Category: Myalgic Encephalomyelitis

Are echoviruses still orphans?

Abstract:

A review of some of the outbreaks of disease caused by echoviruses demonstrates their ability to cause significant morbidity and mortality world-wide.

There are now 30 recognised echovirus serotypes; several of the original serotypes have been re-classified. More recently, echovirus 22 has been shown to have significant molecular differences from other types and unusual epidemiological features. Echovirus types 7, 11, 19 and 30 have been associated with significant outbreaks in neonatal units and echovirus types 9, 16 and 25 are more frequently associated with exanthem. Echovirus type 3, although relatively uncommon in the UK, was associated with large outbreaks in China.

Since the decline in poliomyelitis, the increase in reports of non-polio enteroviruses has revealed a corresponding increase in associated cases of myalgic encephalomyelitis and post-viral fatigue syndrome.

 

Source: Hill WM. Are echoviruses still orphans? Br J Biomed Sci. 1996 Sep;53(3):221-6. http://www.ncbi.nlm.nih.gov/pubmed/8914350

 

‘Too tired to go to the support group’: a health needs assessment of myalgic encephalomyelitis

Abstract:

BACKGROUND: Myalgic encephalomyelitis (ME) is a mysterious and controversial condition. Debate has centred upon its causation, and the purchasing question-which services to commission for people with ME-has not been addressed.

METHODS: A health needs assessment was made of people with ME in Wakefield, based upon published (including grey) literature, and local informants.

RESULTS: Previous studies have mostly reflected institutional outbreaks; local needs will reflect community, sporadic cases but there is little information about these. The very wide estimates of prevalence (between zero and 57000 for a district the size of Wakefield) indicate a fundamental problem over the validity of the concept of ME. Four sets of health needs emerged from the literature and from local informants: a medical diagnosis, rest, specific treatments and social care. All four are highly debatable.

CONCLUSION: There are no proven services or interventions which the health authority should purchase for people with ME. Purchasing, being a blunt tool for service change, is unlikely to improve health care given the disagreements over the condition.

 

Source: Sutton GC. ‘Too tired to go to the support group’: a health needs assessment of myalgic encephalomyelitis. J Public Health Med. 1996 Sep;18(3):343-9. http://jpubhealth.oxfordjournals.org/content/18/3/343.long (Full article)

 

Chronic fatigue in the community: ‘a question of attribution’

Abstract:

Thirty-eight subjects identified in a large community survey were found to attribute their fatigue to ‘myalgic encephalomyelitis’ (ME). They were matched randomly to two other groups of subjects who attributed their fatigue to either psychological or social factors. All three groups were followed up 18 months later and were asked to complete a series of questionnaires that examined fatigue, psychological distress, number of symptoms, attributional style and levels of disability.

At onset the ‘ME’ group were found to be more fatigued, had been tired for longer but were less psychologically distressed than the other two groups. At follow-up the ‘ME’ group were more handicapped in relation to home, work, social and private leisure activities, even when controlling for both duration of fatigue and fatigue at time 1, but were less psychologically distressed.

The relationships between psychological distress, specific illness attributions, attributional style and their effect on the experience of illness and its prognosis are discussed. Attributing fatigue to social reasons appears to be most protective.

 

Source: Chalder T, Power MJ, Wessely S. Chronic fatigue in the community: ‘a question of attribution’. Psychol Med. 1996 Jul;26(4):791-800. http://www.ncbi.nlm.nih.gov/pubmed/8817714

 

Missing the meaning and provoking resistance; a case of myalgic encephalomyelitis

Abstract:

BACKGROUND: The interaction between a clinician and a patient who put his problems down to myalgic encephalomyelitis is described. Despite attempting a patient-centred approach, the doctor acted on his own understanding of the meaning of this diagnosis without gaining proper insight into what it meant for the patient. This failure not only led to damaged rapport, it may have contributed to delayed recovery.

OBJECTIVES: The unsatisfactory nature of this encounter led the clinician to consider more effective consulting techniques.

METHODS AND RESULTS: A hypothetical interaction is constructed in which the clinician uses reflective listening statements to understand the patient’s true meaning of this self-diagnosis.

CONCLUSIONS: Despite well intentioned attempts to be patient-centered through widening the consultation beyond the biomedical to include personal and contextual factors, clinicians may still end up imposing their own medical meaning on patient’s words. Damaged rapport is a signal that another track could be more fruitful and reflective listening is one strategy which enables clinicians to check that they fully understand the patient’s meaning. Provoking resistance by following strategies which are not appropriate for the patient might then be avoided.

 

Source: Butler C, Rollnick S. Missing the meaning and provoking resistance; a case of myalgic encephalomyelitis. Fam Pract. 1996 Feb;13(1):106-9. http://fampra.oxfordjournals.org/content/13/1/106.long (Full article)

 

Patients with a self diagnosis of myalgic encephalomyelitis

Comment on: Patients with a self diagnosis of myalgic encephalomyelitis. [BMJ. 1995]

 

EDITOR,-S J Hurel and colleagues should have checked their facts more thoroughly before making such a generalised attack on the content of literature produced by the two support groups for patients with myalgic encephalomyelitis (ME).

The ME Association does not believe that candida albicans is involved in the pathogenesis of the condition. Our booklet Guidelines for the Care of Patients states that “no reliable scientific evidence has ever been published to support such a link” and that “consequently, anti-candida regimes involving highly restricted diets, probiotics and antifungal drugs cannot be recommended.”2 Equally, we repeatedly warn our members about the serious dangers of colonic cleansing (particularly in relation to the risk of unhygienic operators transferring gastrointestinal pathogens) and advise extreme caution when consulting herbalists or buying over the counter herbal remedies. If we really were producing literature that contained pseudoscientific nonsense and advocated dubious forms of alternative therapy I doubt whether the Department of Health would be providing funding to expand the work of our information department.

Had the authors checked with our booklet they would have found that we are not in favour of self diagnosis and strongly recommend consideration of nearly 50 physical and psychological conditions that can present with chronic fatigue as the principal clinical feature. In this context pituitary tumours are specifically mentioned as we are aware of at least two other cases similar to that reported by Hurel and colleagues in which misdiagnosis occurred. Furthermore, our literature emphasises that “significant or progressive weight loss is not a normal feature of ME, and where it occurs alternative explanations (eg hormonal) should always be excluded.”

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2550999/pdf/bmj00614-0065a.pdf

 

Source: Shepherd C. Patients with a self diagnosis of myalgic encephalomyelitis. BMJ. 1995 Oct 14;311(7011):1021. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2550999/pdf/bmj00614-0065a.pdf (Full comment)

 

General practitioners’ attitudes to patients with a self diagnosis of myalgic encephalomyelitis

Comment in:

GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Evidence supports presence of encephalitis. [BMJ. 1995]

GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Sufferers continue to be misrepresented. [BMJ. 1995]

 

Interest in the symptom of tiredness has increased with the suggestion of a syndrome of prolonged fatigue caused by infection. The syndrome is referred to as myalgic encephalomyelitis, even though no evidence exists that sufferers have encephalitis or myelitis. Active support organisations encourage self diagnosis 1 and advise how to approach a general practitioner who “doesn’t believe in ME.”2 Problems in doctor-patient relationships may be a factor in persistent disability in fatigue states.3 We therefore used a case vignette method to examine how self diagnosis of myalgic encephalomyelitis could influence general practitioners.4

You can read the full article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2548881/pdf/bmj00581-0036.pdf

 

Source: Scott S, Deary I, Pelosi AJ. General practitioners’ attitudes to patients with a self diagnosis of myalgic encephalomyelitis. BMJ. 1995 Feb 25;310(6978):508. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2548881/

 

Coming to terms with ME

Abstract:

Myalgic encephalomyelitis (ME) is a chronic, severely disabling condition, but one which is little understood and about which there are many misconceptions. Former health visitor Anne Hoad, diagnosed with ME in her mid-50s, describes her own struggle to come to terms with the illness and the limitations it has placed on her life.

 

Source: Hoad A. Coming to terms with ME. Health Visit. 1994 Sep;67(9):302-3. http://www.ncbi.nlm.nih.gov/pubmed/7960845

 

Chronic fatigue syndrome and myalgic encephalomyelitis

Comment on:

Chronic fatigue syndrome. Distinguish between syndromes… [BMJ. 1994]

Chronic fatigue syndrome. Role of psychological factors overemphasised. [BMJ. 1994]

 

Editor,-Our recent editorial on the chronic fatigue syndrome and myalgic encephalomyelitis prompted considerable correspondence,’ which raised issues of case definition, clinical management, and attitudes towards people with psychiatric illnesses. Sadly, many of our critics show that the editor of the BMJ is wrong to state in the “editor’s choice” in the issue of 14 May that “only the naivest medical students think that diseases have some independent, objective reality.” Medical students show greater intellectual sophistication in tackling the classification of ill defined illnesses than many patients and doctors-and particularly medical practitioners with self diagnosed myalgic encephalomyelitis.

Case definition-Ellen M Goudsmit’ and Nick Anderson’ assert that research criteria for the chronic fatigue syndrome fail to distinguish myalgic encephalomyelitis and exaggerate psychiatric associations. The best replicated research finding, however, is that patients suffer substantial emotional morbidity, whether the chronic fatigue syndrome is defined by British or, as patient groups prefer, Australian or American criteria. All three sets of criteria can be used to identify cases on a continuum of fatigue, which includes myalgic encephalomyelitis. We did not cite DO Ho-Yen’s prevalence study as it used an idiosyncratic definition of cases of the ‘chronic fatigue syndrome and surveyed doctors’ diagnoses rather than patients.

You can read the full comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540769/pdf/bmj00450-0067b.pdf

 

Source: Lawrie SM, Pelosi AJ. Chronic fatigue syndrome and myalgic encephalomyelitis. BMJ. 1994 Jul 23;309(6949):275. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540769/

 

Chronic fatigue syndrome. …and study them separately

Comment on: Chronic fatigue syndrome: prevalence and outcome. [BMJ. 1994]

 

Editor,-The struggle over myalgic encephalomyelitis and the chronic fatigue syndrome is not, as S M Lawrie and A J Pelosi suggest, whether they are physical or mental illnesses. Both sides in this debate accept that most illnesses combine organic and psychological factors. The struggle is about methodology and definition and, in particular, how different methodologies and definitions inevitably lead to different findings on the degree to which depression is a perpetuating agent in these conditions.

One side favours studying the chronic fatigue syndrome as a single entity, arguing that there is insufficient knowledge at present to differentiate between different chronic fatigue syndromes. This side prefers Sharpe et al’s broad definition of the syndrome, which includes depressive illness, anxiety disorders, and the hyperventilation syndrome.2 Unsurprisingly, studies that use these criteria find higher levels of depression ) or “psychosocial disorders”-yet another woolly term).

The other side argues that there is sufficient knowledge to distinguish specific chronic fatigue syndromes, particularly the much studied myalgic encephalomyelitis, and that it must be better science in these cases to study such syndromes in their own right. Furthermore, it argues that the study groups used in research based on broadbrush criteria will have been so aetiologically heterogeneous as to invalidate the findings. This side, which includes the national patient organisations, equates myalgic encephalomyelitis with Holmes et als tighter definition of the chronic fatigue syndrome, which focuses more on organic symptoms and, again unsurprisingly, finds lower levels of depression similar to those found in patients with cancer and multiple sclerosis-that is, the levels that might be predicted in any chronic illness.3

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540172/pdf/bmj00440-0054a.pdf

 

Source: Anderson N. Chronic fatigue syndrome. …and study them separately. BMJ. 1994 May 14;308(6939):1298. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540172/

 

The chronic fatigue syndrome

Sir, Although many doctors equate chronic fatigue syndrome (Oxford definition) with what we call myalgic encephalomyelitis (ME), there are some noteworthy differences.

Firstly, in Britain, chronic fatigue syndrome is an umbrella term covering a number of different conditions including neurasthenia, effort syndrome and fibromyalgia. ME is a more specific entity (see the ‘ 10, 1992) and unlike the above, has been closely linked to a persistent infection and immune system activation.

Secondly, while profound fatigue is undeniably the most common symptom of ME, it is rather different from the type of tiredness which people normally experience after exertion. For example, it is often accompanied by feelings of illness which are so unlike anything which people have had before that patients frequently say they cannot describe it. Some have referred to the latter as a severe ‘flu-like’ malaise, others have likened it to being poisoned. Regrettably, having subsumed ME under a general heading of chronic fatigue syndrome, this important and disabling aspect of ME will almost certainly be overlooked.

You can read the rest of this letter here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2399627/pdf/postmedj00050-0083a.pdf

 

Source: Macintyre A, Hume MC. The chronic fatigue syndrome. Postgrad Med J. 1993 Feb;69(808):164. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2399627/