IACFS/ME Conference –  Dr Leonard Jason on “COVID-19 Symptoms Over Time: Comparing Long-Haulers to ME/CFS”

The 2^nd Virtual Scientific Conference for the International Association for Chronic Fatigue Syndrome/ Myalgia Encephalomyelitis was held on the 19^th – 21^st 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 The conference promoted unpublished data and included both clinicians and biomedical researchers.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. Here we report on our sixth talk in this series with a talk from Dr Leonard Jason who talked about his study on comparing symptoms in long-COVID to ME/CFS patients, with his presentation titled “COVID-19 Symptoms Over Time: Comparing Long-Haulers to ME/CFS”. The further talks we will cover are shown below and these will be available in one report by the end of October 2021.

Due to the format of the conference and the focus on unpublished data, no direct recordings or pictures are available freely as this may jeopardise publication.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

6. COVID-19 Symptoms Over Time: Comparing Long-Haulers to ME/CFS  

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

Dr Leonard Jason’s presentation was one of the shorter presentations, he gave a very quick and interesting overview to his current research. He began with talking about previous pandemics such as the Spanish Flu where people have been shown not to recover, so this is not a new phenomenon. Informal studies have shown that 91% of people with a COVID infection do not recover after 40 days and 70% develop new symptoms which they did not have before. It is thought that after 6 months 10-20% do not recover and develop long-COVID. 

Dr Jason’s study focuses on answering two questions: 

• How does COVID symptomology change over time? 
• How do the symptoms compare to ME/CFS? 

Dr Jason’s research study used 278 patients with long COVID and 502 ME/CFS patients. Samples were compared at the initial and after 5.5 months for COVID patients and then to ME/CFS patients using statistical tests (known as ANCOVA- analysis of covariance). The patients were assessed through questionnaires and results were grouped into categories: 

• Sleep (including: unrefreshing sleep, needing to nap, difficulty falling asleep or staying awake): results showed that COVID patients improved overtime, but had initially a worse score for sleeping in the day and needing to nap than ME/CFS patients. ME/CFS patients had worse scores over time. 

• Neurocognitive (including: difficultly remembering, forming words, sensitivity to noise, light, smells): results showed that COVID patients did not improve over time but ME/CFS patients were more symptomatic in most symptoms studied and over time. 
• Immune (including: sore throat, lymph nodes, fever, high temperature): results showed COVID patients improving over time but had initially worse symptoms than ME/CFS. 
• Neuroendocrine (including: cold limbs, temperature regulation, appetite, weight): results again showed COVID patients improving with time with ME/CFS patients having a worse initial and current phase of many of the symptoms. 
• Pain (including: muscle pain, headaches, joint pain, eye pain): interesting that the result that was highlighted here was the worsening of headaches seen in COVID patients compared to ME/CFS. 
• Gastrointestinal (including bloating, bladder problems, alcohol sensitivity): results again showed COVID patients to improve but ME/CFS patients became worse over time. 

• Orthostatic (including nausea, dizziness, irregular heartrate): results again showed COVID patients to improve but interesting were worse than ME/CFS patients on the initial time point. 
• CDC (including dry cough, loss of taste/smell/hair, congestion): results again showed COVID patients to improve but not with hair loss. 

Results from Dr Jason’s study emphasised an improvement in COVID patients over time, but there were exceptions seen in some of the symptoms, such as: sensitivity to alcohol, difficulty forming words and focusing, absent mindedness and hair loss. Most of the symptoms which didn’t improve are neurocognitive.  

Results presented by Dr Jason also showed that COVID patients were more symptomatic and impaired initially especially with immune and orthostatic symptoms studied but ME/CFS patients are more impaired with gastrointestinal and neurocognitive symptoms. At the current time point studied, ME/CFS are more impaired across all symptoms apart for orthostatic symptoms, this is further supported by cardiac studies (such as Puntmann et al., 2020). Dr Jason finished by stressing that classifying long-COVID is important for future studies and treatment. 

Katrina Pears, Research Correspondent, ME Association