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New research paper: home healthcare for severe M.E.

July 06, 2020

A research paper from the team at the UK M.E./CFS Biobank, who have visited nearly 100 people bed- or house-bound with M.E., offers their reflections on healthcare for those severely affected by M.E.

“This is a disease of low prestige, and people with M.E. often experience damaging negative encounters with GPs, nurses, and other healthcare practitioners (HCPs) ; disrespectful treatment and trivialising of legitimate symptoms may lead to loss of agency and alienation from all medical services. People with M.E. are often made to feel, in the words of one parent carer, 'that they are second-class citizens, malingerers or at least somehow responsible for their own misfortune.' [...] In the face of such discrimination, we strongly believe that HCPs are duty-bound to ensure that the person with severe M.E./CFS receives the person-centred care she/he needs, despite the fact that, as is understood currently, little can be done to change the pattern of the illness.”

Of those with severe M.E. that the team visited:

  • 100% reported having exercise intolerance (post-exertional malaise), with 90% reporting severe exercise intolerance. A parent of someone with M.E. said: “If my daughter cleans her teeth herself, that is it for a week. She can’t do anything more.”
  • 95% reported having brain fog.
  • 95% reported short-term memory problems.

The team suggests that "responsibility and compassion should guide all interactions between [healthcare professionals, or] HCPs and patients and are critical to the therapeutic relationship; they are particularly important when HCPs interact with people with severe M.E./CFS," and go on to outline approaches, underpinned by "empathy, respect and dignity," for arranging, preparing for and carrying out home visits.

Much of this is practical advice that people with severe M.E., and those caring for them, may find useful to share with professionals. The full paper can be downloaded for free online.