Objective signs and symptoms documented in ME/CFS
Margaret Williams 29th April 2015
Certain Local Authority areas in England have apparently expressed an interest in hearing from people with ME via their local Healthwatch, a new Health and Social Care watchdog. Introduced in 2013, there is a Healthwatch for all 152 Local Authority areas in England and all report to Healthwatch England, whose mission statement confirms: “We are working towards a society in which people’s health and social care needs are heard, understood and met” (www.healthwatch.co.uk).
Healthwatch England is not to be confused with HealthWatch (www.healthwatch-uk.org), formerly known as The Campaign Against Health Fraud, a UK organisation known for its zealous antagonism towards alternative and complementary medicine and for its promotion of pharmacotherapy as “evidence-based” medicine. Early HealthWatch literature proclaimed that its aims are “to oppose…unnecessary treatment for non-existent diseases” and the same document lists Simon Wessely -- now Professor Sir Simon Wessely, President of The Royal College of Psychiatrists -- as a “leading member of the campaign”. He is on record as regarding ME as a “non-existent disease” and has an extensive published record of advising that the disorder does not exist other than as an “aberrant belief” by the sufferer that s/he has a disorder called ME. HealthWatch is a campaigning organisation that has accepted funding from the pharmaceutical and health insurance industries, the latter persistently refusing to accept ME as a physical disorder and insisting that it is a mental disorder (mental disorders being excluded from benefit payments).
The role of the local Healthwatch authorities is to report to Healthwatch England instances of local failure in the provision of medical and social care. Given that (i) standard NHS care consists of CBT and GET and that these interventions are largely unsuccessful and (ii) all local health authorities will, under the new Health and Social Care Act that came into force in April 2015, be required to provide appropriate NHS services and social care support for people with ME, the following information could be used as evidence why CBT and GET are not appropriate and why they fail to meet the clinical needs of people with ME, particularly the severely affected and those who are home or bed-bound. As the current cost is £3.5 billion per annum for “CFS” alone, it behoves the authorities to provide more appropriate and effective health and social care.
Long-term ME sufferers will already be aware of what follows, but those more recently diagnosed may not yet be so aware; quite certainly, the Local Authorities are unaware, thus the current Healthwatch initiative may afford the opportunity to educate them.
Since 1969, myalgic encephalomyelitis (ME) has been formally listed by the World Health Organisation in its International Classification of Diseases as a neurological disorder and it remains classified as such in ICD-10 at G93.3 under “Diseases of the Nervous System”.
On 11th February 2004 the Health Minister, then Lord Norman Warner, formally confirmed in a letter to The Countess of Mar that the correct classification for the disorder is neurological.
The same Minister reiterated this on 30th January 2006 (HL3612): “There is only one World Health Organisation International Classification of Diseases code for chronic fatigue syndrome/myalgic encephalomyelitis, which is G93.3”.
On 2nd June 2008 the Parliamentary Under-Secretary of State, Department of Health (Lord Darzi of Denham) stated: “My Lords, the Government accept the World Health Organisation’s classification of CFS/ME as a neurological condition….My Lords, I have acknowledged that CFS/ME is a neurological condition” (HLPQ: Health: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis).
Importantly, the Department for Work and Pensions has also confirmed in writing that it does not consider ME/CFS to be a mental disorder (letter of 21st November 2011 to the Countess of Mar signed by Lord Freud, Minister for Welfare Reform). The letter was unequivocal: “The Department of Health has indicated that they have ‘always relied on the definition set out by the World Health Organisation in its International Classification of diseases (ICD) under ICD code G93.3, subheading other disorders of the brain’. The DWP is in agreement with this view. Therefore, for the avoidance of doubt, I can be clear that the Department does not classify CFS/ME as a mental health disorder”.
Such official confirmation has been necessary because since 1988 there has been a powerful drive by the permanent health insurance industry to re-name ME as “Chronic Fatigue Syndrome” (CFS) and it is often known as “CFS/ME” by Wessely et al who assert that it is a somatoform (psychiatric) disorder in which patients produce physical symptoms as a means of expressing emotional distress.
Professor Wessely and his supporters, many of whom work for the permanent health insurance industry, are colloquially known as the “Wessely School” (Hansard: Lords: 9th December 1998:1013); it is a small but influential group led by Simon Wessely from King’s College Hospital and the Institute of Psychiatry (IoP), London, whose intention is known to be to “eradicate” ME (Eradicating “Myalgic Encephalomyelitis”. Pfizer/Invicta: 4-5 /LINC UP, 15th April 1992, Belfast Castle) by dropping “ME” from “CFS/ME” when expedient (BMJ 2003:326:595-597) and then to reclassify “CFS” as a behavioural disorder under syndromes of chronic “fatigue” under Mental and Behavioural Disorders at ICD-10 F48.0.
The Wessely School repeatedly claim that ME has dual classification in the ICD: once as “ME” in the neurological section but again as chronic “fatigue” in the mental health section. This has been denied in writing by the WHO headquarters in Geneva, who in January 2004 stated in writing:
“This is to confirm that according to the taxonomic principles governing the Tenth Revision of the World Health Organization's International Statistical Classification of Diseases and Related Health Problems (ICD-10) it is not permitted for the same condition to be classified to more than one rubric as this would mean that the individual categories and subcategories were no longer mutually exclusive”.
The Wessely School, however, continue to disregard and ignore the WHO taxonomic principles, which is a matter of concern, since the Wessely School psychiatrists are advisors on “CFS/ME” to the UK Government and Departments of State, including the Department of Health, the Department for Work and Pensions, and also to the Medical Research Council and to NICE, which may explain why medical acceptance of ME as a legitimate organic disease has been halted for almost thirty years.
No matter that Ministers have confirmed the correct status of ME and that:
· the WHO has classified ME as a neurological disorder for forty-six years
· there are thousands of published papers demonstrating serious organic pathology in ME/CFS
· the Royal Society of Medicine accepted ME as a nosological entity in 1978
· the UK Department of Health accepted ME as a physical (organic) disease in 1987
· the British Medical Association issued a statement saying that ME was “a newly recognised disease and that we are sympathetic to sufferers” in 1988
· people in the UK with ME have been permanently excluded from donating blood since at least 1989 (Guidelines for the Blood Transfusion Service in the UK, 1989: 5.4; 5.42; 5.43; 5.44; 5.410)
· the UK Disability Living Allowance Board accepted ME as a physical disorder in 1992
· the UK Health Minister went on record stating “ME is established as a medical condition” in 1992
· the UK Chief Medical Officer went in record in 2002 stating that ME should be recognised alongside disorders such as multiple sclerosis and motor neurone disease
· ME has been classified as a neurological disorder in the UK Read Codes (F286) used by all GPs since 2003
· ME has been included in the UK National Service Framework for long-term neurological conditions since its inception in 2005
yet, according to the Wessely School, ME does not exist except as a behavioural disorder from which recovery is possible by means of cognitive “restructuring” and graded aerobic exercise and, despite Ministers’ confirmation that it is not a mental or behavioural disorder, it is these behavioural modification interventions that prevail throughout the NHS, with the inevitable risk of serious iatrogenic harm.
However, having been ubiquitous throughout the UK for about 30 years, the Wessely School beliefs have now been comprehensively shown to be erroneous and ME is known to be a chronic, complex and severely disabling illness and clearly not simply a state of chronic “fatigue”: data indicate that cognitive, autonomic, pain, inflammatory and neuroinflammatory symptoms are the predominant clinical features (http://www.cfinitiative.org).
Reproducible signs documented in ME
Despite the Wessely School’s insistence that there are no objective signs of organic disorder in ME/CFS, there are numerous objective reproducible abnormal signs that are discernable by any reasonably competent physician. They include the following:
Abnormal findings on testing include:
None of these can rationally be explained as evidence of a behavioural disorder.
The problem is that many doctors refuse to examine ME/CFS patients – or even to lay a finger on them – because ME/CFS patients are largely despised by the medical profession whose members have been overly influenced by the Wessely School’s portrayal of people with ME, namely that patients with “CFS/ME” are seeking sympathy, time off work, or other advantages of the sick role.
In 1990, Wessely wrote in a medical textbook (Chronic Fatigue and Myalgia Syndromes. In: Psychological Disorders in General Medical Settings Ed: N Sartorius et al. Pub: Hogrefe & Huber):
“Other symptoms include muscle pain and many somatic symptoms, especially cardiac, gastrointestinal and neurological….Do any of these symptoms possess diagnostic significance? The answer is basically negative”.
“The description given by a leading gastroenterologist at the Mayo Clinic remains accurate: ‘ The average doctor will see they are neurotic and he will often be disgusted with them’ ”.
Indeed, in 1994 one of the medical trade magazines published an article entitled “GPs despise the ME generation” (GP: April 1994). The article said: “studies have shown that that most ME patients rate contact with medical services as unhelpful” and little has changed in the intervening years.
On 17th May 1995 Wessely spoke at a Symposium on “CFS” entitled “Occupational Health Issues for Employers” held at the London Business School, at which attendees were informed that ME/CFS has been called “the malingerer’s excuse”.
The strategy of portraying people with ME/CFS as malingerers is extremely damaging to sick people who already experience prejudice, ignorance and medical arrogance; as Millen et al pointed out in 1998: “Often CFS sufferers are stigmatised, or fear such labelling, as a ‘malingerer’ or are treated as having other psychological and somatic properties attributed to their ‘undefined illness’ ” (International Journal of Sociology and Social Policy 1998:18:7/8:127-147).
Symptoms regularly noted and documented in ME/CFS include:
extreme malaise; abdominal pain and diarrhoea; post-exertional exhaustion almost to the point of collapse; inability to stand unsupported for more than a few moments – this is a classic finding in ME/CFS; sometimes too weak to walk (different from deconditioning); inability to walk upstairs or to maintain sustained muscle strength, as in repeated brushing of hair with arms elevated, or inability to carry a shopping bag, or dry oneself after a bath, peel vegetables or prepare a meal; neuromuscular incoordination, not only of fine finger movement with clumsiness and inability to control a pen and to write legibly, but also of the larynx and oesophagus -- a frequent complaint is the need to swallow carefully to avoid choking; oesophageal spasm and pain; dysequilibrium ie. loss of balance; staggering gait (ataxia); bouts of dizziness and frank vertigo; difficulty with voice production, especially if speaking is sustained; aphasia (inability to find the right word); muscle cramps, spasms and twitching; black-outs and seizure-like episodes; spasmodic trembling of arms, legs and hands; episodes of angor animi (brought about by abrupt vasomotor changes that cause the sufferer to have uncontrollable shaking, like a rigor, and to think they are at the point of death) – it is essential to understand the terror that such attacks induce in a patient, and no patient can fake them; photophobia; difficulty focusing and in visual accommodation, with rapid changes in visual acuity; blurred and double vision, with loss of peripheral vision; eye pain; swollen and painful eyelids, with inability to keep eyelids open; tinnitus; hyperacusis, for example the noise of a lawnmower can cause acute distress and nausea; heightened sensory perception (for example, acute sensitivity to being patted on the back; inability to tolerate lights, echoes, smells, movement, noise and confusion such as found in a shopping mall or supermarket without being reduced to near-collapse); frequency of micturition, including nocturia; peripheral neuropathy; numbness in face; altered sleep patterns, with hypersomnia (in the early stages) and insomnia (in the later stages); alternate sweats and shivers; temperature dysregulation, with intolerance of heat and cold; parasthesias; sleep paralysis; intermittent palindromic nerve pains; tightness of the chest alternating with moist chest; muscle tenderness and myalgia, sometimes burning or vice-like; typically shoulder and pelvic girdle pain, with neck pain and sometimes an inability to hold the head up; orthostatic tachycardia; orthostatic hypotension, and symptoms of hypovolaemia, with blood pooling in the legs and feeling faint due to insufficient blood supply to the brain; labile blood pressure; intermittent chest pain akin to myocardial infarct; segmental chest wall pain; subcostal pain; vasculitic spasms, including headaches; cold and discoloured extremities, with secondary Raynaud’s; easy bruising; peri-articular bleeds, especially in the fingers; shortness of breath on minimal exertion; the need to sleep upright because of weakness of the intercostal muscles; pancreatic exocrine dysfunction leading to malabsorption; rashes (sometimes vasculitic in nature); flushing of one side of the face; ovarian-uterine dysfunction; prostatitis; hair loss, and mouth ulcers that make speaking and eating difficult. The notable point about symptoms in ME/CFS is their variability.
All the above symptoms and more are documented in the literature; they bear little resemblance to “chronic fatigue” or to a “continuum of on-going tiredness”, a description of “CFS/ME” often used by the Wessely School.
The Wessely School ignore the published evidence (not hypotheses) of the following that have been documented in ME/CFS:
Dr Elizabeth Dowsett, a former President of the ME Association, was clear: “There is ample evidence that ME is primarily a neurological illness, although non-neurological complications affecting the liver, cardiac and skeletal muscle, endocrine and lymphoid tissues are also recognised. The commonest causes of relapse are physical or mental over-exertion. The prescription of increasing exercise can only be counter-productive. Some 20% have progressive and frequently undiagnosed degeneration of cardiac muscle which has led, in several cases, to sudden death following exercise. Neurological problems include exhaustion, weakness and collapse following mental or physical exertion beyond the patient’s capacity. This arises from metabolic damage. Problems with balance are common in ME due to involvement of spinal nerve tracts in the damaged brain stem. Over 70% of ME patients suffer from significant bone and muscle pain (a further consequence of brain stem damage which seriously affects their mobility). Other patients have in addition metabolic damage to muscle fibres. 30% of patients with abnormal exercise tests have evidence of persistent infection in the muscles, and evidence of muscle infarcts. (Patients with ME exhibit) jitter due to incoordinated muscle fibre action, following damage to the neuromuscular junction. Patients with ME suffer a variety of symptoms arising from autonomic nervous system dysfunction, including liability to a dangerous drop in blood pressure on
standing for more than a few minutes” (http://www.25megroup.org/Information/Medical/dowsett’s/mobility%20problems.htm ).
Recent research from the US suggests that true ME (as distinct from ubiquitous chronic “fatigue”) is an autoimmune disorder: “Our results indicate a markedly disturbed immune signature in the cerebrospinal fluid of cases that is consistent with immune activation in the central nervous system, and a shift towards an allergic or T-helper type-2 pattern associated with autoimmunity….Profiles of ME/CFS subjects also differed from those of MS subjects, with ME/CFS cases showing a markedly greater degree of central nervous system immune activation as compared with those with MS” (M. Hornig et al; Molecular Psychiatry 31st March 2015: doi:10.1038/mp.2015.29).
Dr Jose Montoya, leader of the US Stanford University ME/CFS Programme, is on record stating: “Our cytokine data contradicts the erroneous conclusion that ME/CFS is not an inflammatory disease and supports that not only an inflammatory state exists in these patients but it also opens the door for the use of anti-inflammatory drugs as… in other inflammatory diseases whose aetiology is still unknown… including systemic lupus erythematosus” (http://www.cortjohnson.org/blog/2015/04/01/big-studies-big-possibilities-montoya-and-unger-in-their-chronic-fatigue-programs ).
In the US the Department of Health and Human Resources, the CDC and FDA asked the Institute of Medicine (IOM) to convene an expert committee to examine the evidence base for ME/CFS. From a comprehensive review of the scientific literature and having conferred with leading researchers in the field, the IOM concluded that "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome -- commonly referred to as ME/CFS -- is a legitimate, serious, and complex systemic disease that frequently and dramatically limits the activities of affected individuals”.
Furthermore, in the UK, NICE has at last indicated that there needs to be a revision of its 2007 Clinical Guideline on CFS which recommend behavioural interventions as the management of choice: at a meeting of the Forward-ME Group held in the House of Lords in June 2014, Professor Mark Baker (Director of the Centre for Clinical Practice at NICE) said that the 2007 NICE Guideline on ME/CFS was no longer meeting the needs of people with ME/CFS and should be replaced.
For more information, see:
Invest in ME (http://www.investinme.org/)
ME Research UK (http://www.meresearch.org.uk/)
The US Institute of Medicine