Tuesday, April 5, 2011

The Story Line

“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.

The consequence:

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.


  1. Dr. King is your guy.

  2. Are you reading this Amy Dockser Marcus ..... because it seems to be aimed directly at you!

  3. Everybody here knows I'm a journalist and I know what I'm about to say won't be popular, but folks, you have the finger pointed in the wrong direction. The CFS community doesn't have a single voice. The voice that does come out is mostly disjointed, hostile and accusing. Every group needs a single voice with a single message. They need to be armed with facts and charts and a PLAN. The insurance companies have that voice -- can anyone say "contamination?" Brilliantly orchestrated all those studies in one issue of Retrovirology with perfectly placed press releases. Can't you see that was orchestrated? That's what you are competing with --smooth talking, completely prepared and persuasive hired guns, who attempt to make the patients seem like bitter, loose cannons. And it's not hard to do that based on the behavior I've seen since getting involved. I tried to help and was attacked so viciously on one forum that I would have to be a masocist to go back. I was told that I believed CFS patients were my "whores" and "slaves." The F word was swung at me like a bat. Check out the post. How do you expect journalists or anyone else to listen with that kind of behavior? And it's not just one person. -- So stepping back and looking at the big picture, what does CFS need? It needs an advocacy association that speaks with one voice and orchestrates and channels the significant talents of this patient group. The CAA is NOT doing that job. For one thing, CAA cannot lobby affectively for CFS based in North Carolina!!!! Period. Every organization worth its salt is based in D.C. and is on the Hill DAY IN AND DAY OUT. Networking, landing meetings with influencial people, persuading Congressional staffers, pestering, planning, manuevering DAY IN AND DAY OUT. Do you realize how much would be accomplished with that going on? A morning meeting with the NIH, lunch with a Congressional staffer, and afternoon planning session and then a cocktail party smoozing Senators. DAY IN AND DAY OUT!! The next day a breakfast with a reporter slipping them a story idea then a meeting with visiting CDC officials. EVERY DAY. Reporters can't be expected to know EVERYTHING. They have to be shown where the story is. They are people like everyone else and insulting them with comments at the bottom of an article just isn't helpful. A negative story comes out and the advocacy group swoops in with a meeting with the editorial staff. Better yet, when the reporter calls for comment on the negative article, the advocacy group, heads them off at the pass, gives them a better story, or at least provides a sane and intelligent response. I know all this won't make me popular and I don't expect you to believe me -- I've only done this for a living for 20 years -- but I digress. These are the facts of the world we live in. Moneyed interests have a big stake in this and CFS patients wildly swinging won't beat thems. The definition of insantity is doing the same thing over and over again and expecting a different result. I'm not all talk. I wrote this book when my own company refused to believe what I told them about CFS and its contagious nature. They blew me off. I have plenty of ideas on how to approach this differently and would be happy with to work with anyone who doesn't swear at me.

  4. www.anida.co when it's launched I believe in them . I believe in Annette Whittemore and her message. She gives a really great message . I think they can do a great job even though they are in Reno because of people they know .

  5. I think Chris points his finger exactly in the right direction. No patient group as large as this one will ever speak with "one voice". That's just a myth!

    I agree with every little thing Chris said in this post. Now how to get him a writing gig for one of the major newspapers?

    Who can lobby for our cause "every day" with the journalists and editors, like Caroline suggests? They obviously can't or aren't willing to do it on their own. We have no representatives, but we desperately need them!

  6. Spot on, Chris. "Investigative Journalism" should require some element of investigation. There is a huge story here...many stories, actually. It's time to stop relying on the old archives.

  7. This is a great post, Chris!

    Caroline, I certainly agree we need an effective patient organization to be lobbying and dealing with the media on a constant basis. I think most people agree with that.

  8. I think what Patient Advocate says is true: "What we need today, in this day and age, is some truthful journalism." No doubt we also need good advocacy, as Caroline has pointed out. In my opinion, we need both.

    Patricia Carter

  9. I think we need Caroline and the Patient Advocate to write that article together. At least the information would be truthful and comes from the compassionate understanding of a family caretaker. A very smart caretaker who can write and get the message out.If Caroline could help, that would be wonderful. Any journalist that is honest and willing to help, please stand up!

    Getting an advocate to be stationed in Washington would be wonderful, how do we find one and how do we afford that person? It would be expensive, we need an ambassador for this disease. Would this be better then the ads that have gone out? We need an organization that would support all of this. Again how do we fund this, many of us don't work.

    Do we have one voice that responds to written articles in the paper so that we look cohesive? So many advocates want us to respond to the articles to keep numbers up, is this not the way to go.

    Where do we as a group focus?

    As usual another excellent article.

    Lynn Twohey

  10. @ Caroline T. Anderson:

    I agree with nearly everything you have said above.

    Patients have acted like an angry mob; patients have not presented a "unified" social statement which is Media savvy; patients have blamed the messenger, i.e. journalists.

    Instead of presenting facts and figures in a cordial debating style with reasonable and constructive responses to articles; there has been bitter dialogue portrayal amongst patients along with attacking verbiage written in incoherent styles which do not bode well with public opinion.

    This atmosphere has led to a win-loose situation and wheels are now spinning: i.e. no notable political, social or financial gains are being made in this field.

    The flip side of this coin, is that patients have been deliberately ignored for 40+ years; ignored and humiliated by our medical communities, shunned by familial systems and overlooked and suppressed in general. Patients have thus turned to grassroots advocacy and are on the verge of activism.

    The one thing I do not agree with in your words above, is your analogy of what is needed as far as methodology of presence on "The Hill".

    YES, we need presence and representation on the Hill. YES, this is coming soon. A new 501C4 is recently being launched for this exact reason.

    However, Lunches with Congressional Aids, Breakfasts with Constituents, Inner Circle Dinners, Meetings with Influential Players and "smoozing" with certain circles will not work in this case.

    We are dealing with not only a historical and documented overlooked scientific issue; but also a political debacle of the highest element which rivals any poltical intrigue publically known in the past 5o+ years.

    The real Story of this Health Issue lies in the Economic, Political and Scientific arenas which are accessed through closed doors; not at high level functions or the powder rooms at such events.

    The Real story here is that we have a group of infectious diseases which need funding for Research, Diagnosing, Treatment and Prevention NOW. Outbreaks continue and our window of opportunity for adressing these epidemics is narrowing.

    Political Intrigue aside, the main focus is to get patients the medical care they deserve. To stop Pandemics.

    All The Best,
    Julia Rachel

  11. Good points. The current advocacy organizations (CAA) the patients have are not effective.

    The competing special interests have such a strangle hold on government, and the media it is paralyzing. The problems in government, media, and corporations, are not limited to just CFS. I'm sure many other disease face the same barrier.

    I think it would help to have some advocacy group to help convince the fuzzy bunnies, we call congress, to help our cause. However another avenue that may be just as effective, if not more effective for well-meaning journalists like patient advocate and Caroline Anderson would be to help write donation requests for funding from rich individuals. Help convey the need for private funds to get unbiased research going that is not influenced by special interests. Bypass the whole dang spider web that surrounds washington.

    There is one guy who donated $10 million dollars to help a college fund treatments for autism. I would like to see the WPI get a $10 million dollar donation. Mark Zuckerberg donated $100 million to a college he went to. Maybe he can spare another $100 million for neuroimmune disease?

  12. I really like the idea of going to a rich person and bypassing everyone. That basically is what Whittemore Peterson did and look at the progress they've made.

  13. To Caroline:

    To a large extent I agree with you but you have just admitted that investigative journalism is dead. Is there such a profession any more? Yes, "journalists" prefer information being fed to them on a silver platter with chart "porn" and cohesive media packets. But what does that mean for your profession?

    We need to play the game but it is a lose to society that journalists no longer have the ability to ask probing questions and get to the "bottom" of the murk and deception.

  14. Thanks, Chris.

    We need to educate journalists with background information so they understand how politicized our disease it.

    I also agree with Caroline that there needs to be a DC-based presence to influence Congress on a daily basis. Congress hold the purse strings for the federal agencies that have harmed us. Congress is not aware of the depth of the deception. Lobbying does not mean formal breakfasts and inner circle dinners. It's often done literally in the hallways and anywhere else an influential person can be found.

    I was a lobbyist. It works.

  15. Thanks Chris.
    What I would like to see from now on are articles that discuss what we DO know about ME/CFS and not about its controversial past (and yes I am aware that it is still controversial in the present but only by certain uninformed and/or ignorant medical personnel).Perhaps if we in the community and journalists covering the stories stopped mentioning the controversies about the cause, others would follow.I would like there to be NO mention that some people in the medical community still don't believe it is a real disease. Each time an article about ME/CFS mentions anything about it being considered psychiatric, even if by only a few people, I cringe. It tends to reinforce that idea in those certain people and to suggest it as a possibility to people who know nothing about the illness. When I talk to friends and neighbors about my illness I only mention all the known abnormalities associated with it. They have no idea that there is any controversy about its cause and I certainly don't want them to get the idea that it could be psychosomatic. Most articles about MS don't mention its early history as a psychosomatic disease: it is in the past. Let's treat ME/CFS like this and talk about it as a REAL disease with many known physiological/biochemical abnormalities. Or at the very least, don't mention any words like psychiatric, psychosomatic, lazy, malingerers etc. in the title of an article or anywhere near the beginning of the article. Bury it somewhere later in the article. Many people just read headlines or skim the first paragraph.

  16. I really wish there was such a thing as a true investigative journalist, one who does not run from a hard story and can take the knocks that come with it.
    I'm really tired of hearing about how badly behaved the patient groups are. It's very easy to criticise from the outside, please walk in my shoes for a day before you have the right to critisise me.
    In most cases it is easy for the patients to advocate for themselves, but with ME there is a huge difference. We have neither the energy nor the cognitive skills needed to do this. Should we not be a society of the strong take care of the weak? We are humans, please have the compassion and respect to treat us as such.

  17. Stupendous. Nothing more to say than that. Oh, also: Reposted. -Jocelyn

  18. Preach it brother, Preach it!

  19. Hi PA and fellows,

    I think one problem is we don't have one public document that we can shove in the government's face, or hand to a journalist and say:

    "HERE--this is what we want!"

    There is lot of consensus on some very very vital points. The internet and forums sometimes obscures that. We need a common advocacy charter, a declaration of independence from this disease. Which describes concisely and precisely what we want and how we want it.

    This is a project I was setting about to start on but my computer crashed and i myself relapsed.

    But imo we DO need something like this. There is ALOT of consensus on some of the most important points. On the internet some people will always be jerks (checkout youtube comments if you don't believe me...)but...

    I think that's different from not having consensus.

  20. Here's the virtual "startpoint" to the creation of the new syndrome of "CFS":

    The point of demarcation between the end of CEBV Syndrome and the path to a replacement paradigm.

    One ends with the words, "Findings challenged" and the other is ultimately launched by,
    "Recent developments".


    160 Victims at Lake Tahoe
    Chronic Flu-Like Illness a Medical Mystery Story
    June 07, 1986|ROBERT STEINBROOK
    INCLINE VILLAGE, Nev. — Sandy Schmidt, 42, came down with the mysterious illness soon after she ran a marathon in San Francisco last July. She got better before becoming sick again this spring, forcing her to quit her job as a business office manager. Running even one mile now would "put me in bed for a day and a half," she said.

    Schmidt is among 160 residents of Lake Tahoe's North Shore who have been diagnosed by two local physicians since the winter of 1985 as having a chronic flu-like illness in a medical puzzle that has assumed national proportions.
    Most of the victims are well-educated, previously healthy, about 40 years old and are more likely to be women than men. Their complaints also are similar: severe fatigue, recurrent colds and difficulties with memory and concentration. About half of them have enlarged lymph nodes in their neck and almost all have abnormal blood tests, suggesting that a common viral infection may be involved.
    Drs. Peter R. Cheney and Daniel L. Peterson believe the explanation may be a chronic version of the familiar Epstein-Barr virus, which causes mononucleosis. But the so-called "kissing disease" affects primarily children and young adults, albeit the short-lived symptoms are not unlike those being seen here.
    If they are right, solving the puzzle of this cluster of illnesses may have wide repercussions. Perhaps tens of thousands of Americans throughout the country with chronic lethargy have been similarly diagnosed in recent years as suffering from chronic infection with the Epstein-Barr virus. And many of them have joined support groups or sought unproven treatments with antiviral or other drugs.
    But there is sharp disagreement over whether the Epstein-Barr virus explains more than a handful of cases of chronic illness nationwide--or any of the cases in this area. Indeed one Incline Village physician has accused the two doctors who have been making the local diagnoses of "perpetrating a hoax."
    And last fall, two investigators from the federal Centers for Disease Control spent several weeks here looking into the mystery. They concluded last week that they could "neither prove nor disprove" the relationship between the Tahoe illnesses and the Epstein-Barr virus.

    Finding Challenged!

    That finding was immediately questioned by Dr. Paul R. Cheney, one of the two doctors who has been treating the patients. He said the investigation was too narrow and has been overtaken by subsequent developments.

  21. >
    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.

    Or maybe it did, but it was so unbelievable that people couldn't bring themselves to believe what they had seen with their own eyes.

    ("Nietzsche is peachy" -graffiti)

    "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