An ideological position rather than ignorance
A while ago, the Stenungsund newspaper (ST) published an article about a person with severe ME. She spoke openly about her difficult situation under her full name. In response, a doctor has now chosen to write an anonymous opinion piece full of disinformation and belittling phrases about ME.
Despite its nastiness (or perhaps because of it), the article is a prime example of why it is so problematic to talk about the lack of care for ME sufferers being due to ignorance. Because the doctor in the article shows clear signs of contempt for knowledge and of having deliberately opted out of current biomedical research.
I would therefore like to say that the disastrous content of the opinion piece is the consequence of an ideological position rather than ignorance,
The doctor writes, among other things, that ME is about us sick people not being able to cope with life's difficulties, that we are stuck in pathological behaviours that we cannot get out of, that we have to want to get well in order to do so, and that the lack of objective findings shows that ME is a psychiatric illness that can be treated with talk therapy and physiotherapy.
Some quotes from the article: [...]
That article follows the template of how the BPS lobby usually argues to the letter.
The doctor:
- labels ME as psychological on the basis that there are currently no methods for measuring biological abnormalities in primary care
- avoids mentioning the research that exists on biological abnormalities in ME and the main symptom, exertion-triggered exacerbation of symptoms (PEM)
- makes remarkable and speculative claims about the cause of ME and about treatment without referring to a single source
- blames ME sufferers for protesting against inadequate care and claims that they are making themselves sicker
The CDC, which is the central authority in the United States for the control and prevention of disease in the community, writes the following about ME in its information for health professionals:
‘Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic, life-altering disease that affects many organ systems. It goes far beyond ‘being tired’ and profoundly affects patients' quality of life and abilities. Patients often experience a significant decline in physical and mental functioning at some point during their illness.’ (CDC)
‘ME/CFS is a biological disease, not a mental disorder. Patients neither simulate nor seek disease gain. Patients have multiple pathophysiological changes affecting several different organ systems. So far, none of the changes are sensitive or specific enough to be used for diagnosis. Alterations have been reported in the immune system, energy metabolism, neuroendocrine system, autonomic nervous system, gastrointestinal system, and others.’ (CDC)
‘Caregivers need to be aware that the functional capacity of their patients can be seriously impaired if they exceed their individual capacity limit. In general, patients should not push themselves beyond their capabilities as this may worsen their symptoms and trigger PEM.’ (CDC)
‘Best practice: prevent harm! In the past, patients have been advised to increase their activity without any precautions around PEM. However, studies have shown a lowered anaerobic threshold in patients with ME/CFS, suggesting impaired aerobic energy metabolism. Thus, increased activity may be harmful if it leads to PEM.’ (CDC)
There is a difference in the content of the opinion piece, so say the least. The difference between information and disinformation.
Now, I think some of you are going to ask me to write a reply to the doctor in ST, but I can already say that I will not do that. For today, I have chosen to focus my energy on internal training. To clarify the difference between ignorance and ideologically coloured cherry picking.
I want to show that we can learn to see the ideology behind things that sound like ignorance and pure nonsense. And thus emphasise that this needs to be addressed in a completely different way than if we label it as ignorance.
If you want to read the article without generating clicks,
there is an archived version [here].
For those who do not know what the BPS lobby is, and want to understand the context in which this ideology I am talking about has emerged, I recommend listening or reading
my podcast Maran's second season [To compilation post].
