Friday, February 22, 2013

Interview with Vincent Lombardi, Ph.D. - Part 1

Many patients have written and asked WPI for further information about the recent study titled, Plasmacytoid Dendritic Cells in the Duodenum of Individuals Diagnosed with Myalgic Encephalomyelitis Are Uniquely Immunoreactive to Antibodies to Human Endogenous Retroviral Proteins, published online in the journal In Vivo. We asked Dr. Vincent Lombardi, Research Director of WPI, to give us his answers to the following questions.
Question: How did this project come about?
Answer: Dr. DeMeirleir and I began our collaboration on this project about 17 months ago, although we have had an excellent collaborative relationship for many years. My interest in the innate immune response and his interest in gut pathology provided a perfect balance to conduct this research.
Question: I believe that this is the first tissue-study done in those with ME.  Why did you choose to use gut specimens for your study?
Answer: Once Dr. DeMeirleir and I were convinced that the original infectious retroviral association was incorrect, we began to explore other possibilities that could account for some of our previous observations. We believed that the gut pathology might account for the systemic inflammation associated with ME.  Additionally, individuals infected with HIV all have gut issues, as do others with diseases that are characterized by neuro-inflammation.  With all the compelling evidence of the involvement of human endogenous retroviruses (HERVs) in inflammatory diseases like MS and lupus, it made sense to us to look in the gut. I have had a long-standing interest in plasmacytoid dendritic cells (pDCs), and once we realized that HERVs expression was present in only one type of cell, it was one of the first cell populations I suspected.
Question: What does this mean for the ME community?

Answer: We intend to take a responsible and optimistic approach to this preliminary finding and follow it up with good, solid science.  For some time, my focus has been on the type I interferon response, in particular interferon producing pDCs, and their role in inflammatory cytokine production. Therefore, identifying HERVs in these cells is encouraging, but we need to do the hard work to understand what role they play.   Identification of abnormalities in pDCs, which are antigen-presenting cells, certainly could be related to the autoimmune-like symptoms associated with ME. Investigating a potential relationship between autoimmunity and ME is worth further study. We intend to perform this work in collaboration with Dr. DeMeirleir and other researchers and physicians, focusing our research efforts towards a better understanding of our findings.

For the March/April issue of In Vivo, please click on the link below

For the direct link to the manuscript, please click here

If you would like to learn more about WPI's research program, please go to


Friday, February 1, 2013

My letter to the FDA regarding Ampligen

Dear Sir or Madam:
As someone who has lived with ME for 25 years this January, I ask you to please approve Ampligen for a subset of severely disabled patients. My experience with Ampligen was challenging, but worth it. Unfortunately, because I had to pay for the cost of receiving this drug and I suffered from other neurological complications, I was not able to continue on Ampligen. Nevertheless, I am extremely grateful that I had the chance to benefit from the many postive effects of Ampligen for over seven years. After several surgeries to remove non-essential organs my doctor felt Ampligen was my only hope, if we were going to stop the destructive disease progression.
By the age of 21, I was wheelchair-bound and unable to feed, bathe or clothe myself most days because of my chronic disease. I was bedridden and cognitively disabled - unable to read without being really confused. I had to have someone take care of me 24 hours a day, 7 days a week until I began taking Ampligen. It took months before I began to respond but once I started to get well again the improvements in my health were life changing. I was able to take care of my most basic needs once more and to begin a therapeutic program of chair yoga, and get to the dinner table most evenings. Within a year, I was driving to and from the grocery store and using a cart to get around. My most severe symptoms of sinus node sickness and gastro paresis improved significantly, so much so, that I no longer had to consider the pacemakers that specialists had recommended. Within two years, I enrolled in a yoga program to educate myself about therapeutic yoga to help others. In my third year, I began teaching gentle yoga two days a week. I was able to travel on an airplane for the first time and to see friends and family I hadn't seen in years. I made a decision to go off of Ampligen for an extended holiday to see if I could stay in remission without the drug and sadly experienced a total relapse of my symptoms. Once I began again, the drug worked quicker the second time around. I began to see improvement cognitively and physically within months.
As with many drugs, there were some downfalls to being on Ampligen. I had to be infused two times a week at a location one hour away from where I lived. It was a process - getting IV fluids days before my infusions. The intial side effects were difficult to handle at first, but I was blessed to have a doctor who was willing to help me with them. Even with these disadvantages, Ampligen gave me a glimpse of what my life could be without severe ME. I believe that Ampligen treatments may have saved my life.
Ampligen is not a cure, but for those who respond to its healing effects it is a life line. These patients deserve a chance at some quality of life. Like me, they have experienced profound improvements in their cognitive and physical abilities. Ampligen can be a life saving drug for others who suffer from severe ME/CFS.
Thank you for allowing me to share my story with you. I hope for the sake of many patients, you will consider approving Ampligen for severely ill patients while other more accessible drugs are being developed.

Former Ampligen Patient