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?
indeed, and how long do we in the UK have to wait for our apology? This article puts it all in a nutshell really. Tony, would it be worth sending it to any half-decent media outlets you can think of, eg Channel 4 news and the Independent? Time was, 1987 I think, that the Observer did a brilliant piece which ultimately led to the establishing of AFME, but as we know, they have severely let us down in their recent reporting.
The lack of information in the British press regarding the drug trials with Rituximab is in stark contrast to the coverage of any successful clinical trials for other diseases. When I first became ill, my original diagnosis was “possible MS”. Over those first few years, I regularly scoured the MS sites on the internet for any information that I thought may help me. I rarely came across anything about potential new drug treatments on these sites, that was news to me. I had already come across the information covered comprehensively in my daily newspaper.
The UK media seems to prefer running stories about miraculous recoveries from ME/CFS by people who have “battled their way back to health” by taking up salsa classes / practising Ukranian breathing techniques / embarking on a regime of marathon running… and other such nonsense.
Are we to assume the British Press have contacted the SMC, which has told them all the story isn’t worth bothering about?
Reporters and psychologists are paid by insurance agencies to downplay illness! I have always had a diificult time ever being convinced XMRV was a cause after seeing documents to the cause being a piece of the HIV virus envelope made in a U.S. military lab and sold to Suddam Hussein…If any of you think that governments do not create diseases and position people to downplay a situation then gives your heads a good shake because it is all part of their biological warfare programs! How many troops went to the Gulf wars and also how many did not go but have the same illnesses but yet these same governments label them different names but they are exact illnesses in fact the reason Klimas can now expand on her research is because of Gulf War Illness grants she gets and can use this money to work on cfs…They will now do everything in their power to knock the Minister of Health in Norway for her words and she will now have problems as a result. Why was over $10 million u.s. dollars taken from cfs funding and the reason for that is they do not want the truth to be told and the last thing they want is answers found because they know to well that this is all part of a massive cover-up they do not want revealed. They will stop any major breaks in medicines or research because they will do anything to stop the truth coming forward. They did the same to poor black people in the southern United States when they infected them with syphlis and for years were only interested in their medical records and dead bodies to study. Do not be lost all of you thinking that any of these clowns will help you because they have no intention of doing so and any researcher who gets close to anything worthwhile will be brought to their knees and condemned to ridicule. I have seen evidence given to me in black and white where a piece of the aids virus was used as a biological weapon and was 45% of the hiv virus envelope…Do not believe also what you read in newspapers because 99% of it is all part of their b.s. and just like in politics absolutely nothing happens unless it is planned… I do not believe in XMRV hype but a piece of HIV…They better pray i die and never get well….
If none of you believe me then ask Dr. Garth Nicolson if Aidan Walsh is telling the truth about 45% of the hiv virus envelope with other pieces of bacterias/toxins attached to it that were not something that naturally occurs and was made in a u.s. military lab…I may come across to a lot of you as always a change of my positions on what i think could be a cause but i never ever really got away from the facts that the pieces attached were to do with bacterias like c. pneumonaie and mycoplasmas and so forth and so forth all part of their biological weapons programs…To also think that the origins of HIV came directly from a monkey and believe that well there is not more for me to say and to even consider your child for a vaccine from these criminals remember Aidan Walsh warned you in advance to give your heads a good shake…Do not believe the media or these psychobabblers because they are in these positions like puppets on a string…They will continue to downplay the filth they have caused and what best place to do that is on British soil…Have any of you yet realized who controls the media? Remember this in life ‘nothing happens unless it is planned’