autism having tested positive for XMRV. You can read my previous article for background on XMRV.
The researchers I have spoken with about XMRV and autism have told me their suspicion that the retrovirus likes to enter B cells which have the CD20 receptor. They also suspect that it isn't the retrovirus itself which is doing the harm, but the toxins or auto-antibodies which are produced in response to the retrovirus. Rituximab specifically targets those B cells which have the CD20 receptor. It is a very targeted type of chemotherapy, although it is not without significant risks.
B cells are part of the immune system, but when they go haywire they may cause cancer, or diseases like rheumatoid arthritis. Rituximab is approved for the treatment of rheumatoid arthritis and many types of lymphoma.
The question of why rituximab's depletion of B cells helps those with chronic fatigue syndrome/ME remains unexplained. The researchers specifically noted they had searched for XMRV and not found evidence of its presence, but that touches on the greater issue of whether the currently validated test for XMRV is accurate.
As explained to me by advocates in the chronic fatigue syndrome/ME community, the problem may be with the clone currently being used to validate XMRV infection in the currently available tests. According to my sources, this clone, known as VP62, was made from pieces of 3 different viruses, not from an actual virus recovered from a living human being. Thus, VP62 may be adequate for determining some of the characteristics of this type of retrovirus, but is probably not ideal for detecting the virus in actual subjects.
The teams which have found the virus, such as the study by Drs. Shyh Ching-Lo of the FDA and Harvey Alter of the National Institute of Health understood that their probes had to be broad enough to pick up what is an all likelihood a family of XMRVs, or what may end up as their new designation, human gamma-retroviruses (HGRVs). You can read their research, published in the Proceedings of the National Academy of Sciences.
This puts the Norweigan team in the curious position of saying they don't think it's the XMRV retrovirus, but the only thing that makes sense is that they're killing some sort of retrovirus. (For those keeping score at home, there are only two other identified human retroviruses, HIV which causes AIDS and H-TLV which is found mainly in Asian countries.) From the Medscape article, "One theory, held by researchers who believe CFS may be caused by an infection, suggests that retroviruses may hide out in dormant B-cells, only becoming active when the cell is triggered and rapidly multiplies. (Author's note - By activating the immune system, vaccines cause B-cell replication.) But Fluge thinks that if that's the case, patients would see quicker improvements after taking the rituximab. 'We think that what we see could best be explained with an autoimmune mechanism and gradual elimination of auto-antibodies,' he says."
The patients who responded to the treatment usually started improving sometime between two to seven months after treatment. This suggests that something in addition to the retrovirus is causing the problem.
I can't say I'm a fan of rituximab. It's a drug that comes with a black box warning, meaning it can cause death. But what has been revealed about the etiology of chronic fatigue syndrome/ME, and possibly autism, may be truly remarkable. Other, less toxic medications which supposedly do much of the same thing are on their way to market. I'm not suggesting any solutions in this article.
I'm just raising the possibility that this research with rituximab may have finally shown us the target.
Read another article from ABC News on this research HERE.
Kent Heckenlively is a Contributing Editor to Age of Autism