Exposure in Wall Street Journal

The Wall Street Journal published another article by reporter Amy Dockser-Marcus on March 12th 2011.
Here it is: http://online.wsj.com/article/SB10001424052748704008704575639193973468402.html

Here is the short version:

"Patients, Scientists Clash on Fatigue

Patients say scientists haven't worked hard enough to find the cause of chronic fatigue syndrome. Scientists say some patient advocacy slows research."

Ok Amy... Slow down a little bit... 

Some patients have been ill for 30 years. 30 years is a long long time. Some 10 years. 10 years is still a long time to be sick with no health care whatsoever, problems with disability insurance (or worse, denial of said insurance) and being literally out of society. 

As everyone knows, a paper published in Science has linked ME/CFS to a retrovirus called XMRV. It has created  lots of  controversy, including the very quick words of Mr Bill Reeves who was at the head of the CDC, who said that the CDC would check for the claim of the retrovirus, but chances are they wouldn't find it. Indeed, they didn't find the virus anywhere, in their tired cohort or in their controls. Many other scientists also quickly published their paper with no luck in finding the retrovirus, using only one lab technique and not using the ones that were specified in the Science paper. 

Since then, there has been the first XMRV conference and many retrovirology conferences failed to invite Dr Mikovits to speak, including the recent CROI. 

Part of the history of ME/CFS proves quite similar to many scientists trying to shush the XMRV story. Dr Elaine De Freitas then scientist at Wistar, found a retrovirus association with ME/CFS and the CDC and other scientists failed her, and failed to reproduce her study. She got her funding to research cut off and while she was preparing to prove this retrovirus  she was involved in a car accident and got disabled with complications of this car accident. This was in 1991. No one even tried to find it. The topic was just dropped. 

So in 2011, here we are, patients whose only voice is the internet, when we are well enough to get there. Patients have joined forces, somehow, in spreading the message that good science needs to prevail, and that money needs to be spend in elucidating the cause of ME/CFS. 

ME/CFS is an orphan disease, no medical specialty is taking the illness under their wings. The funding has been minimal. Doctors have not learnt about the disease at school, or they have learnt that the patients' complaints are vague and perhaps of psychiatric origin. So over the years, patients have given up going to the doctor. Scientists have been told that researching ME/CFS was a career killer. So they turned towards HIV/AIDS research, perhaps cancer, safer options. 

The CDC ensured that us, the patients would not get biomedical testing by posting on their website not to test unless it was to rule out other diseases. The CDC also seem to take pride in their own research, and post the best of the best, link of CFS with childhood trauma here. 

Scientists, in this case, in Amy's paper, Stuart LeGrice, feel that patients are interfering with the research, and should leave scientists alone. Hmmm... Honestly, patients are quite worried that another extreme denial will happen and that good science will be buried to the advantage of organizations that want to save money, disability and health insurance. Governments. For them, status quo is good. And certainly unveiling lies, deceit, omission, mistakes, and gross incompetence would be embarrassing and very very costly. 

So what is the solution? 

Collaboration. Trust needs to happen. Patients need to be heard and should be included in government committees, conference planning and even (and especially) within the  CDC. Patients are the experts in their own disease. They should be considered as colleagues by researchers and physicians. 

Patients have all the time in the world and have researched their own disease and associated science. Dismissing this knowledge and the patients themselves delays research and finding treatments for us patients. 

I will close with a quote from Dr Jose Montoya, a prominent infectious disease doctor based out of Stanford University, who said this at his recent talk at the university: 

"Hopefully one day, my dream is that our medical community will produce a formal apology to the patients for not having believed them all these years that they were facing a real illness."

You can watch it here: