Dismissing chronic illness: A qualitative analysis of negative health care experiences, 2019, L. Jason et al

Thank you to Lenny Jason and team!

Did I miss something, or is free access not available?

 

sci-hub link

 

Thank you!

 

Similarly, other chronic illness patient populations such as fibromyalgia and chronic Lyme disease have also experienced a lack of understanding from their HCP. Physicians’ lack of knowledge, lack of medical training, financial pressures on primary care clinicians’ time, complexity of the diseases with similar symptoms, and no medical specialty embracing these diseases have all contributed to a large unmet medical need for patients with neuro-endocrine-immune diseases (Tidmore et al., 2015). Prior research on AIDS, has shown empathy plays an integral role in improving attitudes towards a group of individuals with a stigmatizing illness (Batson et al., 1997). Thus, a patient-centered, empathetic, informed treatment approach would likely be beneficial to improving the doctor–patient relationship, which has been fraught with perceived delegitimization due to a predisposition to psychological diagnoses and treat- ment approaches.

 

Also nice to see they're adding this important background information on GET/CBT

Ascribing illness attributions to a psychological etiology and recommending a course of treatment based on these assumptions could have negative effects on the doctor–patient relationship. In particular, graded exercise therapy (GET) has been recommended, along with cognitive behavioral therapy (CBT), for the treatment of ME and CFS in the UK (Baker & Shaw, 2007). This recommendation was evaluated by the Randomized Evaluation of Pacing, Graded Activity, and Cognitive Behavior Therapy study (i.e. PACE trial), where researchers claimed that patients recovered from CFS following courses of CBT and GET (White et al., 2011). However, the methods of the PACE trial have been widely criticized. One major flaw was that the criteria set for determining recovery were more lenient and specified lower symptom levels than thresholds set for inclusion in the patient group. Independent reanalysis of the data has shown the claims of recovery were not supported (Wilshire, Kindlon, Matthees, & McGrath, 2017). Patients have reported that GET and CBT, rather than helping, caused a deterioration in health (Kindlon, 2011; ME Association,2015). Patient groups have emphasized the effectiveness of approaches that focus on relapse prevention and the mitigation of symptoms. This involves listening to the warning signs their bodies send during exertion, avoiding situations that might cause symptom exacerbation, and pacing themselves (Clements et al., 1997; Denz-Penhey & Murdoch, 1993)—a sharp contrast from the increasing activity prescribed in GET. Pacing and staying within the individual’s energy envelope is one such method that patients have found helpful (Jason et al., 2013).

 

@Sly Saint reference for letter

 

https://twitter.com/user/status/1224758772268195848

 

I think I will, from now on, if I want acknowledgment or compassion, say I have an autoimmune disorder (one of my diagnoses). If I say fibro, forgetaboutit. And ME or CFS, it's not even heard.

We need more science-based PR, somehow.

 

https://twitter.com/user/status/1224813835787304962

 

https://twitter.com/user/status/1224814335597383680

 

https://twitter.com/user/status/1224814916021911553

 

Baloney. You don't get symptoms like tender lymph nodes and sore throats from sleep deprivation.

Also, many people with ME/CFS develop alcohol intolerance after becoming ill. If sleep deprivation caused alcohol intolerance, sleep deprivation could be used to treat/cure alcoholism which again is baloney.
https://twitter.com/user/status/1225117582308626432

https://twitter.com/user/status/1225118067417591809

 

https://twitter.com/user/status/1225119473239306240

 

https://twitter.com/user/status/1225120426940125184

 

I was being treated for a ruptured Achilles tendon by a hospital physio. I also have severe ME. The physio scolded me for using a wheelchair to get from the hospital carpark to the physio ward. He was extremely dismissive of ME.

Due to this, I ended up seeing a private physio. She said to me later that that particular carpark is extremely difficult to navigate for someone with an injury because there are lots of stairs and ramps, let alone someone with severe ME/CFS as well. She would recommend a wheelchair to most patients just to minimise the risk of further injury.

She also asked me if I'd considered telling people that I had MS instead of ME because people would no doubt treat me with much more compassion.

 

https://twitter.com/user/status/1225482615077134339

 

https://twitter.com/user/status/1225483431993278465

 

https://twitter.com/user/status/1225553045112729600