If your doctor diagnoses you with chronic fatigue syndrome, you’ll probably get two pieces of advice: Go to a psychotherapist and get some exercise. Your doctor might tell you that either of those treatments will give you a 60 percent chance of getting better and a 20 percent chance of recovering outright. After all, that’s what researchers concluded in a 2011 study published in the prestigious medical journal the Lancet, along with later analyses.
Problem is, the study was bad science.
And we’re now finding out exactly how bad.
Under court order, the study’s authors for the first time released their raw data earlier this month. Patients and independent scientists collaborated to analyze it and posted their findings Wednesday on Virology Blog, a site hosted by Columbia microbiology professor Vincent Racaniello.
The analysis shows that if you’re already getting standard medical care, your chances of being helped by the treatments are, at best, 10 percent. And your chances of recovery? Nearly nil.
The new findings are the result of a five-year battle that chronic fatigue syndrome patients — me among them — have waged to review the actual data underlying that $8 million study. It was a battle that, until a year ago, seemed nearly hopeless.
When the Lancet study, nicknamed the PACE trial, first came out, its inflated claims made headlines around the world. “Got ME? Just get out and exercise, say scientists,” wrote the Independent, using the acronym for the international name of the disease, myalgic encephalomyelitis. (Federal agencies now call it ME/CFS.) The findings went on to influence treatment recommendations from the CDC, the Mayo Clinic, Kaiser, the British National Institute for Health and Care Excellence, and more.
But patients like me were immediately skeptical, because the results contradicted the fundamental experience of our illness: The hallmark of ME/CFS is that even mild exertion can increase all the other symptoms of the disease, including not just profound fatigue but also cognitive deficits, difficulties with blood pressure regulation, unrestorative sleep, and neurological and immune dysfunction, among others.
Soon after I was diagnosed in 2006, I figured out that I had to rest the moment I thought, “I’m a little tired.” Otherwise, I would likely be semi-paralyzed and barely able to walk the next day.
The researchers argued that patients like me, who felt sicker after exercise, simply hadn’t built their activity up carefully enough. Start low, build slowly but steadily, and get professional guidance, they advised. But I’d seen how swimming for five minutes could sometimes leave me bedbound, even if I’d swum for 10 minutes without difficulty the day before. Instead of trying to continually increase my exercise, I’d learned to focus on staying within my ever-changing limits — an approach the researchers said was all wrong.
A disease ‘all in my head’?
The psychotherapy claim also made me skeptical. Talking with my therapist had helped keep me from losing my mind, but it hadn’t kept me from losing my health. Furthermore, the researchers weren’t recommending ordinary psychotherapy — they were recommending a form of cognitive behavior therapy that challenges patients’ beliefs that they have a physiological illness limiting their ability to exercise. Instead, the therapist advises, patients need only to become more active and ignore their symptoms to fully recover.
In other words, while the illness might have been triggered by a virus or other physiological stressor, the problem was pretty much all in our heads.
By contrast, in the American research community, no serious researchers were expressing doubts about the organic basis for the illness. Immunologists found clear patterns in the immune system, and exercise physiologists were seeing highly unusual physiological changes in ME/CFS patients after exercise.
I knew that the right forms of psychotherapy and careful exercise could help patients cope, and I would have been thrilled if they could have cured me. The problem was that, so far as I could tell, it just wasn’t true.
A deeply flawed study
Still, I’m a science writer. I respect and value science. So the PACE trial left me befuddled: It seemed like a great study — big, controlled, peer-reviewed — but I couldn’t reconcile the results with my own experience.
So I and many other patients dug into the science. And almost immediately we saw enormous problems.
Before the trial of 641 patients began, the researchers had announced their standards for success — that is, what “improvement” and “recovery” meant in statistically measurable terms. To be considered recovered, participants had to meet established thresholds on self-assessments of fatigue and physical function, and they had to say they felt much better overall.
But after the unblinded trial started, the researchers weakened all these standards, by a lot. Their revised definition of “recovery” was so loose that patients could get worse over the course of the trial on both fatigue and physical function and still be considered “recovered.” The threshold for physical function was so low that an average 80-year-old would exceed it.
In addition, the only evidence the researchers had that patients felt better was that patients said so. They found no significant improvement on any of their objective measures, such as how many patients got back to work, how many got off welfare, or their level of fitness.
But the subjective reports from patients seemed suspect to me. I imagined myself as a participant: I come in and I’m asked to rate my symptoms. Then, I’m repeatedly told over a year of treatment that I need to pay less attention to my symptoms. Then I’m asked to rate my symptoms again. Mightn’t I say they’re a bit better — even if I still feel terrible — in order to do what I’m told, please my therapist, and convince myself I haven’t wasted a year’s effort?
Many patients worked to bring these flaws to light: They wrote blogs; they contacted the press; they successfully submitted carefully argued letters and commentaries to leading medical journals. They even published papers in peer-reviewed scientific journals.
They also filed Freedom of Information Act requests to gain access to the trial data from Queen Mary University of London, the university where the lead researcher worked. The university denied most of these, some on the grounds that they were “vexatious.”
Critics painted as unhinged
The study’s defenders painted critics as unhinged crusaders who were impeding progress for the estimated 30 million ME/CFS patients around the world. For example, Richard Horton, the editor of the Lancet, described the trial’s critics as “a fairly small, but highly organised, very vocal and very damaging group of individuals who have, I would say, actually hijacked this agenda and distorted the debate so that it actually harms the overwhelming majority of patients.”
Press reports also alleged that ME/CFS researchers had received death threats, and they lumped the PACE critics in with the purported crazies.
While grieving for my fellow patients, I seethed at both the scientists and the journalists who refused to examine the trial closely. I could only hope that, eventually, PACE would drown under a slowly rising tide of good science, even if the scientific community never recognized its enormous problems.
But with the National Institutes of Health only funding $5 million a year of research into chronic fatigue syndrome, it seemed like that could take a very long time.
Then last October, David Tuller, a lecturer in public health and journalism at the University of California, Berkeley, wrote in Virology Blog a devastating expose of the scientific flaws of the trial. Tuller described all the problems I had seen, along with several more. The project was a remarkable act of public service: He isn’t a patient, yet he spent a year investigating the trial without institutional support, legal backing, or remuneration.
And, at last, the criticisms gained traction.
Racaniello and 41 other scientists and clinicians published an open letter to the Lancet calling for an independent investigation into the trial and saying “such flaws have no place in published research.” Rebecca Goldin, the director of Stats.org, an organization that works to improve the use of statistics in journalism, eviscerated the trial’s design in a 7,000-word critique.
In the meantime, a Freedom of Information Act request from Australian patient Alem Matthees was making its way through the legal system.
Matthees had asked for the anonymized data necessary to analyze the study using its original standards for success, but Queen Mary University of London had refused the request, arguing that malicious patients would break the anonymization and publish the participants’ names to discredit the trial. It again cited the death threats.
The court rejected these claims a month ago, calling them “wild speculations” and pointing out that the researchers themselves acknowledged in court that neither they nor PACE participants had received death threats.
Startling results from a re-analysis
Just before releasing the data,Queen Mary University of London did its own re-analysis on the question of how many patients got better, at least a little bit. Their data showed that using the study’s original standards, only 20 percent of patients improved with cognitive behavior therapy or exercise in addition to medical care, not 60 percent as claimed in the Lancet.
And even the 20 percent figure might be misleading, because the re-analysis also found that 10 percent of participants improved after receiving only standard medical care. That suggests that 10 percent in each of the treatment groups would likely have improved even without the exercise or therapy, leaving only 10 percent who were significantly helped by those interventions.
As for the claim that 22 percent of patients who received either treatment made an actual recovery? That went up in smoke when Matthees analyzed the raw data with the help of his colleagues and statisticians Philip Stark of the University of California, Berkeley, and Bruce Levin of Columbia University.
Their analysis showed that had the researchers stuck to their original standards, only 4.4 percent of the exercise patients and 6.8 percent of the cognitive behavior therapy patients would have qualified as having recovered, along with 3.1 percent of patients in a trial arm that received neither therapy.
Importantly, there was no statistically significant difference between these recovery rates.
The PACE researchers, the editor of the Lancet, and the editors of Psychological Medicine (which published the follow-up study on recovery) all declined to comment for this article.
Simon Wessely, president of the UK Royal College of Psychiatrists, defended the trial in an email exchange with me. He argued that some patients did improve with the help of cognitive behavior therapy or exercise, and noted that the improvement data, unlike the recovery data, was statistically significant. “The message remains unchanged,” he wrote, calling both treatments “modestly effective.”
Wessely declined to comment on the lack of recovery. He summarized his overall reaction to the new analysis this way: “OK folks, nothing to see here, move along please.”
‘A classic bad study’
But it doesn’t appear that outside researchers are ready to “move along.”
After reviewing the new analysis, Jonathan Edwards, a professor emeritus of medicine at University College London said he was unconvinced that these small subjective improvements indicated the patients genuinely felt better. “They’ve set this trial up to give the strongest possible chance of there being a placebo effect that you can imagine,” he said.
“This is a classic bad study,” said Ron Davis, director of the Stanford Genome Technology Center and director of the Science Advisory Board of the End ME/CFS Project. He emphasized an additional problem: The study used such a broad definition of the disease that it likely included many patients who didn’t truly have ME/CFS at all.
“The study needs to be retracted,” Davis said. “I would like to use it as a teaching tool, to have medical students read it and ask them, ‘How many things can you find wrong with this study?’”
Retractions are rare, however, and erasing the impact of this flawed research will take much work for years to come.
After a sustained effort by ME/CFS advocates, the federal Agency for Healthcare Research and Quality, just changed its recommendation to read that there is insufficient evidence to justify cognitive behavior therapy or graded exercise. But many more public health agencies continue to point patients toward them.
And efforts to propagate this approach continue: A trial of graded exercise in children with ME/CFS has recently begun, and patients are protesting it.
Watching the PACE trial saga has left me both more wary of science and more in love with it. Its misuse has inflicted damage on millions of ME/CFS patients around the world, by promoting ineffectual and possibly harmful treatments and by feeding the idea that the illness is largely psychological. At the same time, science has been the essential tool to repair the problem.
But we shouldn’t take solace in the comforting notion that science is self-correcting. Many people, including many very sick people, had to invest immense effort and withstand vitriol to use science to correct these mistakes. And even that might not have been enough without Tuller’s rather heroic investigation. We do not currently have a sustainable, reliable method of overturning flawed research.
And rectifying PACE will take more than exposing its flaws. The lingering doubt it has cast on the illness will only be fully dispersed when we’ve finally figured out what’s really going on with the disease.
For that, we need to invest in some serious, good science. The kind I continue to love.
Julie Rehmeyer is a math and science writer. Her memoir “Through the Shadowlands,” describing the science and politics of chronic fatigue syndrome and other poorly understood illnesses, will be published by Rodale in May.
I congratulate you on a measurable success against a dogma in government funded research that proposes an outcome and then publishes to support it. This reeks in so many ways that the entire system becomes suspect. Peer review should be the gold standard by which research is either upheld or withers under the scrutiny of scientists who endeavor to further their discipline for the good of mankind. Setting up a conclusion and then perpetrating fraud in support of your favored outcomes should be grounds for humiliation and ouster from the field. That practice has more in common with shysters and con-men than scientific disciplines and research. To then publish, well, the failures there are so profound that one has to conclude that there is an agenda much larger than just personal enrichment and increased funding for further “work”. Scientists should take this study and dissect it and the perpetrators in such a way as to hopefully glean from it the nuggets of motive, and then shame those people into oblivion. Congratulations again and I sincerely hope that you find the answers and the justice you are looking for.
Huh. The official line on CFS was wrong, and people had to fight to get that out. The official line on dietary fat was wrong, and people had to fight to get that out, while being smeared and having their careers destroyed. The official line on salt was wrong, and………still believe in global warming?
I think NASA has sufficient funding to prove Climate Change, let alone all the obvious signs such as the raise in world temperatures for the last 5 years and all the other research.
There’s been no significant global warming for about 18 years, until the recent El Niño, a phenomenon well known to be unrelated to the greenhouse effect. The problem is funding; skeptics receive no funding; believers receive billions. Of course, the believers will say whatever the government asks them to.
It’s an open secret that temperature records have been tampered with. Phil Jones, a UEA scientist, replied to a request for the original temperature records thus: “Why should I make the data available to you, when your aim is to try and find something wrong with it?”
After repeated requests and further stonewalling, Jones finally claimed, “We…do not hold the original raw data but only the value-added (i.e., ‘quality controlled’ and ‘homogenized’) data.” This is the famous “dog ate my data” incident. This [alleged] destruction of the records effectively prevented replication of Jones’s work, which has been used (along with other misinformation) to justify EPA limits on carbon dioxide emissions, action that will ultimately cost consumers hundreds of billions of dollars and possibly our liberty.
It is not that long since Sciatica, whiplash, and other spinal injuries were dismissed as imaginary. RSI still is dismissed by some.
Are there really biomarkers for CFS ? There seems to b a lot of confusion about them, as the absence of HHV-6 & 7 are indicative of CFS when someone is fatigued.
Shane, while there are numerous known abnormalities commonly found in ME and CFS patients, there is not yet an acknowledged biomarker. That may be changing very soon.
What has hindered the search for biomarkers more than anything has been a near-total lack of funding, even though this illness is at least twice as common as multiple sclerosis. Exacerbating the lack of funds has been the waste of funding on shoddy psychological research, largely based on the theories of Wessely and on research like or based upon PACE. Just the PACE study, including the authors’ legal attempt to withhold data, equals about two full years of all international funding combined that is available for research into this disease. In the US, research funds are so hard to come by that the likes of Ron Davis (human genome project) and Ian Lipkin (SARS, HIV discovery) have taken to crowdfunding to be able to do research!
Somebody certainly IS confused when you can write that “the absence of HHV-6 & 7 are indicative of CFS when someone is fatigued.” I have diagnoses of ME and CFS, and when not on an immune drug, I have HHV-6A and CMV (cytomegalovirus, or HHV-5) active in my spinal fluid (by PCR). I have been in numerous studies looking for biomarkers and the never-ending search for etiology.
Despite the dismissive name “Chronic Fatigue Syndrome,” fatigue is not the principle symptom of this disease. I did not go to my doctor saying I was “tired;” rather, I suddenly could not read the written word. I could not understand what people were saying to me. I would substitute the wrong word (right category) into a sentence without realizing it (“How is the tablecloth coming” when the right word should have been puzzle). I was a college professor, and one could see how those problems could make it very difficult to lecture (and even harder for my poor students to figure out what I was trying to say!).
At home, I would start walking across a room and just … stop … and then finish walking, as if I hadn’t paused. I once poured an entire pot of coffee into a silverware drawer convinced it was a cup (I realized, after admiring the pretty dark brown waterfall, that I had made a mistake only after the entire pot was empty). My daughter used to have to fasten me into my seatbelt in the car because I couldn’t figure out what those metal things were used for. Eventually I could walk, with the support of my golden retriever, to the bathroom and back, and that was it. I went outside the house when someone pushed me in a wheelchair, but most of the time I stayed home.
At the same time, I suffered severe pain behind my eyes and in the back of my neck 24/7, and migraine-level headaches (except they were symmetrical). My large muscles hurt constantly, particularly my thighs and my upper arms.
I had ataxia, dyslexia, expressive dysphasia, blackouts, absence seizures, disorientation, sensitivity to light and noise, wakeful sleep, unrefreshing sleep, and massive confusion. I also have NMH/POTS and Hashimoto’s thyroiditis (both being treated).
I was negative for all testing the first four years after my collapse, but in 1998 Dharam Ablashi, the co-discoverer of HHV-6 and its two variants, tested a half-dozen of us with CFS diagnoses, (using both PCR and antibody tests) and found I not only had HHV-6A (the kind found in AIDS), but the viral load was much higher than necessary for diagnosis. I also tested positive for the immune defect 37kDa Rnase-L.
In the years since then, when off meds and in relapse, I have been found to have abnormal SPECT scans, abnormal Holter monitor tests, very abnormal CPET scores – low enough that I met the definition at SSDI for permanent cardiac disability, and other viruses have reactivated in my system, notably EBV, HHV-7, and Coxsackie B. My natural killer cell function is near zero, and I have an abnormal cytokine pattern.
On treatment, I am not normal – I was too sick for too long – but I can walk barefoot on a beach, or far enough on a trail that I can’t hear the sound of cars any more. I can read a book. I can live independently. I can drive a car. I understand what people say to me, and they understand what I say to them. And the headaches, eye pain, and neck pain are GONE. I do still have significant muscle pain.
Anyone who has been mostly bedridden with this disease would understand how intoxicating it is to be able to do all that.
The CBT/GET orthodoxy has made patients worse, it has taken most of the paltry funding available for this disease, and it has kept the public convinced it is a silly disease of silly women, thereby contributing to the paltry amount of research $$s available.
In the UK, 250,000 patients are believed to have this disease; it is over one million adults (and uncounted children and adolescents) in the US. In the US, only 15% of patients have a diagnosis – that leaves at least 850,000 with this serious disease undiagnosed. And the prevalence must be increasing, because new patients are coming down with it (I believe there has been a new set of cluster outbreaks), while few “overcome” the disease.
Public policy towards people with this disease is simply cruel. In the US, UK, and Canada, the diagnosis too often leads to impoverishment, whether a rocket scientist, a neonatal specialist, a respiratory therapist, an emergency room doctor, a PR wizard, or a professor of history. (Those are all occupations of friends before they became sick.) And people die. The son of a friend died at 23 of a massive heart attack; the autopsy showed both old and new viral scarring of the heart muscle. My dear friend Pat, the rocket scientist, also died of a heart attack this year, age 67. Another friend died of pneumonia at the age of 55 after 25 years with the disease. A 39-year-old died of cancer because she was too sick to withstand the chemo therapy. She had been sick half of her life. And then, yes, there are suicides. When supposedly well-regarded academicians cook the books on an important study to make it appear that CBT/GET cure the disease – when they don’t – NHS doesn’t offer alternatives. When NIH allocates $2-$6 per person per year for this disease, good research does not get funded (to the point that Columbia and Stanford University senior researchers who had never been denied before, are forced to crowdfund when they begin to work on this disease) – a patient, bedridden in pain and confusion, begins to see only one way out. I have also lost dear friends to that route.
Then there is Sophia Mirza, who died of dehydration because doctors who thought ME/CFS was a somatoform disorder would not believe her when she said she couldn’t swallow (the autopsy confirmed her physical damage, including damage to the basal root ganglia). She was one of many in the UK who were sectioned against their will into psychiatric hospitals because they “refused” to do the graded exercise like good little patients. At the moment, young Karina Hansen languishes in a Danish mental hospital because a doctor (not her doctor, and not their family doctor) decided she needed to undergo CBT/GET. She is not permitted to see her family because they “contribute to her false illness beliefs” and her newer diagnosis of persistent refusal syndrome for not [being able to?] going along with the prescription of graded exercise.
The damage done to people’s lives, to their families’ lives, to medical science, and eventually to the public at large, by ignoring the serious biomedical parameters of this disease and portraying it instead as a version of neurasthenia, will one day haunt everyone who had been a part of the deception.
So I thank David Tuller for his article exposing the problems with PACE on Vince Racaniello’s virology blog:
This article, on Sense about Statistics:
Hard work by patients such as Ireland’s Tom Kindlon and Australia’s Alem Mathees. And Julie Rehmeyer.
And I thank all those who are still trying to find biomedical answers, at the possible cost of their careers because it is so difficult to find funding.
The biopsychosocial school that brought us CBT/GET has had its 25 years of Kuhnian paradigm fame, all the while harming more patients than it has helped. To find that they actually disguised the null results of the study that was supposed to definitively prove the effectiveness of this treatment, massaged the data until it could look like there were mild but statistically significant improvements, should be enough to end their careers. Time’s up. Go find something else to do.
Response to Mary’s Reply:
Your comments are very informative and well-informed, as we might expect from your high academic achievements.
You mentioned some serious violations of patients human rights in your post, with specific examples. Perhaps you could elaborate on these claims, which are deeply worrying [seem to imply that there are instances where families have succeeded in getting relatives suffering from ME/CFS diagnosed as simply ‘too lazy to move/speak’ consigned to a mental hospital by their friendly local GP?]
Keep up the excellent work, I am in Germany where Doctors very rarely acknowledge CFS exists at all. We so need reliable research and patients need a voice.
I have MS and was told it was psychosomatic though no therapy was offered. Years later, I tried the jugular vein angioplasty. I got significantly worse but somehow their research twisted my outcome into being successful and showing improvement. All flawed. I too have been told to swim and exercise which completely wipes me out for days. I can stand for a few seconds but not walk so use a wheelchair. I wish you luck in all your research for yourself and others.
Hang on a mo. I am not British, but accusing them of staying in th dark ages ! What about th USA, where circumcision is still dominant, with doctors claiming that it reduces the risk of infection ? If God had meant humans to be without foreskins, he would have made us that way, or in evolutionary terms, those without, would have become dominant, with the others dying out.
Chronic fatigue is a bullshit diagnosis to begin with.
@KH: Try living in my skin. One day, I can walk a mile, the next I am gasping for breath, felling dizzy, nauseous, my eyes go in n out of focus, my mouth and nostrils are dry to the point of stinging. 4 hours physical work will flatten me for 3 or 4 days of those symptoms while just trying to live and cook. I have lived with this for 10 years while on medication for depression, high blood pressure, and disturbed sleep.
@KH: Ineffective, with people who are already struggling on so many levels, is almost certain to be further demoralising. In that, it IS harmful, maybe even devastating.
If you mean the illness does not exist, you are wrong. If you mean it is not really a diagnosis, you are right. As there are no established diagnostic markers as yet, it is actually still a default diagnosis, i.e. when you do not suffer from any of the other diseases with the same symptoms but where there are diagnostic markers leading to a definite diagnosis. And there are no proven medical treatments for ME/CFS either. Treatments by alternative and complementary practitioners vary from helpful to harmful. So, yes, it is a bullshit diagnosis, especially for those who suffer from it!!
I have close relatives who have had ME & the only thing that genuinely got them better was alternative medicine.
Same here. The only thing that gave me significant improvement was bee venom therapy (done with live bees) and a diet high in vegetables and low in carbs, sugars (sugars having the worst effect) and animal products. Micro dosing with mushrooms also gave me a small boost, but they are illegal in most countries. The fact that the bee venom therapy helped the way that it did leads me to suspect that there’s a viral component to it.
How about looking at the CFS label itself. It is a made-up disease with no objective measure or scientific investigative test. How to you cure a disease that does not exist and likely is just people who are under a lot of stress and poor at coping.
Wow. Your dismisal of this disease as people under a lot of stress who dont know how to cope is not only insulting, its at the heart of what this whole article is about. Sad that you comment is first in line.
You obviously do not know what you are talking about. I have fibromyalgia and have an adult granddaughter with CFS there is a fine line between them. Do your homework. I am 84 y/o and recently had to retire due to my fibromyalgia and I am a highly motivated person who knows what she is talking about. Read The Fibromyalgia Advocate by Devin J. Starlanyl, M. D. you will learn something.
How remarkably asinine. One would think you hadn’t read the article. Please tell us how you account for the immune system and biological changes that accompany CF/CME. Ahh, perhaps you are just a needy troll in need of counseling?
“a made-up disease with no objective measure or scientific investigative test”
Remind me how a doctor proves a patient is having a migraine headache, menstrual cramps, or phantom limb pain.
What are the “objective measures”, the “investigative tests”?
Hmm. Its like you’ve read something about the disease that was critical, but didn’t pay attention enough to get it right. The word you are looking for is not “objective”… there are objective standards used to diagnose the disease. What you are probably thinking of is that until recently there were no *biomarkers*. Of course this has changed so you are just woefully ignorant at best.
Most “tendinitis” is similarly never proven by objective measures such as labs or imaging (and may not be seen on MRI).
Tinnitus …a made up disease?
Must be. There are no confirmatory tests.
“Of course this has changed…”
Brock Cannahan is correct that there are current tests orderable by an MD to confirm the diagnosis.
That’s a reasonable point, but erroneous in that medicine has other long-accepted disorders that similarly lack diagnostic tests, so inadequate as refutation.
The new CFS biomarkers study is exciting if true, but too early to use as evidence.
“Brock Cannahan is correct that there are NO current tests orderable….”
Why are you reading an article about it and why do you find it necessary to comment negatively on it? There are lots or US universities doing research on it at the moment, mostly funded by the National Institutes of Health in the US. I doubt whether any of these institutions or researchers will spend time and money on something as trivial as you obviously think it is.
Here is a list of you being wrong:
ME/CFS certainly does exist and is not a moniker the extremely lazy, depressed or stressed use. A friend of mine at university had ME/CFS. She was happy, doing a degree she loved and living life to the fullest she could…when she could get out of bed. There were many days she would not be at uni so I would text to ensure she was OK, to which she would usually respond in her cynically cheerful way that she was fine, she just couldn’t move her body no matter how much she tried and that she would hopefully be in tomorrow. It started after she got something like mumps or glandular fever or something like that. She had a bit of swelling on the brain and she was never the same.
Close ranks and keep the faith; shut your mind to data and rational arguments.
Medicine has come a long way since the Greeks – seems the Brits are just about struggling out of the Roman era actually, (old boy)….
Yet another example that human beliefs cannot be overturned by logic and persuasion, to the detriment of the human race (extinction is a deadly serious business, dudes).
Dear Sir , l am in total agreement with your report. I was told for 15 years that l suffered from chronic fatigue. I had no energy . I was lethargic 24 hours a day. Due to my chronic snoring a friend suggested l see a sleep expert . I was kept in hospital for 2 nights and was rigged up to machine to monitor my sleep patterns. The result showed that in one night my heart stopped 32 times for between 1 and 3 minutes . I had sleep apnea. I now sleep with a small machine which has a tube attached to my nose mask and passes air to my nose which keeps my through the clear and l don’t snore. It keeps my throat mussels relaxed so they do not contract and starve me of air. I hope this may be of help. I have been in excellent health from the time l first time I used the machine . I delight in getting my life back is amazing. Regards Jake Brennan.
Hi Cliff. I couldn’t reply to your earlier post, so I’m putting the reply here. No, it’s not the families who are putting children and young people in mental hospitals. It is doctors. They brought the police to break down the door of Sophia Mirza’s home to take her away, and they had to physically restrain her mother from trying to keep her. This is a good website for the experience of severe ME:
The girl in the picture, whom we have since lost, was made much worse by being forced to undergo GET.
In many cases, such as Karina Hansen who is still imprisoned in a mental hospital, the patient’s own doctor resisted the hospitalization. It is this small number of “experts” who cause the trouble. I do not know how they sleep at night. They must have rather outsized opinions of themselves.
So it is not intra-family dynamics, but rather institutional abuse of patients, that has led British (and some Scandinavian) psychiatrists to condemn “CFS/ME” patients to psychiatric hospitals
You’ll note I used ME. That is the name I use myself (Myalgic Encephalomyelitis), because historically it is the most accurate – and it has continuously been diagnosed for 60 years.
This disease was first formally studied after an outbreak at Los Angeles County General Hospital in 1934 during a polio epidemic – it was named “atypical polio” then. After that there were more epidemics, including a very large one in Iceland, and it acquired more names – including Icelandic Disease.
Three large cluster outbreaks occurred in England in the mid-1950s. With polio apparently “conquered” by the vaccine (3 strains, that is – researchers reverted to giving the other ones the more generic name enteroviruses), these outbreaks were named Benign Myalgic Encephalomyelitis by a journal editor; very soon the adjective “benign” was dropped because, as expert Melvin Ramsay said, there’s nothing benign about ME.
The name ME was adopted throughout the British commonwealth nations – but in the US, the term epidemic neuromyesthenia was chosen instead. That became a problem in the 1980s, when there were a series of cluster outbreaks throughout the US and Canada. Had the outbreaks occurred in the UK, certainly the patients would have been diagnosed with ME (as several ME researchers commented at a meeting convened by Gary Holmes of CDC and Stephen Straus of NIH in 1988). Because the US never used ME, and because the diagnosis epidemic neuromyesthenia had died out by 1980, the choice was not available to doctors at the cluster outbreaks. Many cases seemed to begin with Epstein-Barr (EBV, HHV-4, Mono, Glandular Fever), so Stephen Straus of NIH named it Chronic Epstein Barr Virus, or CEBV. By 1986 Straus had realized both that not every patient’s illness had begun with EBV, and that 95% of American adults were already exposed to EBV, so Straus began using the term “the chronic fatigue syndrome” internally. At the 1988 meeting, Straus’s preferred name was adopted (not exactly a coincidence since Straus, as the in-house expert, had veto power over any requests for funding from NIH).
In the meantime, in the UK, the disease had begun to be claimed by psychiatrists. Two British psychiatrists, McEvedy and Beard, published articles insisting that the 1950s outbreaks were actually cases of mass hysteria, using for their examples cases that occurred in women’s dormitories (1970, 1971) – after all, women are prone to hysteria (no comment). Around 1990 psychiatrist Simon Wessely, who peeked his head out to defend the PACE study early in this comment thread, began insisting it was really “neurasthenia,” actually referencing a monograph published in 1869 – a time when doctors’ manuals still recommended the only way to treat a complex leg fracture was to saw it off. The author of the monograph, “American Nervousness,” argued that allowing girls to study “hard sciences” like biology and math would result in them either suffering from a malformed uterus – the “shrunken womb,” which they called hysteria (still called the “wandering womb” in Europe), OR would suffer from a permanent nervous condition (neurasthenia). The book somehow managed to hit the Trifecta of biases – misogynist, nativist, and racist – but in defense of the psychiatrists who dredged it back to the present, I don’t think they read that much of it; they were looking for a reference that pre-dated Freud (because Freudian neurasthenia was a bit controversial by then). Since I had used the same book for laugh-lines in the middle of a lecture for my undergraduates, I could not believe it was being employed to explain my disease!
Fortunately, the World Health Organization (WHO) had already classified ME as a neurological disorder when it was placed within WHO’s International Classification of Disease in 1969, and using a diagnosis from another chapter (psychiatry) was forbidden in the UK. Not that they didn’t try, through the entire 1990s, insisting the disease really was neurasthenia, being ordered by Parliament to issue a retraction, then repeating the game again the next year.
If the first error in the psychiatric version of CFS adopted in the UK was a vision of the female human body developed over a century ago, the second was in ignoring the existing literature on Myalgic Encephalomyelitis. See how very differently the disease was described by Dr. Melvin Ramsay in his 1986/88 textbook:
Unfortunately, Ramsay passed away in 1990, leaving the field open to the psychiatrists who apparently saw it as a useful substitute for the business they had just lost when Multiple Sclerosis began to be treated as a neurological disease, rather than “hysterical paralysis.” The British psychiatrists created their own unique definition of the disease, the Oxford Definition, which required only “six months of debilitating disease” and no physiological explanation for the symptoms. In contrast to other definitions, major mood disorders were NOT excluded. This definition is so different from the others in current use by researchers that the Agency for Healthcare Research and Quality has recommended it be thrown out altogether along with research conducted using that definition. AHRQ noted that the papers insisting CBT and GET were cures for ME or CFS had all used the Oxford definition, which meant none of them had any bearing on the disease HHS had taken to calling ME/CFS; they suggested these treatments be set aside as having no valid research to support them.
For the most commonly used definitions in current biomedical research on
ME/CFS, see the CDC’s Fukuda definition (1994):
and the Canadian Consensus Criteria (2003):
There are more current versions for both research and clinical definitions of the disease, but they have yet to be formally included in most current research programs. What we need most today is one or more biomarkers.
In the US, psychiatry has gone in the direction of studying the physical abnormalities behind major psychiatric disorders, and there was little interest from US-trained psychiatrists in the popular psychology behind Britain’s version of chronic fatigue syndrome as neurasthenia. Instead, psychological explanations for the disease in the US (generally focusing on an inability to “handle stress”) have fallen to the controversial world of CAM – Complimentary and Alternative Medicine.
ALL of the psychiatric diagnoses and treatments of the Oxford school rest on a single starting assumption: the patients truly FEEL their symptoms, but there is no explanation for them – that is, they suffer from Medically Unexplained Symptoms (or MUS, a term born in the insurance industry). ANY EVIDENCE that the symptoms ARE based in physiological abnormalities can thus be taken as evidence that the entire belief system (known as biopsychosocial medicine) behind the CBT/GET treatment prescription is false.
The psychiatric cabal that keeps pushing CBT/GET usually pops up at this stage to say the critic suffers from “Cartesian mind-body dualism.” My response to that is to observe that it is the psychiatrists themselves that seem obsessed with mind-body dualism, as there is NO “bio” and precious little “social” in biopsychosocial medicine. For that matter, if the BPS crew really frowned upon mind-body dualism, why do they ignore thousands of peer-reviewed published articles written in disciplines other than psychiatry?
The science of immunology and relatively new subdiscipline of metabolics have changed dramatically in the past 25 years – even in the past 5 years – as we have learned so much about what goes on within and between cells in the body. The image of a Pacman-like white blood cell chomping down on the bad pathogens in your body has been replaced by immensely complicated models involving organisms (if they can be called an organism) living inside cells, envelopes, signals, and so much more that I am left staring in amazement at the complex diagrams in Powerpoint presentations by virologist and immunologists such as Ian Lipkin of Columbia or Maureen Hanson of Cornell.
The fact of the matter is that the BPS version of the human body is … well, so twentieth century. We had all thought that their outdated and simplistic version of “CFS/ME” would meet its demise when a biomarker was accepted by the scientific community – but the BPS psychiatrists hastened the event through the PACE trial, a thorough study, funded by £6 million of the British taxpayers’ money, that has turned out to DISPROVE the efficacy of their favoured treatment, CBT/GET – once and for all.
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