Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough

By David Tuller

Years ago, I never thought to myself, ‘Hey, I’ve gotta be the guy who writes about chronic fatigue syndrome.’ I mean, why would I? It just sort of happened. When research suggested in 2010 that the illness might be linked to a mouse retrovirus, I wrote a piece about it for The New York Times.

After that I wrote another story, and then more stories, and then a few more—probably a dozen or so in all. But within a couple of years the mouse retrovirus hypothesis fell apart. And media interest in the illness vanished.

That was a problem for me. In the course of my reporting, I’d realized that the disease was both devastating and widely misunderstood. People were really, really sick—some were homebound for months and years at a stretch. Yet their condition had been saddled with one of the most condescending names ever given a major illness.

The word “fatigue” was a complete misnomer. One person after another explained that fatigue, as most people understand it, was not remotely comparable to the utter exhaustion they experienced. The real mark of the illness was that people experienced a sustained and disproportionate loss of energy, an extended relapse, even after a small amount of exertion. Other core symptoms were cognitive problems, sleep disorders, and often muscle pain.

In fact, the illness already had a name when the U.S. Centers for Disease Control and Prevention mis-christened it “chronic fatigue syndrome” in the late 1980s. That name was “myalgic encephalomyelitis” (right, sounds like a real disease!)  The World Health Organization had recognized myalgic encephalomyelitis as a neurological disorder since 1969, and considered chronic fatigue syndrome a synonym. U.S. government agencies, in a compromise move, have recently started calling it ME/CFS.

I came to realize that as long as people called it chronic fatigue syndrome, no one would take it seriously. When I would mention the issue, others said they were tired too. When I talked to editors on the phone, I could practically hear their eye-rolling mechanisms click into gear as soon I uttered the word “chronic.”

But then I stumbled across an amazing story. In 2011, The Lancet, the U.K.’s leading medical journal, had published a study called the PACE trial.

The PACE investigators were well-known British mental health experts, luminaries in the medical and academic firmament. They had long contended that physical deconditioning cause the awful symptoms. And patients were deconditioned, according to the theory, because they remained sedentary. And they remained sedentary because they mistakenly believed they suffered from an underlying organic disease that would get worse with exertion.

That Lancet paper, and subsequent results published in other journals, purported to prove that two non-drug therapies—an incremental increase in activity called graded exercise therapy, and cognitive behavior therapy—could successfully treat the illness. The first was designed to counteract the deconditioning and get patients “reconditioned.” The goal of the second was to help patients let go of their conviction that they had a medical illness. The findings were hailed as good news for patients.

In reality, the study contained indefensible flaws. During the trial, the investigators relaxed the scores required for participants to be considered “recovered” on the two primary indicators—fatigue and physical function, assessed by questionnaires. In fact, they relaxed the scores so much that they overlapped with the scores required to demonstrate enough disability to enter the study. At baseline, 13 percent of the sample was already “recovered” on one of these two measures—an important detail that the investigators did not include in any of their papers.

As a reporter, my work has always rested on the presumption that revealing information can do more than create excess noise. I haven’t always managed to believe that.

During the trial, they also published a newsletter for participants that promoted the very therapies under investigation. They based their claims of treatment success solely on their subjective outcomes, since all their objective measures—like a six-minute walking test and data on employment and benefits—failed to show evidence of treatment benefits. In the trial protocol, they had promised to tell prospective participants about any conflicts of interest. But they didn’t. In their case, these conflicts included extensive ties with insurance companies seeking to limit health and disability claims.

I struggled with how to tell the story. Who were my hoped-for readers? Should I go short for a popular, mainstream audience, or long for scientists, the patient community, and obsessives like me? What was the best way to shovel in piles of statistics and complex epidemiological concepts? In the end, I followed my gut and just wrote what I wanted. I stopped somewhere just beyond 14,000 words—I mean, enough was enough. But, amazingly, I still hadn’t covered everything that had gone wrong in the PACE trial.

Who the hell was going to publish 14,000 words about chronic fatigue syndrome? I considered carving out a CliffsNotes version in a bid for wider dissemination, but couldn’t bring myself to do it. I finally turned to my friend Vincent Racaniello, a Columbia University microbiologist who hosts a site called Virology Blog. (What, you don’t have it bookmarked?) He’d become interested in ME/CFS during the mouse retrovirus era. Luckily, he trusted my reporting and posted my opus. Yay!

The piece took off in the Facebook-sphere and Twitter-sphere and maybe other spheres, especially among patients who had waited years for those outside their world to notice that the study was a meaningless mess. Suddenly, I found myself in the center of my very own viral tornado! Before this, I’d tweeted maybe a dozen times to 43 followers. Within weeks, I had 10 times as many hanging on my every PACE-related comment. Watch out, Kardashians.

After Virology Blog posted my piece, some other journalists and bloggers began covering the issue, citing my work. Patients quickly gathered more than 10,000 signatures on a petition to The Lancet demanding action. The experts I had quoted, concerned about the PACE study’s unacceptable flaws, signed an open letter to the journal and its editor, Richard Horton, seeking an independent review of the trial data. I’ve been posting weekly follow-ups on Virology Blog, and tweeting some more.

I have been able to track, day by day, my story’s journey through the eco-system and its immediate impact on the public debate—albeit within the fairly circumscribed world of people who care about this issue. Momentum still seems to be building, helped along by the federal government’s recent announcement of a new push for biomedical research to find answers to the illness.

Beyond exposing the flaws of this particular study, my project has offered me another enormous benefit. As a reporter, my work has always rested on the presumption that revealing, explaining and disseminating information can do more than create excess noise. In these hyper-mediated times, I haven’t always managed to believe that. This month, I definitely do.

David Tuller is academic coordinator of UC Berkeley’s joint masters program in public health and journalism.

One in a series of personal Perspectives. We invite writers and readers to submit their own essays—inspiration can come from California magazine or California Magazine Online stories, the news, or issues of the day. Read more:

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Thank you David Tuller The ME&CFS patient community owes you an immense debt of gratitude. While biomedical research has finally started to produce promising results, the stigma and misconceptions about the illness at times seemed never-ending. The PACE trial and its media portrayal have played a massive role in both public perception and public health policy internationally. Like many patients, the events of the past few weeks have given me hope that there might be a way out of this mess. You say that “As a reporter, my work has always rested on the presumption that revealing, explaining and disseminating information can do more than create excess noise”. It has done much more than that; You have made a real difference in the lives of millions of patients around the world. Thank you.
Dear David Tuller, on behalf of my sister, who has suffered for 26+ years with this hideous disease, we cannot thank you enough. From your earlier articles we always knew you ‘got it’ and showed a lot of promise if you’d just keep writing. You’ve exceeded our expectations… you are approaching, if not already there, hero status! Thank you so much!
Dear David Tuller, As both a Berkeley alum and a patient of eleven years (I got sick two months before graduation) I cannot thank you enough for your diligent, thorough, and persistent analysis of the PACE study. I am so happy to see such trailblazing work coming from a member of the Cal community and cannot wait to see what comes next- we’re finally getting to watch the dominoes fall!
You are truly a hero to the ME/CFS community of patients and caregivers and advocates! Thank you so much for your reporting! It would be wonderful to have articles investigating the financial motives of the PACE study researchers as well as the history of neglect and ridicule of ME/CFS and its victims in this country. I would also love to see something explaining and documenting the psychological damage inflicted on patients being treating as pariahs as they suffer from this devastating illness. I’d particularly like to know how much the fact that most of patients are women influenced the decades-long neglect and mistreatment we’ve suffered. I became ill in 1986 at 39 and am probably a part of the Incline Village cohort. Next year will be 30 years of being bedridden, housebound or severely restricted in activity. Currently I am homebound though I’m now able to sit in a recliner instead of being bedridden. I’m one of the lucky ones because thanks to my husband I don’t have to live in destitution like so many of us do. Two of my three children have no memory of me well—as the woman I was and lost. It is important to remember that this illness destroys whole families, as caregivers buckle or leave under the pressure of having to do everything and children are left to fend for themselves. I understand this article was a labor of love and perhaps conscience that you were not paid for. The PACE study, now debunked by you, has caused irreparable harm both individually and to ME/CFS patients as a whole. It is amazing how long this shoddy work went unchallenged except by patients who knew better. We can hold our heads up a little higher thanks to your efforts and will be forever grateful.
Thank you David Tuller for writing honestly about ME/CFS. So few cover this devastating disease. Most of the time when it is covered it is written in such a way that I wish it wouldn’t be written about at all. I have spent most of the last 29 years in bed and always in severe pain due to this plague. I have had 2 close friends die from ME/CFS. Yet, for the most part, it is not taken seriously. People, even family, only see me when I am “pushing”. They only read the belittling crap that has been written in mainstream media. The stigma is heartbreaking. It’s hard to enough to deal with the physical pain, exhaustion, Post-exhertional payback and multitude of other symptoms. Please continue to cover this disease and educate the public about it’s true nature. We need you. I hope your coverage and understanding of the disease will inspire others in your field to take it seriously and dig below the name. The way this disease and its sufferers have been treated has been a complete scandal since the 1980s cluster outbreaks. I deeply appreciate your recent articles, for using your valuable time, resources and I suspect your own funds, to get the word about the flawed PACE study out there. It shows deep dedication to true journalism. It inspires hope not just about ME/CFS, but for reporting in general. Thank you.
The ME/CFS community owes David Tuller a huge debt. Patients had been pointing out the flaws in PACE for years but had been ignored. David’s article started a cascade of events that include the open letter to The Lancet by prominent scientists that David mentions, and the already 10,000-strong petition calling for retraction of the misleading claims. Now another PACE petition, this time focused on the HHS, has been started and I hope that readers will sign it and pass it on. The PACE trial dominates the evidence base for ME/CFS because of its sheer size and its results have been taken at face value in US clinical guidelines by the CDC and AHRQ. These guidelines are causing great harm to patients and must now be reviewed in the light of the revelations about PACE. Please sign the petition and share it widely. Signatures are welcomed from all over the world, because US guidelines are internationally influential. Thank you again, David, from one patient who has been sick since the 1980s and has been wondering what has taken scientists so long to come forward to attack the bad science that is so obvious to patients.
Thank you so very much for speaking out like this! ME is terrible, but the medical attitudes that have fed the public are sick. I have fought and fought to get medical treatment, but the sicker a person with ME becomes, the more limited that is. My hard fought for medical advice is, to “lose some weight” and “get yourself moving”. This from so called educated professionals. It’s sick! Every time that I as a patient, have pointed out any of the obvious flaws in the PACE trial, I have been told that this is “evidence based treatment” and that I have “exercise fear”. It’s really hard feeling the life draining out of your body and knowing that no help is coming, and more than that, that I was blamed as if it was a choice. Thank you a million thank times!
Thank you so very much for speaking out like this! ME is terrible, but the medical attitudes that have fed the public are sick. I have fought and fought to get medical treatment, but the sicker a person with ME becomes, the more limited that is. My hard fought for medical advice is, to “lose some weight” and “get yourself moving”. This from so called educated professionals. It’s sick! Every time that I as a patient have pointed out any of the obvious flaws in the PACE trial I have been told that this is “evidence based treatment” and that I have “exercise fear”. It’s really hard feeling the life draining out of your body and knowing that no help is coming, and more than that, that I was blamed as if it was a choice. Thank you a million thank times!
Thank you! Those two simple words don’t seem enough. Your reporting is like a breath of fresh air to a group of patients who have long felt suffocated by misrepresentation. :)
Dear David Tuller. Thank you so much for the incredible work you have done in drawing attention to the life ruining condition that is ME. As a sufferer I am desperate for the medical profession to take this hideous condition seriously. It has taken away my ability to work, to function as a normal person in daily life, to socialise, to interact with the outside world, to provide an income for myself and my husband and consequently we are in serious danger of losing our hard worked for modest little home. And yet the medical profession here in the UK at least still persists to claim that somehow it is all in my head. As if anyone would willingly choose to go from a full time working productive member of society to a little more than a lonely little vegetable incapable of doing the simplest tasks that people don’t even think about and living a life of unimaginable 24/7 pain. As yet we still have to see exactly what you have shaken out the tree but I know that without people like you we would continue to be left alone to rot in the dark. I can never thank you enough. Yours extremely gratefully. Margaret Smith.
Uninvolved readers may not know that the very treatments PACE championed are widely known within the disease community to seriously and permanently worsen an already horrifying disease in a high percentage of patients. It is impossible that PACE authors do not know this, given how often it is reported, yet in keeping with their other questionable practices; they have refused to even acknowledge this risk. It is a scandal that this has gone on for so long. Thank you for beginning the end of this parody of science, Dr. Tuller. You have left no way for PACE to stand, now that you have exposed its unbelievably serious flaws to the wider scientific community. Many excellent but significantly underfunded biological studies have long waited in the wings for recognition, overshadowed by the rather simplistic and judgmental story that horribly ill patients simply mistook normal sensations for sudden and life-destroying symptoms. I believe PACE will join the annals of shame in medical history — a byword like the Tuskegee experiment. By exposing the lie, you pave the way for truth. It isn’t often that a reporter, no matter how talented, changes the course of medical history. Few radically change the treatment of literally millions of very ill people for the better. You will have done that, Dr. Tuller. Our gratitude to you knows no bounds.
Recommended reading on the subject is Angela Kennedy’s book “Authors Of Our Own Misfortune” for facts, science, history and complete in-depth anaylses of how we got to here. (No, I’m not on commission!)
Thank you David Tuller. What you have done is create a very real conversation outside the ME Community which is something sufferers have needed for as long as I can remember. It is most certainly not just ‘noise’. Regards, Sufferer since 1970 (ironically the year Beard and McEvedy rewrote the ME script and changed a neuro immune disease as defined by the late Melvin Ramsay into ‘mass hysteria’, and in so doing opening the door wide to the Wessely school who have perverted science into fraudulent junk. )
Thank You… You can’t begin to imagine the enormity your writing and its impact is having on so many people’s lives .. Hope is now on the agenda again.. xxx
The CDC never “renamed ME” The Chronic Fatigue Syndrome was a stand-alone entity that was founded upon a new database generated by the 1985 Lake Tahoe “Raggedy Ann Syndrome”. Which the CDC said was “similar to ME” In science, “similar” does not mean identical. The stated purpose AT THE TIME was to study both ME and CFS, and determine if the Raggedy Ann Syndrome was close enough to Ramsay ME that it could be considered the same, but no scientific process was ever done. In fact, people don’t even care what the original Raggedy Ann Syndrome was. I know this, for I am a survivor of this outbreak. The response of the “CFS community” to having this explained has made their disdain VERY clear. I realize that people cemented it in their minds that the CDC chopped off ME and gave the CFS term to the same thing, but if you examine the records closely, there is a distinctive lack of any official process where such a thing ever happened.
Thank you so much for taking the time to do this important work. Our illness is not particularly ‘cool’ and doesn’t attract millions of dollars in funding like some others. As an active member of our local ME support group for many years, I have not seen one person recover from GET, CBT or pacing, and yet this is still trotted out as ‘treatment’ in the UK on the NHS. I have always known that the PACE trial was a load of rubbish, but you have helped us enormously by doing a quality analysis of it. Thank you again so much!
While drowning in a sea of misinformation surrounding this illness, you’ve thrown in a lifeline. The top award our community gives out is gratitude - and you have plenty of it. Heartfelt thanks on a job well done.
Thank you, David. I wonder if you will ever know just how much it meant to us patients for someone “outside” to step in and spell out just how bad the situation is for us. Here in the UK, the medical establishment simply ignores patients, no matter how accurate their comments, no matter how skilled or qualified they are. NICE, the body that determines which treatments are appropriate, reacts only to peer-reviewed studies: even the editor of The Lancet agrees that the peer-review system is unreliable. To get such substantial endorsement from you, and to see the process snowball almost 6 years after the first PACE report was made public, is really uplifting. I’m almost beginning to have hope!
Thank you for speaking the truth.
Thank you so much, David Tuller, for your awesome work on this issue. I’ve been ill with this hideous nightmare of a disease for nearly four decades. In this time I have not seen any journalist dare to challenge the stinking mass of crap that has been allowed to pass as “CFS research” with the laser beam clarity and fierce compassion that you have. The PACE study was as evil as the Death Star, and you are hero with the proton torpedo that has blasted it wide open. Woo-hoo! May every shred of it be blown into eternal oblivion. And may the force forever and always be with you.
Dear David, I don’t think words can adequately express the gratitude and thankfulness of the patient community that someone outside our sphere of influence has noticed that we need help. The pseudo science forced upon us by the Wessely school of psychiatry has done immense damage to people, and I am sure there are many, like myself, who are significantly worse after following advice to keep pushing ourselves. I’ve only been ill for 6 years, a mere blink compared to many, but my life has changed beyond anything I could have predicted. I went from a busy mum of three young teens and full time teacher of small children to someone who can barely get out of bed, almost overnight. I can pinpoint the day I discovered that my legs didn’t work properly anymore and that a simple short trip to the supermarket left me exhausted and agonised. Now I spend my days either in bed, in my recliner or on the sofa. My memory is so poor I can’t retain information for long, and learning new skills takes me weeks. I often can’t find the right words so my family get used to me pointing and describing what I need. I am in constant pain, which I take morphine to relieve, small household tasks like loading the dishwasher are my main job of the day if I’m feeling ok. If I’m not, getting to the loo a couple of times a day is literally all I can manage. And there are people affected with this illness who have to be tube fed, cannot bear being touched because of the pain and find even light and sound makes them ill. These are truly the people we need to advocate for as they’re much too ill to do it for themselves. This is how bad it can get. And how supposedly ethical medical professionals can say that this is a psychological illness that’s merely false illness beliefs and deconditioning in the face of patients as ill as that and all the biomedical evidence that’s now available to them, well, I really don’t think it’s the patients’ “false illness beliefs” they need to be challenging.
I’m so grateful for the light you have shone on this very poorly understood illness. Thanks to your illuminating words I hope less harm will be done.
After 23 years of progressive illness, and many attempts to support myself, I can no longer work. Because it often takes years of appeals to obtain Social Security disability I recently asked my siblings for money to buy groceries. The viriolic and misinformed response I received from my brother, a psychiatrist, pretty much sums up the attitude we patients face on a daily basis. (Note: I never applied for psychiatric disabilty, but rather, ME/CFS. My brother, whom I havent seen in over a decade, makes a lot of assumptions about me and my history without any asking questions. I’m afraid this attitude is all too typical of psychiatrists and medical doctors in general): Me: My food stamps were just cut. I rely on them for half my groceries. I’m 100% disabled and cannot work now. Which of you will step up to the plate so I don’t go hungry? My Psychiatrist Brother: I’ll step up to the plate. You were refused disability because you wouldnt accept psychiatric disability. You were denied physical disability because most respectable medical professionals wouldn’t consider you physically disabled. Depressed, suicidal, unable to get along with superiors, check, check, check. I believe that’s why you are disabled. When you accept that and let a credible psychiatrist help you things will get better. You are trapped by your own stubbornness and poor judgement. Look at your resume. How many jobs did you lose or give up that you blamed on coworkers, management, maltreatment, not being appreciated, etc? It can’t be everyone else, any more than all of mainstream medicine can be responsible for misunderstanding your medical problems. Your tone is absurd and offensive. Dont ask me for money again. No one owes you anything. Apparently the problem is that I am refusing psychiatric care and I feel that my family “owes me” support. Therefore I have to go hungry this Thanksgiving “for my own good” so that they don’t “enable” me. In other words, tough love is what I need to get well, not food or medicine or a roof over my head. Never mind good research! Or simple love and support from my family members. Please, David, if there is anything you can do to expose the sorry story behind the misappropriation of research funding for ME/CFS, I think it would provoke public outrage and help set the record straight with people like my brother. In the meantime, thanks for this long and thoughtful article. As an avid reader of the New York Times, I have long been a fan of your work. Now if we could just get Barbara Ehrenreich and Bob Herbert on board we would have a dream team of investigative reporting and commentary.
You are exposing the harm to ME patients and the wasting of research money. Thank you for giving us hope.
Many thanks, David, for your ongoing efforts to set the record straight! I protest mildly at your self-deprecatory reference to yourself as an “obsessive”. I’d have called you “perspicacious” and “painstaking” instead - with an understandably low tolerance threshold for unjustifiably influential quasi-scientific baloney such as the PACE Trial.
Many thanks, David, for your ongoing efforts to set the record straight! I protest mildly at your self-deprecatory reference to yourself as an “obsessive”. I’d have called you “perspicacious” and “painstaking” instead - with an understandably low tolerance threshold for unjustifiably influential quasi-scientific baloney such as the PACE Trial.
David - Thank you, thank you, thank you - I cannot say it enough - thank you!!!
Thank you, David!!!
Mr Tuller, I do not know where to begin thanking you. I have been severely affected by myalgic encephalomyelitis and fibromyalgia for 28 years, and made much worse by graded exercise. The only ‘treatments’ I have ever been offered are psychobabble. When we patients speak out from our beds, we are labelled dangerous terrorists. You give us hope that the evil done to us will one day be overcome, and that future generations will not have all research and treatment funding for their illness misappropriated by a group of self serving psychiatrists.
Thank you for investigating and exposing the PACE trial for the sham so many of us patients have long know it was. To have a disinterested person speak up for us and to be so thorough and eloquent is a huge step forward. We cannot thank you enough.
I’m so thankful to you. I can’t write much, as I’m very severe at the moment, but just, thank you. I used to be in arts/media/film area before I became severe. I’m currently working on a documentary called ME The Hidden Truth which I started in early 2014. It has a fb page and a website but the website is pretty bare being honest. I’d love to hear your thoughts and use some of your comments in the documentary with your permission of course. There’s no big crew, just me and my carer’s whom I need 24hrs. So it’s slow. But I edit when I’m well enough and am always collecting evidence when able. If you want to email at all, you can reach me here: My aim with this is to educate medical proffesionals, OT’s, Social workers etc how to interact with a very severely ill patient with ME. I hope the footage we have along with evidence we have will prove we are not overstating our needs. I really have to go now. But THANKYOU. Kara
Mr. Tuller, thank you for writing about this misunderstood and underdiagnosed illness. 11 years ago, I fell severely ill with ME/CFS and had to drop out of a masters program at UC Berkeley. Misdiagnosed, doctors encouraged me to try to complete my UC Berkely degree. Going back to school, I quickly became too ill to even do basic things like leave my home or go grocery shopping. A decade later, following the Institute of Medicine report, my physician finally correctly diagnosed me with Chronic Fatigue Syndrome. I would very much like to attend UC Berkeley again. But given the lack of treatments and scarce research money for this disease, my hopes and dreams will likely remain unfulfilled.
Brilliant article….please keep fighting for the truth for all us sufferers.
Dear David Tuller, I truly believe you have made a huge difference in your steadfast determination to make sure others outside the M.E./ CFS community are aware of how badly served we have been by researchers and clinicians for so many decades. I really do think when we look back at the history of how this illness is viewed, your articles will be seen as a major catalyst for change. Patients, charities and our dear Countess of Mar have all challenged the so called ‘evidence based medicine’ on offer in the UK as treatments and roads to recover for M.E. patients but the authority of top psychiatrists and top scientific journals have always held sway. We have been silenced and labelled as a small vocal minority, trouble makers, deluded souls who need psychiatric help etc etc. So the influence your work has is HUGE! Thank you, thank you, thank you.
Great throughts but you fail to include the science that has been done in this area. Try looking on the web at the National CFIDS Foundation and you’ll find proof your thoughts are more than right. Vickee
Way to go, little brother! Both you and the commenters in various venues, including here, are also helping those of us outside the ME/CFS community to better understand the issues, so that we too can push for research that will truly be helpful.
Let me add my voice to this chorus of profound thank yous. I was a lecturer at the J School from 2000 to 2009 when I had to resign due to ME/CFS. Your reporting is a major part in what feels like a turning point in the sad history of this dreadful disease. You probably know, but just in case - - there is a CFS documentary in the works, Canary in a Coal Mine, by Jen Brea that will be released next year. I am the Executive Producer so feel free to get in touch if you want any more information. Again, thank you for your wonderful work.
Thanks so much for all of your reporting on ME/CFS, David Tuller. I am immensely thankful for it — your compassion and thirst for knowledge is greatly valued by the patient community.
Thank you. Since reading your articles about the PACE Trial I have a better understanding of my health and others reactions to it. I had been feeling confused and depressed by all the conflicting research and perceptions. Now I can see things more clearly and feel empowered to move forward.
Heartfelt thanks from an M.E sufferer of 34 years, God bless you David
Thank you so much David Tuller, for speaking up for people with ME/CFS! We desperately need someone like you because most of us do not have the energy to speak up or follow things up. When I first got ill with ME/CFS it felt like something was attacking my brain. I feel brain damaged after having suffered with this illness for over 10 years and am affected cognitively and physically. Just writing this comment is difficult to compose and translate into words what I would like to say. In essence, it is so good to read what you wrote, and I am very grateful to you, thank you!
Thank you so much David Tuller for all the time, energy, and thoughtfulness you have put into exposing what so many of us patients know but whose voices are beneath the contempt of the researchers funded by the insurance industry. You have gotten the ball rolling and given hope to so many.
Thank you David Tuller for this and your other writing on ME/CFS. It is much appreciated by all those whose lives have been hijacked by this disease.
Mr. Tuller, I cried as I read this. Like so many others, I can’t find words strong enough to say how grateful I am for your work regarding ME/CFS. ————- I look forward to one day being well enough to work again, well enough to “make a living.” When that happens, I would like to use my earnings to name something in your honor. A bench with a view? A wing of an academic building? A scholarship? A donation to scientific research? ——- I’m enjoying thinking about it. <3 Thank you.
No where have you discussed the statistics debate about whether it is acceptable to assign numbers to ordinal data in the SF36. Looking at the RAND scale I find the use of numbers assigned to categories of different sizes to be interesting as the width of the scale varies between questions. There cannot be an assumption made that what one person perceives their score to be would be the same as another person and just because they decide that numbers should be assigned does not mean that this is right. Whilst I can see it enables the data to be treated as interval data surely in such an important study this aspect of the instrument used should also be discussed.
Finally I’ve read about people dying from this disease. I have had this debilitating disease since May 1980. In October 1992 my 12 year old son got sick. After 5 months and 15 doctors he was diagnosed with CFIDS. He died after 4-1/2 years of severe disability. This disease has to be taken more seriously.
Thank you. I’m glad you didn’t try for the Cliff Notes version. How can a disease that was listed as one of the 5 most serious new and emerging diseases by CDC 25 years ago, remain so invisible? CDC admits that 85% of victims - AT LEAST 850,000 patients - have no diagnosis at all. How can that be okay? Those of us who are afflicted cannot understand this. What we do know is that when we try to explain the disease to others, their eyes soon glaze over. Because it is so complex. The British psychiatrists behind the PACE trial have had an inordinate influence on policy worldwide, including the US. This is a story that is very hard to tell. You did a great job. I am grateful that Vince Racaniello allowed you to post it on his virology blog.
PS - Thank you so much for sticking with this difficult but important subject. You are our hero.
THANK YOU!! You’ve opened the door wide open for shedding light on this disease, the corruption around it and the mistreatment of long-suffering patients. Your explosive exposé has helped bring it to the attention of the people in power who make decisions affecting all us patients. I’m 26 years on with this devastating disease and you are a hero!
As so many have most eloquently expressed the reality of this illness and the shocking “treatment”I can only add another huge “thank you”after 24years of an existence I wouldn’t wish on another human.Keep up your truly vital work.You are a hero to the ME community.God bless you,sir.
Bravo, David Tuller. You have done all of us with ME/CFS a great service by not only your expose of the phony PACE trials, but for all of your excellent reporting over the years. Your article in the NY Times on Stanford’s brain studies helped me to understand the phenomena I had read about in other media but couldn’t quite get. I am dealing with the 30th anniversary of my illness this month. I find as I get older that I have less stamina and it’s hard for me to do even basic chores, or they wait for weeks until I can get to one or two. I’m glad I live in a big city so I can order food delivered, or I would have gone without at times. The comments here are very interesting. I just learned a few things about my own symptoms. They aren’t so weird after all! Other people have experienced them and I recognize that it’s all a part of the weird, complicated disease. I hope that the NIH hurries up and does its research and wish that Dr. Ron Davis, and the other scientists at Stanford as well as other institutions can quickly find out the mysterious causes and biomarkers for this disease and treatments. Thanks again.
Thank you so much!!!
I don’t think the ME Community could ever thank you enough. What the rest of the world don’t see is our severely ill. 25% of our numbers are so severely ill they will never leave their beds again. They are tube fed and some are only teenagers. In Denmark the psychiatric stand is that ME = insanity. They forcibly removed Karina Hansen from her loving home using police. She was quickly made a ward of the state and forced to participate in CBT & GET. She is now living in a care home & brain damaged. She is 24yrs old. There is no accountability when it comes to the abuse of victims of myalgic Encephalomyelitis. David Tuller has changed that and for that reason we feel “hope” is on the horizon for us.
Well done brother
David, thank you for being driven to have a real impact on people’s lives instead of just adding to the noise. * * * Note to other investigative journalists: If you want to make a real difference on this planet — in fact, if you want to become a hero — take the time to research this story. You will find, and you can easily expose, the total disregard of ME patients by the government, the medical community and the media for this group of 1 million disabled Americans and 17 million worldwide. * * * There are lots of angles to this story, but here is a major one: What happened to Dr. Elaine Defreitas’s discovery 20 years ago of a retrovirus in ME/CFS patients, and Dr. Judy Mikotivis’s discovery of the same in 2009, and Drs. Alter and Lo’s confirmation study shortly there after. If you take Dr. Silverman’s xmrv clone out of the equation, there was still retroviral material discovered in the patients. Why was it “disappeared”? An investigative journalists dream story. I hope someone decides to explore this.
Great article. Thank you for all of your hard work.
Bravo! David Tuller has achieved a triumph for Journalism, Science & Public Health, as much as for a beleaguered global community of patients & families. It will be very telling whether this story will be taken up by any UK journalists, and whether they will find an editor to publish, given the narrative spun by the UK Science Media Centre.
Thank you so much David Tuller! As a person with ME and what the CDC calls CFS. You took on a disease that most journalists will not touch or will not spend time to accurately report! Your dedication and support to our patient community is amazing! I want to thank you personally. Your investigative journalism on the PACE Trial will be a game changer for us! Thank you so much for writing about the FACTS of our disease and issues!
Thank you for covering what is turning into my biggest pet peeve —” When I would mention the issue, others said they were tired too.”— THIS! This is exactly what drives me bonkers. When the “fatigue” I feel has been compared to what late-stage cancer patients go through… then NO you (random person asking me about my life) don’t get to compare your tiredness to my utter life-crushing exhaustion. I spent enough years simply trying to get doctors to believe and help me. My marriage and family almost fell apart in the process (because even the best of husbands will slowly start to lose faith when doctors start to tell you you’re imagining everything). I don’t need anymore misunderstanding about my REAL disease, thank you very much! **Rant Over** So thank you very very much for this article (I’ll read the other one soon, I promise). Hopefully we’ll soon get some understanding. From there, maybe we’ll even get some treatment!
14,000 words can’t begin to thank you for your commitment to bringing the ME & cfs community’s plight into the light. Your efforts are indeed heroic to a long maligned population. May we all live long enough to see lights like yours obliterate the shadows that voluntarily and involuntarily hide our plight.
Thank you for writing this. I hope things will now begin to improve for ME patients around the world. I believe the next battle is getting a correct diagnosis for those patients labelled with ME and Chronic Fatigue Syndrome. The fear that the conditions were psychosomatic has meant that many patients did not have other conditions excluded before being diagnosed. I was diagnosed with ME 25 years ago but more recently I have been diagnosed with Ehlers Danlos Syndrome. I have since met many other EDS patients who were also misdiagnosed with ME and have suffered years of neglect caused by the ignorance of their connective tissue disorder. I also have POTS secondary to EDS which is manageable with the right treatments. This was missed because all my symptoms were blamed on ME and the psychological dogma meant doctors were reluctant to test me for other conditions as they feared it would reinforce my so called sick role behaviour. Now I have a better understanding of my pain and fatigue and I wouldn’t be surprised if a significant number of ME patients are also found to have EDS and POTS if they were evaluatedby a physician experienced in the conditions.
Having looked at the Chalder Fatigue Scale it suffers from the same issues of using the Likert Scale as the SF36. further research by Jackson(2105) details the scale is used to differentiate it from CFS. occupational Medicine Oxford Journals
Thanks for persevering. It’s been so frustrating to see newspapers reporting on the press releases of those pushing CBT and GET, not bothering to do any research of their own into the mountains of scientific evidence that their studies are flawed and their premises are wrong. I fear that the psychiatrists involved will still put out those press releases, and the media will still report them uncritically, but at least those of us who know better will have a link to post in the comments.
I don’t even know what to say. Except you have my sympathy.
Thank you for your efforts on our behalf. I really can’t tell you how much they are appreciated. You are making a huge difference in our world. I have faith that eventually the truth about all of this will be more fully recognized (truth tends to do that), but every moment wasted on inaccurate assumptions, misspent funding, debate, disbelief, uncertainty, etc. is another moment we’re not getting the progress we should be. There are so many of us out here, and we so desperately want our lives back. Thank you for being a part of that for us.
Thank you, David. My son suffers severely from this horrbile illness without a proper name and proper recognition. My father was a doctor who caught lifetime severe ME from the Royal Free outbreak in 1955, for so long not believed to be a real illnes, so I’ve seen a lifetime of disbelief and derision by the medical profession and those with vested interests. This has been countered effectively be precious few, such as yourself. Thank you for what you have already achieved for ME.
Mr.Tuller After researching and writing about ME/CFS as extensively as you have do you have a hunch or maybe a gut feeling as to what will end up being found to be the cause of this illness?
David, you truly are the hero of the ME community for your investigative reporting into the absurd PACE trials. We have some hope now that this may be the beginning of real research and awareness that can lead to treatment after decades of patients being disregarded, abused, humiliated and just swept under the rug. Thank you!
Thanks for this article and your open-minded approach to explaining to the world what medical personnel have tried to debunk. During my court case in the mid 2000s, when I brought forward the published evidence that me/fm/mci were real and disabling conditions, the medical experts for the defence came back with the terms. “junk science” and not scientifically or medically endorsed. Finally this year, I have been validated by medical experts that my chronic condition is real; and I am finally receiving the respect and support from the medical profession that I so lacked for almost two decades. Through my own research, I have been treating myself. To help with my emotional healing from the abuse I received from the medical community, I wrote my book Judging Judi, available at Lulu.Com
CFS/ME, or whatever label is used to address this infliction, it has to be addressed. labelling has been one of the set-backs as to why the symptoms were not taken seriously and research has been stalled. As I said to the last specialist I consulted, People with this illness are not being treated properly, while the medical and scientific community still squabble over a name for it.
One-third of my life has been destroyed by this disease and I am still explaining that fatigue is not the problem. I just got rejected by a general practitioner because I would not agree to graded exercise therapy. I told her assistant that this had been debunked and I could hear the eye-rolling over the phone. Many days I wish this disease were inevitably fatal — then I could have recognition from others and I could have a process as I tied up my affairs. It is like being stuck in a pit of quicksand — every effort to help oneself makes the situation worse.
This is another inaccurate, biased depiction of the issues and politics. It seems more to play off the ME/CFS script, as ALL US groups do, to spin and force the false ME/CFS narrative. Corrections: WHO does NOT say that ME and CFS are synonymous terms. This has been explained many times and ignored. CDC never “renamed” Myalgic Encephalomyelitis as CFS. CDC has never said that ME is CFS. CFS was a diagnosis based on the Tahoe outbreak which, I believe, CDC said was similar to ME. Similar does not mean the same. US health agencies overall have not gone the ME/CFS route. This is the problem which should be addressed, not accepted and reported. ME/CFS is NOT a compromise. Compromise is where each group or stakeholder gets or gives up something. In the ME/CFS realm, it comes across as benefiting CFS patients while it harms ME patients. These inaccuracies and misrepresentations dovetail to present an erroneous picture. Yes PACE is a “bad,” flawed trial. This was exposed years ago. Reaction was swift and damning. So lots of hype and exaggeration to appeal to the masses (which is obviously effective and not that hard to do), while actually obscuring and contributing to the real problems. PACE is on CFS, not ME. Has been stated as such. ME/CFS makes the connection and switch, which does much more harm than any one study, no matter how”bad” it is. It would seem that the author could understand these issues and articulate them more clearly. Or would expect more from Berkley.
Thank you, Mr. Tuller. This disease may be named CFIDS; it many be named CFS; it may be named ME; it may be named SEID; it may be named The Alphabet Disease. I don’t care. I only know I have had this damn disease for just over 40 years and I cannot adequately express my gratitude for your diligent work in bringing this disease to the world’s attention and setting things straight about the PACE study. As one who was advised to do a physical therapy course of graded exercise therapy years ago. As one who could not quite complete that course because of a systemic total collapse that I never recovered from. As one who was completely bed fast for many months after that collapse and who never again recovered to the level of health prior to that collapse, I hope your voice is heard loud and clear throughout the research community and that Lancet retracts the article posthaste. PLEASE keep shouting the message that studies that advocate GET are harming people with this disease. We now know is the worst thing one can do if one has this disease and those of us who tried it and were harmed are angry that some ignorant doctors and scientists STILL recommend it. Thank you once again for speaking out about those ignorant beliefs.
I just wanted to thank you David for your diligence and dedication to distinguish fact from fiction in the grossly misunderstood and misdiagnosed saga of Fibromyalgia. I have steadfastly refused to read any of the literature as it immediately infuriates me how ignorantly and inaccurately they portray the illness and insist in accusing sufferers of it being “all in our heads”. I find this condescending attitude unconscionable and added to the real pain and limitations of my life, too offensive to handle. After yet another very bad night and waking crying with the pain, my husband found your article and gave it to me to read. While I am very grateful that you have persevered and broken through the absolute and utter rubbish that has been pedalled as authoritive medical fact, I am at a loss and so incredibly angry that it is still ongoing and took so long for a breakthrough. Anyone, as evidenced by all the previous comments, would tell you that we are challenged enough trying to deal with chronic and constant pain and highly compromised quality of life without being labelled “head cases!” That is such a cruel stigma to further add and does us such a disservice in the perception of the public. It has the effect of making us withdraw even further and adding to the trauma of what is actually a very difficult disease to live with, considering it’s longevity and intensity. I challenge anyone to live with the constant pain and all the limitations it imposes on you, over a number of years and then write the insulting rubbish that is published and widely accepted as as accurate. I too used to be a vivacious, social and energetic teacher who has been reduced to a struggling part time lesser role and in bed recovering from the exertion the rest of the week. I worry constantly how much longer I can do this so to suggest it is self inflicted deflates me completely. How can people be so obtuse and steadfastly refuse to listen to the patients? It’s not as though there’s not a significant number of us battling on our own hopefully with family support. I’ve always remarked to my husband that I don’t mind that the medical profession do not understand the condition or have a cure but please - do not add to the suffering by inferring it is not real. That is unforgivable like beating an innocent child - it’s indefensible and incredibly unjust. Sorry for the ramble David but it’s of paramount importance for you to get the feedback from the great unheard mass and know how valuable and life changing your investigative work is. I just hope you are being funded and can continue shining a spotlight so future unfortunate sufferers do not have to battle such a cruel stigma as well as cope with a very real and debilitating life changing illness. To suggest any of us, if we had a choice, would remain pain ridden or bed ridden is ludicrous and defies belief. Thank you David for your time and concern. I hope life is kind to you as one of the good guys trying to effect meaningful change.
Thank you for being a champion for the ME/CFS community. Every thank you that you are receiving represents thousands more from those who are too sick to read or process or respond to your blog, but none-the-less are eternally grateful for your work.
Thank you @Joanne Tuller for being an “outsider” who is taking an interest in learning and being educated about this horrible illness. I know with David as your brother, you have an exceptional reason for reading. But I wanted to let you know how much it means to read such a kind comment by a non-patient , non-caregiver of ME/cfs. We need more people like you ! I hope you will share with your friends and help others to learn too. It will make a big difference. Just the idea of it already has to me. Thank you.
Thank you, Mr. Tuller, from the bottom of my heart for bringing the truth to light about the PACE trials. I have battled ME for 34 years. My disastrous results from GET and CBT caused me to lose the ability to function in society in any meaningful way. I am living proof of how harmful they are. You have validated to suffering of countless numbers of us…..the invisible thousands if not millions who live out a painful existence in a dark and isolated condition. Thank you again for being a beacon of hope for us.
Like so many others here, I want to thank you. As I re-read your article, I realized that the deep well of gratitude comes from finally feeling understood by someone - particularly someone who is not sick with this. So thank you, so very much, for understanding, for actually SEEING us for who we really are - normal people struck down by a horribly debilitating, devastating disease.
Thank you, Mr Tuller, for your much needed voice of reason and truthin this contrived morass affecting so many sick people. My son has had ME for over seven years, myself for about four.
Hi , I have spent four years trying to understand my me I have now been diagnosed with pots a nd eds and mast cell activation disorder . I don’t know if I still have me as well but u feel me patient should be tested more sufficiently . I have had to go down to my gp everyday for them to take me seriously sometimes carried in as couldn’t walk