Two questions for those who are currently patients under, or have a past engagement with, the Leeds ME/CFS Clinic:
- What was your experience like?
- What model did they utilise during your diagnosis and/or treatment?
I have been allocated a questionnaire to fill out by the clinic before they finalise an appointment. It includes the General Self–Efficacy Scale (GSE) and Hospital Anxiety and Depression Scale survey. Likewise, their referral document portends that suffers are '[...] vulnerable [to] conflicting beliefs that exist about this condition and this can lead to them developing unhelpful behaviours and thoughts towards themselves, the illness and professionals involved in their care.' (Source).
Given the clinic's history of utilising the biopsychosocial model, their lack of an onsite ME/CFS specialist, the predominance of the psychsomatic view of ME/CFS amongst physicians, their use of the Dysregulation Model, and the clinic's prior recommendations about GET and CBT that derived from the PACE trials - I am rather concerned.
During the appointment, do I mention that I have read and/or parsed through a number of medical journal articles and studies pertaining to the methodological* flaws of the PACE trials and how the psychosomatic view is considered inconsistent with current medical consensus, such as Torjesen (2018), Vink and Vink-Niese (2022) and Thoma, et al. (2023)? Do I not say anything? Do I question them on particular phrases or terms?
Any feedback on your past or present experiences would be appreciated.