Summary of IACFS/ME Online Conference August 21, 2020

iacfs/me Sep 02, 2020

The IACFS/ME conference scheduled for June 2020 was cancelled due to COVID and a mini-version was presented online on Aug. 21, 2020. This blog covers some of the highlights.

Research Underway by ME/CFS Researchers.    

Many people have asked me about similarities and differences between ME/CFS and COVID long haul (slow to recover). It is too early to know but rest assured several researchers, non-profits and online groups are gathering information and biological samples from COVID survivors to see whether they develop features of ME/CFS. All of the researchers mentioned here are ME/CFS informed so their research will have implications for better understanding ME/CFS. The two websites Body Politic and Survivor Corps are not ME/CFS specific.

Dr. Anthony Komaroff has given a webinar for Solve ME/CFS on the topic.

By YNG production - Own work, CC BY-SA 4.0,

  • Leonard Jason at De Paul University in Chicago is collecting symptom information on an existing cohort of 4500 college students. Five percent of his cohort have reported a COVID infection.
  • Ronald Tompkins of the Massachusetts General Hospital in Boston and CMO of the Open Medicine Foundation is studying hospitalized COVID patients with blood and cerebrospinal fluid genomics and proteomics.
  • David Putrino at Mt. Sinai hospital in New York is studying COVID long haulers. He also has a research project using virtual reality to impact neuroplasticity in people with persistent pain.
  • Luis Nacul, Medical and Research Director of the Complex Chronic Diseases Program (CCDP) at BC Women’s Hospital is involved in two COVID-related studies. The government of BC is providing clinical follow-up to all COVID survivors. Drs. Nacul and Jane McKay also from the CCDP are involved in this clinical program. Through his role at the UK ME Biobank, Dr. Nacul will be comparing biological samples of people with ME/CFS and MS with and without COVID to understand the impact.
  • The Solve ME/CFS Initiative Biobank is registering people who have experienced COVID to study the post-viral illness symptoms. They are also developing a registry and biobank of patients with ME/CFS.
  • Body Politic is a website with over 14,000 members who have tested positive for COVID. They provide a private web forum for those affected, their carers and people wanting to support the community including researchers.
  • Survivor Corps is a website dedicated to educating, connecting, motivating and mobilizing those affected by COVID.

Studies of Mitochondrial Dysfunction in ME/CFS

Dr. Ina Katrine Nitchke Petterson from Karl Tronstad’s lab in Bergen Norway presented research confirming this groups’ previous findings that there is a problem in the conversion of carbohydrates (pyruvate) into a form the mitochondria can use for energy production. The block seems to be in the conversion of pyruvate to acetyl CoA. They have found upregulation of a molecule which blocks the necessary conversion. This results in less use of carbohydrates for energy and a compensatory increase in the use of certain categories of amino acids (protein). Using protein for energy results in a decrease in certain amino acids in the body. At rest, mitochondrial function is unaffected but with “strain” glycolysis (anaerobic metabolism) increases and overall mitochondrial function decreases. This means the ME/CFS cells under strain produce less energy and more lactate. This strain can be created in healthy muscle cells by adding the serum of ME/CFS patients. This is now the third group to show that the energetic effects of ME/CFS can be transmitted through the serum.

Dr. Ron Davis at Stanford and Dr. Bhupesh Prusty working with Dr.Carmen Scheibenbogen in Germany have found that healthy cells can be made to function like the cells of ME/CFS by bathing them in the serum from people with ME/CFS.

Is Mitochondrial Function Connected to Post-exertional Malaise (PEM)?

Mr. Daniel Missailidis is a PhD candidate in the lab of Sarah Annesley and Paul Fisher at Latrobe University in Melbourne Australia. The research group is also studying the mitochondrial function in ME/CFS. Oxidative phosphorylation is the function that allows cells to produce enough energy for cells to function. There are 5 complexes in this process. The researchers have found that complex V is 25% inefficient. As a result, the mitochondria have to burn more fuel to keep up with energy demands. They do this by upregulation of a signalling molecule TOR-C1. There is increased activity of the TCA cycle which can burn sugar, fat and/or protein. Glycolysis (burning of sugar in the absence of oxygen) is unchanged whereas the burning of protein and fat are both elevated. The mitochondria can keep up with energy demands at rest but cannot do so when demands are elevated (found by other groups such as that of Dr. Maureen Hanson at Cornell University). Having a similar finding at two research labs across the world from each other is very encouraging. We may be getting to the source of post-exertional malaise experienced by people with ME/CFS.

What Helps Make People with ME/CFS Better?

Dr. Fred Friedberg from Stonybrook University in New York presented an elegant study on why patients get worse and why they get better. His team tested a model of what they thought might make people better or worse. For example, they thought pacing would help and push/crash activity patterns would worsen health. They had people track their activity patterns with an actigraph, complete weekly web diaries of activity patterns and life events and had participants complete a heart rate variability (HRV) measurement weekly for 6 months. HRV is a measure of autonomic nervous system balance.

Surprisingly, the activity pattern did not predict who was better and who was worse at the end of the 6 months. People with higher HRV (better autonomic nervous system balance) did better. The largest predictor of better health was whether people had more frequent “uplifts”. Uplift refers to some pleasurable or meaningful activity. This suggests that identifying activities that are within your energy and financial budget that help you feel happy, loved or worthwhile could improve health. Examples could include phone calls or visits with positive people, finding humor or beauty in life, engaging in creative or meaningful activities - anything you look forward to. And maybe activities that balance autonomic function such as mediation paced breathing, tai chi or an HRV app like Heartmath may help people improve health. Of course, this has to be tested. Many things that seem likely to be true turn out not to work in real life.

Effectiveness of Self-Management Education for ME/CFS

Violetta Rensca from the Institute of Neuroimmune Medicine at Nova Southeastern University in Fort Lauderdale Florida presented results of a 4-week self-management group for ME/CFS. The sessions covered diagnosis, behavior patterns, pacing, emotions, mindfulness, pain and sleep. Participants reported meaningful changes in several areas of function including mental fatigue, energy, anxiety, depression and sleep. This study was a small sample but does suggest that self-management education could be helpful.

Treatment of Postural Orthostatic Tachycardia Syndrome

Marvin Medow from the New York Medical College reported on treating children with Postural Orthostatic Tachycardia Syndrome (POTS) a condition experienced by many with ME/CFS.

Experience has found that giving saline intravenously is very helpful in the short term for people with POTS. The fluid expands the blood volume and more blood is available to get to the brain and other important organs. However, the effect of intravenous fluids lasts only for a few days. The treatment is expensive and there is a risk of infection with each needle poke. Taking saline water by mouth has not been found to be as effective. Dr. Medow compared IV saline (the gold standard) with the World Health Organization oral rehydration solution which is a mixture of saltwater and glucose. This recipe is used for people who are dehydrated from diarrhea from things like cholera. Apparently, the glucose assists the sodium to enter the blood. He found the oral rehydration solution to be as effective as IV saline both in terms of increasing brain blood flow and on markers of orthostatic tolerance. This is great news because the solution is easy and cheap to make. There are YouTube videos on how to make this solution at home.

Author: Eleanor (Ellie) Stein MD FRCP(C)
I am a psychiatrist with a small private practice in Calgary and am an assistant clinical professor in the faculty of medicine at the University of Calgary. Since 2000, I have worked with over 1000 patients, all with ME/CFS, FM and ES. My passion for this field comes from my own struggle with these diseases, my desire to improve my health and then pass on what I learn. My goal is for every patient in Canada to have access to respectful, effective health care within the publicly funded system. If you are looking for help and resources to help combat ME/CFS, FM and ES, see my guides and webinars.