Thursday, February 24, 2011

New Study Demonstrates Unique Proteins in Spinal Fluid of ME/CFS and Chronic Lyme Sufferers

There are a lot of good things occurring in the ME/CFS world although it might not seem like it with the recent negative studies of xmrv (all of which had problems with subject selection and/or methodology) and the recent PACE study that indicated all we needed for treatment is cognitive behavioral therapy and graded exercise therapy. As if we could 'think' or 'exercise' our way to health. Prescribing such treatments is careless and irresponsible. The PACE study is also full of problems that I won't even bother going into.

So having the following study just released yesterday and featured on CBS News last night with Katie Couric is good news:,_sure,_but_is_it_from_Lyme_disease_or_chronic_fatigue%3F
These proteins found in the spinal fluid of ME/CFS and Chronic Lyme patients just might provide biomarkers to help diagnose this disease. They might also point a way towards treatment. This isn't the first time they have found proteins in the spinal fluid of ME/CFS patients but hopefully this time they will continue to research just what might cause these complement proteins to increase (such as XMRV and/or opportunistic infections).

The research reinforces the fact that this disease affects the central nervous system.

It also underscores the fact that this disease is not a psychosomatic disease as many would want us to believe.

I truly believe the tide has shifted regarding our disease. The Whittemore Peterson Institute's discovery of XMRV has paved the way for the tide to shift.

Other good news is that Stanford is conducting a large scale study of ME/CFS researching what pathogens are active in our bodies.

They have also launched The Stanford Chronic Fatigue Initiative website. While I don't agree with the name (putting the word 'fatigue' next to anything to do with this disease is never a good thing) the website as well as the direction that Stanford is heading is a good thing:

Gordon Medical Associates will be hosting Dr. Burrascano who is going to be giving a 'cutting edge' talk on healing from lyme disease on 3/21 in Santa Rosa, CA:

Dr. Montoya will be giving a free talk on ME/CFS on 3/3 at Stanford (I participated in the Stanford study and found out about this there):

Jose Montoya, M.D., associate professor of medicine, infectious diseases, is scheduled to provide information on recent research regarding diagnosis and treatment and the possible CFS-infection connection, 7 p.m. March 3 at the Arrillaga Alumni Center on the Stanford campus. Sponsored by Stanford Health Library, the talk is free and open to the public. Call 498-7826 to register.

There is more good news but my brain is struggling due to starting Rifampin this week to treat Bartonella so I'll stop here.


Judy said...

Truly interesting good news here.

Did that PACE study say that "all" we needed was therapy and exercise?

All I know is that both of those things contribute greatly to my improvement. I've worked so damn hard for it. I blog about it a lot.


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