Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)–a case study

Abstract:

OBJECTIVE: To explore obstructions for quality care from experiences by patients suffering from chronic fatigue syndrome (CFS).

METHODS: Qualitative case study with data drawn from a group meeting, written answers to a questionnaire and a follow-up meeting. Purposeful sample of 10 women and 2 men of various ages, recruited from a local patient organization, assumed to have a special awareness for quality care.

RESULTS: CFS patients said that lack of acknowledgement could be even worse than the symptoms. They wanted their doctors to ask questions, listen to them and take them seriously, instead of behaving degrading. Many participants felt that the doctors psychologized too much, or trivialized the symptoms. Participants described how doctors’ lack of knowledge about the condition would lead to long-term uncertainty or maltreatment. Even with doctors who were supportive, it would usually take months and sometimes years until a medical conclusion would be reached, or other disorders were ruled out. Increased physical activity had been recommend, but most of the informants experienced that this made them worse.

CONCLUSION: Current medical scepticism and ignorance regarding CFS shapes the context of medical care and the illness experiences of CFS patients, who may feel they neither get a proper assessment nor management.

PRACTICE IMPLICATIONS: CFS patients’ reports about patronizing attitudes and ignorance among doctors call for development of evidence based strategies and empowerment of patients, acknowledging the patients’ understanding of symptoms and the complex nature of the disease. The NICE guidelines emphasize the need of patient participation and shared decision-making.

Comment in: Qualitative methods in communication and patient education research. [Patient Educ Couns. 2008]

 

Source: Gilje AM, Söderlund A, Malterud K. Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)–a case study. Patient Educ Couns. 2008 Oct;73(1):36-41. doi: 10.1016/j.pec.2008.04.001. Epub 2008 May 16. https://www.ncbi.nlm.nih.gov/pubmed/18486415

 

Normalization of the increased translocation of endotoxin from gram negative enterobacteria (leaky gut) is accompanied by a remission of chronic fatigue syndrome

Abstract:

There is now evidence that chronic fatigue syndrome (CFS) is accompanied by an increased translocation of endotoxins from gram-negative enterobacteria through the gut wall, as demonstrated by increased prevalences and median values for serum IgM and IgA against the endotoxins of gram-negative enterobacteria. This condition can also be described as increased gut permeability or leaky gut and indicates intestinal mucosal dysfunction (IMD).

Here we report a case of a 13 year old girl with CFS who showed very high values for serum IgM against the LPS of some enterobacteria and signs of oxidative and nitrosative stress, activation of the inflammatory response system, and IgG3 subclass deficiency. Upon treatment with specific antioxidants and a “leaky gut diet”, which both aim to treat increased gut permeability, and immunoglobins intravenously, the increased translocation of the LPS of gram negative enterobacteria normalized and this normalization was accompanied by a complete remission of the CFS symptoms.

 

Source: Maes M, Coucke F, Leunis JC. Normalization of the increased translocation of endotoxin from gram negative enterobacteria (leaky gut) is accompanied by a remission of chronic fatigue syndrome. Neuro Endocrinol Lett. 2007 Dec;28(6):739-44. https://www.ncbi.nlm.nih.gov/pubmed/18063928

 

Chronic fatigue syndrome in a 15-year-old girl

Abstract:

Fatigue and lack of energy are frequent symptoms in children and adolescents. A diagnosis of chronic fatigue syndrome should be considered in children and adolescents who complain of chronic fatigue associated with other symptoms without a demonstrable physical cause. Lack of knowledge about this syndrome and late diagnosis may have a negative impact on the normal development of affected children and adolescents. Treatment should be based on a rehabilitation program with cognitive behavioral therapy and a gradual increase in activities.

 

Source: Díaz-Caneja Greciano A, Rodríguez Sosa JT, Aguilera Albesa S, Sánchez-Carpintero R, Soutullo Esperón C. Chronic fatigue syndrome in a 15-year-old girl. An Pediatr (Barc). 2007 Jul;67(1):74-7.[Article in Spanish] https://www.ncbi.nlm.nih.gov/pubmed/17663911 (Full article available in Spanish)

 

Treatment of chronic fatigue and orthostatic intolerance with propranolol

Abstract:

We describe the effect of propranolol in an adolescent with chronic fatigue syndrome and orthostatic intolerance. Our observations suggest that the head-up tilt-test and beta-blocker treatment might be considered in patients with chronic fatigue syndrome and that enhanced sympathetic nervous activity might be part of the underlying pathophysiology.

 

Source: Wyller VB, Thaulow E, Amlie JP. Treatment of chronic fatigue and orthostatic intolerance with propranolol. J Pediatr. 2007 Jun;150(6):654-5. https://www.ncbi.nlm.nih.gov/pubmed/17517256

 

Fibromylagia, chronic fatigue, and adult attention deficit hyperactivity disorder in the adult: a case study

Abstract:

Adult attention deficit hyperactivity disorder (ADHD) may share common features with fibromyalgia syndrome (FMS) and chronic fatigue syndrome(CFS). In an outpatient psychiatric clinic, a number of adult patients who presented primarily with symptoms of ADHD, predominately inattentive type, also reported unexplained fatigue, widespread musculoskeletal pain or a pre-existing diagnosis of CFS or FMS.

As expected, ADHD pharmacotherapy usually attenuated the core ADHD symptoms of inattention, distractibility, hyperactivity, and impulsivity. Less expected was the observation that some patients also reported amelioration of pain and fatigue symptoms. The utility of ADHD medications in FMS and CFS states may be their innate arousal and enhanced filtering properties.

This model supposes that FMS and CFS are central processing problems rather than peripheral disorders of muscles and joints.

 

Source: Young JL, Redmond JC. Fibromylagia, chronic fatigue, and adult attention deficit hyperactivity disorder in the adult: a case study. Psychopharmacol Bull. 2007;40(1):118-26. https://www.ncbi.nlm.nih.gov/pubmed/17285103

 

A case with chronic fatigue syndrome with positive antinuclear antibody followed by postpartum thyroiditis

Abstract:

Autoimmune fatigue syndrome (AIFS) is defined by chronic nonspecific complaints, a positive antinuclear antibody (ANA) assay, and the absence of another explanation for the complaints. Some severe cases fulfill the criteria for chronic fatigue syndrome (CFS). CFS is a syndrome characterized by disabling severe fatigue and defined by the criteria proposed by the U.S. Centers for Disease Control and Prevention. In this report, a patient with chronic fatigue syndrome and positive ANA assay was described as having developed postpartum thyroiditis 5 years after the onset. Sub-chemical hypothyroidism is characterized by clinical hypothyroidism not meeting biochemical criteria but showing evidence of thyroid autoimmunity. The relation between AIFS and sub-chemical hypothyroidism is discussed.

 

Source: Itoh Y, Hamada H, Igarashi T, Kuwabara N, Imai T, Fujino O, Fukunaga Y. A case with chronic fatigue syndrome with positive antinuclear antibody followed by postpartum thyroiditis. Mod Rheumatol. 2004;14(5):406-9. https://www.ncbi.nlm.nih.gov/pubmed/17143702

 

Azithromycin in chronic fatigue syndrome (CFS), an analysis of clinical data

Abstract:

BACKGROUND: CFS is a clinical state with defined symptoms, but undefined cause. The patients may show a chronic state of immune activation and treatment with an antibiotic in this subgroup has been suggested.

METHODS: In a retrospective study, the response of CFS patients to azithromycin, an antibiotic and immunomodulating drug, has been scored from the patients records and compared with clinical and laboratory data. Azithromycin was not the first choice therapy, but offered when the effect of counseling and L-carnitine was considered insufficient by the patient and the clinician.

RESULTS: Of the 99 patients investigated, 58 reported a decrease in the symptoms by the use of azithromycin. These responding patients had lower levels of plasma acetylcarnitine.

CONCLUSION: The efficacy of azithromycin in the responsive patients could be explained by the modulating effect on a chronic primed state of the immune cells of the brain, or the activated peripheral immune system. Their lower acetylcarnitine levels may reflect a decreased antioxidant defense and/or an increased consumption of acetylcarnitine caused by oxidative stress.

 

Source: Vermeulen RC, Scholte HR. Azithromycin in chronic fatigue syndrome (CFS), an analysis of clinical data. J Transl Med. 2006 Aug 15;4:34. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1562448/ (Full article)

 

Efficacy of neurotropin in chronic fatigue syndrome: a case report

Abstract:

Chronic fatigue syndrome (CFS) is a disorder that causes general fatigue and chronic widespread pain. A 28-year-old male visited an outpatient department due to general fatigue and pain involving the entire body. He did not suffer from fibromyalgia, but he was diagnosed with CFS. At the initial visit, he complained of lack of concentration, memory decline, frequent urination, insomnia and occasional difficulty of emotional control, as well as general fatigue and pain involving the entire body. Four tablets of Neurotropin per day alone were administered.

General fatigue and pain were gradually alleviated one week later. His sleep condition, concentration power, and memory also improved two weeks later. Medication was discontinued from 11 weeks based on the patient’s judgment as he felt little general fatigue and pain involving the entire body. Treatment was completed 3 months later. The symptoms disappeared and did not recur five months after the discontinuation of Neurotropin. He was looking for a job without fatigue and pain 8 months later (5 months after the cessation of treatment). The functional mechanisms of Neurotropin in CFS are unknown.

 

Source: Toda K, Kimura H. Efficacy of neurotropin in chronic fatigue syndrome: a case report. Hiroshima J Med Sci. 2006 Mar;55(1):35-7. https://www.ncbi.nlm.nih.gov/pubmed/16594551

 

Acupuncture in the treatment of post viral fatigue syndrome–a case report

Abstract:

This case report concerns the treatment of post viral fatigue (chronic fatigue syndrome) with electroacupuncture. This condition is particularly difficult to treat whether using conventional or complementary therapy. Whilst the treatment did not cure the patient, it appears to have facilitated her return to work and markedly improved her symptoms. There are few publications on acupuncture treatment of this condition and the approach used here has not been reported previously.

 

Source: Mears T. Acupuncture in the treatment of post viral fatigue syndrome–a case report. Acupunct Med. 2005 Sep;23(3):141-5. http://aim.bmj.com/content/23/3/141.long (Full article)

 

Clinical characteristics of patients with chronic fatigue syndrome: analysis of 82 cases

Abstract:

OBJECTIVE: To analyze the clinical characteristics of Chinese patients suffering from chronic fatigue syndrome (CFS) and provide clinical and laboratory evidence for the study of its etiology and treatment.

METHODS: 82 patients with CFS diagnosed based on the CDC criteria 1994 were recruited. History was collected, and physical examination was made. SCL-90 and memory test were used, and Hamilton Anxiety Rating Scale was used to those showing depression and/or anxiety. Laboratory examination, including examination of electrolytes, blood sugar, creatinine, bilirubin, alkaline phosphatase, alanine trasaminase, etc, was conducted. Western blotting was used to detect the protein-24 of Borna disease virus (BDV) in the plasma of 61 patients and 73 healthy controls. High-pressure chromatography was conducted to detect n-6 fatty acids on the membrane of erythrocytes of 42 patients and 37 healthy controls. Plasma L-carnitine in 61 patients and 73 healthy controls was detected by zymological analysis. In different examinations sex and age-matched controls were used.

RESULTS: Most of the patients were 21 approximately 50 years old (74/82, 90.24%). No gender difference was found. The patients usually had 4 approximately 6 symptoms besides distinctive fatigue. Descent of remembrance and/or attention was the most conspicuous accompanying symptoms (69/82, 84.15%). Abnormalities in SCL-90 scores were present in 57 patients (69.51%), e.g, somatization existed most commonly (32/82, 39.02%), and anxiety and depression were 20.73% (17/82) and 18.29% (15/82) respectively. The prevalence of anti-BDV-p24 antibody was 20.73% (17/82), significantly higher than that of the controls (0%, chi(2) = 6.673, P = 0.010). The arachidonic acid level was significantly lower in the CFS group than in the controls (P > 0.05) and there were no differences in linoleic acid and ETA (both P > 0.05). The level of L-carnitine was 6.4336 +/- 3.4225, significantly lower than that of the control group (7.6666 +/- 3.5819, t = 2.025, P = 0.045) and the L-carnitine level was increased 2 weeks after supplementary treatment, together with improvement of symptoms.

CONCLUSION: Most of the CFS patients are young and middle-aged. Descent of reorganization is common in these patients. Psychological abnormalities exist in most patients. Some patients are infected with BDV, some with deficiency of nutrition and/or abnormality of energy metabolism.

 

Source: Li YJ, Wang DX, Bai XL, Chen J, Liu ZD, Feng ZJ, Zhao YM. Clinical characteristics of patients with chronic fatigue syndrome: analysis of 82 cases. Zhonghua Yi Xue Za Zhi. 2005 Mar 16;85(10):701-4. [Article in Chinese] http://www.ncbi.nlm.nih.gov/pubmed/15932738