A New Direction: Coiling for Lyme

Going over to the Dark ... er, Lunatic Fringe Side.

By now you have probably heard about the collapse of XMRV research by Judy Mikovits and the Whittemore Peterson Institute. If you haven't, details of the whole sordid story are available at X Rx Blog and Phoenix Rising, among many other sources.

The news of this disaster came at a very bad time for me. In the fall of 2009, samples of my blood submitted to IgeneX came back positive for Lyme disease and Bartonella. I opted to try an acupuncture and herbal treatment regime with Tim Scott.

Through the winter of '09-10, I had some improvement, but was still far from well. In the spring, after stopping the homepathic and acupuncture treatments, I had a short period of feeling much better, but then I deteriorated dramatically. My symptoms escalated, and a new symptom, severe dizziness, emerged.

By late summer 2010 I was no longer able to even do my own grocery shopping. The very limited social activities I'd been able to engage in (mainly occasional lunches with friends) came to an end. As you can imagine, these new developments were very discouraging. I'd been sick since late 1994, but I had always believed on some level that I would get well, that somehow or other I would find a way to recover. This new major progression of the illness destroyed that belief.

Cause of Death

CFS patients who died of cancer, heart failure, or suicide had much shorter lifespans than the general population, according to a 2004 study:

Average age of cancer deaths:

• ME/CFS – 47.8 years
• Avg population – 72.0 years
• Difference – 24.2 years

Average age of heart failure deaths:

• ME/CFS – 58.7 years
• Avg population – 83.1 years
• Difference – 24.4 years

Average age of suicide deaths:

• ME/CFS – 39.5 years
• Avg population – 48.0 years
• Difference – 8.5 years

The dramatic results of this preliminary study begs the question: why hasn't more research been done in this area?

Imagine the impact on the potential funding for research into ME/CFIDS/XMRV if a more comprehensive study produced the same results - and got the kind of coverage in the media that the WPI XMRV study did.

More information:

• Causes of Death Among Patients With Chronic Fatigue Syndrome, Jason et al - The original study. Also here. See also Dr. Jason's web site.
• Causes of Death among Patients with Chronic Fatigue Syndrome - A Dig Deep News blog post. Summary and links.
• Cause of Death among Patients with Chronic Fatigue Syndrome - Phoenix Rising forum thread.