The psychosomatic focus on CBT and GET has delayed scientific understanding of ME/CFS by 30 years

By David F Marks:

 "A new properly scientific framework for the understanding of MUS/MECFS is urgently needed, grounded in the biological bases of the illnesses. The psychosomatic focus on CBT and GET for MUS and MECFS has delayed scientific understanding of the disorders by 25 to 30 years." 

Damning criticism of the flawed #PACEtrial by psychologist Prof Brian Hughes

Damning criticism of the flawed #PACEtrial in a new book by Prof Brian Hughes on the “rampant methodological crisis” in psychology.

 'Rampant methodological crisis' - describes how psychologists invent their own study methods, change them part way if the data don't fit their preconceptions, misuse stats etc.

 “The controversies surrounding the PACE trial can be seen as emblematic of the real-world problems caused by psychology’s many crises.”

 From p. 140: That the PACE Trial continues to be so doggedly defended, despite a litany of damaging critiques, shows us how psychologists can retain an unswerving allegiance to their own ideas.

 You can read here part of the pages dedicated to the PACE trial (from p132 to 140, p 138 is missing).

Dr Keith Geraghty's undeclared conflict of interest

PACE trial should acknowledge inefficacy and harmfulness of CBT and GET

By Mark Vink, (Family Physician) the author of the 2016 Review of the PACE trial for which he was nominated for the John Maddox Prize for Standing up for Science.

If CBT and GET had really been effective there would have been no need for an extensive number of changes to the recovery criteria made during an unblinded trial, making the definition much less accurate to the point that people who were still (severely) ill were classed as recovered.

The time has now come for the PACE trial authors to stop misrepresenting their own results; acknowledge the inefficacy and harmfulness of CBT and GET to prevent further unnecessary suffering inflicted on patients by physicians/therapists, which is the worst of all harms, yet totally preventable.

MORE @ Observantonline, the journal of the University of Maastricht

Sir Simon Wessely (the godfather of PACE): The PACE trial simply made whatever adjustments they needed in order to get the results they wanted

Sir Simon Wessely (the godfather of PACE): The PACE trial simply made whatever adjustments they needed in order to get the results they wanted

By spoonseeker 9 December 2016:

  As for the PACE authors themselves, I doubt that anything will make a difference. They had clearly decided how the trial was going to turn out before they even started it, and I can’t see anything changing their views about it now, whether peer reviewed or otherwise.

PACE was not a voyage of discovery. As the godfather of PACE, Sir Simon Wessely, inadvertently revealed, they always knew exactly where they wanted to get to.

They simply made whatever adjustments they needed in order to get there. They live in a world where they are right, patients are wrong, and the facts can be changed to support that. I doubt they’re open to any kind of reason.

Or as Professor Steven Lubet, a Professor of Law at Northwestern University, recently stated:

"Finally, you point to your own blog post, which ironically undermines your very point. You compare the PACE Trial to an ocean liner plotting a course from Southampton to New York, and express satisfaction that it made the trip “successfully across the Atlantic,” despite course corrections along the way. 

But surely you realize that a randomized controlled study is not supposed to have a fixed destination, but rather should follow wherever the evidence – or the current, to maintain the metaphor -- leads. 

You thus virtually admit that the PACE Trial was always intended to reach a particular result, and that adjustments along the way were necessary to get it there.  Just so."

NICE takes a dim view of foreign work on ME/CFS after first consulting a third party ...

"You can't ignore me now" Naked Millions missing protest at Whitehall to demand better care for M.E patients

By Reya El-Salahi (@_Reya) 27 Sep 2016:
"You can't ignore me now" Naked protestor demands better support for M.E patients. Details on @LondonLive before 2pm #MillionsMissing https://t.co/o9SIbwSO1q (http://twitter.com/_Reya/status/780728125181353984?s=17)

PACE trial's principal investigator Peter White has retired from clinical practice with immediate effect to avoid ...

PROOF POSITIVE ? (REVISITED)

Margaret Williams, 14th September 2016  

"The role of Professor Peter Denton White OBE
In 2004, Professor Peter Denton White was awarded an OBE for “services to medical education”;
notices circulating at the time proclaimed him as leading the research into “CFS/ME” and said his OBE was “a well-deserved honour and acknowledgement of his contribution to work on CFS/ME”.

He was born in November 1952: aged only 64, he suddenly retired from clinical practice just before he was compelled by an order of the court to release the raw data from the PACE trial, so any
investigation by the General Medical Council for alleged professional misconduct is unlikely to be
pursued, but is he guilty of misfeasance in public office?

According to the Crown Prosecution Service (CPS) website, misfeasance in public office is a cause of
action in the civil court against the holder of public office, the allegation being that the office-holder
has misused or abused their power: such misuse or abuse is an affirmative act that causes harm to
another party without reasonable justification. The NHS is a State body as it provides public health
care, so this matter is one in which the public has a significant interest.

Facts to be considered
1. Peter White has used his own money, as well charitable money and public money, in order to
lobby support for his belief that ME/CFS is a psycho-behavioural disorder that can be
overcome through “cognitive restructuring” and graded aerobic exercise
2. he has egregiously used large sums of public money (£250,000) to prevent the disclosure of
data that would falsify his belief
3. for nearly 30 years, he has ignored evidence that disproves his belief, including evidence from
his own trials
4. he has failed to correct errors of fact after being alerted to them
5. he has consistently failed to disclose significant financial, institutional and ideological
conflicts of interest
6. he has been in breach of his NHS contractual obligations in that he has persistently ignored
mandatory directives and has wilfully encouraged other clinicians to do the same
7. as a consequence of his actions:
 money which should have been used for biomedical research into the aetiology of
ME/CFS has been diverted to fund studies into therapies which were already known
to be ineffective and even harmful
 patients have been stigmatised as sociopaths and malingerers who refuse to accept
they have a behavioural disorder
 patients have been denied financial support from private insurers for whom Peter
White and his colleagues work (for example, he was Chief Medical Officer for the
giant re-insurer Swiss Re and was also CMO to Scottish Provident) and from the" ...

Proof positive (revisited) .pdf

World exclusive: picture of one of the "recovered" patients in the PACE trial

Important message from PACE trial HQ

The statement which we should have issued

Statement: Disclosure of PACE trial data under the Freedom of Information Act
http://www.qmul.ac.uk/media/news/items/smd/181216.html


The statement which we should have issued

We sincerely apologize for not releasing the data earlier. We now realise this was a big mistake; even more so as the trial was funded with more than 5 million pounds of public money and therefore the public has a right to see the raw data.
We also sincerely regret ignoring our own NULL effect and making it make it look as if our two favorite treatments ie CBT and GET are moderately effective; it was a major oversight on our side to suggest that 22% of people recovered courtesy of CBT and GET;
We now realise that we have been exposing people with this disease for at least 25 years to ineffective and harmful treatments and that hundreds of thousands of patients have been severely harmed by especially GET;
We also regret decades of ridiculing patients with a debilitating neuro immune disease and pretending it to be a functional disorder, MUS, PPS or words to that effect;
The only function that served was making ourself important so that we could pretend to be experts of this disease and that no one would listen to the patient;
We realize that we cannot make up for all the mistakes we have made over the last 25 years including coming up with the Oxford criteria so that we could select patients who do not have the disease but label them as if they do, in an effort to improve the effectiveness of our treatments;
A very nice side effects of these treatments for this disease was that no doctor will take a disease seriously or ask critical questions if we pretend that it can be cured with behavioral and exercise treatment;
We realize that we have not only let the patients down but also our Universities and our Medical colleagues worldwide; we fully understand that after 25 years of being very economical with the truth and spinning our results people will call us the British Diederik Stapel;
The only way we can make up for our mistakes is by resigning from all our posts with immediate effect and together with our universities and sponsors, we will donate 5 Million £££ ie the equivalent spent on the PACE trial to proper biomedical research as done by the Norwegian oncologists and for example by Stanford's Professor Ronald Davis in an effort to get patients with this debilitating disease effective treatments ASAP;
Our Biopsychosocial model as an explanation for this disease will go down in the history of Medicine and Great Britain as one big ego trip and we sincerely apologize once again for letting patients, our universities and the medical profession down in the biggest possible way;

Sincerely,

The three principal investigators of vested interest psychiatry who have now handed  back their professorships and more

A doctor diagnosed with MUS (a diagnosis used by incompetent doctors) was actually dying from cancer ...

A doctor diagnosed with MUS (Medically Unexplained Symptoms) who was actually dying from cancer ... Highlighting the fact that MUS is a diagnosis of incompetent doctors as evidence that something is MUS or psychosomatic does not exist ...

Dr Lisa Steen: the wilderness of the medically unexplained

This patient perspective essay was written by Lisa Steen. She has since died. We have permission to publish the piece from her husband, Raymond Brown.

I am a GP, formerly a trainee psychiatrist and now 43 years old. In July 2014, I was diagnosed as having kidney cancer with multiple bone metastases. The cancer was extremely rare, associated with a succinate dehydrogenase B (SDHB) mutation. This genetic condition was later also found to be the cause of my carotid body paraganglionoma which had appeared when I was 18 and was finally excised when I was 27.

I had felt unwell in terms of dizziness and visual symptoms since August 2012, and presented to my GP in September 2012, nearly two years before my diagnosis was made in July 2014. So I spent two years wandering in the wilderness of the medically unexplained.

In fact I had been feeling tired for several months even prior to this presentation in August 2012, and had felt like I was lacking concentration. I had been put on a series of antidepressants, each of which caused “side effects” which may have been symptoms of illness all along. Fluoxetine caused headaches, sertraline caused diarrhoea, and dosulepin caused visual disturbance—at least that’s what I thought at the time.

I had considerable difficulty describing my symptoms: primarily visual disturbance; a sense of being behind a wobbly TV camera; also of diplopia—another image slightly below causing blurring, and negative palinopsia, prompting the GP to refer me to the eye clinic urgently, where all examinations were shown to be normal.

There were many other minor symptoms too: fatigue, palpitations, cramps in my hands and feet, subtle cognitive impairments, difficulty finding words, memory problems, difficulty coping at work. I had time off sick even though I previously had an intact sick leave record. I had headaches which were worse on standing, also an altered sensation in a glove and stocking distribution, mild tremor, and gradual weight loss without dieting.

My GP insisted on sending me to a psychiatrist mainly because I had been on so many antidepressants, and we didn’t know which to choose next. But also because I had initially interpreted these symptoms as SSRI withdrawal or dosulepin side effects.

The psychiatrist’s immediate instinct was that the illness seemed “organic” not psychiatric, and neither was it SSRI withdrawal or dosulepin side effects.

A neurologist’s advice was sought and her first thoughts were of hypothyroidism or low calcium. The neurologist also requested an ultrasound of the neck as I had concerns that it was something to do with my previous carotid body tumour, and I wondered if it had returned.

The ultrasound and bloods proved normal. The neurologist did not find anything abnormal on examination apart from a Horner’s syndrome (longstanding and related to the previous carotid body surgery). An MRI of my head was subsequently normal.

The psychiatrist made a diagnosis of depression and health anxiety, but without much psychiatric evidence, I felt. This diagnosis not only perplexed me, and I wandered away from my own further diagnostic enquiry, but it impacted on consultations following this diagnosis.

I did not entirely believe my psychiatrist however, mainly because the visual symptoms were so florid. I considered myself very psychologically aware and was not convinced about the anxiety/depression diagnosis. Though, unfortunately I had proved a highly suggestible subject during the cognitive behavioural assessment, due to having been trained in CBT myself.

The symptoms did indeed get worse with stressful situations, but this was partly because those situations occurred whilst standing—such as presenting patients on the morning ward round. This had been a factor in stopping work, because there were problems with my word finding and memory. On reaching the patient’s bedside I found myself almost hallucinating in terms of palinopsia, purple haze and blotches, all of which was very distracting whilst trying to contribute to the ward round. It was impossible really to continue working without working life becoming a total humiliation. This did indeed lead to low self worth and anxiety. The low level acute confusional state, as I now see it, meant that I was functioning at a suboptimal level at work, for no clear reason, this then led naturally to anxiety and concern. It was then difficult for me to untangle my own symptoms from psychiatric ones.

Since I was being paid to be off sick, I felt it my duty to follow orders. So therefore to pursue psychological cure—though at the same time I was reading about the physical causes of my symptoms.

I spent the next few months trying to address my apparent mental health problems with a psychologist, and I mainly considered myself to have a psychosomatic illness maybe some sort of conversion disorder. Unusually, I worked backwards, as it were, to exclude a psychiatric illness so as to realise I had a medical illness.

But I gradually became convinced that exertion and not anxiety caused the visual symptoms to worsen, I also thought that the nature of the symptoms “felt” organic because of the pronounced and ongoing visual symptoms.

I then started to look for threads, clues, and a way forward to get treatment. This was thwarted by my earlier diagnosis of health anxiety and having medically unexplained symptoms. One could not be dogmatic in further requests for investigations for fear of looking even more “anxious” or suffering from “health anxiety,” aka a hypochondriac. I wanted to ask the GP for a chest x-ray and abdominal ultrasound, and thought about paraneoplastic syndromes but I always tended to think it was not cancer, in view of the normal inflammatory markers and the length of time it had gone on. But I suspect also it was a pitfall of being forced into the “physician heal thyself” situation.

I saw a vascular surgeon, privately, wondering if the carotid was narrowed by scar tissue from the previous surgery, thinking maybe inadequate blood supply to the brain/retina could be occurring—which is the cause of physiological palinopsia. The carotid was not narrowed, but the vascular surgeon who performed the duplex ultrasound suggested that I might have a genetic disorder and have a phaeochromocytoma, which was something that impacted on his field. I persuaded my GP to order a 24 hour metanephrine test which frustratingly came back negative. At my behest the heart-sunk GP also did blood tests for SLE, and infectious serology screen.

In Spring 2013, I presented to Poole A&E in Dorset with palpitations, whilst on holiday (the palpitations unhelpfully disappeared on arrival in A&E). The heart rhythm was normal, but the A&E doctor was convinced she heard a third heart sound, and suggested a follow up.

So the next relevant thing seemed to be referral to a cardiologist, in June 2013. I suggested to the cardiologist the possibility of a genetic syndrome related to carotid body tumours. The cardiologist was a kindly man, but after exclusion of any cardiac conditions with an echo and 24 hour tape he began to consider the initial health anxiety diagnosis—or at least it looked like that to me. Once again a kind of consulting room glazing occurred and I was left once more looking like a goldfish. My mouth moving but no sound conveyed to the doctor’s ears. This was by now a familiar feeling to me.

The cardiologist did at least acquiesce to my suggestion that I may have POTS syndrome: postural orthostatic hypotension and suggested referral to a specialist. So I could have some excuse for being off sick.

By now I had gone back to work. There had been a rotation, and I was assigned to a consultant psychiatrist, who made it her mission to rehabilitate me back to work.

By August 2013, I hoped that I had found a thread, something tangible that the specialist could investigate secondary causes of. The POTS specialist did at least do a full examination, though he was not worried about my concerns of a possible pulsatile mass on the left flank, and thought my aorta was just rather left of centre. A tilt table test was organised which was “borderline positive.” In February 2014 further urinary and blood metanephrines were normal. All bloods were repeated and normal. The ESR and CRP remained very low.

At this point I gave up my quest: I was back at work, part time with a benevolent boss, and coping, though tired. I had adapted to my visual disturbance and could now function with it, though I was still embarrassed by my word finding difficulties. I tried to be more organised, and write everything down.

I still knew there was something wrong, but it seemed so fruitless going to see specialists. It was so humiliating, feeling like a goldfish with no voice. Watching doctors’ faces glaze over at the multitude of symptoms. Trying to fit it all in with work and looking after my family.

I decided it would have to wait for clinical events to become more diagnosable. I had tried as hard as I felt reasonably possible. It is also taboo to discuss one’s own health in any depth at work, and I was so exasperated by it all that I felt I would cry if anyone were too sympathetic—which doctors might then interpret as a psychiatric symptom.

In February 2014 I had a follow up with an occupational health doctor. This time the occupational health doctor became concerned, and noticed that I had lost weight and suggested seeing a bowel specialist in relation to a change in bowel habit and to see a neurologist about my numb hands and feet.

I went home and gave myself a full examination. This time I was sure. I found a large mass in my left flank.

I saw my GP, but they couldn’t feel it. I saw my POTS specialist a couple of weeks later and he thought it might be an enlarged spleen. He ordered a routine ultrasound.

One evening in June 2014 the junior radiology technician, working on a waiting list initiative, found a solid/cystic mass 10cm in diameter arising from the left kidney.

I was initially jubilant thinking this would turn out to be a phaeochromocytoma—maybe dopamine secreting. And now I could have an “anxietyectomy.” An urgent CT of the abdomen and pelvis was recommended.

The result was not cause for celebration. The CT showed that the mass was arising from the left kidney and was reported as looking like a renal cell carcinoma. There were also multiple sclerotic lesions in the spine, ribs, and pelvis reported as metastases.

By then I had abandoned my psychiatric training. I had felt unable to study because of “brain fog,” however I had managed to get over the many hurdles to get back my GP status, which involved three exams and six months of retraining.

I had just landed a job as GP Lead for Inclusion service, treating patients with drug and alcohol problems. But the news came just a few days after my interview and offer of the post. My progression through medical services was much more efficient after that and I saw an oncologist and the urologist urgently.

***

I do not know how long I’ll live. It probably won’t be for many weeks. But right now I am glad to be alive, I am grateful for the expensive drug which is holding back the cancer. I am angry at being left in the medically unexplained wilderness and I did not like the way my colleagues looked at me, when they believed me to have health anxiety.

If anyone of the doctors I saw had gone another mile they would’ve stumbled upon it. I almost told them the answer; I repeated over and over my belief of a genetic syndrome linked to the carotid body, something related to it, but they were unable to hear the answer from a patient. They were reluctant to lay their hands on and examine a fellow medic. I was disappointed in finding a very poor appetite for a diagnostic hunt, which may in part be the result of protocolisation and superspecialism. I disliked being unable to order my own tests, and I regret not pulling more strings. I was too embarrassed about my “psychiatric” condition, too confused by not having the whole answer ready.

My story is a cautionary tale to all of us health professionals when we get ill. Illness is somehow not the done thing. It upsets our “them/us” belief system, which helps us cope with the horror of what we see. “We do not get ill, they are ill.” We are a lot more military than we realise.

We are trained to keep going, as if there was a war on. Our workloads are superhuman, and we seriously do not appreciate it if those around us “slack off,” particularly those taking sick leave with depression or stress. “Heaven knows the rest of us are depressed and stressed, all right for some putting their feet up.”
I felt deeply ashamed of being too unwell to work.

The communication was different, it didn’t go the same way that it would have if I was a non-medic. Doctors do not like being told what to do, and if you try obliquely they don’t notice. They don’t worry much as they assume you’ll come back. But it is hard getting to appointments when one is working, and just how many times can you come back if it gets worse? I was beginning to think that our etiquette for being seriously ill is to drop dead on the job—it is fairly common practice, anecdotally anyway.

Mine is a cautionary tale to those treating health professionals, and those of us who are unwell—doctors do get ill, they don’t always know what is wrong with themselves: give them a class A service because it is actually harder getting treated as a doctor than a lay person.

Please Sign this PETITION: ME is not MUPS or SOLK (PACE trial proved ME/CFS is physical)

PACE trial proves ME/CFS is physical; it's not MUPS (Medically Unexplained Physical Symptoms) or SOLK  

A quick history:

56000 signatures were collected by very ill patients several years ago (Dutch Patient/Citizen Initiative Recognize ME) to get Parliament to listen. They asked Dutch Health council to write a new advisory report about state of the knowledge about ME. However serious conflicts of interest of the members of the Dutch Health Council (ie Dutch PACE colleagues) are ignored.

There are members on there who think along the lines of the Wessely school of vested interest psychiatry, ie the biopsychosocial model, a hypothesis disproven by 1000s of research articles and by Wessely's PACE trial itself !!

ME is a chronic complex multi-system disease, anyone who claims otherwise has no place in health care. Health care and treatment can no longer be based on people clinging to old paradigms, based on non-evidence based treatments. Lets Raise our voice together as this problem affects ME patients around the world.

Please SIGN this petition @  petities.nl

  Thank you for considering and / or signing !

Please remember the outcome of the INDEPENDENT review of the PACE trial, which amongst things showed that the real conclusions of this trial, based on the published results, contrary to the published conclusions, are that: 1. CBT and GET are ineffective to treat people with ME (also known as CFS or ME/CFS) also called a NULL effect; 2. A discovery by the trial which proves yet again that ME/CFS is a physical disease; 3. The disproval of the biopsychosocial model favored by the British (PACE trial) psychiatrists and their Dutch Nijmegen friends.

The full article "The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review" with it's other conclusions can be read here, free of charge.

 

OMG: Prof Chalder admits that they made up the death threats themself to ridicule patients

Prof Chalder admits that they made up the death threats to ridicule patients in trying to make sure that the PACEtrial data doesn't get released. Therefore it doesn't take a genius to conclude that the data is much worse than what they have presented and published because if it would have backed up their claims they would have long shared it ...

P 36 @ informationtribunal.gov.uk

Prof Chalder: Cochrane review not independent at all as all principal investigators of the PACE trial sat on it ...

P31:
"Professor Chalder states that disclosure to the Cochrane review does not count as disclosure to independent scientists as all three of the PACE principal investigators sat on the review panel."

 Which means that the principal investigators of the PACE trial were reviewing their own trial ...

So it is becoming clearer and clearer that the PACE trial is a bridge too far for the psychiatrists who have been lying about a debilitating neuro immune disease for decades.

More @ informationtribunal.gov.uk

#PACEtrial Psychiatry is much worse than #DiederikStapel psychology: Two great articles about the seriously flawed PACE trial

Two great articles about the seriously flawed PACE trial

  Editorial: On PACE by Trevor Butterworth, Mar 21, 2016: "And the thing about patients who either suffer from a rare disease, or a more common and inexplicable one as with ME/CFS, is that they are usually a formidable resource—a network of distributed experts who have sifted and weighed the scientific research with the kind of avidity you would expect, given that their lives depended on it. In pharmacology, rare disease patient groups are highly respected and are seen as partners in research rather than just subjects and consumers of studies."

  MORE @ stats.org

  AND

  PACE: The research that sparked a patient rebellion and challenged medicine by Professor Rebecca Goldin, Mar 21, 2016 :

  "The results from PACE (including these) have been published in prestigious journals and influenced public health recommendations around the world; and yet, unraveling this design and the characterization of the outcomes of the trial has left many people, including me, unsure this study has any scientific merit. How did the study go unchallenged for five years? And how could journalists have recognized the problems before reporting unqualified, but unjustified, good news?"

  MORE @ stats.org

Nice explanation of PACE trial nonsense and Wessely psychiatry

Nice explanation of PACEtrial nonsense and Wessely psychiatry by @dwbarlow: "If the only tool you have is a hammer you tend to see every problem as a nail"

"I’m tired of having to counter the same propaganda ad nauseum."

"I’m exhausted by the politics and the endless endless lies and spin. I’m tired of having to counter the same propaganda ad nauseum." YES that sounds like the denial psychiatrists Simon Wessely, Peter White, Michael Sharpe, Trudie Chalder and their PACEtrial propaganda but as a matter of fact it's from the juniordoctorblog explaining why they strike.

PACE trial's pseudo science‏

New Age "Science" or Pseudoscience: A Review of Mark Demitrack's and Susan Abbey's Chronic Fatigue Syndrome: An Integrative Approach to Evaluation and Treatment

by Maryann Spurgin, Ph.D.:

The basic thesis of Demitrack's and Abbey's book, Chronic Fatigue Syndrome: An Integrative Approach to Evaluation and Treatment, is that the condition is a post-infectious, but culture-specific, behavioral and interpretive disorder, or at least, it is a condition caused and perpetuated by behavior and interpretation. It occurs in patients who refuse to exercise because they misinterpret their symptoms as severe and as representative of damage to the body. The patients' belief system is responsible for their failure to recover, since it leads to deconditioning, the real source of the patients' debilitation.

According to this thesis, some 2 million people across the country, people whom the book theorizes were often of above-average intelligence before they got sick, developed a viral infection or some other bodily stressor and then, suddenly, their interpretation became skewed. Suddenly they began imagining that their symptoms continued beyond the acute, infectious stage and that those symptoms were severe. Such "attributions" and "cognitions" perpetuate the illness, as does the "attributional bias" of the physicians who take them seriously. The cure, according to the book, is Cognitive Behavioral Therapy, which alters the faulty cognitions and leads to new behaviors such as exercise. Exercise, according to the book, restores the patient to normal.

Elegant prose and cool, clinical language provide the book with an aura of scientific objectivity. Careful examination, however, reveals the book to contain more value-laden rhetoric than logic, more religion than science. Let's examine its authors' cognitions and attributions.

LOGICAL FALLACIES

The book's principle logical errors are (1) fallacy of Undistributed Middle, (2) self-contradictory statements, (3) circular reasoning, and (4) fallacies of division and composition. Let's examine the book's fallacious reasoning by Undistributed Middle. Suppose I made the following argument:

All cats have hair.

All dogs have hair.

Therefore, all cats are dogs. The absurdity of the argument is obvious, since cats are not dogs. It is fallacious to conclude that because two entities share some characteristics, they are the same entity and should be treated the same way. Demitrack employs this fallacious reasoning in his first full chapter, Chapter 4, where he discusses endocrinology and immunology. After an extensive discussion of immunological deficits in CFS, including reductions in Natural Killer (NK) cell function and number, evidence of T-cell activation, impaired cell-mediated immunity, reduced lymphocyte proliferative responses to in vitro mitogen stimulation, and more, Demitrack immediately informs the reader that some of the same immune aberrations appear in major depression, anorexia nervosa, bereavement, and psychological stress. The implied conclusion, of course, and the one the unsophisticated reader walks away with, is that CFS, too, is one of these latter states or something similar to one of these states. As an analogy, on Demitrack's reasoning, one might also conclude that AIDS, too, is not a viral infection or a primary immunological disease, but rather a mood state, since lowered NK cell function is seen in that disease as well. One might, following Demitrack's reasoning, proceed to treat AIDS with psychotropics rather than anti-virals. (The absurdity of doing so is obvious only because we now know it to be both viral and fatal, but prior to knowing this the absurdity is not so obvious.) It is likewise fallacious to conclude that because impaired immunity is a finding in both CFS and some psychiatric disorders, CFS is a psychiatric disorder.

The book artfully interprets the data with regard to endocrinology as well as immunology. Mark Demitrack is known for having compared cortisol levels in CFS patients with those of the melancholically depressed. While raised cortisol levels are a finding in depression, Demitrack discovered that CFS patients express lowered cortisol. Instead of interpreting this finding to mean that CFS patients were unlike depressed patients, Demitrack labors to find an interpretation that would again link CFS to depression: he proposes that there are other depressive states in which lowered cortisol is expressed.

At the same time, the book claims that depression is present in CFS, and that the therapist should assume it, even when the patient denies it and his or her actions do not support it. Indeed, the book goes so far as to say that if the therapist becomes depressed in talking to the patient, the patient is likely depressed. This is a highly subjective way of doing "science" and medicine. It raises this general question: just how vague can a science become without compromising its claim to being science at all? Psychological assessments are often ones that are based on the subjective opinions of the therapist ("I don't like you, therefore you're mental") often with no objective data. In this case, the data show the opposite of what Demitrack and Abbey were looking for, yet get reinterpreted into the old scheme. Where federal funding is concerned, it would appear that no amount of objective data that surfaces showing CFS to be distinct from depression and possibly indicative of viral chronicity and/or infectious or post-infectious neurodegeneration is sufficient to tear down long held subjective beliefs, cognitions, and attributions by federally associated researchers. Indeed, some beliefs just run too deep for reason.

Demitrack's treatise also falls prey to circular reasoning. On page 21, he states that "persistent Epstein Barr virus infection is almost certainly not tenable for most cases of the syndrome." This may be a true statement. But what about some of the cases? Earlier, he admitted that Epstein Barr virus can be a chronic infection and that there are documented cases of chronic Epstein Barr virus infection. Further, those cases meet the CDC case definition for CFS. Elsewhere in the book, Komaroff states that many of the viruses found and implicated in CFS (HHV-6, etc.) can also be chronic. Some of these are known to be serious infections. Yet despite Komaroff's focus on viral chronicity, Demitrack decides to exclude the chronically infected, whom he admits exist, from the CFS picture. He then goes on to exclude patients with any other objective signs of disease. On page 95, for example, he selects out of the definition of CFS those with neurological symptoms and signs. In discussing brain lesions detected by MRI, he urges us to adopt an alternative "interpretation" of this finding:

". . . Although most of the patients [showing MRI abnormalities] appeared to meet the subsequently published clinical criteria for chronic fatigue syndrome, the possibility that an alternative neurodegenerative disease was present in a subset of the group could not be excluded. Indeed, symptoms [were] not typical of most individuals with chronic fatigue syndrome . . . seizures, ataxia, paresis, . . ."

What might these "alternative neurodegenerative diseases" be? Demitrack doesn't say, nor does he tell the reader why he has decided not to focus on them. In short, Demitrack selects out of the definition of CFS anyone with chronic infection, neurological problems, and other objective signs of disease, only to draw the circular conclusion that CFS is neither a chronic infection nor a neurodegenerative disease (but instead a subjective belief system leading to faulty behavior). It is odd that the book accuses patients and their doctors of faulty cognitions when it would seem that, like Straus, Demitrack has failed to master the simple rules of elementary logic, and begs the question to "prove" his conclusions.

It is false that seizures, ataxia, and paresis are uncommon in CFS. They are only uncommon if one defines them as not being part of the CFS pathology. Why in Demitrack's treatise do the more seriously ill drop out of the discussion? Why would he want to exclude the more serious cases from study? Couldn't more be learned from them? The only plausible answer is that learning is simply not a goal here. The seriously ill are excluded from study because they testify against the behavioral hypothesis.

The authors of the book also take to contradicting themselves. For example, the book states that persons with preexisting psychiatric conditions undergo prolonged recovery or fail to recover from viral infections more frequently than persons without such conditions. Empirical studies in psychology have indeed shown that persons with, say, depression, or even persons whose mother died in their childhood and hence are predisposed to pessimism, do develop all forms of illness (cancer, infections, etc.) more frequently than persons without a pessimistic outlook. Yet it is one thing to say that some psychiatric states contribute to prolonged recovery or failed recovery from viral infections or render individuals more susceptible to infections. It is quite another to say -- contradicting oneself -- that having failed to recover from a viral infection they do not have a viral infection. This contradiction occurs repeatedly throughout the book.

Of course, given that the DSM-IV tends to pathologize and clinicize the entire range of human behavior and experience -- everything from clumsiness (315.4) and snobbery (301.7) to snoring (780.59) and coffee drinking (305.90) are mental disorders according to the DSM-IV -- one can easily use the manual to justify a claim that any group had preexisting psychiatric disease. Thus, the view that "most" CFS patients had preexisting psychiatric disorder is highly subjective.

The two chapters in the book on CBT -- one by Simon Wessely and one by Michael Sharpe -- offer a discussion of patients in a tone of profound hostility, misogyny, and disrespect. Patients don't relapse with exertion, Sharpe states, nor does their condition deteriorate following exertion -- that's only an "interpretation." He suggests that the therapist review with the patient the "evidence" for the belief that post-exertional symptoms signify disease progression. The patient should "generate more benign explanations of [symptom] exacerbation," he says, and "regard the symptoms as positive evidence of an effective challenge to the pathophysiology of the illness" (p. 254).

Like Demitrack, Sharpe seems to hold that personal psychology determines reality. If I think I'm well, I am. A benign explanation of the symptoms, simply, makes them benign. Perhaps Sharpe could cure all diseases by applying this simple reasoning: cancer is only cancer if you think it is, likewise with AIDS, and so on. Indeed, perhaps if Sharpe thinks he can fly he won't be squashed when leaping from tall buildings. At the same time, Sharpe seems to hold that symptom exacerbation -- e.g., increased pain, weakness, flu symptoms, blurred vision, hot/cold chills, shaking chills, fainting, vertigo, parasthesias, night sweats, neuropathies, numbness, paralysis, tachycardias, cardiac arrhythmias, and dementia -- are a positive sign, something the editors and contributors of the book also hold. Again, perhaps they could expand their thesis for other diseases: positive signs are what increase arthritis symptoms, increase an AIDS patient's viral load, exacerbate the symptoms of lupus, and so forth. If one follows the reasoning of the book to its logical conclusions, one might seriously begin to question not only the cognitions of its authors but perhaps even their sanity.

Despite his suggestion of reviewing the "evidence" for the belief that symptoms are severe and represent disease progression, Sharpe himself (and the book in general) selectively ignores well-published data showing that exertion is harmful in CFS, data showing exercise-induced neuroendocrine deficits, oxygen deficits, cardiac ischemia and other cardiac involvement, worsened SPECT, IQ drops, etc. (by Cheney, Natelson, Simpson, Lerner, and others). Nor does Sharpe offer studies that confirm his cognition that the patient is misinterpreting his or her symptoms as more severe than they are.

Finally, it is difficult to overlook the striking similarity of Straus's and Demitrack's thesis to the simplistic New Age models of disease that currently saturate the popular media. Demitrack dresses the model in sophisticated prose and seemingly scientific language, but the core thesis is the same: believe yourself well, and you will be. Or, as Demitrack puts it, "the formulation of alternate [i.e., non-infectious] models of disease . . . is imperative to favorable outcome." He suggests that "observer bias" was responsible for the infectious model of the disease in past epidemics, and sees himself as quite unbiased in the view that it's all a matter of how you think -- personal beliefs determine reality: "Greater functional impairment was associated with factors such as the patient's belief in a viral cause [and] . . . the limiting of exercise." It never occurs to the authors that those who think they have a viral infection may actually have one, or that the functional impairment and exercise limitations may be a result of (not a cause of) severe, systemic disease. For them, it is the belief in viral causality that impairs recovery: ". . . the profound disability of CFS may lie in the cognitions of those afflicted" (p. 227). In fact, the book seems to suffer from a philosophical confusion of fact and concept: "Chronic fatigue syndrome is an illness that is formed . . . by the complex context in which it is diagnosed . . ." Demitrack states, in one of his many moments of a dishonest and underhanded version of philosophical idealism. While it may be true that the concept of CFS is formed by diagnostic contexts -- diseases themselves are entities that occur quite independently of conceptual contexts, however close or far away we are from a conceptual grasp of those diseases. This is a point that is lost on -- or perhaps deliberately obscured by -- Demitrack and his contributors. This conceptual confusion also occurs repeatedly in Straus's work (who once stated that the wave of chronic mononucleosis that swept across the U.S. in the 1980's resulted from physicians' misinterpretation of laboratory tests).

The book discourages the search for causes as "futile." It ignores or dismisses all serious attempts to understand the syndrome and offers false information to physicians, dismissing all data that disconfirm its behavioral thesis. Physicians who believe their patients are portrayed as enablers who perpetuate the disease and who themselves have "attributional bias" (the authors are, of course, bias free, as is anyone who adopts the behavioral thesis).

Demitrack, Straus, Abbey, Wessely, and Sharpe are surely and most certainly right that there are behaviors that perpetuate CFS. Unfortunately, they are the very behaviors that these authors recommend. This is a dangerous book that will perpetuate misconceptions at best and, at worst, cause harm. My concern is for children who will suffer abuse at the hands of physicians as a result of this book. Chronic Fatigue Syndrome: An Integrative Approach to Evaluation and Treatment is not a serious, scientific attempt to understand a disease that has crippled adults and children across the country. Instead, it is a poorly reasoned, conceptually confused, biased piece of rhetoric and trendy New Age religion. The authors state that the patients' belief that their disease is a catastrophe is a "mind trap" and a "cognitive error." Perhaps if Demitrack and Abbey had mastered a few elementary rules of logic, they would have fallen into fewer mind traps and cognitive errors of their own.

Maryann Spurgin holds a Ph.D. in philosophy and taught philosophy prior to developing M.E. Her review of Hillary Johnson's Olser's Web appeared in The Nation in 1996.

Just when you think it can't get worse, more shocking PACE trial revelations‏

From Margaret Williams : further details about PACE Trial data security. Permission to repost.

"Two points merit further consideration: (i) the matter of guaranteed confidential storage of PACE trial data and (ii) the Principal Investigators’ undeclared conflict of interest until after the consent forms were signed by participants.

The PACE trial Protocol published in BMC Neurology on 8 March 2007 was an abridged version
but, as noted by Alem Matthees, the Full Protocol (226 pages) states on page 110:
“Your GP and any other doctors you are consulting will be told you are joining our study. And occasionally, other researchers will need to see your notes so they can audit the quality of our work. An audit might be run by one of the universities helping with our study or hospital regulatory authorities, or by one of the organisations funding our study” http://www.meactionuk.org.uk/FULL-Protocol-SEARCHABLE-version.pdf

What Matthees did not mention was the fact that one of the organisations funding the study was the UK Department for Work and Pensions (DWP). How many participants looked at the funding bodies before signing the consent forms and realising to what they were giving their consent?
Quite how “confidentiality” could be guaranteed if the DWP had access to the data has never been explained, especially as ME/CFS is known to be a targeted disorder for the withdrawal of state benefits, with patients being harassed by the DWP who required a 60-page form to be completed because the DWP menacingly informed such patients: “We have reason to believe that you are capable of work”.
If the PACE trial therapists and Investigators deemed a participant “recovered” enough to resume work, then might that participant quickly discover that the DWP stopped paying benefit? The PACE Trial has been described as a “Trojan horse” for the DWP.
Regarding the secure storage of data, the Full Protocol is unambiguous:
“Will you keep my details confidential?”
“Yes. All your details and all recordings will be kept strictly confidential and held in a locked filing cabinet or on a secure computer. People on our research team will only see your records if they need to for the research”.
The DWP was not involved in research but still had participants’ signed permission to access their records/data.

From the outset, recordings were not kept in a locked filing cabinet: some were stolen and thus lost to review (see previous post on 19th December 2015: https://jcoynester.wordpress.com/2015/12/18/kings-college-london-stalls-some-more-reiterating-refusal-to-release-the-pace-trial-data/#comment-1375
 ).

The Consent Form 1 for baseline assessment which participants were required to sign was clear:

“3. I understand that any of my medical notes may be looked at by responsible individuals from either the trial or regulatory authorities where it is relevant to my taking part in research.

4. I give permission for these individuals to have access to my records.
…

14. I understand that information collected about me for the trial, including my personal details, a copy of this consent form and all of the questionnaires I complete for the trial, will be held securely by the local trial staff and at the PACE trial centre at Queen Mary, University of London. I give permission for this to happen”.
The PACE PIs obtained participants’ consent on the promise of keeping trial data secure, yet they had made no provision to do any such thing.
When the PACE Trial had been running for two years, the Participants’ newsletter (Issue 1, June 2006) reaffirmed that the trial data was safe: “The information is being entered onto a large and secure database, designed and maintained by an independent clinical trial unit at King’s College, London”. This was provided for participants even though the PIs knew that trial data had already been stolen (see previous post #‎comment
-1375).

In relation to the PIs’ undeclared conflict of interest, one of the pre-trial assessments was at Baseline Visit 1; this set out to collect personal data that seems to have little bearing on a clinical trial but could be of value to the DWP and the permanent health insurance industry because the collected data included not only the customary demographic details, date of birth, age, sex, ethnicity, marital or partner status, years of education, occupation (the latter would obviously afford information about a participant’s earnings) but also very detailed questions about participants’ permanent health insurance payments, for example, questions on page 172 ff of the Full Protocol included the following:
“Do you currently receive income protection benefit (income protection or total and permanent disability)?”
“ If yes, how much annually do you receive? £”
“If the participant chooses not to give an answer, please use the prompt card to show income brackets, and record the letter [an alphabetical letter designating an income bracket] that corresponds to the participant's income”.

“Do you currently receive a private medical / retirement pension?”
“If yes, how much weekly do you receive? £
OR
If yes, how much monthly do you receive? £
OR
If yes, how much annually do you receive? £”

“If the participant chooses not to give an answer, please use the prompt card to show income brackets, and record the (alphabetical) letter that corresponds to the participant's income”.

“In the past six months, have you received any one-off payments from income protection or insurance schemes as a result of your health?”

Such specific questions have no clinical relevance but would be of interest to the Chief PI of the PACE trial in his dual role as the re-insurer Swiss Re’s Chief Medical Officer.
As detailed by David Tuller, participants could not give fully informed consent because the PIs’ Iong-standing involvement with the permanent health insurance industry was never disclosed to them. Indeed, it appears that this significant conflict of interest was not initially disclosed even to the Trial Steering Committee: at the meeting on 22nd April 2004, all members present were asked to declare any conflict of interest. It was minuted that no financial conflicts of interest were declared and it was agreed that no-one present had any other substantial or material conflict relevant to their work on the PACE Trial. Amongst those present were Professors Peter White, Michael Sharpe and Trudie Chalder, all of whom worked for the permanent insurance industry. There was a brief mention of paid consultancy work done by the PIs in the BMC Neurology version of the Protocol, which was long after signed consent forms had been obtained."