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Severe ME in Denmark

In a study aiming to describe the medical and social conditions of the most severely ill patients with ME in Denmark, the researcher narrated the experiences of nineteen participants [17 women and two men (average age was 34 years, and age ranged from 26 to 49 years), severely ill for 9.8 years on average and diagnosed using the International Consensus Criteria] and evidences a bleak view of life with severe ME and the supprt given in the country. Of course, Danish health professionals and social support networks are, alas, not unique in ignoring the needs of those persons with ME who are the most severely affected by the disease.

The report estimates that there 150 severely affected persons in Denmark from c15,000 estimated to have ME. A particularly difficult point is that the Danish authorities do not follow international norms re diagnostic criteria but rather diagnose the disease as ‘functional disease: general/tiredness’.

In summary the experiences of those who participated were –

  • 16 of the 19 participants were primarily or completely bedbound with nine of these 16 in dark/dimmed rooms, often also with auditory protection (ear plugs, headphones) – 3 of whom were too weak to stand, even for toileting and personal hygiene.
  • 15 of the 19 participants needed personal care. Two participants were living in a care environment and of the others, family members estimated the time needed for care for the 13 cared for at home averaged 3.3 hours per day. Seven 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.
  • The Danish Health Authority has recommended an outpatient clinic to be established for ‘functional disorders’ but treatment in these clinics requires patients to be able to travel and attend group sessions lasting 2-3 hours. The researcher found that such clinics had a 2-year waiting period for the first medical consultation. The participants’ level of functioning was obviously far too low to be included in these ‘functional disorders’ clinics.
  • GPs had refused home visits to 10 of the 19 participants. Three of the participants had not been able to register with a GP at all. Several participants had experienced being removed from their GP list by GPs who no longer wanted to have them as a patient – others had been told by their GP that ME was not an actual illness.
  • The hospital system was generally described as exhibiting neither acknowledgement or knowledge of ME. Thus, on admission, no accommodatons were made e.g. light and sound shielding, which often led to a worsening of ME symptoms during hospitalisation.
  • 10 of the 19 participants received no care community help for their care tasks, and only two participants, who needed round-the-clock care at home, were financially covered for their care. Two other participants lived in municipal institutions.
  • Some with the financial means obtained legal advice to pursue their social cases, which allowed them access to social benefits. Five needed to buy their own wheelchairs as the state refused to pay for these. “The social worker said: If you’re lying down in bed all the time, you do not need a wheelchair. We were refused the installation of handles in the bathroom. Mom had bought a toilet-transfer chair and a bath chair, and then it was said that we could also buy an elevation bed ourselves.”

Given these fundings, the report’s Impact Statement found

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.


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