A Review of BMJ Best Practice Document on Chronic Fatigue Syndrome by Professor James Baraniuk
Professor Malcolm Hooper 24th June 2018
NOTE: I was asked by the BMJ Section Editor (BMJ Best Practice and BMJ Learning) to provide a peer review of Professor James Baraniuk’s document on “CFS”, to which I agreed. My comments below relate to the version sent to me. In my opinion, it indicated how dangerous the medical education programme about ME/CFS is in the UK. This was borne out by my face-to-face discussion with Professor Baraniuk himself on 1st June 2018 in London: he confirmed to me that his original report had already been sent by the BMJ to other referees and that he had received 156 comments which he was instructed had to be incorporated in his report. It was plainly obvious that those comments had been included in the version sent to me. Professor Baraniuk assured me that I should go ahead and respond as I wished, so it seems he knew his report was not as he intended it to be. In telephone discussions with the BMJ Section Editor, it was stressed to me that the BMJ had to have (quote) “equality”.
Current BMJ Best Practice for CFS/ME (October 2018):
My response to reading this long document of 102 pages is such that I am unable to carry out the review by simple annotations or minor additions to it.
I am grateful for the invitation to respond by means of a single document that sets out my major concerns which I hope the editor(s) will find helpful.
The document is far too long if it is intended to be a BMJ Best Practice reference tool help GPs and others to quickly diagnose and support their patients presenting with ME/CFS.
As it stands, it is not fit for purpose. The document is badly presented: it needs to be clear and factually accurate.
It lacks focus and any critical awareness of the issues under consideration.
It shows little understanding of the latest research, or the social and political considerations (eg. access to social security payments) that patients and informed clinicians feel so strongly about.
The confusion and complexity of the Best Practice document is far from satisfactory and in need of a thorough overhaul.
It is a wasted opportunity to clarify a situation that has evaded medical education for the last three decades.
2. The Title
The report is entitled “Chronic Fatigue Syndrome” but throughout the text the term “CFS/ME” is used, yet the name myalgic encephalomyelitis does not even feature in the title.
Myalgic Encephalomyelitis (ME) has been classified as a neurological disorder by the World Health Organisation (WHO) in its International Classification of Diseases (ICD) since 1969, but there is no mention of this anywhere in the document.
Throughout the document there is confusion about terminology (ME, CFS/ME, fatigue) but it is essential to be aware that the terms are not clinically interchangeable.
On pages 11, 19, 22, 23, 28, 30, 51 and 102, Baraniuk refers to “CSF/ME”, which appear to be typographical errors, since cerebrospinal fluid (CSF) is not being discussed.
3. Historical perspective
The term myalgic encephalomyelitis was coined in 1955 (Lancet 1955:394-395) and in 1969 it was formally classified by the WHO as a neurological disorder; it was accepted by The Royal Society of Medicine as a distinct disease in 1978; in 1987 the term “chronic fatigue syndrome” was introduced at a meeting of CDC scientists for political, not medical reasons, at which it was decided to change the name from ME to CFS and “CFS” appeared in publications from 1988 onwards.
In 1992 the term “CFS” was included in ICD-10 as a synonym for ME (referable only to ME at G93.3), but in the UK, a group of psychiatrists intended to eradicate the neurological disease ME and introduced the term “CFS/ME” (in that order, as distinct from “ME/CFS”) with their stated intention of dropping “ME” from “CFS/ME” when expedient and then reclassifying “CFS” as a behavioural disorder (BMJ 2003:326:595-597).
In the UK, recruitment for the PACE Trial began in 2004 and the Patient Clinic Leaflet stated: “Chronic fatigue syndrome” is “also known as postviral fatigue syndrome, myalgic encephalomyelitis (ME) or myalgic encephalomyelopathy….Medical authorities are not certain that CFS is exactly the same illness as ME but until scientific evidence shows that they are different they have decided to treat CFS and ME as if they are one illness”.
To complicate things even further, despite his having received ethical approval and funding to include ME in the clinical trial, following publication in 2011 of selective PACE Trial results in The Lancet, the Chief Principal investigator, psychiatrist Professor Peter White, wrote to Richard Horton, editor-in chief of The Lancet, denying outright that the PACE Trial had been studying patients with ME: “The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME”.
CFS came to be applied to many different things and considerably broaden the meaning of CFS/ME making it virtually meaningless. Hence, it allowed consideration of other chronic infections, EBV and other herpes viruses, lyme, chlamydia, rickettsia, some vaccines, eg Hep B and latterly HPV and other intracellular organisms eg brucellosis, chemical and environmental toxins, organophosphates, Gulf War Syndrome, Aerotoxic Syndrome, some metals etc. This is ‘confusion worse confounded.’
Clinically, ME is a separate disorder from what is now termed CFS or “CFS/ME”: ME is a recognisable post-enteroviral disease with specific features; it may also follow vaccinations (for which significant evidence already exists and more evidence is emerging). However, there are a number of states of chronic fatigue which now fall under the “CFS/ME” umbrella and the resultant confusion is responsible for the heterogeneity of the patient population and hence the diverse research findings.
Unless the report author provides the contextual background, he affords a disservice not only to the physicians he is endeavouring to educate but – more importantly -- to those patients who depend on those clinicians.
4. The way forwards
The term “CFS/ME” now has come to mean a behavioural disorder and this report repeatedly portrays CFS as deconditioning which can be effectively treated by cognitive behavioural therapy (CBT) and graded exercise therapy (GET), but there is no evidence whatsoever of deconditioning in patients with ME/CFS. If this whole document is not based on ME/CFS as a neurological/neuroimmune disorder, then it is falsely grounded.
The report does mention biomedical research, but it appears to look on it sceptically, and the take-home message is clear: “Patients should be educated on how secondary physical deconditioning can emerge due to increased resting and activity restriction” (page 76). This is misleading and it perpetuates the widely-disproven psychosocial dogma that “CFS/ME” is a mental disorder.
It is essential to gain the immediate attention of the reader seeking up-to-date information, so it would be better to start off with a high impact paragraph such as:
“Studies suggest that there is a risk of earlier mortality in ME/CFS and UK Coroners have recorded ME as the cause of death. ME is a serious, disabling, chronic neuroinflammatory disorder: as long ago as August 2004 the US CDC added it to its top priority list of emerging infectious diseases. It is not a behavioural disorder; it is not a form of chronic fatigue (which is not the same as chronic fatigue syndrome as listed in ICD-10 at G93.3), nor is it a form of depression and most patients have no psychiatric disorder. There is a state of chronic, low-grade immune activation, with abnormal T-helper/T-suppressor cells and extremely low NK cell numbers/function; brain abnormalities have been proven, as have neuroendocrine abnormalities. ANS dysfunction is integral to the diagnosis, as is disordered gene expression (important in energy metabolism – metabolomics have convincingly demonstrated defects in pathways converting sugars, lipids and amino acids into energy https://www.youtube.com/watch?v=VprqU9knS4Y). There is evidence of biochemical dysregulation in the 2-5A synthetase/RNASE L pathway (ie. an abnormally elevated anti-viral response). Cardiovascular abnormalities are seminal (including altered brain perfusion, reduced cardiac mass and low circulating blood volume), as is an abnormal response to exercise, with muscle weakness (enteroviral sequences being found in muscle), as well as evidence of impaired oxygen delivery to muscles, with recovery rates for oxygen saturation being 60% lower than in normal controls (Kevin K McCully et al. Clinical Science 1999:97:603-608). Since 2000, patients with ME have been advised to consider taking legal action against health professionals when inappropriate exercise is prescribed. (ME Association). Inability to tolerate medication is well-documented as being virtually pathognomonic (Professor Charles Poser, Department of Neurology, Harvard Medical School, Dublin International Meeting on ME/CFS, 18th-20th May 1994, World Federation of Neurology). There is high occurrence of allergies and hypersensitivities. 25% of patients with ME are severely affected and are bed/house-bound. 80% of patients do not get better: published CDC statistics show only 4% in remission (not recovery) at 24 months (US CDC CFS Programme Update, 29th August 2001)”.
Physicians need to be presented right from the beginning of the document with a clear list of key physical symptoms, but as it stands, the document fails to do so and the author focuses on cognitive problems. He does not mention immune, cardiovascular, neuroendocrine or gastro-intestinal symptoms until much later in the document, whereas from the outset there needs to be a prominent box listing the cardinal symptoms; these include:
post-exertional malaise (PEM); exhaustion; muscle pain and weakness; abdominal pain; diarrhoea; balance disturbance/dizziness; shortness of breath; palpitations; joint pain; easy bruising; allergies/hypersensitivities to foods previously tolerated; chemical sensitivities (including to therapeutic drugs); frequency of micturition including nocturia; visual problems; flushing (not the same as hot flushes); emotional lability; lack of restful sleep and cognitive problems. Pain may be intractable but it may sometimes be absent; hair loss may be total or partial.
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