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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 Brazil also measured FM patients'
quality of life,
Martinez et al., 2001. A Turkish study compared life satisfaction in
FM with Rheumatoid Arthritis and found FM patients just as impaired, Celiker & Borman, 2001. A nursing
intervention model for women with FM was studied, Sylvain & Talbot, 2002. A Swedish
study focused on transitions in FM women, Soderberg & Lundman, 2002. With age, FM
patients’ symptomatology decreases, Cronan et al., 2002. Compared to myofascial pain syndrome, FM
patients had more problems in relation to QOL, tuzun.etal04.txt. 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 Scandinavia comes several studies on work
disability and force with FM, Henriksson & Liedberg, 2000, and one on CFS and
FM, Asbring, 2001. This Swedish
study is about the respective role of the patient and society in FM work
disability, Liedberg & Henriksson, 2002. A Finish study compared
function in spondyloarthropathy with FM and found equal impairment, Heikkila et al., 2002. 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 Spain, cervera.etal05.txt. The value of exercise
testing and self-reported measures for the assessment of employment
status, nijs.etal.05.txt. CFS-like caseness
as a predictor of work status in fatigued employees on sick leave: 4-
year follow-up study, huibers.etal06.txt, huibers.etal06.pdf. 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 UK psychiatrists have addressed this
question,
Deale & Wessely, 2001. Mental health practitioners are
influenced by the treatment prescriptions from physicians in their attributions
for CFS,
Taylor et al., 2001. 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 Wichita,
KS, nater.etal06.txt, nater.etal06.pdf. 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 UK the cost of CFS has been
estimated,
McCrone et al., 2003. A US
study concluded that the economical impact of CFS to society is comparable to
other major diseases, reynolds.etal04.txt, reynolds.etal.04.txt,
reynolds.etal04.pdf. A Dutch study found large differences in
cost-of-illness and well being between patients with FM, chronic low back
pain or ankylosing spondylitis, boonen.etal04.txt. |
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