Report: Very Severely Ill ME/CFS Patients "the most neglected" in Denmark
Documentation of the Danish government’s extraordinary mistreatment of citizens with ME/CFS
Danish psychologist Peter la Cour took a deep dive into the dire conditions in which ME/CFS patients live, particularly the very severely ill. In his study of patients with “very severe ME/CFS” in Denmark, he found that “the participants received very little help from medical professionals and health services such as institutions and hospitals.” In fact, la Cour found, “the relations between patients and the health system were generally characterised by mutual distrust.” (1)
This is not breaking news. Numerous other researchers have published studies about how neglected and abused ME/CFS patients are, in Europe as well as in the U.S. (2-16)
Nevertheless, la Cour’s study is a comprehensive look at the neglect and abuse endured by this very sick patient population in the Scandinavian country.
La Cour’s “Impact Statement” in this paper is damning:
“The most severely ill patients with ME/CFS are bedbound and are completely dependent on external care. Relative to their dire condition, the participants in this study received very little help from medical professionals and health services as well as social services. Caregivers were mainly family members. The most severely ill patients with ME/CFS and their caregivers must be characterised as a systematically neglected patient group not comparable to any other similarly ill group.” (1) [Emphasis added.]
Approximately 15,000 people have ME/CFS in Denmark, similar to the number who have multiple sclerosis. But the ME/CFS patients are much worse off than the MS patients, according to la Cour:
“Some of these [severely affected ME/CFS patients] manage a short daily conversation, while others are unable to converse at all. Some need food and fluids given through a tube or are fed intravenously. The most severely affected patients have an extremely low tolerance for sensory stimuli (light, sound, smell, touch, and movements in the room). Even the slightest sensory load worsens their symptoms, often forcing them to stay sensory protected in dark rooms wearing earplugs or headphones.”
In fact, many of these patients “spend very long periods in the darkness and are entirely dependent on intensive care. This group is known to be at high risk for suicide,” he added.
La Cour acknowledges that ME/CFS has been shown to be a biological disease—notable coming from a psychologist. And he is very critical of the stance of the Danish health authorities.
“Denmark’s perspective on ME differs from international standards,” la Cour pointed out. “In 2018, the Danish health authorities classified ME as a ‘functional disease’ to be diagnosed with a specially created Danish diagnosis called ‘functional disease: general/tiredness’, instead of using the WHO diagnosis of ME. The Danish health authorities thereby perpetuate outdated ideas about unique psychosocial characteristics in the aetiology and illness progression of ME.”
Based on other surveys of ME/CFS patients in Europe, la Court estimated that 1% are “most severely affected,” i.e., approximately 150 patients. In Europe, ME/CFS is diagnosed by using the 2011 “International Consensus Criteria.” According to the Consensus Criteria, “very severely affected” ME/CFS patients are “bedbound and dependent on help for physical function.” (17)
Don’t get me wrong: None of these criteria or guidelines or classifications is at all useful. Some are just more damaging than others.
La Cour’s 2024 publication describes his interviews with 19 of the “the most severely affected” ME/CFS patients all over Denmark. He spent 2-4 hours interviewing first the patients, and then their primary caregivers, who were usually family members.
Of the 19 study participants (17 women and 2 men), 16 were “primarily or completely bedbound,” the criterion for a diagnosis of “very severe ME/CFS” elsewhere in Europe.(1)
“Three were too weak to stand on their legs, even for toileting and personal hygiene. ... The remaining 13 got out of bed for toileting, personal hygiene, and other things; 9 of the 13 were out of bed for 5-20 minutes a day, and the last four were able to get out of bed 60-120 minutes, for example, lying on a couch in the living room. ... Seven of the ME participants were unable to feed themselves and needed to be fed. Six were not able to be alone and needed round-the-clock call possibilities, especially for toileting.” (1)
La Cour spoke to 17 of these 19; the other 2 were too debilitated. “One participant was mutistic and unable to speak at all,” la Cour reported. “Overall, the participants had severely reduced levels of function, some worse than those usually seen in intensive care units.” (1)
The patients’ treatment by the Danish medical profession is as heartbreaking as it is enraging. Medical home visits had been refused to 10 of the 19 patients in this study. The levels of support from local authorities—in the “municipalities”—varied from extremely hostile and litigious to deliberately ignorant of the need for help. Only one of the municipalities responded in an appropriate and helpful manner. Ten patients in the study were receiving no help at all from local social services.
The Danish Health Authority recently established outpatient clinics for ME/CFS and other “functional disorders.” However, patients needed to be able to travel to the clinics, which none of these patients was. But since there was a two-year waiting period for an appointment at the time of this survey, it hardly mattered.
These patients’ general practitioners (GPs) weren’t any more helpful, most refusing to do home visits. “If she can go to the bathroom by herself, I won’t come for home visits,” one local GP said. Other patients had suffered similar forms of abuse—withholding of care to a bedbound person surely qualifies as abuse—being told that ME/CFS is not a real disease, being threatened with being dropped from the GP’s practice and told to “lose weight and exercise.” Only three patients reported positive interactions with their GPs. (1)
And there’s more: la Cour reported that hospital personnel, social workers, municipality officials, everyone on whom very severely ill ME/CFS patients need to rely for life-saving services were “building insurmountable walls” between themselves and the people they should be caring for—particularly those patients with “suicidal ideation,” which is high among patients with very severe ME/CFS. (1)
La Cour blames the Danish government for these patients’ plight, since it directs health authorities to “use the broad term ‘functional disease: general/tiredness’ as a diagnosis, thus maintaining the question of ME as a ‘real’ disease.” (1)
As to the caregivers, they “seem to be just as systematically neglected as the most severely ill ME patients themselves,” some being accused of Münchausen by Proxy or even incest. (1)
So, why does the global public—and medical professionals worldwide—still not know how sick ME/CFS patients are, that some of them can’t feed themselves, can’t be outside of a dark, quiet room without enduring pain, are suicidal and actually commit suicide at an unacceptably high level?
Because governments are actively preventing ME/CFS from being recognized as a “real,” serious illness just as they are actively preventing ME/CFS patients from receiving adequate care.
Can governments be embarrassed into doing the right thing by their sickest, neediest citizens? Probably not, given the decades of struggle faced by ME/CFS patients, but
la Cour has produced powerful documentation of how atrociously ME/CFS patients are treated in yet another country.
AUTHOR’S NOTE: For more information on ME/CFS, check out two of my Kindle books on Amazon.com: AMERICA'S BIGGEST COVER-UP: UPDATED 2ND EDITION 50 More Things Everyone Should Know About the Chronic Fatigue Syndrome Epidemic and Its Link to AIDS. First Edition, 1993; Updated 2nd Edition, March 9, 2022 and Ampligen: The Battle for a Promising ME/CFS Drug. June 2, 2022.
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