The psychosomatic focus on CBT and GET has delayed scientific understanding of ME/CFS by 30 years

By David F Marks:

 "A new properly scientific framework for the understanding of MUS/MECFS is urgently needed, grounded in the biological bases of the illnesses. The psychosomatic focus on CBT and GET for MUS and MECFS has delayed scientific understanding of the disorders by 25 to 30 years." 

Systematic review: widespread disruption of the autonomic nervous system network in ME/CFS

RESEARCH ARTICLE

A systematic review of neurological impairments 

in myalgic encephalomyelitis/chronic fatigue 

syndrome using neuroimaging techniques

• Rebekah Maksoud, 
• Stanley du Preez, 
• Natalie Eaton-Fitch, 
• Kiran Thapaliya, 
• Leighton Barnden,
• 
  

• Hélène Cabanas, 
• Donald Staines,  …
Published: April 30, 2020

• 
  
• https://doi.org/10.1371/journal.pone.0232475

• 
  

  Abstract

  
  

  Background

  
  

  Myalgic encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is a multi-system illness characterised by a diverse range of debilitating symptoms including autonomic and cognitive dysfunction. The pathomechanism remains elusive, however, neurological and cognitive aberrations are consistently described. This systematic review is the first to collect and appraise the literature related to the structural and functional neurological changes in ME/CFS patients as measured by neuroimaging techniques and to investigate how these changes may influence onset, symptom presentation and severity of the illness.

  
  

  Methods

  
  

  A systematic search of databases Pubmed, Embase, MEDLINE (via EBSCOhost) and Web of Science (via Clarivate Analytics) was performed for articles dating between December 1994 and August 2019. Included publications report on neurological differences in ME/CFS patients compared with healthy controls identified using neuroimaging techniques such as magnetic resonance imaging, positron emission tomography and electroencephalography. Article selection was further refined based on specific inclusion and exclusion criteria. A quality assessment of included publications was completed using the Joanna Briggs Institute checklist.

  
  

  Results

  
  

  A total of 55 studies were included in this review. All papers assessed neurological or cognitive differences in adult ME/CFS patients compared with healthy controls using neuroimaging techniques. The outcomes from the articles include changes in gray and white matter volumes, cerebral blood flow, brain structure, sleep, EEG activity, functional connectivity and cognitive function. Secondary measures including symptom severity were also reported in most studies.

  
  

  Conclusions

  
  

  The results suggest widespread disruption of the autonomic nervous system network including morphological changes, white matter abnormalities and aberrations in functional connectivity. However, these findings are not consistent across studies and the origins of these anomalies remain unknown. Future studies are required confirm the potential neurological contribution to the pathology of ME/CFS.
• 
  

21-year old with no underlying medical conditions dies from Corona

A healthy 21-year-old woman has died from coronavirus despite having no underlying health conditions, her family have said.

Chloe Middleton's family took to social media to describe the "unimaginable pain" they are going through after her death.

The young woman was described as healthy by her family who are urging people to strictly follow government measures to stay at home.

Mum Diane Middleton wrote on Facebook : “To all the people out there who think it's just a virus please think again.

“Speaking from a personal experience this so-called virus has taken the life of my 21-year-old daughter.”

Chloe's aunt wrote: "My beautiful, kind hearted 21 year old niece Chloe has passed away from Covid-19. SHE HAD NO UNDERLYING HEALTH ISSUES.

“My loved ones are going through the most unimaginable pain, we are shattered beyond belief.

“The reality of this virus is only just unfolding before our very eyes. Please, please adhere to government guidelines. DO YOUR BIT. Protect yourselves and protect others!

"The virus isn’t spreading, PEOPLE are spreading the virus.

“Life as we know it has changed dramatically but unless we all act now to protect ourselves and others, the longer this turmoil and anguish will go on. Rest in peace Chloe. Until we meet again...”

https://www.msn.com/en-gb/news/coronavirus/coronavirus-woman-21-believed-to-be-uk-s-youngest-to-die-with-no-health-conditions/ar-BB11GxC4?ocid=AMZN

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