“What is originality? To see something that has no name as yet and cannot be mentioned though it stares us all in the face. The way men are, it takes a name to make something visible to them.” Frederich Nietzsche
I read with interest Heidi Bauer’s unearthing of the 1992 conference program on CFS connections with virus and retrovirus. Let me see – 1992 - that was 19 years ago. Perhaps the 2011 IACFS conference, which has extended the deadlines for proposals for their September meeting, can save themselves some time and money and just resuscitate this 1992 conference (or maybe just find the video recording of it). I am sure they can find stand-ins or actors for those who have died.
The media story surrounding ME/CFS has been unfocused and widely distorted since the beginning – since the early 1980’s and earlier. One could ask oneself why? One could write a story or a book about this. As a matter of fact Hillary Johnson has written a book about it, and it is called Osler’s Web. Hillary did such a fine job with this book that this story does not need to be told again. However, the book does need to be read, and its central points need to be repeated. (As Stravinsky said, “Some things are worth repeating.”) But the whole past does not need to be retold in the press. However, all journalists “go there”- in one form or another - and get mixed up in the “shell games” that have been going on for years. It is surprising that semi-intelligent people get caught in this trap.
What we need today, in this day and age, is some truthful journalism. We need someone with both a head and a heart. We need a writer who can follow a storyline that emphasizes clarity, and one that stays away from the shell games and diversions of the past. The story is sitting right there in clear view, and it is waiting to be picked up and told. How long are we going to have to wait?
Time after time the same sorry scattered interpretations are rolled out - and they are all distortions of the truth. Is it possible for the truth to be told? Is it possible that a journalist can shed some clear light on this illness? I am not sure. No one seems to have the will, heart or the brains to do this.
This is a story with only one side. Or put it this way, the other side of the story – the shit side – has been told so often that it has to be left out. Please, spare us; no more phony advertising. Continuing the reporting of “both sides” of this story is to participate in untruths. This deception has been in the air we breathe for 25 years. What we need is a writer who has a good air filter – preferably a Hepa brand. We need someone who can filter out the shit.
It is said that journalist have their own mind and their own ideas. While this is a questionable notion, they do have their own agenda. We still have to ask ourselves, what happens if they fall in a dark and muddy pit? Are we to not notice? Are we to applaud them? Is this journalism?
A journalist needs to have a clear idea of the script. Without this, nothing makes any sense - everything wanders over a vast terrain, unmarked by items of significance. It is like a Beckett play.
Someone intelligent has to thread the scattered beads on a string.
The Story – the disease definition.
There is no strict order or hierarchy in the telling of the story - except that there must be a fixed starting point. First and foremost, a clear definition of the illness must be presented. This definition needs to be given once, and then repeated with every article on the illness. This disease definition cannot be left behind, and it has to be pounded home. The essential core outlines of the disease need to be articulated over and over.
This disease definition needs to lean completely on the 2003 Canadian Consensus Criteria. The success with which the CCC clearly identifies this patient population needs to be pushed. Weight needs to be placed on the neuro-cognitive, neuro-immune aspect of this illness. Fatigue has to be removed as “the central symptom”. While fatigue is significant, many other chronic illnesses have fatigue. Heavy emphasis has to be placed on “hallmark symptoms” of post-exertional malaise (PEM) (which needs to be defined for the reader) - orthostatic intolerance (which also needs to be defined for the reader) – viral symptoms (which readers are familiar with and can relate to) and neurological symptoms. Using the CCC, ME/CFS can be separated from idiopathic fatigue and major depressive disorder.
On this issue of disease definition the knowledgeable person has to defer to the studies and writings of Dr. Leonard Jason. His CAA video can be seen here. There are also several of his lectures available on DVDfrom InvestinME. In his lectures Jason advances a significant line of questioning: if you ask a ME/CFS patient what they want to do when they get well, they will give you a long list of things. If you ask the same question to a person with major depressive disorder, the question will elicit little or no response. Major depressive disorder can and should be carefully separated from ME/CFS, and the tools are available to do this.
Journalists have repeatedly failed to clarify these issues. To them, it is all “up in the air”. They present these important items as a matter of dispute, where it is really a matter of fact. One might ask, why can’t they present this illness as it exists? What or who ties their hands? This narrowly defined neuro-immune illness needs to be presented as a serious disease, one that destroys lives and kills people. It is a virally induced acquired immune deficiency. As Hillary Johnson announced in 1996: CFS is a virus that attacks the brain. It has to be put in a class with ALS, MS, Parkinson’s, Lupus and AIDS. All of these illnesses are difficult and serious diseases, and ME/CFS has to be listed among them.
If the journalist falters at this point, they should set down their pen, and do something else.
Subjects of interest:
A story line on ME/CFS should:
- accurately and truthfully examine the means of defining the patient population. The shell game has to stop so that research and treatment can go forward. This is essential.
- accurately and truthfully describe the patients themselves - and the seriousness of their illness. A story should focus on the severely ill patients, or what selected patients used to be and what they are now, or on the tremendous toll that this disease takes on caregivers.
- accurately and truthfully describe the mounting evidence that ME/CFS is an infectious illness.
- accurately and truthfully describe the evidence that this illness is immunological and neurologically driven.
- accurately and truthfully describe the existing diagnostics for this illness. Why does the CDC mostly list tests that are not indicated in this illness? Why does it recommend not to test for some of the treatable co-infections that are common in patients with this disease?
- accurately and truthfully describe the various aspects of treatment - both existing and the possibility of future treatments. Why isn’t there a treatment protocol from the CDC as there is with AIDS? Patients are not even being offered treatments for the infections that they currently have. Why is orthostatic intolerance, one of the most disabling symptoms of this disease, not being studied and treated aggressively?
- accurately and truthfully describe the research (or lack of such) into this illness.
- accurately and truthfully describe the lack of meaningful data on the illness and the consequence thereof.
Focusing on these elements, the storyline can inform and guide the reader on the real problems and possibilities in ME/CFS. Up to now we have coverage where the reader will reach the end of a long article and can draw no firm conclusion as to what is going on with this disease. We do not need more of these articles that appear to be deceptive. The reading public needs to be given an honest assessment of this illness - forgetting about all the incredible garbage and shell game nonsense that has gone on for 25 years. The disease does not need “human interest” stories that carry the storyline off into the ditch.
Other questions and points of interest
Why don't we even know the natural history of the disease? There are patients who have been sick for more than 30 years. Why has there been no longitudinal study of these patients, many of whom have received no treatment. Even in the infamous Tuskegee study of men infected with syphilis the men were followed so we could learn something from their lack of treatment. Why isn't ME/CFS considered to be a disease?
Where is the advocacy, or who is advocating? What happened to the CAA? If the CAA isn't advocating - and they've said they're a research institution now - who is? What should an advocacy group do?
Why is this disease being ignored above all other diseases - while people are getting sicker, and people are dying?
Is it time to access the Federal bioethics commission? Are the current CDC guidelines unethical - no diagnostic tests, no treatment for proven infections? Is this ethical?
Why isn't the WPI getting funding, and why isn’t their research being published?
What conflicts of interest exist in the NIH review committees and journal review procedures? How come there is so little funding in this illness? How come XMRV research funding has dried up?
Where's Congress? Why isn’t there a ME/CFS caucus?
The current trap and the catastrophe scenario
The current trap that journalists fall into is that this is an “all or nothing” battle over XMRV. Nothing, nothing could do a greater disservice than this approach. This means of reporting is apt to have major long-term consequences for those who suffer with this illness. XMRV, for better or worse, is a stand-in for concerted work towards trying to understand the inside of this illness – especially the link to a viral etiology. If and when it gets knocked out, what is going to be left? It will be a return to another 25 years of nothing. The press coverage is trying to set ME/CFS up for a fall. If it turns out that XMRV is not an important pathogen in ME/CFS, it should not be concluded that there is no cause of this disease or that it isn't infectious. There must be continued support for aggressive pursuit of research into what are the cause(s) of this disease.
Over the last year and a half there has been a furious attack on retroviral involvement with ME/CFS. The bottom line: this is less an attack on XMRV than an attack on the dynamic nature of research into this illness, especially the viral connection. Certainly scientists can be combative– and why not? There is a lot at stake and some of these issues are complex. But why such a continued and heightened hostility aimed at any research that sticks its head up? It is the dynamic nature of the research into this illness that is not tolerated. This is an important part of the story. Is it a personality issue - or is there something else at stake here?
To repeat: the struggle over XMRV is a struggle over a larger issue. XMRV is a screen. The larger issue revolves around the WPI's and others’ attempt to compile data on this illness, to find an etiology, and to search for treatments - elements that have always been "disallowed" in this illness. These facts are so painfully obvious as to not even need to be stated.
This disease has had two interpretations. There are those who do not believe that this disease exists, and there are those who are seriously ill with this illness. Can these two sides be reconciled? Can this story continue to be told as tweedle dee and tweedle dum? No, the storyline has to be changed to reflect reality. The storyline needs to be more about the disease and less about the journalist’s squishy needs at any given time. In other words the journalist has to start telling the truth.
What is the consequence of this “phony” reporting, this telling of a non-story storyline or one that is “two-sided” or “balanced?” (“Let’s be open and honest” - that great 1960’s line.) The consequence is that thousands of patients suffer in silence and disgrace for decades, marginalized, with no hope. The consequence is that very little money goes into research, and much of “the research” is on the wrong patient population. The real casualty is that there is no data - so no way for patients or doctors to make intelligent decisions about treatment.
This idea of promoting a data set that can be shared with others is the central point that draws the Whittemore Peterson Institute into the line of fire. This is a very big no-no. XMRV is only a screen that can be knocked back to keep further and potentially broader research occurring on this illness. Good journalistic reporting of a firm storyline could help clarify this. But will it? The need for obscurity, the need for vagueness, is so very profound, and it has been going on for a long time. Why is this situation being driven this way? What keeps it going?
Avoid the traps, avoid the ruses
Many people say that this illness is too difficult. This is a ruse. All infectious diseases are difficult until they are understood. This disease needs to be approached as being caused by an infectious agent or agents. The evidence is there. If it's not XMRV/MLV, keep looking. It occurs in clusters. Clusters of cases are either due to an infectious agent or agents, a toxic exposure or a combination of the two. Keep looking. Don't assume that it doesn't exist because you haven't found it yet. Keep looking. And don't declare the very sick patients "not really sick", so you don't have to help them or do the work of figuring out what the underlying problem is. Keep looking. Following a clear and honest storyline could help this. But so far it has not occurred.
Personally, I do not want to hear any more about how this disease is complicated and hard to understand. I see these patients sitting in a darkened room, walled up from life for years and years, neglected and abused by medical practice, and I am sick of the excuses. We need someone to cover this illness who has some guts. We need something that is better than the slop that is served up presently.
The press (and others, including virologists) have a field-day presenting the current (and past) interest in this devastating disease as nothing more than an all or nothing pitched battle that pits patients against researchers, researchers against doctors, patients against patients, and researchers against researchers. This has been going on for a long time now and seems endemic to the illness. For this illness to move forward, this particular brand of roiling attached to this illness has got to stop. It is not an accurate picture of this illness world. Instead, it is a fantasy/construct designed to further marginalize this illness. It is fundamentally abusive towards the patients with this illness. Why are so many professionals not interested in this illness? Have they all taken the "poison pill"? Why is there so much hostility directed towards these patients?
“Why live in the past?”
Max: “Who cares? Listen, live in the present, what are you worrying about? I mean, don’t forget that the earth is five thousand million years old at least. Who can afford to live in the past?”
Stick to the present, stick to the issues. Naturally, this story, this investigation will lead to the abuses of the past - but this is not the main story. The past is a cesspool and needs to be avoided in order to emphasize the more significant points of this illness. The storyline does not have to go into areas of abuse and neglect, although it will inevitably lead there, and people might have to go to jail for the crimes. This might not be safe territory for a journalist - as these Stalinist bureaucrats like to “take out” the accusers along with the accused.
Marcus Conant says that “the press is not your friend.” Presumably Dr. Conant believes that there are other ways to get the story out. His suggestion is that the press is not going to win or lose this battle, that they have their own agenda. Perhaps, as a million to one shot, a journalist can help move this illness’ awareness in a positive direction, especially now, when everything in research and treatment hangs in the balance. But it will take the emergence of a “special person”, someone who can see what is sitting right in front of us. Do I expect this to happen? No, I do not expect this to happen. Would it be nice if this did happen? Yes, it would be nice if this did happen.
If I were going to give advice to anyone writing about this illness, it would be this: try to restrain yourself from doing more damage to this damaged group of people. Do not do what you are currently doing. Don’t contribute to the negative “force field”. Further freezing out and isolating these patients, who are desperately ill with an immune-mediated shutdown, is cruel and suspect - all motives are suspect. Keep it simple. Look at the patients. Look at the caregivers. Look at the researchers. Look at the clinicians. Stay away from the other side, stay away from the “dark side” - and those with the black haloes. There is a story here, but it needs the right person to ferret it out.