IACFS/ME Conference: Dr Alison Bested on Diagnosis and Treatment by Katrina Pears

September 24, 2021


The 2nd Virtual Scientific Conference for the International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis was held on the 19th – 21st August 2021 (streamed on zoom). The conference promoted unpublished data and included both clinicians and biomedical researchers.

The talks were grouped into different sections, including the longer 45 minute talks in the Professional Workshops and shorter talks covering topics of infectious diseases, immunology and clinical cases.

We have chosen a selection of the talks which will hopefully be of interest to you, which are listed below. We begin with the presentation from Dr Alison Bested giving an overall background to ME/CFS, titled “Clinical Pearls to Diagnose and Treat Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”. The rest of the reviews will follow.

Due to the format of the conference and the focus on unpublished data, no direct recordings or pictures are freely available as this may jeopardise publication. The full conference programme can be found here and recordings may be purchased on the IACFS/ME website.

PROGRAMME OF EVENTS WITH LINKS TO OUR BLOG REVIEWS

Professional Workshops

Alison Bested, MD, FRCPC, ABOIM
Chair, Integrative Medicine, Associate Professor
Nova Southeastern University; Weston, FL, USA  

Blair Grubb, MD
University of Toledo; Toledo, OH, USA

Carmen Scheibenbogen, MD  
Institute for Medical Immunology, Charité University Medicine (Germany)  

Larry Afrin, MD
AIM Center for Personalized Medicine; Purchase, NY, USA    

Keynote

Avindra Nath, MD
US National Institutes of Health, NINDS; Bethesda, MD, USA    

Infectious Disease

Leonard Jason, PhD
DePaul University; Chicago, Illinois, USA  

Provocation Studies 1

Immunology

Neurology/ Epidemiology

Clinical cases

Hector Bonilla, MD
Stanford University; Stanford, CA, USA  

1. Clinical Pearls to Diagnose and Treat Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Alison Bested, MD, FRCPC, ABOIM
Chair, Integrative Medicine, Associate Professor Nova Southeastern University; Weston, FL, USA

Dr Bested is a specialist in haematology (specialist area in diagnosis and management of problems with blood cells) and her work is dedicated to helping people with chronic illnesses. At the start of the talk, she acknowledged her patients for teaching her so much. This presentation is primarily for practitioners to improve teaching and diagnosis of ME/CFS and gives a good background to the illness. The take-away message is to make an early and accurate diagnosis which will help the patient the most.

The talk began with the history behind ME/CFS. It is not a new illness and has been seen in history since around 1400 BC. ME/CFS is a multiple organ illness and involves immune and autonomic dysfunction.

Dr Bested went through how to make a diagnosis: take a family history, do a physical examination, and take laboratory tests to rule out other illnesses. Different diagnostic criteria were looked at: the IOM diagnostic criteria which covers five main symptoms and the ME/CFS Canadian Clinical working case criteria which covers a larger range of symptoms. A clinical criteria worksheet checklist can also be used to rule out other illnesses.

She then went through the pathophysiology of ME/CFS and the fact that all bodily systems are involved, including genetics and metabolism. Research studies showing differences compared to healthy controls were briefly covered. These included: genetics, cognitive dysfunction, autonomic and cardiac dysfunction, immune dysfunction, neuroinflammation, muscle metabolism, abnormal aerobic metabolism, stressors and microRNAS.

Dr Bested reviewed supportive symptomatic care which looks at managing symptoms and a whole person holistic approach (including income, support

systems, living situation). The importance of making a diagnosis was stressed, as it helps to achieve better outcomes, and the person can begin to heal. Pacing was stressed as the single most important form of self-management; GET and pushing to do more were acknowledged as harmful. It was important to understand, she said, that every activity costs energy, and activities should be alternated with rest. Activity logs can be used to see patterns and help prevent crashes.

In her opinion, management approaches also need to cover:

  • Diet and nutrition: Food that is not as processed and contains less chemicals can mean less inflammation, problems with food security which means no income for meals or no support to make meals, as well as gut imbalances and food sensitives should also be considered,
  • Sleep hygiene: pace to avoid being “over tired and wired”, and the role of meditation which is better than medication (i.e. non-drug approaches),
  • Cognitive problems: how to manage over- stimulation,
  • Pain: how to treat and self-manage.

Fundamentally, the approach to management needs to look at rebalancing the whole system, including support, exercise (even if just steps), sleep, environment and diet. Furthermore, it is critical to have regular follow ups with a physician, investigate all new symptoms which develop and also any worsening of symptoms.

(N.B. there was change in the running order of the presentations, this talk is the third listed in the programme)

Katrina Pears, Research Correspondent, ME Association

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