Care providers use the knowledge gap about ME/CFS as an excuse for indolence

February 2020 

Läkartidningen 117(8):FY3L

• Project: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

• 
  Sten Helmfrid
• 
  Sture Eriksson

• Abstract

  Care providers use the knowledge gap about ME/CFS as an excuse for indolence. In spite of differences of opinion among researchers on the significance of reported physiological abnormalities, studies support the existence of a severely debilitating syndrome, independent of geography and with a distinct pattern of symptoms. Even though there is no specific treatment; patients need help with diagnosis, symptom relief and support measures. A recent official Swedish report concludes that this is best done at specialist clinics.
  When myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) gets media atten-

  tion, the lack of knowledge of the underlying pathology and the disagreements within

  the medical community are often emphasized.1,2 Care providers use the knowledge gap

  as an excuse for indolence.3 It is therefore important to point out that there is much that

  the researchers actually agree on and that the care of this neglected group of patients

  has to improve.

  ME/CFS was first observed as a sequel to certain infections.4,5 The cardinal symptom is

  post-exertional malaise (PEM).6 This can be described as a significant fatigability and

  symptom exacerbation after physical or cognitive activity, which often sets in with a de-

  lay. Other key symptoms are fatigue that is not relieved by rest, unrefreshing sleep, and

  neurocognitive impairment (e.g. concentration problems, short-term memory loss, and

  difficulty processing information). Most patients also show an array of autonomic, im-

  mune, and endocrine symptoms; as well as pain.7 The illness is recognized by the World

  Health Organisation (WHO) since 1969.8

  ME/CFS is not a socially transmitted illness, nor is it limited to western societies. The

  illness has been found in all places where it has been looked for: all social groups, all

  ethnic minorities, and all geographical regions.9-14 Studies show that ME/CFS often is

  severely debilitating,15-19 which is also acknowledged by clinicians and scientists working

  with this group of patients.20 The illness has an alarming tendency to become chronic,21,22

  although the prognosis for children and adolescents seems to be better.23,24 In 70–80 per-

  cent of the cases, the illness is triggered by an infection.25-28 However, there are other

  triggers, and the onset may also be gradual.29 It is well documented that some pathogens

  carry a high risk for developing ME/CFS, for example Epstein–Barr virus.30-34

  Physiological abnormalities have been reported in a number of studies, but there is a

  difference of opinion about the significance of the findings and there is no clear under-

  standing of the pathology. Some examples of findings that might provide valuable clues

  to what is going on are functional, chemical, and structural abnormalities in brain

  scans,35-42 impaired NK cell cytotoxicity,43 signs of autonomic44 and mitochondrial dys-

  function,45-47 and an unknown, soluble factor in the blood serum of patients that has

  affected the results of several studies.48-52 Physiological abnormalities and impaired cog-

  nitive performance have also been observed after exertion, which suggests that PEM is

  an objective phenomenon.53-58

  The controversy surrounding ME/CFS has mostly been about a treatment model, which

  is based on the assumption that the illness is perpetuated by unhelpful beliefs and de-

  conditioning. The model has been tested in a number of treatment studies, which have

  shown modest improvements in subjective outcomes.59 However, the results are dismis-

  sed by many researchers, as no improvement has been demonstrated in objective out-

  comes and the treatment effects do not exceed what could be expected from systematic

  bias.60-63 A recent review concluded that there is little scientific support for the model.64

  There has also been a difference of opinion about the diagnostic criteria. British psychi-

  atrists tried to redefine ME/CFS as idiopathic chronic fatigue,65 a proposition that has

  been dismissed by other scientists.66 There is some uncertainty about how a distinct clin-

  ical entity should best be defined, and several different diagnostic criteria have been

  proposed.67 However, this uncertainty does not invalidate the phenomenon ME/CFS.

  It is not acceptable to refer patients with ME/CFS to the Swedish primary care, where

  many GPs openly question the legitimacy of the diagnosis.3,68 Granted, there is no spe-

  cific treatment available, but the patients still need a thorough diagnosis, symptom relief

  and supportive care.69-71 A recent report published by the Swedish Agency for Health

  Technology Assessment and Assessment of Social Services (SBU) concluded that this can

  best be accomplished by specialist clinics,72 which so far only are available in a few pla-

  ces. The Swedish Counties must take a greater responsibility for this group of patients

  and provide specialized care. ME/CFS exists and the problem will not disappear.

  
  

  https://www.researchgate.net/profile/Sten_Helmfrid/publication/339325123_Care_providers_use_the_knowledge_gap_about_MECFS_as_an_excuse_for_indolence/links/5e4b8ee0299bf1cdb933c1cc/Care-providers-use-the-knowledge-gap-about-ME-CFS-as-an-excuse-for-indolence.pdf

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