I was delighted to see the new research suggesting a possible viral cause in a significant subset of ME/CFS patients.
The big news is that 82% of 165 patients had evidence of chronic enterovirus infection using gastric (stomach) biopsy, compared with only 20% of non-patients. The research, with its statistically significant numbers, was impressive enough to be published in the September issue of the respected Journal of Clinical Pathology.
Enteroviruses are the second most common viral infection in humans next to the common cold, and two notable enteroviruses are polio virus and Coxsackievirus. Infection usually causes asymptomatic gastric and respiratory infection, and the virus has previously been isolated from ME/CFS brain, muscle, and heart tissue.
It is too early to jump on the cause and effect bandwagon, and I am sure many of you remember earlier “breakthroughs” including EBV, CMV, retrovirus, stealth virus, spuma virus, HHV-6 and HHV-7. Nevertheless, it was determined that the virus was causing a chronic, inflammatory condition in the study participants, and it is pretty hard not to be impressed with a positive rate of 82%. Could we finally have a smoking gun?
I do not mean to suggest that the viruses above do not play at least some role in many cases of ME/CFS. In fact I am convinced that HHV-6A plays a major part in a good percentage of cases of ME/CFS. Please visit the website of the respected Human Herpesvirus-6 (HHV-6) Foundation for compelling evidence – http://www.hhv-6foundation.org
The take away? Patients will have a reason for hope if it is determined that this enterovirus is indeed a cause of ME/CFS. I find this research impressive and worthy of optimism. ProHealth will keep you informed as the research unfolds.
On the Name Change Effort
A million thanks to those of you who have written letters to the Campaign for a Fair Name to express your thoughts about the ‘Chronic Fatigue Syndrome’ name change effort. Several patients said that ME could only stand for ‘Myalgic Encephalomyelitis’, while other patients said that ME should only mean ‘Myalgic Encephalopathy’.
A few patients in England and Australia shared their concern that the United States’ definition of CFS was not as strict as the definition of Myalgic Encephalomyelitis (ME) in their country – and therefore the U.S. name should not be changed to anything that includes ‘ME’. Their conclusion may be sound, though I doubt that many U.S. patients would share their view. It is here, after all, that ‘Chronic Fatigue Syndrome’ damages patients every minute of every day.
Some patients shared that ‘Chronic Fatigue Syndrome’ is just fine as is, and wondered what all the fuss was about. Still others felt that ME was the perfect acronym, because it stands for Myalgic Encephalopathy and Myalgic Encephalomyelitis.
The important thing is that people are sharing their thoughts. Patients need to be heard on this, and now is the time. This is a historic event for U.S. patients, as the name ‘Chronic Fatigue Syndrome’ is on its way out. Make sure you have your voice heard.
Keeping the hope alive,
ME/CFS patient, ProHealth founder
PS. I want to announce two more new additions this week to the New Name Implementation Committee (NNIC). You’ll enjoy reading the profiles of ME/CFS/FM physician Lucinda Bateman, MD, and dedicated patient advocate Yvonne Keeny.