Pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)--Dr. Anthony Komaroff

Thank you for this comprehensive presentation on Me/CFS & Long COVID. It was incredibly informative. I SO WISH/ WANT my Family and certain Friends to watch this presentation. Unfortunately, that will never happen!! I think I share this desire with many in the Me/CFS Community. Much of the public's thinking about Me/CFS, seems to be stuck in the 70's & 80's, believing the old Medical "Diagnosis" of it not being a "real" illness/ disease. Thinking of it as Middle Aged Women w/ Depression or other Mental Illness Disease. Then it being the labeled the "Yuppie Flu", and people suffering from it thought of or called malingers. I am a Registered Nurse, who LOVED MY JOB ! I was honored to receive an "Excellence in Nursing" Award. I received it 3 years before I became ill. I struggled to continue working Full-time in the Pediatric Intensive Care Unit at a Level l Trauma Center. I loved my job, I considered it an honor to be a Nurse and had worked in the PICU for 15 years. Unfortunately, due to Exhaustion, Pain and Cognitive Decline, at 47 years old, I had to take a Leave of Absence from my job, and I was never able to return to work! I don't understand how people who knew me before I got ill, during the start of being ill and now being disabled & chronically ill,... Can possibly believe that one day I just woke up and decided to fake a Disabling Illness. Why would I want to go from making $90,000 at a job I loved and was darn good at, to being disabled getting $27,000 in Social Security Disability Insurance. Losing my life savings, while seeking a cure for my illness, being isolated from everything & everyone I love,.... all for what?

THANK YOU Dr.Komaroff for doing this presentation in my local area, As an M.E/CFS patient of 19 yrs, I have endured unnecessary test, medications& treatments by local physicians who not only knew nothing about my disease, but who also refused to listen when I would even mention those letters. After 19 yrs, I saw Dr.Systrom at BWH & for the first time felt empathy & understanding from a physician. Thank you for everything you & Dr.Systrom's team are doing to help the M.E/CFS community.

I have read at least one study that showed that Graded Exercise Therapy and Cognitive Behavior Therapy both made CFS symptoms worse, not better. The group that had the WORST increase in CFS symptoms was the group that did both of these therapies.

Thank you for this comprehensive review. How can someone get help in the location they live in. They should have all these tests available and do them all on patients where CFS is suspected. I’ve had CFS and I believe FM as well, since 2012. Im single, live alone, and still work. I have no other choice. I’ve had depression and anxiety prior to CFS, so that’s all I can get treated for. The treatments do not help. The standard autoimmune and neurological tests show nothing.

Wow. He really makes me feel optimistic about the future. He gives no hope in all his observations of this illness

Any treatments in foresight?

Thank you for this scientific report of the true nature of ME/CFS.

Phenomenal presentation, thanks so much for uploading 👏🏻👏🏻👏🏻

Merci docteur de vous intéresser à ce qu'il nous arrive. C'est une situation difficile à vivre.

If we have an ME/CFS and FM association in America why are so many physicians ignorant about it. Why isn’t this in mandated CE credits?

It looks like, in recent research on ME/CFS and Long C*VID, that mitochondrial dysfunction affects a certain percentage of patients. Neuroinflammation is suggested in today's video, as a possible underlying cause of these conditions. One model of mitochondrial dysfunction shows excessive lactate production and ketogenesis. Meanwhile, keto diets and intermittent fasting have been suggested, and used with some success, for a few neurologic or brain disorders. Is it possible the body is trying to decrease the neuroinflammation in the brain by creating its own ketogenic system? Is mitochondrial dysfunction anti-inflammatory?

How closely related is Fibromyalgia and CFS? I've been diagnosed by three NHS Consultant Rheumatologists. I have had Chikungunya, Measles, persistent chest infections from flu's and cold's. Then in 2016 I developed Fibromyalgia. I am now 48 years old. Try my best to live well and as long as possible but I can no longer exercise.

Excellent presentation, thank you Dr Komaroff. I always enjoy your talks. One thing that surprised me was the comment that dyspnea was uncommon in ME/CFS. I (and everyone else I’ve spoken to with ME/CFS) quite regularly become short of breath. Because I’ve been ill for so long, I’m able to recognize that it is a result of pushing myself too far. Which can be simply having a discussion or walking to the bathroom. When I first became ill, I didn’t recognize that this could result in breathlessness, and thought there was no cause and therefor spontaneous. Could this be the same with long Covid?

29:08 I'm placing my bet on the liver, which might be overworked due to environment & food, it's the most logical place which connects reactivated EBV, low vitamine D & B12, thyroid issues and so forth

Thank you Dr. Anthony Komaroff!

If these abnormalities show up in scans why isn’t that used to diagnose the disease?

Is this all in research now?

MOLD EXPOSURE. For me, that was the issue. Took MANY years to confirm this. Best to all of you!

When is Ampligen going to be approved in United States. Many people including myself are suffering from chronic fatigue syndrome and feel like nothing is being done for us. We feel ignored

Medical help for ME/CFS - Dr. Svetlana Blitshteyn (Buffalo, York, Dysautonomia Clinic online) and Bateman-Horne Center (Utah). Not a cure, but several steps can help.