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C F S
- Information International Living
with CFS/ FM
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The deleterious effects of
disease-illness dualism, yunus04.txt, yunus.04.txt. ‘Can the social model explain all
of disability experience? Perspectives of persons with CFS’, taylor05.txt,
Taylor05.pdf and whitehead05.pdf. Acceptance
of the chronicity of CFS is important, vandamme.etal06.txt,
vandamme.etal06.pdf. “A
positive” approach is of no importance to the illness, hyland.etal06.pdf. An 'Overwhelming Illness': Women's
experiences of learning to live with CFS/ME, edwards.etal07.txt,
edwards.etal07.pdf. Quality of Life (QOL) with CFS
CFS is a far more serious
condition than "the strains of everyday life", Soderlund et al., 2000. A Dutch study
concluded, that CFS is more devastating than what is currently
addressed,
van Heck & de Vries, 2002. A Canadian study found
the lack of illness legitimization most disturbing, Lehman et al., 2002. A Belgian
study stressed the serious daily hassles from CFS, Van Houdenhove et al., 2002. Compared with
MS CFS-patients worry more about their illness, but this is attributable to
others not taking the illness seriously,
Taillefer et al., 2003. A focus on the marital relationship when the wife
suffers form CFS,
Goodwin, 2000. Dr. Jason's group has also studied the effect
of living with CFS,
Richman et al., 2000. This 3-country study underscores the poor
quality of life with CFS,
Hardt et al., 2001. Spouses suffer too, Bigatti & Cronan, 2002, and have problems
with caring for the patient, Ax et
al., 2002. Quality of life and symptom
severity in CFS was studied, taylor04.txt, taylor04.pdf. My own 5-year study demonstrated poor quality of
life, including problems with reading, allergies and sexual functioning in
CFS patients diagnosed by CDC criteria, andersen.etal04.txt,
andersen.etal04.pdf. Our second study, a 9-year follow-up of the
patients, underlined the chronicity of the disease, andersen.etal07.txt, andersen.etal07.pdf. We found improvement in
one measure only, mental health over the 9 years studied. Work disability was
almost 100%. Only few studies have delt with work disability in FM, al-allaf07.txt. A Dutch study found no sexual dysfunction in CFS
patients, however less stringent CFS-diagnostics were used, vermeulen.scholte04.txt, vermeulen.scholte04.pdf. FM patients
suffer from sexual dysfunction, tikiz.etal05.txt.
Subjective quality of life in patients with CFS, rakib.etal05.txt. Disability evaluation compared to exercise capacity,
nijs.etal04.txt, nijs.etal04.pdf. Dr. Jason’s group studied disability
in relation to socio-demographic characteristics in CFS and ICF, carrico.etal04.txt, carrico.etal04.pdf.
One member of this team gave name to the Fennell phase theory of CFS, vanhoof.etal04.txt,
vanhoof.etal04.pdf.
Conservation of resources is important, taylor.etal06.txt. Social support is lacking in CFS, prins.etal04.txt, prins.etal04.pdf.
Perceived stigma is a big problem, looper.kirmayer04.txt, looper.kirmayer04.pdf.
Functioning in individuals with CFS: increased
impairment with co-occurring MCS and FM, brown.jason07.txt.
CFS patients have lower QOL than
patients with RA, nunez.etal07.txt, nunez.etal07.pdf. Quality of Life with FM
Reduction in life quality and
the ways to measure this has been studied in FM. Most recently, by
comparison with RA, birtane.etal06.txt. By
comparison, patients with FM have greater difficulty coping than patients
with SLE, Da Costa et al., 2000, and RA, Borman & Celiker, 1999, and greater
impairment,
Viitanen et al., 2000. FM quality
of life was assessed,
Bernard et al., 2000. The name FM itself had no impact on the
functionality, or pain, experienced by FM patients, White et al., 2002. Health related quality of life and
quantitative pain measurement in females with chronic non-malignant pain, laursen.etal05.txt. A study found seasonal
symptoms reported by FM patients, Hawley et al., 2001. A study from A 2001-study found reduced pain after 3 years of
FM, Poyhia et al., 2001, but the
authors did not ask themselves if this was simply adaptation or coping
behavior. In a Spanish study education was found to improve both quality
of life and pain in FM,
Borsch et al., 2002. One 2002-study focused on suffering and
dysfunction,
Dennis & Turk, 2002, and another on living
with FM, Sturge-Jacobs, 2002. Adaptation
strategy was important, Lindberg & Iwarsson, 2002. An instrument found useful in FM was the pain
vigilance and awareness questionnaire (PVAQ), Roelofs et al., 2003. Also the
Trust in Physician Scale can be used,
Freburger et al., 2003. Self management was successful, cedraschi.etal04.txt. Sexual functioning
in FM, prins.etal06.txt. Overlap CFS / FM
The Belgian research team found overlap in activity
limitations between CFS and FM, nijs.etal.03.txt, nijs.etal.03.pdf. Gender & Quality of Life
In one study men with FM had
different - and fewer - symptoms compared to women, Yunus et al., 2000, whereas in
another, smaller, study men had worse symptoms, Buskila et al., 2000. Dr. Yunus
focused on gender differences, Yunus,
2002. One Swedish study focus on the loss of human dignity with
women having FM,
Soderberg et al., 1999, another focus on men
with FM, Paulson et al., 2002. Spouses and
the whole family are affected,
Soderberg et al., 2003. Women with FM/CFS experience stigmatization, Asbring & Narvanen, 2002. These authors analyzed
patient power and control in women with CFS and FM, asbring.narvanen04.pdf. Alcohol
intake cease CFS patients reduce or cease alcohol intake, woolley.etal04.txt, woolley.etal04.pdf.
Ethnicity & Symptoms
Reporting of symptoms was
different according to ethnicity and socio-economical status, Torres-Harding et al., 2002. Functional Impairment
Assessment of functional
impairment is the object of this study,
Wolfe et al., 2000. FM from the patients' perspective: Prince et al., 2000. From German researchers have correlated long-time work
disability in CFS with somatic complaints, tritt.etal04.txt,
tritt.etal04.pdf. In a review study the authors concluded: “For
questions of disability and employment in CFS, the limitations inherent in
the current literature are extensive”,
ross.etal04.txt, ross.etal04.pdf. Work Impairment
Employment status in Adjusting
One study finds adolescent
girls with CFS to adjust to the situation, van Middendorp et al., 2001. Nursing
intervention promoted adjustment for FM patients, Wassem et al., 2002. Coping
One important aspect of
contracting a chronic illness is the process of learning how to cope with
ones situation,
coping strategy. A 2001-study found young women with FM to
show more distress than older women,
Burckhardt et al., 2001. This study on coping concludes that patients
need psychological support, Hallberg & Carlsson et al., 2002. A Dutch study focus on the doctor-patient
relationship,
Prins et al., 2000. Also A study on coping in children and adolescents found
severe illness-related impairment, garralda.rangel04.txt,
garralda.rangel04.pdf. Coping behavior was the object of a psychiatric
study, Ax et al., 2001 (abstract), Ax et
al., 2001. Defensive coping styles in CFS, Creswell & Chalder, 2001 (abstr), Creswell & Chalder, 2001 (paper). In their 4
group-Chicago study, Jason et al. studied the influence of coping on
outcome, Jason et al., 2003 (short), Jason et al., 2003. Coping strategies in FM subgroups, Raak et al., 2003. Relationship between changes in coping
and treatment outcome in patients with FM, nielson.jensen04.txt. Evaluation of a community-based service model for
patients with CFS, taylor.etal04.pdf. Coping
styles in people with CFS identified from the general population of Coping with pain, Hellstrom & Jansson, 2001, and kraaimaat.evers03.txt. From Jason’s
group: Coping in relation to ethnicity, njoku.etal05.txt,
njoku.etal05.pdf. Economy
The economical consequences
from loss of work are among the factors influencing the life of FM patients, Assefi et al., 2003 Assefi et al., 2003 (pdf). Economical
consequences are also great for society. In the |
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Index Welcome CFS
case def. Prevalence Prognosis Brain
Inflam Post-Polio Hypotheses This
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