Tag: 2004

Patient organisations in ME and CFS seek only understanding

Comment on: General practitioners’ perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study. [BMJ. 2004]

 

Editor—To compare general practitioners’ attitudes to patients with chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) and those with irritable bowel syndrome was disappointing in the study by Raine et al.1 Particularly disappointing was that the study was conducted in the months after the chief medical officer recognised—with considerable attendant publicity—the severity and impact of chronic fatigue syndrome or myalgic encephalomyelitis on the lives of those affected.2

One outcome of the study was that pressure groups were perceived as influencing clinical encounters, making it harder to legitimise the symptoms. That the authors labelled patients’ organisations “pressure groups” was interesting in itself.

The organisations cover a range of views on the illness and the solutions needed. This organisation carries out an information role for patients and professionals and provides a range of services no different from that of any other medium sized charity (www.afme.org.uk). We campaign vigorously of course for recognition of chronic fatigue syndrome and myalgic encephalomyelitis and for funding to remedy years of neglect in this field.

We are not “antidoctor” and our members mostly view their general practitioners as supportive and understanding but faced with a complex illness and lacking a toolkit to help.

Far from patients’ organisations wishing to politicise the consulting room, we simply ask for a little more understanding, mixed with a little humility and matched with an eagerness to obtain training and information about diagnosis and treatment.

You can read the rest of this comment here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC449878/

 

Source: Clark C. Patient organisations in ME and CFS seek only understanding. BMJ. 2004 Jul 10;329(7457):112-3. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC449878/ (Full article)

 

Neural correlates of the chronic fatigue syndrome–an fMRI study

Abstract:

Chronic fatigue syndrome (CFS) is characterized by a debilitating fatigue of unknown aetiology. Patients who suffer from CFS report a variety of physical complaints as well as neuropsychological complaints. Therefore, it is conceivable that the CNS plays a role in the pathophysiology of CFS. The purpose of this study was to investigate neural correlates of CFS, and specifically whether there exists a linkage between disturbances in the motor system and CFS.

We measured behavioural performance and cerebral activity using rapid event-related functional MRI in 16 CFS patients and 16 matched healthy controls while they were engaged in a motor imagery task and a control visual imagery task. CFS patients were considerably slower on performance of both tasks, but the increase in reaction time with increasing task load was similar between the groups.

Both groups used largely overlapping neural resources. However, during the motor imagery task, CFS patients evoked stronger responses in visually related structures. Furthermore, there was a marked between-groups difference during erroneous performance. In both groups, dorsal anterior cingulate cortex was specifically activated during error trials. Conversely, ventral anterior cingulate cortex was active when healthy controls made an error, but remained inactive when CFS patients made an error.

Our results support the notion that CFS may be associated with dysfunctional motor planning. Furthermore, the between-groups differences observed during erroneous performance point to motivational disturbances as a crucial component of CFS.

 

Source: de Lange FP, Kalkman JS, Bleijenberg G, Hagoort P, van der Werf SP, van der Meer JW, Toni I. Neural correlates of the chronic fatigue syndrome–an fMRI study. Brain. 2004 Sep;127(Pt 9):1948-57. Epub 2004 Jul 7. http://brain.oxfordjournals.org/content/127/9/1948.long (Full article)

 

Harmful psychiatrization

Ulrik Fredrik Malt’s response( 1 ) to my post about myalgic encephalomyelitis / chronic fatigue syndrome in the journal no. 9/2004 ( 2 ) and what he calls the ME group, is irrelevant to the core issue. Is the response really an apologia for his own views and practices, a practice that does not conform with practices at other university hospitals? Other universities conform correctly to ICD-10, which classifies myalgic encephalomyelitis / chronic fatigue syndrome as a neurological disorder (diagnostic code G93.3), and have introduced the new clinical criteria ( 3 ). It is not up to individual doctors to classify a disorder in the category that suits them. It is evident that the Malt places himself above ICD-10.

Myalgic encephalomyelitis / chronic fatigue syndrome has more than 30 years been classified as a neurological disorder and will remain so in the upcoming revision of the ICD. The psychiatrization which has been ongoing for many years, has caused major problems for those affected. Patients are ignored, rejected, distrusted, persecuted, mistreated, not taken seriously and suspected of malingering. Contagion and disability are downplayed, and many patients do not get Social Security benefits and assistance on a par with other seriously ill patients. Under the auspices of the US Department of Health a declaration has been adopted which states that “patients have been harmed as a result of disrespect, indifference and ignorance of the medical community” ( 4 ). According to the statement, one must “aggressively embark on disrespect that these patients meet both the general population and the medical community.” It stressed further that there is an urgent need for training of health professionals. In this connection healthcare professionals are advised not to read about myalgic encephalomyelitis / chronic fatigue syndrome in textbooks of psychiatry and instead read other research and literature ( 5 ).

Psychiatrization and trivialization of this suffering must end and textbooks corrected. Health authorities should urgently address this issue as they have done in England.

You can read the rest of this comment here: http://tidsskriftet.no/article/1045776

 

Source: Stormorken E.  Harmful psychiatrization. Tidsskr Nor Laegeforen. 2004 Jul 1;124(13-14):1826-7; author reply 1827. [Article in Norwegian] http://tidsskriftet.no/article/1045776 (Full article)

 

Association of medically unexplained fatigue with ACE insertion/deletion polymorphism in Gulf War veterans

Abstract:

Genes associated with muscle metabolism and physical endurance were evaluated for variants that may contribute to the etiology of medically unexplained severe and chronic fatigue. Subjects included 49 Gulf War veterans and 61 nonveterans with chronic fatigue syndrome (CFS) or idiopathic chronic fatigue (ICF) and 30 veterans and 45 nonveterans who served as healthy controls. Increased risk for CFS/ICF was associated with alterations of the insertion/deletion (I/D) polymorphism in the angiotensin-converting enzyme gene within the Gulf War veteran sample only. The I allele frequency was decreased in affected versus unaffected veterans (0.15 versus 0.48; odds ratio [OR], 5.08; 95% confidence interval [CI], 1.97-13.35; P < 0.0001). Correspondingly, the II genotype was decreased fourfold in affected veterans (0.08 versus 0.35; OR = 5.87; 95% CI: 1.21-28.36; P = 0.02), and the DD genotype was increased twofold (0.78 versus 0.39; OR, 5.4; 95% CI, 1.6-18.4; P = 0.007). Veterans with the DD genotype were eight times more likely to develop CFS/ICF than were those with the II genotype (OR, 8.30; 95% CI, 1.50-56.09; P = 0.009).

 

Source: Vladutiu GD, Natelson BH. Association of medically unexplained fatigue with ACE insertion/deletion polymorphism in Gulf War veterans. Muscle Nerve. 2004 Jul;30(1):38-43. http://www.ncbi.nlm.nih.gov/pubmed/15221876

 

Outpatient rehabilitative treatment of chronic fatigue syndrome (CFS/ME)

Abstract:

AIMS: To assess the outcome of outpatient multidisciplinary rehabilitative treatment (graded activities/exercise programme, family sessions, and supportive care) compared with supportive care alone for children and adolescents with chronic fatigue syndrome (CFS/ME).

METHODS: Fifty six young people (aged 9-17 years) with CFS/ME by standard criteria were followed up for 3-24 months. All subjects received supportive care. Families additionally opted to either enter the rehabilitation programme (supportive care plus graded activities/exercise programme and family sessions) or have no additional treatment.

RESULTS: Twenty two (39%) subjects had supportive care alone and 26 (46%) entered the programme. Treatment groups were comparable at baseline in terms of age, severity and duration of illness, Wellness score, and school attendance. At end of follow up, those in the programme group had significantly higher Wellness score and school attendance than those having supportive care alone. The programme significantly reduced the overall severity of illness: after the programme, 43% had complete resolution of CFS/ME compared to only 4.5% of those having supportive care alone. The presence of depressed mood and family beliefs about the aetiology of CFS/ME were not significantly associated with outcomes.

CONCLUSIONS: Outpatient rehabilitative treatment offers significant potential to improve the prognosis of CFS/ME in childhood and adolescence.

 

Source: Viner R, Gregorowski A, Wine C, Bladen M, Fisher D, Miller M, El Neil S. Outpatient rehabilitative treatment of chronic fatigue syndrome (CFS/ME). Arch Dis Child. 2004 Jul;89(7):615-9. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1719984/  (Full article)

 

The economic impact of chronic fatigue syndrome

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) is a chronic incapacitating illness that affects between 400,000 and 800,000 Americans. Despite the disabling nature of this illness, scant research has addressed the economic impact of CFS either on those affected or on the national economy.

METHODS: We used microsimulation methods to analyze data from a surveillance study of CFS in Wichita, Kansas, and derive estimates of productivity losses due to CFS.

RESULTS: We estimated a 37% decline in household productivity and a 54% reduction in labor force productivity among people with CFS. The annual total value of lost productivity in the United States was $9.1 billion, which represents about $20,000 per person with CFS or approximately one-half of the household and labor force productivity of the average person with this syndrome.

CONCLUSION: Lost productivity due to CFS was substantial both on an individual basis and relative to national estimates for other major illnesses. CFS resulted in a national productivity loss comparable to such losses from diseases of the digestive, immune and nervous systems, and from skin disorders. The extent of the burden indicates that continued research to determine the cause and potential therapies for CFS could provide substantial benefit both for individual patients and for the nation.

 

Source: Reynolds KJ, Vernon SD, Bouchery E, Reeves WC. The economic impact of chronic fatigue syndrome. Cost Eff Resour Alloc. 2004 Jun 21;2(1):4. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC449736/ (Full article)

 

Chronic fatigue syndrome and other fatiguing illnesses in adolescents: a population-based study

Abstract:

PURPOSE: To estimate the prevalence of chronic fatigue syndrome (CFS) and describe characteristics of other fatiguing illnesses in adolescents (aged 12 through 17 years).

METHODS: We conducted a random digit dialing survey of the residents of Wichita, Kansas. Adults identified fatigued adolescents in the household and answered questions relating to the child’s health. Selected adolescents were invited to attend a clinic with a parent/guardian. After clinical evaluation they were classified as CFS or another fatigue state as defined in the 1994 CFS definition. Annual telephone interviews and clinical evaluations monitored subjects’ fatigue status. Data were analyzed using the Kruskal-Wallis test, the Mantel-Haenszel test, and the exact McNemar test.

RESULTS: The survey contacted 34,018 households with 90,316 residents. Of 8586 adolescents, 138 had fatigue for > or =1 month and most (107 or 78%) had chronic fatigue (> or =6 months) at some point during the 3-year follow-up. Twenty-eight had exclusionary diagnoses. Thirty-one were considered to have a CFS-like illness and were invited for clinical evaluation. Eleven agreed to participate and none met the CFS case definition. The baseline weighted prevalence of CFS-like illness was 338 per 100,000. Significant differences existed between parental and adolescents’ descriptions of illness.

CONCLUSIONS: The prevalence of CFS among adolescents was considerably lower than among adults. Evaluation of CFS in adolescents must consider both parent and patient perception of fatigue and other illnesses that might explain the symptom complex.

 

Source: Jones JF, Nisenbaum R, Solomon L, Reyes M, Reeves WC. Chronic fatigue syndrome and other fatiguing illnesses in adolescents: a population-based study. J Adolesc Health. 2004 Jul;35(1):34-40. http://www.ncbi.nlm.nih.gov/pubmed/15193572

 

Say NO to fibromyalgia and chronic fatigue syndrome: an alternative and complementary therapy to aerobic exercise

Abstract:

Increased shear stress to the endothelium increases activity of endothelial nitric oxide synthase (eNOS) with subsequent release of small quantities (nMol) of nitric oxide (NO) into the circulation. It occurs during moderate aerobic exercise mostly as a result of laminar shear stress and with whole body, periodic acceleration as a result of pulsatile shear stress. The latter is administered by means of a new, non-invasive, passive exercise device.

Moderate exercise has long been known to alleviate the symptoms of fibromyalgia and chronic fatigue syndrome and in the current study, whole body, periodic acceleration did as well. Since NO through action of eNOS has potent anti-inflammatory properties mainly by suppressing nuclear factor kappabeta activity, it is hypothesized that both diseases have chronic inflammation as their basis. Whole body periodic acceleration can be applied separately or supplementary to aerobic exercise in the treatment of fibromyalgia and chronic fatigue syndrome.

 

Source: Sackner MA, Gummels EM, Adams JA. Say NO to fibromyalgia and chronic fatigue syndrome: an alternative and complementary therapy to aerobic exercise. Med Hypotheses. 2004;63(1):118-23. http://www.ncbi.nlm.nih.gov/pubmed/15193362

 

Temporal relations between unexplained fatigue and depression: longitudinal data from an international study in primary care

Abstract:

OBJECTIVE: Unexplained fatigue syndromes, such as chronic fatigue syndrome and neurasthenia, are strongly associated with depression, but the temporal nature of this association is not clear.

METHODS: The authors examined this issue by using data from the World Health Organization collaborative study of psychological problems in general health care. Three thousand two hundred one subjects from 15 primary care centers in 14 countries were followed up for 12 months. The Composite International Diagnostic Interview was the main instrument used. Odds ratios and their 95% confidence intervals (CI) were calculated using logistic regression models adjusted for sociodemographic variables, physical morbidity and intercenter variability.

RESULTS: Cases of depression were found to have an increased risk of developing a new episode of unexplained fatigue at follow-up with an adjusted odds ratio of 4.15 (95% CI = 2.64-6.54). Similarly, cases of unexplained fatigue were found to have an increased risk of developing a new episode of depression at follow-up with an adjusted odds ratio of 2.76 (95% CI = 1.32-5.78). Further adjustment for subthreshold symptoms at baseline weakened the reported associations, especially between fatigue and development of a new episode of depression, but these remained significant.

CONCLUSIONS: The findings support the view that unexplained fatigue and depression might act as independent risk factors for each other.

 

Source: Skapinakis P, Lewis G, Mavreas V. Temporal relations between unexplained fatigue and depression: longitudinal data from an international study in primary care. Psychosom Med. 2004 May-Jun;66(3):330-5. http://www.ncbi.nlm.nih.gov/pubmed/15184691

 

Cellular and humoral immune abnormalities in Gulf War veterans

Abstract:

We examined 100 symptomatic Gulf War veterans (patients) and 100 controls for immunologic assays. The veterans and controls were compared for the percentage of T cells (CD3); B cells (CD19); helper:suppressor (CD4:CD8) ratio; natural killer (NK) cell activity; mitogenic response to phytohemagglutin (PHA) and pokeweed mitogen (PWM); level of immune complexes; myelin basic protein (MBP) and striated and smooth muscle autoantibodies; and antibodies against Epstein-Barr virus, cytomegalovirus, herpes simplex virus type 1 (HSV-1), HSV-2, human herpes Type 6 (HHV-6), and Varicella zoster virus (VZV).

The percentage of T cells in patients versus controls was not significantly different, whereas a significantly higher proportion of patients had elevated T cells compared with controls. The percentage of B cells was significantly elevated in the patients versus the controls. The NK cell (NK) activity was significantly decreased in the patients (24.8 +/- 16.5 lytic units) versus the controls (37.3 +/- 26.4 lytic units). The percentage of patients with lower than normal response to PHA and PWM was significantly different from controls. Immune complexes were significantly increased in the patients (53.1 +/- 18.6, mean +/- SD) versus controls (34.6 +/- 14.3). Autoantibody titers directed against MBP and striated or smooth muscle were significantly greater in patients versus controls.

Finally, the patients had significantly greater titers of antibodies to the viruses compared with the controls (p < 0.001). These immune alterations were detected 2-8 years after participation in the Gulf War. The immune alterations are consistent with exposure to different environmental factors. We conclude that Gulf War syndrome is a multifaceted illness with immune function alterations that may be induced by various factors and are probably associated with chronic fatigue syndrome.

 

Source: Vojdani A, Thrasher JD. Cellular and humoral immune abnormalities in Gulf War veterans. Environ Health Perspect. 2004 Jun;112(8):840-6. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1242010/ (Full article)