David Tuller untangles the research history of chronic fatigue syndrome

David Tuller

David Tuller

David Tuller has never shied away from controversial stories. Writing for The New York Times for the last dozen years, he has covered a wide range of topics, including infectious diseases, gay men’s health, his mom’s 80th birthday, and most recently, chronic fatigue syndrome. Tuller recently wrote a long piece that painstakingly examines, in a way that few if any other journalists have, the role of the U.S. Centers for Disease Control and Prevention in the twisted history of research on this hotly debated illness. Here he tells TON guest contributor Julie Rehmeyer about the complexities of covering a disease that is little understood and often scorned, and about how he published the story after editors turned him down. [Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale appeared in virologist Vincent Racaniello’s blog in November 2011.]

What made you interested in writing about chronic fatigue syndrome?

I had a friend who was diagnosed with CFS about 20 years ago. I knew him before he developed CFS and I watched him all these years. He got me interested in XMRV [the virus that for some time appeared to be a possible cause of CFS -- a link that has now been discredited]. The more I looked into it, the more interesting and complicated it was as an issue.

The first time I became aware of your work was last February. I myself have had CFS for years, and it had suddenly gotten so bad that for two months, I had rarely been able to get out of bed and was sometimes too weak to even turn over.

I opened The New York Times one morning and read a story of yours on the controversial PACE study, which claimed that cognitive behavioral therapy and graded exercise therapy are effective therapies for CFS patients. Your story said, “While this may sound like good news, the findings … are certain to displease many patients and to intensify a fierce, long-running debate about what causes the illness and how to treat it… [The study] is expected to lend ammunition to those who think the disease is primarily psychological or related to stress.” But the story didn’t give much context to help readers understand the patients’ discontent or evaluate whether the illness is organic or psychological. Although the story alluded to the controversy around the definition of CFS, it didn’t cite any of the mountain of evidence for physiological abnormalities in CFS patients or quote the many clinicians and researchers who had criticized the study and even considered its recommendations dangerous.

You’ve since written more critically about that research — first in a follow-up story in the Times, and most recently in the lengthy article you wrote on the virologist Vincent Racaniello’s blog. What made you take a deeper look at CFS after that initial story?

When I wrote that first story about the PACE study, I’d been focusing primarily on XMRV, not CFS more generally. I didn’t understand the problem with case definitions [a set of criteria for what symptoms should be required for a person to be diagnosed with CFS], and there was a context of controversy that wasn’t part of my awareness at the time. I wrote that story in a couple hours on deadline. It wasn’t until afterward that I realized that this wasn’t the piece I would have written had I known more about it.

I will say, though, that my story was better than most of the others on it, which for the most part didn’t have any caveats.

What dissatisfied you about the story?

I was driving home when it appeared, and by the time I got home I had half a dozen emails about the piece. I realized that I hadn’t focused on the issue of the case definition. I’ve been a public health student and I teach reporting about public health [at the University of California-Berkeley Graduate School of Journalism and School of Public Health’s new concurrent Master of Public Health/Master of Journalism program]. In the first semester, all public health students have to take epidemiology, and one of the things they learn is that if you’re doing research, you have to have a good case definition so that you know which patients have the illness and which don’t. The PACE study’s definition of CFS is six months of unexplained fatigue — period. It’s not rocket science to figure out that that’s likely to include people who are depressed and don’t have CFS. Fatigue is a common symptom of depression, but people with CFS have some symptoms that are not typical of depression. It was really because of that that I ended up writing a second story, a month or so later, about case definition in CFS. I tried to put it in a larger context — that this issue had been fought over for years, and the PACE trial was the latest variation on it.

What made you want to write an even more in-depth piece, explaining the history of CFS research and relating that to the recent XMRV mess?

Writing the case definition story led me to start looking into the Centers for Disease Control’s role in defining the disease. I found that in 2005, the CDC created a new way of defining the illness. Using that framework, the agency calculated that the prevalence of CFS was four times what everyone else thought it was, and ten times their own previous estimate. But if four to ten times as many people now have it, obviously something is really wrong with your case definition, before or after. William Reeves was head of the CDC’s research program for CFS for two decades, and two years ago, they moved Reeves aside. They never publicly said why, as far as I could tell. Furthermore, in the 1990s, the CDC spent funds allocated for CFS research on other projects, then lied to Congress about it.

I think all of this is really important for understanding why patients can be so suspicious and paranoid. In most of the coverage, the XMRV situation was decontextualized from the experience of patients and history of the illness, although Amy Dockser Marcus did some terrific reporting in the Wall Street Journal about the back story. But no one had really focused in depth on the case definition problem and the CDC’s role in perpetuating that problem.

I didn’t want to write a rant. I wanted to write, “This is what happened with the epidemiology, and this is why the situation is so screwed up.” I wanted something that patients felt represented some of the frustration they’d experienced in the past 20 years.

Did you think of the story as an advocacy piece?

No. I’m not a patient. I didn’t want to write it as an advocate for people with CFS. I wrote it because there was an undertold story. I understood that it was something that would likely be useful to the patient community; to the extent that that’s the case, that’s great. My goal is to tell a story that’s interesting, and one that I think is important. Obviously I do think that the CDC has not done what people expected it to do in this case. I think of writing this piece as being a proper watchdog of a government agency in an area that hasn’t gotten much attention.

What dilemmas did you run into in writing the piece?

In the first version that I sent to a couple of editors, I started off with Dr. Reeves’ saying very soon after the initial XMRV finding that his research team would look for the retrovirus but that he believed they were unlikely to find anything. When he said it, I wondered, “Should he have said that?” After all, his team hadn’t even started looking for it, and there hadn’t been any evidence against the finding at that point. It suggested that he was close-minded and partial. It was particularly remarkable because individuals from all sides were already calling for his ouster, before that point.

But when I looked back on it, [I realized] that story was too in the middle of things to be a good beginning. If you weren’t immersed in the story, you didn’t know why that was something he shouldn’t have said — it took too much explaining. For editors, it must have seemed like, “What was that about?” So I reframed it as a more general piece, with that as an example of his probably poor management skills — but I put it way, way down in the hierarchy of things.

Instead, I decided to start with a patient’s experience of having this and that illness and infection. I thought it was really important to have a credible patient who was understandable, sympathetic and articulate. I thought it would be effective to juxtapose all her health problems with the CDC’s recent research concluding that CFS patients tend to have personality disorders and a history of sexual abuse. Here’s this person dealing with all this terrible medical stuff, and then they’re telling her that she’s kind of crazy. I could then use that to lead into how the CDC really screwed up. I thought that worked better than starting with the gaffe of Dr. Reeves’, which was really in the thicket of all these issues.

From there it was pretty much chronological. I segmented it to some extent by topic, but then it was just a matter of tackling each chunk. It’s complicated to figure out how much detail you need, though: this was a science-literate audience that I was writing for, so some things I didn’t have to go into in as much detail.

One thing that helped tremendously was looking through the minutes, public testimony and recommendations of the Chronic Fatigue Syndrome Advisory Committee, established to advise the Department of Health and Human Services. Those documents detailed the collapse of all support for Dr. Reeves and provided a few juicy quotes and details. Federal advisory committee minutes are great sources for all kinds of stories but used relatively infrequently.

What lessons can science journalists draw from your experience in writing this story?

Once I started to get what the story was, I was able to listen to patients more carefully. It’s very hard when you’re dealing with a patient population that’s been so mistreated: They interpret every word that’s written through such a fine magnifying glass. I’ve never written about an issue that reverberates so extensively in the blogosphere.

For science journalists writing about complex public health issues, I think it’s important not to take the CDC’s word for it, nor academic researchers, nor the press releases about the studies. Read the studies yourselves. Read the studies criticizing those studies, and the responses to the critics. I think reporters who are writing about epidemiological issues should understand basic epidemiological concepts.

What was the process of trying to sell the story like?

I think it’s hard in general with this issue, because it’s a hard thing to explain to editors as much as anyone else who hasn’t seen it up close. First you have to convince people that it’s an illness and not just a psychological thing, and then you have to explain that the CDC’s program has been really screwed up. That preamble takes so long that it’s hard to explain the story. It’s not a story that you can do in 800 or 1500 words.

I tried four or five places which seemed like they’d be good venues for it and I couldn’t get any traction. I didn’t hear back from a couple of places, and a couple said it was interesting but cited budget problems, or that it just didn’t fit in with what they were doing. I’m sure those things were the case, but I felt like it an element of it was because it was CFS and not a disease with more credibility and a better name. It’s a much harder sell because this is kind of squishy, and people don’t understand it, and there’s no identified cause. No one said, “We don’t really think this disease exists so we don’t want to spend time and money,” nor do I think anyone thought that. But I don’t think it was on anyone’s agenda as an important thing to think about.

It was very frustrating, because I knew it was a story. But then I thought, “Am I crazy? Maybe it’s not a story.” I had a colleague at the journalism school who said, “No, this is an important story.” He couldn’t quite understand why no one wanted to publish it. I felt like I got a minor secondary echo of what patients must experience when they go to doctors or talk to people about CFS.

Editors are like the rest of us: if you don’t know someone who has it, it’s hard to understand what it is. And it’s easy to ignore something that makes people homebound and invisible.

What finally led you to decide to publish the story on Vincent Racaniello’s blog?

I felt like I wanted to get this out one way or another. I was thinking that I’d just post it myself and link it to the Berkeley journalism school faculty page, and then I talked to Vince and he said, “Oh yeah, that’d be great.” He said, “Write as long as you feel like you need.” That was really great. I started off to write 2000-3000 words, but it ended up being around 10,000 words. I felt like I was able to touch on all of the issues, though not necessarily in complete depth. Even as it was, there were things I took out and things I didn’t go into enough.

Did this experience leave you wary about trying to pitch big pieces on CFS in the future?

You know, no. There are a couple of other pieces that I’d like to do. It’s made me think I may need to find an alternate way to publish them, or to find a slam-dunk way of pitching them. But the truth is, this is a piece I wanted to write, and I’m glad I wrote it. I’m glad it’s out there, and I like it. I’d love to have gotten paid, but that wasn’t my main priority. I felt like this was an important story that I wanted to tell — I was in a position to tell it and I was going to put it out there. I didn’t need the money to continue to pay my bills. Let me just be clear that I do think writers should be paid fairly for our work! I would never have been able to do this when I was freelancing full time. I’m lucky to have a job, at least for now, with a decent paycheck.

I did get $21 through contributions from the “support science writers” button at Ed Yong’s website. I let him know that would come in handy.

A glimpse behind the scenes:

Julie Rehmeyer

Julie Rehmeyer

Guest contributor Julie Rehmeyer is a math and science writer who contributes regularly to Wired and was a longtime mathematics columnist for Science News. Her work has been included in The Best Writing on Mathematics 2010. She recently wrote an article for Slate on the demise of the XMRV retrovirus theory.

EmailPrintFriendlyFacebookTwitterPinterestDiggRedditGoogle+InstapaperPocketShare
Both comments and pings are currently closed.

54 Responses to “David Tuller untangles the research history of chronic fatigue syndrome”

  1. [...] David Tuller untangles the research history of chronic fatigue syndrome Julie Rehmeyer, The Open Notebook, January 18, 2012 [...]

  2. [...] It’s not rocket science to figure out that that’s likely to include people who are depressed and don’t have CFS. David Tuller [...]

  3. [...] David Tuller untangles the research history of chronic fatigue syndrome Julie Rehmeyer, The Open Notebook, January 18, 2012 [...]

  4. [...] David Tuller untangles the research history of chronic fatigue syndrome Julie Rehmeyer, The Open Notebook, January 18, 2012 [...]

  5. [...] David Tuller untangles the research history of chronic fatigue syndrome Julie Rehmeyer, The Open Notebook, January 18, 2012 [...]

  6. [...] David Tuller untangles the research history of chronic fatigue syndrome Julie Rehmeyer, The Open Notebook, January 18, 2012 [...]

  7. [...] David Tuller untangles the research history of chronic fatigue syndrome Julie Rehmeyer, The Open Notebook, January 18, 2012 [...]

  8. [...] David Tuller untangles the research history of chronic fatigue syndrome Julie Rehmeyer, The Open Notebook, January 18, 2012 [...]

  9. [...] David Tuller untangles the research history of chronic fatigue syndrome Julie Rehmeyer, The Open Notebook, January 18, 2012 [...]

  10. cfsboston says:

    Allied government is covering-up NON-HIV AIDS cases (like mine) under the “Chronic Fatigue Syndrome (CFS)” ICD-code.

    How can HIV be deemed the cause of AIDS, when there are millions of NON-HIV AIDS cases?

    Why aren’t CFIDS and ME *reportable* illnesses overseen by our public health department? Why are CFS and ME (i.e., the same exact disorder) suspiciously categorized as two separate illnesses on a worldwide level (i.e., by ICD codes)? Doesn’t anyone else but me, very clearly see, the catastrophic cover-up going on here?

    Why are we not reading about NON-HIV AIDS cases (and/or the AIDS-like nature of CFIDS) on the front pages of every newspaper in the world? And if CFS and ME are NON-HIV AIDS, then, depending on who you believe, there are anywhere between 500,000 – 14,000,000 Americans out there with a transmissible illness. If that is what it truly is, our new form of AIDS dwarfs the ‘original’ AIDS epidemic —> TENFOLD.

    I am not afraid to say that I have AIDS (without HIV). I am equally as unafraid of saying the most obvious thing about CFS/ME: IT SURE DOES LOOK LIKE AIDS TO ME.

    If it takes courage to think and to say the things that I do, I hope that there will be a miraculous outbreak of bravery from coast-to-coast, and across-the-pond.

    I demand a CFS/HIV revolution. Vive La Revolución‏.

    Google “non hiv aids”

  11. Jody says:

    Thank you David Tuller.

    I have been living with CFS for 20 years, recovering enough to work now, in the last 5 years.

    No conventional doctor ever did me any good. My original GP went from being a pleasant and friendly man before I had CFS to a man who was rude and dismissive by the time I’d been sick for a few years. I left him but had no other doctor in the area I could go to. I was alone.

    I searched the net trying to find answers and help. I saw a naturopath. These two factors were what has brought me from being a crippled vegetable to someone who can think, and work online fulltime, and be part of her family once again.

    Thank you for what you have written. And thank you for caring about us. Many of us have very little of that in our lives.

  12. [...] David Tuller untangles the research history of chronic fatigue syndrome Julie Rehmeyer, The Open Notebook, January 18, 2012 [...]

  13. [...]   Once I started to get what the story was, I was able to listen to patients more carefully. It’s very hard when you’re dealing with a patient population that’s been so mistreated. David Tuller [...]

  14. Veterinario Cosenza…

    [...]David Tuller untangles the research history of chronic fatigue syndrome |[...]…

  15. PATRICIA L WHITE says:

    I HAVE HAD CFS SINCE 1987. AS A FORMER MED TECH/CLINICAL MICROBIOLOGIST, I FIND ALL THIS DISCUSSION INTERESTING.
    ALL I KNOW IS THAT A SEVERE UPPER RESPIRATORY INFECTION IN 1986 STARTED ME DOWN THIS PATHWAY. BY 1987 , I WAS TOTALLY DISABLED AND UNABLE TO WORK.

    25 YEARS LATER, I AM STILL DEALING WITH ” THE INGNORANCE AND ARROGANCE ” OF THE ESTABLISHED MEDICAL COMMUNITY. AS I GET OLDER AND AGING ISSUES DEVELOP, IT IS GETTING HARDER TO GET PROPER MEDICAL CARE BECAUSE NONE OF THE SPECIALIST ARE WILLING TO UNDERSTAND MY UNDERLYING CHRONIC HEALTH ISSUES AND HOW THAT EFFECTS THEIR TREATMENT OF ME.

    WITH A WAVE OF THEIR HAND, THEY DISMISS MY CFS , NEGATE IT’S EXISTENCE,
    AND MENTALLY FILE IT AND ME INTO THE “GARBAGE CAN ” .

    BUT , HOW CAN I TRUST THEIR JUDGEMENT AND SUGGESTED TREATMENTS IF THEY ARE UNWILLING ON ANY LEVEL TO UNDERSTAND THE MANY NEURO/ENDOCRINE/IMMUNO BIO-CHEMICAL DISORDERS ASSOCIATED WITH CFS ?

    I HAVE BEEN DEALING WITH A SERIES OF PHYSICAL INJURIES OVER THE LAST 8 YEARS. MONTHS AFTER EACH INJURY, I AM STILL DEALING WITH “FIBRO FLARES”. MY MOST RECENT INJURY SENT ME TO AN ORTHOPAEDIC SPECIALIST WHO LITERALLY STOOD CROSSED ARMED AND DEFIANTLY REFUSED ANY INFORMATION ABOUT CFS , ANY DISCUSSION ABOUT THE ILLNESS AND LIKE A ROBOT TOLD ME HIS PROFESSION’S VIEW OF THE ILLNESS ( CAN’T PROVE IT SO THEREFORE IT DOESN’T EXIST). MY CONCLUSION WAS THAT HE IS OBVIOUSLY NOT THE DR TO TREAT ME. BUT THAT LEAVES ME 9 MONTHS AFTER THE INJURY STILL HOBBLING ALONG ON A “BUM LEG” , WITH NO RELIEF IN SITE.

    IN CONCLUSION , I HOLD OUT HOPE THAT “SOME DAY, BEFORE I DIE”; SOMEONE WILL PUT ALL THE PIECES TO THIS PUZZLE TOGETHER AND COME UP WITH A CAUSE AND A CURE.

  16. [...] boost. Writer and CFS patient Julie Rehmeyer wrote about the story behind David’s story for The OPEN Notebook on Jan. 18, [...]

  17. Emma says:

    Quoting billie:
    “Finally, there is a striking continuum between the way people with Autism/Parkinson’s/MS were treated in the recent past (ie. as the children of ‘refrigerator mums’/as malingerers/as alcoholics)and the contemptuous dismissal of people with M.E. today – a lack of knowledge translating into medical, scientific and ultimately social abuse. A glance at the proposed new category of Complex Somatic Symptom Disorder currently being considered for the psychiatry profession’s DSM-5 should ring alarm bells for anyone concerned by the legitimisation of vague psychology-based labelling in place of real research into biological causes.”

    I agree completely. David, please focus your next piece about the long history of psychologization of unknown diseases. Why does the medical profession have to repeat this, over and over again?

    Thank you so much for your work.

  18. Josette Lincourt says:

    Am I paranoid? I don’t think so. Am I distrustful? Of course! First diagnosed in the 70s with Post Viral Fatigue, being in my mid-twenties I kept on dragging my carcass to a job, losing jobs because I couldn’t do overtime, finding jobs again because of being a topnotch secretary with two languages.
    After two surgeries in 1999, I totally crashed and have never been able to work since and now spend most days scotched to my sofa, after fighting an insurance company, the Quebec Pension Board, even welfare at some point, being sent to medical experts whose job was to find a way to say that I was not ill. These medical experts were doctors. If this doesn’t explain why I am distrustful of any medical person talking about, writing about, claiming to cure M.E., nothing ever will. And this is the nutshell version: since nearing 65, I’ve just shredded four archive boxes full of the documentation (doctors, tests, reports, lawyers) generated in my fight. By the way, it was only a 1/4 victory. One quarter of what the insurers had contracted to pay me is what I got from them.

  19. Dr John Greensmith says:

    It was the creation of the term Chronic Fatigue Syndrome that caused the knotty mess, which David Tuller is, admirably, trying to untangle.

    CFS doesn’t exist in the singular because there are at least 7 sets of criteria for it and we know that there are people, once diagnosed with CFS, who now have a firm diagnosis of Hypothyroidism, Diabetes, Coeliac, Crohns, Myasthenia Gravis, Bechets, Lyme, Lupus, MS, as well as others and, of course, some remain undiagnosed or unknown. It is very likely that there are people who probably do have an illness best described as Myalgic Encephalomyelitis told that they have CFS because doctors have been told to prefer CFS since 1988 and (certainly in the UK) since the NICE (National Institute for Health and Clinical Excellence) guidelines of 2007. We know that some patients’ records have been changed from M.E. to CFS.

    Yet some high-profile researchers refer to it as “This illness …” as though it is a single illness; since 1988 CFS has been conjoined with M.E., one way or another, CFS/ME as though M.E. is one of a number of chronic fatigue syndromes (though never has another illness been attached to CFS/), or ME/CFS, in which case many illnesses would have to be nested under M.E. Most astonishingly, some researchers permit all of the above options, that is, CFS, CFS/ME, ME/CFS and even other terms as synonyms (Post Viral Fatigue Syndrome; Chronic Fatigue Immune Dysfunction etc.) in a polluted hotchpotch I have never seen tolerated in any other area of scientific research – even at High School level.

    This is not only logically untenable, it renders research samples contaminated, making findings invalid and unreliable. Conclusions cannot be applied to people who have M.E., who were probably not included in the samples tested. In particular, any treatments, which may be thought to be helpful for one condition, said to be a chronic fatigue syndrome, may be ineffective, or even harmful for an M.E. sufferer.

    Until this nettle is grasped and trials are conducted by independent researchers – by which I mean those who have no career interest, or profit motive whatsoever – using the most pure sample of M.E. subjects, separated from “fatigue” and its bookends, “chronic” and “syndrome”, there will remain the tangled mess, which David writes about today.

  20. Paulina says:

    Thank you to both David and Julie for publishing this interesting (and at times disheartening) interview. Disheartening because it’s so sad to know that editors are still unwilling to pick up this important story, just as researchers are generally still unwilling to enter the field.

    I agree with Angela’s point that the use of the word “paranoid” was unfortunate, even if there were a handful of patients that fulfilled this description. Maybe “distrusting” would have been a better word.

    If you beat up a dog every time he tries to eat and one day you don’t beat him but he still shies away from the food, is he paranoid?

    Please, Mr. Tuller, keep writing about this important subject. I sincerely doubt that there are many subjects where there is more of an opportunity to actually help desperate and sick people who have been neglected and mistreated for decades.

    With gratitude,
    Paulina

  21. billie says:

    One thing that makes me smile is remembering how, in my twenties, during the 1980s when I was fit and well, I went on many marches in support of people with HIV/AIDS who were being discrimminated against. And now you write this article, which I feel very supported by. I like that. Who’da thunk it…

  22. [...] The Open Notebook:  The story behind the best science stories, science writer Julie Rehmeyer interviewed Mr. Tuller about why he wrote the article and why he thinks publications didn’t pick the [...]

  23. Rivka says:

    Thank you, David and Julie, for the important work you are doing publicizing the horrible treatment — the abandonment and outright neglect — by the US government of 1 million very sick and disabled Americans for the last few decades.

    I have many friends who are so weak and sick that they are in bed most of the time and unable to care for themselves. Yet they are abandoned by their families who do not believe they are ill, in large part by the tone set by the US government (that called our illness mere “chronic fatigue”). Three of my friends’ families are ignoring their physical illness and want to stick them in psych wards. Once in one, one friend told me how she was too weak and sick to get to the cafeteria, the trained mental health staff scolded her and told her she had to walk there or she would not eat. Now tell me who is crazy?: Is it my friend who has been desperately ill for decades with ME/CFS, or the psych ward staff (from one of the most prestigious mental institutions in the country) that did not listen to her and believe her.

    There are countless stories like this.

    THIS is the story to tell next, David, if you want to write more about the neglect and mistreatment of patients. Tell about the abysmal treatment of the most severely sick in the ME/CFS community. I can put you in touch with a few of them. What are their lives like? They can’t have friends over, as it is too exhausting to interact with other people; they can’t talk on the phone, also too exhausting; can’t shower, too exhausting to raise your arms over your head to wash your hair. They are the living dead. And there are tens of thousands of them around the USA. All being ignored — or worse, belittled — by our gov’t, medical community and media.

    I know, as I have spend many many months and years, over the last 22 years, in a similar situation, ever since I got a case of Mono that seemingly never went away.

    Patients who are not bedridden need to ACT UP and hold a “Shame On You HHS!” sign in front of an NIH, HHS, CDC building, demanding our gov’t pay attention and fund research into this devastating illness that new people are getting every day. I should know, as I talk to “newbies” with this illness all the time. It breaks my heart.

    Thank you, again, David and Julie, for writing about our plight.

    Rivka
    ME/CFS 22 yrs (much of it bedridden and homebound)

    • Maureen Goggins says:

      “THIS is the story to tell next…”

      AMEN

      p.s. Thanks, David, for your involvement in this issue.

  24. Hope says:

    HI David

    I appreciate you willingness to understand the ME and issues around case definition, but you are mistaken about the retrovirus research.

    I will keep this really simple for an opener.

    The work of the main researchers in Lombardi and Lo identified polytropic sequences, not xenotropic. Silverman’s incorrect data in Lombardi had mislead them into believing those viruses had a xenotropic region and clustered near the synthetic strain VP62. They did not and like Lo were polytropic. Those new sequences placed into the GenBank are all polytropic.

    A replication study using the methods in Lombardi and Lo that are known to work has also failed to materialised. Science has been throw out by those using assays without data to prove they can detect the sequences.

    Why then do you think VP62/XMRV has been discredited, when the prostate cancer and ME viruses are not VP62?

  25. Tina says:

    Another story not told, why do researchers not want to study ME/CFS? I spoke to one two weeks ago who did a study in ME/CFS in 2000. He explained why he has no interest in studying it further. Montoya has something to say on that. And Nancy is keeping up with how many apply for NIH grants, which is not many at all, the NIH person said at the Nov. CFSAC.

    Is it harder to get an ME/CFS study published?

    Forgive me if that was mentioned in your writing, David.

    By the way, since you couldn’t get it into a national newspaper, I think writing the saga for scientists is good.

  26. david tuller says:

    After re-reading the interview with Angela’s point in mind, I wish I hadn’t used the word ‘paranoid’ or that I had at least phrased it as “come across as paranoid.” I used the word more in the colloquial sense than the clinical sense–I thought the piece put into context why patients are suspicious of the CDC and the government overall. But I recognize that “paranoid” is an inflammatory term, especially given some of the accusations that have been made in the U.K. recently over the issue. I do agree with Julie that there is an element in the community that has taken that thinking to extremes, but that’s true in any community.

    • billie says:

      I do like you, Mr Tuller.

    • Justin Reilly, esq. says:

      Mr. Tuller,

      Thank you so much for this great interview, and of course, much more so to your amazing piece on the Virology blog. It is very disappointing that that important, well-written and finely researched article was not be published in a national publication, when so many copies of misleading press releases on ME are.

      At least AIDS patients could count on the San Francisco chronicle to “bear witness” to the travails of the AIDS science and initial government neglect. I understand you have written for not only the Times, but also the Chronicle. If you submitted the story to them and they rejected it, that would make me quite sad since you are the only journalist, other than ME sufferers and Llewelyn King, who has written accurate pieces on the whole big picture story of abuse and neglect of ME patients and science by our government. We are almost 30 years into this epidemic and we still can’t get the truth told in the media.

      XMRV was an interesting and important story that got a lot of press, but the whole saga on which you wrote in your blogpost is a more interesting and important story, in my mind. One million people in the US have this disease. Readers would be very interested in this story as you well know by the email and posting reaction you get on any story you write on ME. Articles and even blog posts on ME often get hundreds of comments posted. Are editors not persuaded by this that there is interest in this topic and that it is important?!

      I pray that you continue to write on ME. Hillary Johnson is our Randy Shilts, but Osler’s Web has been mostly ignored unfortunately. You could well be the person that makes the most difference in directing public attention to this vastly underreported story and in turn correcting a huge public health problem and helping the 17 million pwME. Please continue to write on ME and try to get published. Yours is journalism at its finest. We need you!

    • Thanks very much indeed David for your clear understanding here of the points I was trying to make, which I do appreciate. Any community will have differences of approach that others might deem extreme – the ME community is no different in that respect – despite the way they have been frequently portrayed. The term ‘paranoid’ has often been used to silence people in this community and deem their concerns as irrational, hence my concern.

      I will say there is a whole other story about the retroviral issue as well, and here patient/supporter concerns about the issue have been grossly misrepresented in various places. I don’t know if you are aware of this quote from patient advocate Khaly Castle: it’s one I’ve been citing, because it encapsulates the actual concerns of many in this community (as opposed to how the community’s concerns are being portrayed):

      “Patients are not pushing for a favorite pathogen. Patients are pushing for real science to occur and to take its course before the door gets slammed on ANY potential avenue of study. Patients are not stupid and are tired of being treated as such. Patients are particularly irked that they point out the discrepancies in scientists’ and government’s claims, and said scientists and government continue to push the mistruths forward as if by saying it loud enough and long enough, it will be true.”

      As you no doubt understand, the issue of ME/CFS and how people given that diagnosis are treated is extremely complex, and one of my concerns (as a supporter, but also within my own academic field, sociology) has been how the community has been discursively represented (or, more accurately, misrepresented, for example last summer’s media frenzy. I am really encouraged that you understand the issue. Obviously no-one is looking for a hagiography of the ME community in any future articles you might write (unless you want to of course!) – but the history of misrepresentation of this community has made the difference for some between life and death, and for many the difference between a life and a ‘half-life’ – so many of us are understandably concerned about being misrepresented. I’m really thankful you appear to understand this is not unreasonable. You’d be surprised how many don’t.

  27. Julie Rehmeyer says:

    Hi Angela,

    I am hugely sympathetic with your desire that journalists not disparage CFS patients, especially since it happens so often and so unthinkingly. At the same time, I think it’s simply true that some CFS patients are paranoid and suspicious, just as one would expect in a diverse group of folks who have been afflicted with an awful and maligned illness. (Note that David said that patients *can be* paranoid — he didn’t describe all patients as paranoid). It’s also true that the history seems so unlikely to an outsider that CFS patients who are drawing cautious conclusions from the facts can come across as paranoid.

    For both reasons, it’s easy for journalists coming into this story to get a negative impression of the patients, and I think it’s valuable to acknowledge that and to look at the dynamics behind it. If this piece has the effect of making a journalist push past an initial negative reaction to understand why people are reacting as they are (whether they are CFS patients or any other mistreated group), I think it will be hugely valuable.

    In my Slate piece, I discussed the way that some CFS patients regarded Judy Mikovits as their savior and saw any doubt of the XMRV hypothesis as an attack on themselves, and I argued that the extremity of emotion around the XMRV research (from patients and others) contributed to the way it became a fiasco. I tried to explain the history and dynamics that drove some patients to respond that way. And I also pointed out that only some patients responded this way — others waited for the science to play out, acknowledging the uncertainty inherent in such a new finding. No, that portrayal is not entirely flattering to the patient community, and I’m sure that reasonable people will disagree with my assessment. But to my mind, understanding that is essential to making sense of what happened. I think that the patient community will be best served if we are able to acknowledge the less pleasant aspects of ourselves. It’s always hard, of course, to tolerate that kind of vulnerability after so much mistreatment, but I truly believe that it’s in our own interest.

    One final comment: I’d be very hesitant to claim that having CFS myself gives me greater authority to describe the patient community than David. I am generalizing from my experiences and observations just as he is, and the job of a journalist is to make those generalizations as sensitively and accurately as possible. His distance offers him a valuable vantage point; my immersion offers me a valuable one. And both perspectives have their blindnesses as well.

    Julie

    • cfsboston says:

      I have always understood that retroviruses are cytotoxic; they don’t kill cells. I don’t see how a retrovirus (e.g., HIV, XRMV) can be deemed the cause of any acquired immune deficiency syndrome (e.g., AIDS, CFS).

    • Thank you Julie for your reply to me. I would say I disagree with the issue of ‘acknowledging the less pleasant aspect of ourselves’ as a community, purely because it’s impossible to know what those actually are. Your idea of the ‘less pleasant’ may well be completely different to mine. There is also, I suspect, the problem of the ‘washing dirty laundry in public’. The public don’t need to know about what you, I, or others think the ‘less pleasant’ aspects of the ME community are, especially if that is an unstable category fiercely contested (I contend that it is). I think David’s own point about the differences in any community are extremely important here: but also – there are more relevant stories to be told about this illness.

      I would also say that my own, and others, legitimate concern about the retrovirus issue is that the science has NOT been allowed to play out – I’ve mentioned that in my response to David. Again, Khaly Castle’s comment is apposite.

    • Jack says:

      Julie,

      A great interview thanks and I wasn’t bothered by the reference from David to ‘paranoia’ etc. I got what was meant in the context of the discussion and elsewhere

      I did find your piece in Slade provided some excellent context to all of this mess. It would be nice to think that with all this awareness now of the problems associated with a poor definition the powers that be are doing something about it like adopting the more stringent criteria for research as well as diagnosis perhaps.

      Quite what they can beyond that I really do not know mainly because it is now so complex. We all know what is needed, but the search to find a ‘diagnostic marker’ has been such an arduous and contentious one (in part) I do wonder if it will ever be resolved.

      Where would one begin? How does one determine for example which of the criteria best ‘fit’ the condition when not everyone agrees what the condition is? Let alone pull one or two reported symptoms and hold them aloft as being in some way definitive without also requiring an objective test.

      I thought Prof Racaniello’s article in Discover was another noble attempt to bring this all to light – I mean it’s ‘crazy’ isn’t it? If scientists can see the problem, medics can see the problem, patients can see the problem – why isn’t anyone sorting out the problem? Is it really so impossible?

      http://blogs.discovermagazine.com/crux/2012/01/12/hiv-in-xmrv-out-how-scientists-deduce-what-does-and-doesnt-cause-a-disease/

  28. Victoria says:

    I fully enjoyed this interview.

    For every patient, the most informative website is that of the National CFIDS Foundation, Inc. The all volunteer group that funds research is a huge help to all patients. Just one example is the anesthesia protocol fully proven via replicated science. If you’re a patient, it can save your life! Go to http://wwww.ncf-net.org and see for yourself!

    Vicky

    • Kathryn Stephens says:

      Hi Vicky! Now, I love the NCF, but I wouldn’t exactly say “for every patient, the most informative website is…”

      The all volunteer staff has done an exemplary job of “following the science”, as they famously espouse; however, theirs is not the only science to be followed.

      • Kelly says:

        I agree Kathryn, and would go one step further in saying that basically all the NCF folks do is demean other organizations. Also it should be pointed out that they were against the retroviral theory from the start, because, I guess, they had found ‘the cause’ back in 2006. I wonder whatever happened to that?

  29. Hey again, If you wish further reading I also meant to mention Dr Melvin Ramsay’s book ‘Postviral Fatigue Syndrome – the saga of Royal Free Disease’, first published 1986, it gives an excellent overview of the history of the illness in UK – up to that point – and also refers to other epidemics – as far back as LA in 1938 – worldwide. The most famous one in UK is known as Royal Free in 1955 (named after the hospital in London where it occurred). Dr Ramsay describes all of these outbreaks as being ‘bound together as a single infectious disease entity by the almost unique form of muscle fatigability which may in some instances result in permanent physical incapacity.’

    The Royal Free outbreak was labelled years later (1970) by psychiatrists McEvedy and Beard as mass hysteria, simply by reading old notes, they actually saw no patients. Abracadabra! making neurological illness disappear, still goes on to this day! ;)

  30. Tina says:

    As a reporter, I am interested in the thought process David went through as he found out more and more about ME/CFS. I have the disease also.

    I also understand why editors hesitate to give space to long pieces on this illness. Complexity is good as long as there is a conclusion or two opposing sides, as in Republican vs Democrat. That’s mentally simple and clear. And even then, it would have to have broad interest. It’s much easier today to just report on what’s new in science (a conclusion) than to look into an unresolved debate and why. It’s kind of a sleeper. What’s the point, the non-ME/CFS reader will be looking for by the fourth paragraph. And if the point is CDC got off track, well, that is not really news unless it involves the flu or something else that people feel can hit home.

    I think, David, that is part of the problem. While the prevalence of ME/CFS at 1 million in the U.S. is double that of MS, double that of Parkinson’s, I think the public interest for the same story would be more if it was about one of those illnesses. The thought that it is not as common, and therefore not worthy of print space, is a misconception. And, David, part of that is that many of us, including stars, live in the closet with this illness.

    It’s hard to explain to some patients why ME/CFS coverage doesn’t fit what editors are looking for. As you said, it is just another perceived bias, as you said the editor refusals gave you a hint of what patients feel when they go to doctors.

    If you think there is more to tell – and if you want to get paid – maybe you should write a book. It could pick up where Hillary left off.

    • billie says:

      For me, there are are three stories beneath the main story that are gripping in themselves:

      One is about how easily you can lose your place in society through just the little slip of getting ill, then not being believed.

      The other is about how a small group of psychiatrists with influential links to insurance, funding, media, research, political, welfare and medical organisations, can effectively vanish a whole population of physically ill people, and thousands of biomedical research papers too. And how this is enabled by other similarly powerful individuals and organisations (such as health editors), resulting in the first situation above. What kind of society does this describe? Is it one we want?

      Finally, there is a striking continuum between the way people with Autism/Parkinson’s/MS were treated in the recent past (ie. as the children of ‘refrigerator mums’/as malingerers/as alcoholics)and the contemptuous dismissal of people with M.E. today – a lack of knowledge translating into medical, scientific and ultimately social abuse. A glance at the proposed new category of Complex Somatic Symptom Disorder currently being considered for the psychiatry profession’s DSM-5 should ring alarm bells for anyone concerned by the legitimisation of vague psychology-based labelling in place of real research into biological causes.

      If each of these stories put real people at their core, I think I – as a reader – would be gripped. And pretty horrified.

  31. Wanda Lozinska says:

    Hi,
    I’m glad you’re doing something about rectifying the position as regards to ME/CFS. This has been known since an outbreak in Iceland as far back as 1948! Proper research was started in London after an outbreak there in 1955 (in a hospital, so a viral cause was established.

    Then, lots of very promising research was done in the USA after an outbreak in the Lake Tahoe area in 1984. Unfortunately, all this research got derailed by the psychologists and that’s why we now have 17million people worldwide with this disease that’s ruining their lives, and the health systems haven’t a clue as to what to do about it.

    I’m in the UK and am not getting any proper treatment. Doctors who try to help are hauled into “fit to practice” hearings by the General Medical Council if they stray from the official stance of CBT & GET (Cognitive Behavioural Therapy and Graded Exercise) which not only don’t cure anyone but have actually made some people worse! So, thanks for trying to help.

    I’d recommend you read “Osler’s Web” by Hillary Johnson as she has done lots of research on this, starting from the USA in 1984.

  32. mark says:

    As a long term sufferer, I have to say I’ve never read such a coherent and informed overview of the research history around ME. This is an outstanding piece of work and even offers a ray of hope that reason and fairness may ultimately prevail in the characterization, investigation and treatment of the condition.
    Thank you, David.

  33. cfs boston says:

    Dear NewsWeek,

    The medical establishment will have you believe that Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is some sort of mysterious illness, but it’s no mystery to me; CFS/ME leads to HIV-Negative AIDS, idiopathic CD lympocytopena (ICL), a clinical diagnosis that I possess.

    How can the AIDS establishment continue with a stale “it’s caused by HIV” theory when there are ICL cases cited in medical journals dating back to 1992? While millions of ailing immunodeficient CFS/ME patients get belittled and neglected, perfectly healthy HIV+ people are allocated billions of dollars in taxpayer money.

    In the U.S. last year, the NIH spent $3.1 billion researching perfectly healthy HIV+ people. Sick, ailing immunodeficienct (some of us dying) CFS/ME patients received a meager $6 million. How can it make any sense to anyone?

    It’s so easy to see that the medical establishment simply has these paradigms (CFS, HIV) inverted. AIDS patients are simply more CFS patients, who also happen to harbor a seemingly harmless virus, HIV. AIDS patients are just the tip of the CFS iceberg, and it’s well-documented that HIV is not the cause of CFS/ME.

    How else do you explain that there is no CFS/ME epidemic in the HIV+ population? CFS/ME does not discriminate. The answer is that there is; any otherwise perfectly healthy HIV+ person that is: 1) symptomatic, 2) is better on ARV’s, or 3) is severely immunosuppressed (AIDS)…

    …is a CFS patient.

    Putting causal pathogens aside for a minute, simply rename CFS, ME, and AIDS all to be “low natural killer cell disease” and only diagnosis patients with “low natural killer cells” with it. Everyone would very clearly see that:

    CFS + ME + AIDS = low NK cell disease = one catastrophic epidemic

    (not caused by HIV)

    My government sold-out global public health for the sake of profit –> industry, oil, and Orwellian greed. If I weren’t only 25% alive, I often wonder what I should Occupy.

    Now that the mystery has been solved, could we please stop wasting time and re-allocate all the HIV funding into CFS/AIDS research?

    I demand a revolution!

    7 Step Plan to resolving our World’s catastrophic public health disaster:

    1. Demand research funding parity for CFS with AIDS.
    2. Suggest that CFS & AIDS be researched together by scientists rather than as separate entities.
    3. Urge the CDC to move their AIDS division under the CFS umbrella so they research all the infections that AIDS and CFS have in common.
    4. Urge that AIDS organizations (like AmfAR) include CFS under their umbrellas so that CFS advocates don’t have to reinvent the wheel.
    5. Demand that the White House, Fauci and the Director of NIH make a public statement that (just from what we know today) in terms of the immune dysfunction and human suffering, CFS is just as serious a public health problem as AIDS.
    6. Request that an annual international joint CFS & AIDS conference be held by the World Health Organization.
    7. Suggest that next December 1st be declared the first “World CFS/AIDS Day.”

    I stopped fighting for myself a long, long time ago.

    I fight for humanity.

    To see the *new* face of AIDS: http://www.cfsstraighttalk.blogspot.com

    Could I be you?

  34. billie says:

    I’ve been longing for a really good investigative journalist to notice how so much of the media stories and ‘scientific’ research surrounding M.E.(referred to as chronic fatigue syndrome in the U.S.) simply doesn’t add up. And here you are!

    Thank you so much for taking the time and spending the effort to understand the background of, and influences on, this illness. Each of these has resulted in immense suffering and unbelievable injustice, the kind I never imagined until I got it myself.

    So thank you very very much for your writing. It really does help.

  35. Hey David and Julie,

    May I reiterate Tom Kindlon’s comments above and thank you, David, for your articles on this illness. I was diagnosed with ME (myalgic encephalomyelitis) in 1983/84 in west of Scotland – after an enterovirus (Coxsackie B4) – by a consultant neurologist. I am the author of an autobiographical novel, The State of Me.

    I’m British and I live in UK, so my perspective is from a UK p.o.v, but I have a little experience of USA as I was living off and on in Palo Alto early/mid-nineties, my brother was at Stanford. No one had heard of ME – though my brother was friends with Stanford med students, who were just beginning to hear about CFS, but knowledge – and belief! – was murky to say the least. So it is interesting to me now to see journalists such as yourself getting a handle on things in the Bay Area.

    I also agree with Angela’s point: the way we have been misrepresented as a community over and over by journalists/health editors is crying out to be investigated/written about.

    The chief offender in UK, a consultant psychiatrist (whom journalists last summer simply could not get enough of!) is currently reinventing himself as a kind of saviour of PWME on a new website – he is distorting the facts, and once again obscuring the truth/history of this complex neuroimmune illness.

    It really never stops, the distortion, the game playing. And yet, we the patients all remain ill, to a greater or lesser extent. It’s a tragedy.

  36. G Lyon says:

    Thanks, David and Julie. The backstory on the story was almost as interesting as the story itself.

    One reason I thought it was an important story is that scientists who get involved in researching one element of ME/CFS (such as many of the virologists who studied XMRV) often don’t know much about the disease or the politics around it. This can affect their research in several ways. The most critical is in the case definition they use to select their patient cohort, which as you point out, affects the validity of their results. The politics can affect which research gets funded and/or published. Also, without knowing the historical controversies, researchers new to ME/CFS can be blindsided by the vehemence of the response from patients. Taken out of context, that response could convince some people that ME/CFS patients really are nuts.

    Even if a scientist were interested enough to look into the background of ME/CFS, it’s a long and complex history. Until your story, I don’t think there was a short summary giving the highlights. So I think that in writing it you may have contributed to improving the quality of the research in the future (especially if it leads to the use of a better case definition), or at least made things easier on the scientists doing it. As a patient, I thank you for that. I wish we had more science writers as conscientious as you.

  37. Flo says:

    Thank you, Julie and David. I found Ed Yong’s blog, where he described his nifty plan:

    “Every month, I choose ten excellent blog posts and donate £3 to their authors. If you want to join me in supporting great science writing, use the first button. Any donations in June will be split evenly between these ten writers.”

    June? It’s January, but since Yong still lists David Tuller, I’ll ask him to add my January donation to the June pot. I believe good science writing is crucial to finding a cause and cure.

    http://blogs.discovermagazine.com/notrocketscience/2011/12/01/science-writing-id-pay-to-read-november-2011/

  38. @ David and Julie. Please don’t take offence with what I’m about to say, and understand this is written with respect. David I believe I was one of those who emailed you about the criteria problem with regard to the PACE trial that you might be referring to.

    I’m not loving the portrayal of patients (or their supporters, like myself) as ‘paranoid’. I think this story needs to be told without that emotive language – even if from a position of claimed neutrality! This is what makes me nervous about journalists and their ‘telling the truth about other people’s lives for them’ (that’s a quote from feminist academic methodologists by the way – and is a well known concept in academic scholarship – and I’m sure that David and Julie are aware of that).

    I know some people feel this community should be grateful-grateful-grateful for anything that doesn’t represent us as knife-wielding hysterical maniacs (and bearing in mind the outrageous claims made about us in the global media all over the summer of 2010 that is an accurate description!) but it’s still not appropriate for us all (patient or supporter) to feel we have to be misrepresented as ‘paranoid’ – even if deemed with ‘good reason’. It still places us, wrongly, as recalcitrant irrational hostiles – out of control and still ruled by our crazy ways etc… this community needs that like a hole in the head.

    I’d ask any journalist to bear in mind that the portrayal of this community and its supporters as paranoid, as recalcitrant, as irrational, has been going on for years, as a depressingly convenient ad hominem against the community and its concerns, and THIS in itself might be something interesting to be investigated also.

  39. Tom Kindlon says:

    Thank you, David, for your work on this issue. It is very much appreciated.

    The CDC’s 2005 definition for CFS is odd – but for various reasons, has never really been scrutinized as much as it should have been. As you have pointed out in your writings, using a correct definition is very important.

    Thank you also to Julie for this interesting interview.

Powered by WordPress