Tag: self-diagnosis

Epidemiology of Myalgic Encephalomyelitis among individuals with self-reported Chronic Fatigue Syndrome in British Columbia, Canada, and their health-related quality of life

Abstract:

Background: There is no accurate data on the epidemiology of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) in Canada. The aims of the study were to describe the epidemiology of confirmed ME/CFS cases and their health-related quality of life (HRQoL).

Methods: This is a cross-sectional study with British Columbia Generations Project (BCGP) participants who self-reported having CFS and population-based controls with no fatiguing illness. Participants completed the Symptoms Assessment Questionnaire, RAND 36-item Health Survey, and Phenotyping Questionnaire Short-form. These assessments enabled the identification and characterization of confirmed cases of ME/CFS. Those with self-reported diagnoses who did not meet study diagnosis of ME/CFS were subcategorized as non-ME/CFS cases.

Results: We included 187 participants, 45.5% (n=85) self-reported cases and 54.5% (n=102) controls; 34% (n=29) of those who self-reported ME/CFS fulfilled diagnostic criteria for ME/CFS. The population prevalence rates were 1.1% and 0.4% for self-reported and confirmed ME/CFS cases respectively. Participants displayed significantly lower scores in all eight SF-36 domains compared to the other groups. Mental component scores were similar between ME/CFS and non-ME/CFS groups. The main risk factor for low HRQoL scores was fatigue severity (β = -0.6, p<0.001 for physical health; β = -0.7, p<0.001 for mental health).

Conclusions: The majority of self-reported cases do not meet diagnostic criteria for ME/CFS, suggesting that self-reported CFS may not be a reliable indicator for a true ME/CFS diagnosis. HRQoL indicators were consistently lower in ME/CFS and non-ME/CFS cases compared to controls, with ME/CFS cases having lower scores in most domains. Having higher symptom severity scores and perceived poorer health were the significant affecting factors of lower HRQoL. Although self-report can be used as screening to identify cases in populations, we suggest studies of ME/CFS should include appropriate medically confirmed clinical diagnosis for validity. Further large-scale population-based studies with simultaneous medical assessment are suggested to further characterize validity parameters of self-reported diagnosis.

Source:Enkhzaya Chuluunbaatar-Lussier, Melody Tsai, Travis Boulter, Carola Munoz, Kathleen Kerr, Luis Nacul. Epidemiology of Myalgic Encephalomyelitis among individuals with self-reported Chronic Fatigue Syndrome in British Columbia, Canada, and their health-related quality of life. medRxiv 2024.05.16.24307437; doi: https://doi.org/10.1101/2024.05.16.24307437 https://www.medrxiv.org/content/10.1101/2024.05.16.24307437v1 (Full study available as PDF file)

Frequency and characteristics of chronic fatigue syndrome in multiple sclerosis patients at a university hospital in Eastern Saudi Arabia

Abstract:

BACKGROUND: Multiple sclerosis (MS) is a chronic, inflammatory demyelinating disease that affects various parts of the central nervous system. Fatigue, a common symptom, transient, prolonged, or chronic experienced by individuals with MS, can significantly impact daily functioning. It can be associated with underlying pathological processes or can have an idiopathic cause, such as chronic fatigue syndrome (CFS). The study aimed to assess the presence and etiology of fatigue in MS patients and its relationship with CFS.

MATERIALS AND METHODS: This cross-sectional study was conducted in the Eastern Province of Saudi Arabia. Data were collected using a questionnaire from a sample of 225 MS patients receiving care at our university hospital. The questionnaire included the Centers for Disease Control and Prevention (CDC) criteria for diagnosing CFS and the Expanded Disability Status Scale to evaluate fatigue in MS patients.

RESULTS: Of the total of 225 MS patients who participated in this study, 87.1% were diagnosed with relapsing-remitting MS, 6.7% with primary progressive MS, 3.6% with clinically isolated syndrome, and 2.7% with secondary progressive MS. About 53% had experienced fatigue that persisted for over 6 months. Analysis of CFS diagnosis revealed that 7.3% of patients met both CDC criteria and self-reported answers while 17.5% reported having CFS despite not meeting the CDC criteria. These findings highlight a significant lack of agreement between patient-reported diagnoses and established criteria, indicating poor agreement (P = 0.028).

CONCLUSION: The study found an association between CFS and MS, and a significant impact on daily functioning. The study revealed lack of agreement between patient-reported diagnoses and established criteria for CFS. This emphasizes the need for a standardized approach to diagnosis and evaluation of fatigue in MS patients.

Source: AlAmri, Abdullah S.; AlShamrani, Foziah J.; AlMohish, Noor M.; Zafar, Azra S.; Alnaaim, Saud A.1; Alazman, Hatem A.; Al-Ghanimi, Ibrahim A.2; AlNahdi, Abdullah A.; AlDawsari, Fahad A.; AlMatrafi, Shahad B.3; Alzahrani, Ghaida R.3; Alnamlah, Muna S.; Alkhalifa, Rawan A.. Frequency and characteristics of chronic fatigue syndrome in multiple sclerosis patients at a university hospital in Eastern Saudi Arabia. Journal of Family and Community Medicine 31(1):p 63-70, Jan–Mar 2024. | DOI: 10.4103/jfcm.jfcm_73_23 https://journals.lww.com/jfcm/fulltext/2024/31010/frequency_and_characteristics_of_chronic_fatigue.9.aspx (Full text)

A pilot registry of unexplained fatiguing illnesses and chronic fatigue syndrome

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) has no diagnostic clinical signs or biomarkers, so diagnosis requires ruling out conditions with similar signs and symptoms. We conducted a pilot registry of unexplained fatiguing illnesses and CFS to determine the feasibility of establishing and operating a registry and implementing an education outreach initiative. The pilot registry was conducted in Bibb County, Georgia. Patient referrals were obtained from healthcare providers who were identified by using various education outreach initiatives. These referrals were later supplemented with self-referrals by members of a local CFS support group. All patients meeting referral criteria were invited to participate in a screening interview to determine eligibility. If patients met registry criteria, they were invited to a one-day clinic for physical and laboratory evaluations. We classified patients based on the 1994 case definition.

RESULTS: We registered 827 healthcare providers. Forty-two providers referred 88 patients, and 58 patients (66%) completed clinical evaluation. Of the 188 CFS support group members, 53 were self-referred and 46 (87%) completed the clinical evaluation. Of the 104 participants completing evaluation, 36% (n = 37) met the criteria for CFS, 17% (n = 18) had insufficient fatigue or symptoms (ISF), and 47% (n = 49) were found to have exclusionary medical or psychiatric illnesses. Classification varied significantly by type of referral but not by previous history of CFS diagnosis. Healthcare providers referred more patients who were classified as CFS as compared to support group referrals in which more exclusionary conditions were identified. Family practice and internal medicine specialties made the most referrals and had the highest number of CFS cases. We conducted three CME events, held three “Meet and Greet” sessions, visited four large clinical health practices and health departments, mailed five registry newsletters, and conducted in-person office visits as part of education outreach, which contributed to patient referrals.

CONCLUSIONS: Referrals from healthcare providers and self-referrals from the patient support group were important to registry enrollment. The number of potentially treatable conditions that were identified highlights the need for continued medical management in this population, as well as the limitations of registries formed without clinical examination. Education initiatives were successful in part because of partnerships with local organizations.

 

Source: Brimmer DJ, Maloney E, Devlin R, Jones JF, Boneva R, Nagler C, LeRoy L, Royal S, Tian H, Lin JM, Kasten J, Unger ER. A pilot registry of unexplained fatiguing illnesses and chronic fatigue syndrome. BMC Res Notes. 2013 Aug 2;6:309. doi: 10.1186/1756-0500-6-309. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3750716/ (Full article)

 

Premorbid risk markers for chronic fatigue syndrome in the 1958 British birth cohort

Abstract:

BACKGROUND: Little is known about the aetiology of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME); prospective studies suggest a role for premorbid mood disorder.

AIMS: To examine childhood and early adult adversity, ill health and physical activity as premorbid risk markers for CFS/ME by 42 years, taking psychopathology into account.

METHOD: Data were from the 1958 British birth cohort, a prospective study from birth to 42 years (n = 11 419). The outcomes were self-reported CFS/ME (n = 127) and operationally defined CFS-like illness (n = 241) at 42 years.

RESULTS: Adjusting for psychopathology, parental physical abuse (odds ratio (OR) = 2.10, 95% CI 1.16-3.81), childhood gastrointestinal symptoms (OR = 1.58, 95% CI 1.00-2.50) and parental reports of many colds (OR = 1.65, 95% CI 1.09-2.50) were independently associated with self-reported CFS/ME. Female gender and premorbid psychopathology were the only risk markers for CFS-like illness, independent of comorbid psychopathology.

CONCLUSIONS: This confirms the importance of premorbid psychopathology in the aetiological pathways of CFS/ME, and replicates retrospective findings that childhood adversity may play a role in a minority.

Comment in: Childhood sexual abuse and chronic fatigue syndrome. [Br J Psychiatry. 2012]

 

Source: Clark C, Goodwin L, Stansfeld SA, Hotopf M, White PD. Premorbid risk markers for chronic fatigue syndrome in the 1958 British birth cohort. Br J Psychiatry. 2011 Oct;199(4):323-9. doi: 10.1192/bjp.bp.110.083956. Epub 2011 Aug 18. http://bjp.rcpsych.org/content/199/4/323.long (Full article)

 

The relationship between prior psychiatric disorder and chronic fatigue: evidence from a national birth cohort study

Abstract:

BACKGROUND: Increased rates of psychiatric disorder have previously been reported in those diagnosed with chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME), although the direction of causation in this relationship has not been established. We aimed to test the hypothesis that individuals with self-reported CFS/ME have increased levels of psychiatric disorder prior to the onset of their fatigue symptoms.

METHOD: A total of 5,362 participants were prospectively followed with various measures of personality, psychiatric disorder and fatigue levels collected over the first 43 years of their life. CFS/ME was identified through self-report during a semi-structured interview at age 53 years.

RESULTS: Thirty-four (1.1%) of the 3,035 subjects assessed at age 53 years reported a diagnosis of CFS/ME. CFS/ME was more common among females, but there was no association between CFS/ME and either social class, social mobility or educational level. Those with psychiatric illness between the ages of 15 and 36 years were more likely to report CFS/ME later in life with an odds ratio (OR, adjusted for sex) of 2.65 [95% confidence interval (CI) 1.26-5.57, p=0.01]. Increased levels of psychiatric illness, in particular depression and anxiety, were present prior to the occurrence of fatigue symptoms. There was a dose-response relationship between the severity of psychiatric symptoms and the likelihood of later CFS/ME. Personality factors were not associated with a self-reported diagnosis of CFS/ME.

CONCLUSIONS: This temporal, dose-response relationship suggests that psychiatric disorders, or shared risk factors for psychiatric disorders, are likely to have an aetiological role in some cases of CFS/ME.

 

Source: Harvey SB, Wadsworth M, Wessely S, Hotopf M. The relationship between prior psychiatric disorder and chronic fatigue: evidence from a national birth cohort study. Psychol Med. 2008 Jul;38(7):933-40. Epub 2007 Nov 2. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3196526/ (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)

 

Patients with a self diagnosis of myalgic encephalomyelitis

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

 

EDITOR,-Myalgic encephalomyelitis is most commonly related to an underlying psychological or psychiatric disturbance.’2 Shonagh Scott and colleagues report that when general practitioners deal with symptoms consistent with those of myalgic encephalomyelitis their attitude is likely to be influenced by the patient’s perception, expectations, and social class.’ It is not uncommon for patients to diagnose myalgic encephalomyelitis themselves before they seek a consultation; this can lead to disruption of the doctor-patient relationship, unsatisfactory consultations, and possibly failure to diagnose any underlying pathological process. We report on a patient with a self diagnosis of myalgic encephalomyelitis in whom hypopituitarism was diagnosed only after a protracted period

You can read the full comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2550388/pdf/bmj00603-0061a.pdf

Comment on:

Population based study of fatigue and psychological distress. [BMJ. 1994]

Professional and popular views of chronic fatigue syndrome. [BMJ. 1994]

 

Source: Hurel SJ, Abuiasha B, Baylis PH, Harris PE. Patients with a self diagnosis of myalgic encephalomyelitis. BMJ. 1995 Jul 29;311(7000):329. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2550388/pdf/bmj00603-0061a.pdf (Full comment)

 

GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Evidence supports presence of encephalitis

Comment on: General practitioners’ attitudes to patients with a self diagnosis of myalgic encephalomyelitis. [BMJ. 1995]

 

EDITOR,-Although the precise pathoaetiology of myalgic encephalomyelitis remains the subject of debate, Shonagh Scott and colleagues are incorrect in asserting that “no evidence exists” of encephalitis. Buchwald et al carried out a large cohort study in which neurological symptoms, results of magnetic resonance imaging, and lymphocyte phenotyping suggested that the patients were experiencing “a chronic, immunologically mediated inflammatory process of the central nervous system.”2 More recently, Schwartz et al, who used single photon emission computed tomography, described abnormalities that were consistent with the hypothesis that “a chronic viral encephalitis” may be present.3 Furthermore, in the only postmortem study to have been published the polymerase chain reaction showed enteroviral sequences (compatible with coxsackie virus B3) in samples from the hypothalamus and brain stem,4 indicating that viral persistence within selective parts of the central nervous system may also play a part.

Given the uncertainties surrounding both the pathoaetiology and the diagnostic criteria for myalgic encephalomyelitis, it is not surprising to learn that self diagnosis produces difficulties in the doctor-patient relationship. The conclusions of and motives behind Scott and colleagues’ study must, however, be questioned in view of the fact that the fictitious patients had a list of vague symptoms that failed to satisfy diagnostic criteria for either a chronic fatigue syndrome (as defined by the International Chronic Fatigue Syndrome Study Group)5 or a postinfectious fatigue syndrome (as defined by current British criteria).6 Neither did the symptoms accord with those that patient support organisations would agree constitute a satisfactory diagnosis of myalgic encephalomyelitis.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2549699/pdf/bmj00593-0058b.pdf

 

Source: Shepherd C. GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Evidence supports presence of encephalitis. BMJ. 1995 May 20;310(6990):1330. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2549699/

 

GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Sufferers continue to be misrepresented

Comment on: General practitioners’ attitudes to patients with a self diagnosis of myalgic encephalomyelitis. [BMJ. 1995]

 

EDITOR,-Shonagh Scott and colleagues’ paper on general practitioners’ attitudes to self diagnosed myalgic encephalomyelitis illustrates, if nothing else, the continuing misrepresentation of this illness and those who suffer from it.’ Contrary to the authors’ claims, Action for ME has never encouraged self diagnosis, and nor have the other “active support organisations” in Britain. Moreover, we have never advocated that patients should make unreasonable demands on their general practitioners.

Despite what Scott and colleagues imply, it is not just patients who recognise the existence of myalgic encephalomyelitis but also the World Health Organisation (the disease appears in the International Classification of Diseases (10th revision)), several handbooks, and many doctors. Indeed, positive attitudes to fatigue syndromes such as myalgic encephalomyelitis have been noted in several studies in the past few years. For instance, Ho-Yen and McNamara surveyed 178 general practitioners in Scotland and found that 71% accepted the existence of the disorder.2 In New Zealand the figure was 90%.3

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2549698/pdf/bmj00593-0058a.pdf

 

Source: Arber M. GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Sufferers continue to be misrepresented. BMJ. 1995 May 20;310(6990):1330. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2549698/

 

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/