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ME/CFS significant others' negative reponses linked to blaming the patient, not the illness

  [ 6 votes ]   [ 2 Comments ]
www.ProHealth.com • December 4, 2012


Article:
Attributions, distress and behavioral responses in the significant others of people with Chronic Fatigue Syndrome
- Source: Journal of Health Psychology, Nov 23, 2012

By Joanna Brooks, et al.

[Note: Lead author Dr. Joanna Brooks specializes in the study of chronic illness (e.g., cancer, chronic back pain, CFS) and the family, including family members’ beliefs about the patient’s illness experience, and impact on all.]

To test an attribution-emotion model of reactions to chronic fatigue syndrome/myalgic encephalomyelitis, 30 significant others of 30 adult patients with chronic fatigue syndrome/myalgic encephalomyelitis were administered a semi-structured interview about their beliefs regarding the patient’s illness and completed questionnaire measures of distress and behavioral responses to the patient.

Spontaneous causal explanations (attributions) for illness events, symptom exacerbation and negative patient mood were extracted and coded.

Significant others’ distress and negative behavioral responses towards the chronic fatigue syndrome/myalgic encephalomyelitis patient were associated with attributing illness events to causes personal and internal to the patient.

Our findings may inform the future family-based interventions for chronic fatigue syndrome/myalgic encephalomyelitis.

Source: Journal of Health Psychology, Nov 23, 2012. PMID:23180874, by Brooks J, Daglish J, Wearden A. University of Huddersford, UK. [Email: J.M.Brooks@hud.ac.uk]





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Counselling is not a cure-all
Posted by: dfwmom
Dec 5, 2012

Well, yes, in some cases intervention with the family might provide some very slight improvement in the life of someone with Fibromyalgia. But, what is really needed is for the medical community to devote as many dollars to real medical research to find the underlying cause of this disease, as they spend trying to convince patients with fibromyalgia how beneficial counselling is. Been there, done that, moved on. It's snake oil.

At the end of the day, this is a PHYSIOLOGICAL illness. Talking about it won't make it go away. We need effective medical treatments that address the underlying physiological cause. Not pain meds (there are dozens of symptoms besides just pain). Not Lyrica. REAL treatments for this disease.

With fibromyalgia, the modern medical community is very obviously floundering and grasping at straws, throwing counselling at patients because they have nothing else to offer. Patients with fibromyalgia understand the feeling of frustration at this intractable illness, but we really don't have the bandwidth to try to help doctors feel useful, or money to throw down a rathole when what the medical community is offering simply isn't working.

CBT and adaptive pacing can help patients learn to live with their illness. It's very little to offer, but it can help as part of an overall strategy.

GET, graded exercise therapy, is controversial, and can end up triggering flares and making a patient worse.

Medicine doesn't really work, because it usually has bad side effects, and targets one or two symptoms while making other symptoms worse, and often doesn't even do much to help the symptoms it is targeting. It's also very questionable as to what these medications really do to a growing child.

Family counselling is a highly subjective process, and can do as much harm as it does good. The quality of counselling services varies tremendously. There are some really confused, incompetent counselors out there. Counselling is only helpful for someone who is unable to cope emotionally with the illness, or has a dynsfunctional family. For well-adjusted patients, it is of no value.

We need more. Real medical solutions. Counselling is just not enough.






Reply Reply

 
DFWMOM
Posted by: roge
Dec 6, 2012
couldnt have said it any better!!

 

 
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