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Evidence that patients are not necessarily happy with CBT & GET/CBT- and GET- based services

Effi

Effi

Senior Member
Messages
1,496
Location
Europe
Valentijn said:
My general recollection is that there was a Belgian study which found their CBT/GET clinics to be utterly useless. No idea if that included patient perceptions.
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It didn't. It was a study by the KCE (similar to AHRQ in the US) of all the 'evidence' provided by a wide range of countries (mostly under the form of published scientific articles, but also a recount of which treatments are officially offered to patients in said countries, and an evaluation of the science behind that). It resulted in a negative advice on prescribing CBT/GET to patients and subsequent closing of the local CFS centres. But no patients were involved in the study.
 
BurnA

BurnA

Senior Member
Messages
2,087
Sasha said:
There's also the 24 (?) patients' organisations who wrote open letters to QMUL to ask them to release the PACE data rather than go to tribunal. If they were all so thrilled with CBT and GET, it's hard to understand why they would do that.
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There was a also patient group which cut ties with KCL last year, as far as I remember because they felt their needs weren't met or the treatments were inappropriate.
 
T

Tom Kindlon

Senior Member
Messages
1,734
CFS_for_19_years said:
https://niceguidelines.files.wordpress.com/2009/10/twisk-maes-cbt1.pdf
Pages 11-12: there are quotes from several different patient surveys.

https://www.ncbi.nlm.nih.gov/pubmed/21234629
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Thanks. I published a paper which listed 10 surveys were many people reported being made worse by CBT and/or GET: http://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx

However that is not what I'm looking for here which is about what services people want to be offered.
 
Esther12

Esther12

Senior Member
Messages
13,774
Probably too late now, and still not ideal anyway, but there is this: http://ebmh.bmj.com/content/5/4/127.full

Women experienced chronic fatigue syndrome and fibromyalgia as stigmatising

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Åsbring P, Närvänen AL.Women’s experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia.Qual Health Res2002 Feb;12:148–60.
[Abstract/FREE Full text]

 
 QUESTIONS: Do women with chronic fatigue syndrome (CFS) or fibromyalgia experience stigmatisation? What strategies do they use to avoid stigma?

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Design
Grounded theory, based on symbolic interactionism.

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Setting
2 hospitals in Sweden.

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Patients
25 women (age range 32–65 y) who were diagnosed with CFS (n=12) or fibromyalgia (n=13). Mean duration of illness before diagnosis was 9 years and after diagnosis was 2 years.

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Methods
Each patient participated in 1 semistructured interview of 60–150 minutes. Questions focused on the women’s and other people’s views of the illness and strategies for dealing with the illness. Interviews were transcribed verbatim and analysed using the constant comparison method.

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Main findings
Women reported 3 aspects of their illness that were stigmatising. (1) Questioning of their morality related to women’s feelings that their moral character was called into question by others challenging the veracity of their illness experience. They attributed this questioning to the lack of visible external signs of illness. Questioning occurred, for example, at work, where they felt accused of being “work shy”. Most women also felt that providers questioned their credibility after tests revealed no pathological problems. They felt that providers regarded them as malingerers, with concocted non-existent or exaggerated problems. (2) Women experienced stigma in relation to the psychologising of symptoms. Some felt that physicians categorised problems as fictitious or related to psychological reasons before doing a proper examination. Others described dualistic thinking, where in the absence of objective findings to verify physical illness, physicians postulated a psychological cause and sometimes referred women to psychiatric or psychological treatments. (3) Although formal diagnosis legitimised women’s problems, it also had implications for stigmatisation. Women felt the term CFS lacked legitimacy among providers and was easily belittled by others because of the general nature of fatigue. Fibromyalgia was thought to be depreciated as a “women’s” condition.
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Includes a Wessely commentary:

COMMENTARY
  1. Simon Wessely, MD, MRCP, MRCPsych, MA, MSc
+ Author Affiliations

  1. Guy′s, King′s and St Thomas′s School of Medicine and Institute of Psychiatry
 London, UK
Any clinician who has taken the trouble to get to know a patient with fibromyalgia or CFS will recognise the basic finding of the study by Åsbring and Närvänen — patients attending specialist clinics with either condition (the similarities between the 2 outweigh the differences) feel acutely a sense of discrimination and stigmatisation. Many describe negative interactions with the medical profession.1 This is most acute when doctors are perceived to be “psychologising” the condition. Indeed, patients in this study found the act of prescribing antidepressants to be “violating”. This is regrettable because evidence exists that antidepressants can reduce pain, fatigue, and sleep disturbances in patients with fibromyalgia,2 although similar evidence does not exist for patients with CFS.

These findings have important clinical implications. Clinicians need to accept the reality of suffering and the legitimacy of the diagnosis and to work together with patients in a supportive relationship. The battle of diagnosis is one from which no one emerges a winner — “if you have to prove you are ill, you can′t get better”.3

The study by Åsbring and Närvänen was done in a specialist care setting. Patients in specialist clinics are not representative of the wider patient population. In particular, many patients seen in primary care settings perceive their symptoms differently and have a broader view of their illness, which incorporates elements of physical, social, and psychological causation.4 It would be an error to extrapolate the findings for this selected population to the wider population of patients.

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References
  1. ↵
    Deale A, Wessely S. Patients’ perceptions of medical care in chronic fatigue syndrome. Soc Sci Med 2001;52:1859–64.
  2. ↵
    Arnold LM, Keck PE Jr, Welge JA. Antidepressant treatment of fibromyalgia. A meta-analysis and review. Psychosomatics 2000;41:104–13.
    [CrossRef][Medline][Web of Science]
  3. ↵
    Hadler NM. If you have to prove you are ill, you can’t get well. The object lesson of fibromyalgia. Spine 1996;21:2397–400.
    [CrossRef][Medline][Web of Science]
  4. ↵
    Euba R, Chalder T, Deale A, et al. A comparison of the characteristics of chronic fatigue syndrome in primary and tertiary care. Br J Psychiatry 1996;168:121–6.
    [Abstract/FREE Full text]
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