From the blog run by the ‘CFS Patient Advocate', 24 October 2011
Recents events have reminded me of Dr. Marcus Conant's admonition “Do not trust the press. They are not your friends”. According to Dr. Conant, a veteran (and great, selfless hero) of the wars on AIDS, the press has their own agenda – and they do not have our interests in mind.
At this moment we have to ask ourselves a question. Why has there been so little mainstream news coverage of the Norwegian rituximab study and ME? In the last few days, the Norwegian rituximab study with ME is seeping very slowly into the mainstream. But it is small potatoes compared to the flood of crap vomited worldwide in the supposed demise of a retroviral involvement in ME. (Incidentally this retroviral story is not over. Dr Mikovits and others will resurface and continue their research into HGRVs. And it is worth remembering that Dr. Mikovits was early on in Norway trying to find out about these cancer scientists and Rituximab. Dr. Mikovits has always been open to suggestion.)
It is one thing for the press to ignore a story. It is quite another to frame out a story incorrectly – especially if it mascarades in the same phony guise that ME has been characterized for the last 25 years. This becomes tiresome – and disingenous. These hapless press stories of the past two years lead nowhere. They can just be heaped up with all the other ME dodges of the past.
It is not true that any press is better than no press. A truthful story line is important. I wrote a post on this subject some months ago called The Story Line.
In the last year, four mainstream journalists – Amy Marcus, David Tuller, Trine Tsouderos, and Michelle Fay Cortez – have decided to get involved with the retroviral association to ME story – each for “their own reasons”. All of them have developed the sometimes habit of writing about ME. Each goes in a different direction, each with no cohesion of story. Why is this so, Marvin Macy? For the rest of us the reason for these disconnects is especially unclear right now. The neglect in covering the Rituximab study with ME calls into question all these journalist previous motivations. It makes us suspect. What was their agenda? What were they really interested in?
In the last few years something quite different (than what is depicted in the press) has been going on in the research and treatment world of ME. In the last few months, amidst the worldwide , hyperbolic “take out” of retroviral research into ME, various other researchers have been plugging along – and expanding their interests. These include Dr. Jose Montoya at Stanford (in collaboration with Dr. Ian Lipkin at Columbia), the newly announced Chronic Fatigue Initiative at Harvard, Columbia (again Lipkin) and Duke, financed by the Hutchins Foundation, the impending opening of a treatment and research center at Mount Sinai in NY with Dr. Derek Enlander as one of the clinicians, the Simmaron research group of Dr. Daniel Peterson and associates in alliance with Bond University in Australia – to name just a few. To this, we might mention the ongoing research of Dr. John Chia into enteroviral involvement in ME, the disciplined, longstanding work of Dr. Nancy Klimas in Miami, the Lights in Utah, Dr. A. Martin Lerner in MI, and Dr. Kenny de Meirleir in Belgium. And we do not want to forget the WPI, which will reconstitute itself and make important additional contributions. This list goes on, and apologies to those left off. It is an exciting time. A great consolidation is taking place. Does anyone get the idea that the press is trying to tell this story – to explain or sell this consolidation? In no instance are they “on this story”. Collectively they are doing a terrible job. What is their problem?
And now comes the Rituximab study – seemingly from out of the blue. This is a major story in ME, perhaps the major story. The picture is best expressed by Dr. David Bell in this short youtube clip. Meanwhile, where are our “friends” in the press? Are we to accept and believe the lame excuse that mainstream journals do not cover small phase II trials? Are you kidding me? I would surmise that Dr. Bell would trade in all the “human interest” stories on ME for one decent accounting of the current research into this illness – especially regarding this Rituximab study.
Over the years there has been so little consolidated research in ME. One of the big hopes is that something will “slop over” from another drug study in another disease. This appears to be what has happened here – pure serendipity (combined with the observations of two very insightful cancer researchers). Perhaps we can expect more of this in the future? Let us hope so. In the meantime, this Fluge/Mella study, and many other items, convince us that certain scientists have fantastic minds for making unexpected connections. Where is the comparable situation in journalism? Who has the guts to connect the dots with this story?
We can all make up our excuses why this trial means nothing – it is “too early”, it is “too small”, the researchers are Norwegians, the drug is really dangerous, we don't know the mechanism, it is better to wait for more trials, how could ME be an autoimmune disease – the list of crap goes on and on. It is worth mentioning again, at this point, Dr. Bell's startling statement: “I have not seen results like this in any medical study in the twenty five years I have been in the field. These are extraordinary results”.
Meanwhile Fluge and Mella move on to larger and more specific trials. A new trial will test Rituximab on four of the most severely ill ME patients. (If you need to be educated on this patient group, watch the powerful film “Voices from the Shadows”.) These two Norwegian researchers have been backed by the Kavli foundation to find a blood test marker for ME. We can expect this research to continue and grow, most likely extending into Sweden. Several clinicians in the United States have their eye on trials with Rituximab.
The story of ME, in all its sordid reality, lies there at our feet, ready to be told. Who will tell it? What journalist has the courage to tell it? There is no longer any uncertainty. ME is a nasty and dangerous disease. The patients with ME and their caregivers have been abused for years. This study tells us that this serious disease may need a serious drug. ME is most likely viral in origin involving various immune abnormalities. It is very possibly communicable. This Rituximab study opens additional doors to research. The urgency is now. Too many patients have already gone down the tubes with astonishing neglect.
Even “the end of the story” is provided now (for journalists). They no longer have to speculate and fall back on their dumb ideas. Consider the amazing admission of the Norwegian Directorate of Health in the wake of the published study on Rituximab.
“I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that.”
“Such a public apology from a governmental health agency has never occured before.”
How long do we, in the United States, have to wait to our story to be told, for our apology?