“The Lancet” and CFS

Post Exertional Neuroimmune Exhaustion

CFS / ME is Not a Patient Conspiracy

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Once I started to get what the story was,
I was able to listen to patients more carefully.

It’s very hard when you’re dealing with
a patient population that’s been so mistreated.

The PACE study’s definition of CFS
is six months of unexplained fatigue — period.

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

David Tuller

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Tomorrow we publish the PACE trial, a study showing the benefits of CBT and Graded Exercise Therapy for CFS. But, we are in trouble.

The ME Association [U.K.] has released a statement deploring the paper (while admitting it hasn’t seen a copy). Why? Because the work does not adopt a biomedical model for CFS.

The ME Association argues that CFS is a complex multisystem disease, not a cognitive problem. Thus we are the enemy.

But surely any evidence of treatment benefit has to be good news. Apparently not.

Which begs the question: just what is the purpose of the MEA? To object to rigorous research findings because they challenge fixed assumptions? A disservice to patients. . . .

Controversy about chronic fatigue PACE trial continues. We are promised a 30-page critique.

46-page critique of CFS PACE trial now with us. At least it is not a writ for €3 million.
That one is still pending.

Today we met lead scientists behind the PACE trial. The campaign against this study was virulently anti-science, adding £750K to the costs.

This story of waste, vexatious lobbying, and ad hominem attack should be front-page news.

Dr. Richard Horton, Editor in Chief of  The Lancet
Twitter, February 17, 2011 – April 4, 2012

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Perhaps what should be “front page news” is Dr. Richard Horton’s, the Editor in Chief of The Lancet‘s, “vexatious” attack on a patient advocacy organization, his rigid bias, and his tenacious refusal to consider another point of view.

Dr. Horton seems to be taking the world-wide backlash to the PACE trial personally, and by focusing on patient vehemence born of the frustration of the devastating physical injury of CFS coupled with long-term medical denial that the disease even exists, he is missing the point.

The backlash is not about science. It can’t be about science when there is so little science in the PACE trial’s hypothesis of a psychiatric etiology of CFS, its flawed methodology, or its stillborn conclusions.

Richard Horton is one of the dinosaurs fighting in favor of a psychosocial explanation for CFS/ME instead a biomedical explanation, and with his remarks he is attempting to discredit anyone who disagrees with him.

The backlash to the PACE trial is about medical ignorance and presumption versus patient experience and knowledge, or what has long been non-patient bias against acknowledging the disease as a disease versus patient empiricism that it is a physical disorder.

Richard Horton is not representing science in his remarks, he is representing an outdated medical belief system – that the doctor is smarter than the patient, that the doctor is always right and the patient is always wrong, that the doctor is calm and pro-science while the patient is not only hysterical but anti-science.

Horton’s comments indicate his abusive attitude toward patients, not truth in medical science. It is astounding that someone with as much influence over physician opinion as the Editor in Chief of The Lancet distrusts an entire patient population.

Richard Horton has stated that “medical research is a battle with patients”. This reveals far more about Horton than it does patients.

Perhaps Horton assumes that patients oppose doctor opinion for fun, or because they are dumb; perhaps he thinks that patients enjoy “battling” with doctors more than they want to get well. That is a very paranoid point of view; it is delusion tantamount to conspiracy theory.

Medical research may become a battle when doctors fight their way up blind alleys constructed of bias, pseudosuperiority, and ego against patients who know the truth, patients who make the attempt, out of self-interest, to guide doctors onto the correct paths.

Richard Horton’s opinion of patients is an authority problem. A logical fallacy is taught in many medical schools; medical students are told by some administrators and professors that they’re better, smarter, and more knowledgeable than the average student, the general public, and therefore their future patients. (Medical students who believe this become terrible doctors.)

The most intelligent medical students question the authorities who tell them that they are authorities. Doctors who trust, listen to, and believe patients will learn more from them medically than a lifetime of study of texts and journals. Patients are the drivers; doctors are the mechanics. Patients are the true authorities, doctors the life-long learners.

Why would the Editor In Chief of The Lancet not take patient feedback seriously? What would any science journal Editor in Chief normally say to a scientist unwilling to listen to and learn from expert, or even simply other, opinion?

Horton has stated that “not to question is not to think.” Yet by defending the PACE trial, and disparaging the people (who should know) who disagree with it, he is encouraging people not to think, not to protest, not to say, “That is wrong, and I know that it is wrong from experience.”

Horton seems to be wishing for good, compliant patients who believe whatever their doctors tell them about their own bodies; he seems to have wanted CFS patients meekly to swallow the PACE study whole and to act on it against their own better judgments.

When they didn’t, the Editor in Chief of The Lancet attacked them, assuring the world yet again that the problem with CFS patients is in their minds, not in their bodies; not speaking for science, he merely added to the arrogant chorus of medical voices against CFS patients.

CFS patients’ lives are made more difficult by the disease than anyone without the disease could possibly understand. Patients become fed up with nay-sayers and doubters and lookers-askance who add insulting disbelief to devastating injury, illness, and loss.

Millions of people all over the world suffer from CFS. Among such a large cohort of patients there are bound to be a few who become so frustrated by the disbelief, condescension, and disparagement from the medical professionals to whom they have turned for help, and how negative medical opinion has negatively influenced public policy and even family reaction, that they lose their minds.

But that doesn’t mean that the rest, the overwhelming majority, who disagree with the insulting medical assumptions about the illness, the false conclusions about their abilities, and the horrific implications of being called mental patients when they are suffering from physical illness, are not to be believed when they object to such damaging characterizations.

Being medically invalidated is beyond cruel, it is life-threatening. Because of the medical stupidity to which CFS patients have been subjected for decades, they’ve suffered longer than they’ve needed to, and they’re dying.

Their lives are wasted to illness, and sometimes lost, due to an incomprehensible scourge of medical deceit, hypocrisy, and self-interest.

Why? That is what needs to be questioned.

The PACE trial was designed and interpreted to validate the medical hope that CFS patients are not only lazy but crazy. PACE intended to show that no-cost exercise and small-cost therapy cure what doesn’t really exist except in the heads of CFS patients, their belief that they are sick – perhaps so that insurance companies and health services won’t be obliged to pay for expensive treatments for a real medical illness? Who knows? It could be anything. We need to keep an open mind.

What does help patients, what patients know helps from experience – eternal vigilance against overexertion – doesn’t really help, they were assured by the PACE trial’s authors (so perhaps they’d get their lazy asses out of bed, stop pretending they are ill, and stop making unnecessary demands on the national health care system).

But exercise makes CFS worse, not better; cognitive therapy may help make people feel better, but it does not cure physical illness.

Telling people who have a physical disease that they have a mental illness is abuse. Telling sick people that they should do what makes them worse is maliciously disastrous medical care.

The trope has always been that if doctors don’t know why one is sick, one is not sick, one is imagining their illness (or is mentally ill). For CFS patients that judgment has barely budged over the decades even as more and more evidence from (better than the PACE trial) medical research has proven that CFS is biomedical.

Richard Horton does not speak against CFS patients as a man of science, nor as a man of medicine; he spoke against CFS patients a man for himself and his cohorts.

British psychiatrist Simon Wessely, a constructor of the PACE trial and a classic Freudian (Freudianism being the psychological belief system, long ago scientifically discredited, which theorized hidden self-destructive motivations in illness), egged Horton on.

Wessely is simply, obviously, a very confused person. (In this article Wessely first says this then that about CFS, agrees with his detractors one minute then contradicts himself the next; calls for “peace” between himself and experienced CFS patients and their doctor-supporters who don’t buy the psychiatric theory of CFS, while insisting that CFS is psychiatric.)

If Wessely is not confused then he is mendacious, a con man, and a fraud who should be ashamed of himself for the harm that he is doing to innocent people for the wrong reasons. Wessely is either a shill or he has dementia.

Because of Wessely and Horton and people like them in high medical authority in Britain, the situation for CFS patients in the UK is bad, and getting worse. Their family-caregivers are being called “enablers”; they are being yanked out of their beds and thrown into psychiatric institutions, where they quickly die.

(Misguided, conservative, typhlotic doctors with singular power to influence or set health care policy in government, like Wessely and Horton in the UK, are the strongest argument I know of against more socialization of medicine in the U.S.

I am for socialized medicine. I believe that health care is a right, not a privilege. Yet as much as the U.S. needs a single-payer system, as much as patients in the U.S. are abused and impoverished by health care insurance companies and hospital payment systems, as much as most Americans can’t even afford insurance, much less health care itself, if authoritative, complete medical disavowal of organic illness is what happens to patients under socialized medicine, then perhaps the U.S. is better off without it.)

Research study design isn’t easy; it requires the most imaginative, creative, brilliant thinking of which human beings are capable. That is why, precisely, there is so much bad science.

Medical research influences clinical practice, public opinion, and patients’ families’ reactions.

Richard Horton is a smart man. But CFS patients are also often very smart, striving, and analytical people. They know their disease like no one else can. Richard Horton should learn from them.

It is not anti-science to take issue with flawed science, it is pro-science. Doing bad science and presenting it as the truth, however, is anti-science.

The PACE trial was seriously flawed.

1) There were no matched healthy control groups.

In this study, healthy control groups to verify the conclusions drawn against the sick groups studied were indicated and were necessary. But perhaps such research-validating safety measures are not considered necessary when the point of the research is not medical truth but a patient snow job.

2) The PACE trial study group were not, or not all, people with CFS.

Critics have noticed that the subject criteria for inclusion in the study literally selected for those with depression as their primary complaint; this alone invalidates the study.

But when the study hypothesis is that CFS is a psychiatric syndrome rather than a biomedical disorder, errors in study methodologies are bound to occur.

3) Cognitive Behavior Therapy (CBT), Graded Exercise Therapy (GET), and/or the diversion from daily life of being in a research study could give temporary energy to and increase the well-being of anyone, well or sick, especially people who are depressed, as were selected for in PACE.

No one could conclude from this that these therapies are safe or effective for people with CFS, who tend to be set back physically, often to relapse, a word which doesn’t convey the depth of pain felt in CFS relapse, from overexertion.

But when researchers begin by assuming that their subjects are irrational they will ignore evidence that they are not.

The PACE study was badly conceived and methodologically flawed.

It shouldn’t be defended by anyone.

- Cathi Carol, 2011

 
Resources

 
Photo/Art Credit:

Post Exertional Neuroimmune Exhaustion
Research 1st

 
Regarding:

The Pace Trial Official Website

Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial
P D White, K A Goldsmith, A L Johnson, L Potts, R Walwyn, J C DeCesare, H L Baber, M Burgess, L V Clark, D L Cox, J Bavinton, B J Angus, G Murphy, M Murphy, H O’Dowd, D Wilks, P McCrone, T Chalder, M Sharpe, on behalf of the PACE trial management group.
The Lancet, February 18, 2011 (online). DOI:10.1016/S0140-6736(11)60096-2.

A Hospital War Reflects a Bind for Doctors in the U.S.
Julie Creswell and Reed Abelson, The New York Times, November 30, 2012

 
Richard Horton’s Tweets (in chronological order):

 

 


 
© 2013 Cathi Carol. All rights reserved. Please do not republish without permission.
 
Last Updated: March 30, 2013
 
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