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

[@susanandres1518]

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?

[@rimacline2625]

Soul sisters. I feel your struggle... frustration... Pain... Nearly every sentence is intimately familiar. Finding others who can relate is at times the only thing that keeps me pushing forward. Wait, who am i kidding... Trying to push forward is more accurate ;)

[@Medicinewoman123]

Susan, I’m so sorry that you’re going through this! I’m a Nurse Practitioner who is also going the the same thing. I am still working part-time, but will soon be forced into full retirement due to my symptoms. My family is supportive, but my current primary provider has been dismissive of my symptoms and has treated me like I’m malingering or crazy, even though I’ve never asked her to put me out of work. Prior to the onset of this I was a very healthy, active person who rarely went to the doctor, other than for my regular health maintainable appointments. Just yesterday, the CDC released a report that over 3 millions American’s are now suffering from this. Hopefully, more research and information will educate people about this very real and horrible condition. Best of luck to you!!

[@keirfarnum6811]

“SeConDarY gAiN.” They never consider the primary loss that occurs with diseases like ME.

[@josegarcia9661]

It's the same presentation given by several professionals who offer no hope for this illness. It's nothing new for people who have CFS. It's just the same old observations

[@SS-mn7vl]

I'm also dealing with this! It hit me out of nowhere! Luckily for me my close friends and family literally will go with me to the many doctors I have seen over the last three years to vouch that I'm telling the truth and am now a fraction of the person I used to be! I have a million diagnosis and tried a ton of meds and just this past month started to feel better for like three weeks but right back into an episode last two days. It's horrible! What I have been doing for few months now is getting B12 shots every month, taking a huge dose of vitamin D once a week, and a ton of other stuff like DHEA, cinnamon complex, sea moss to name a few.

[@hopealways247]

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.

[@corinnastrouse7544]

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?

[@kristinae.7084]

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.

[@lush462]

Any treatments in foresight?

[@KittenCasserole]

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

[@gene2049]

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.

[@Gina-dn6xm]

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

[@MaMoGaia2024]

Thank you so so so much, Dr.Anthony made me understand better my health problems and also how to explain it to others who does not understand, and the information he presents it with a perfect bullet points , that is clearly explained without any unessacery info here and there. Thank you thank you

[@marie-cruzmartinez1696]

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

[@Dojayou]

We are on the North Shore Boston would love to meet with you to share information.

[@annalisette5897]

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?

[@josegarcia9661]

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

[@themupsmuppet]

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

[@BunnyTree]

My Vit B12 is in 2,000s. I feel better taking B12 sublingually but perhaps my body doesnt use it properly.

[@bell4textu973]

Thank you Dr. Anthony Komaroff!

[@piper4352]

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?

[@Renee933]

I’ve had ME/CFS for 38 years and dyspnea is a symptom for me. Better sometimes, worse others but ever present especially with exertion.

[@josegarcia9661]

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

[@Wisephoton]

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.

[@sarahberesford4724]

Same I have both as does my father but he better at 75 than me 44

[@Wisephoton]

Thank you for your response. I have just finished chemo, which made it worse but slowly recovering. Are you saying the symptoms lessened with time or that your father' condition was or is in partial or complete remission.

[@HilaryRouchy]

Is this all in research now?

[@bizonc]

We need a cure or true treatment. Please

[@kellio8087]

If overworked from a job and responsibilities along with overeating unhealthy food. Not getting enough sleep. Staying stressed. You are in unhealthy condition even if you don't notice symptoms. Once something overwhelming happens, the sick body can't handle it.

[@Zkbbkzzz]

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

[@SylviaDavis-e5u]

Are there hospitals for M.E. PATIENTS?

[@josegarcia9661]

Not one

[@Nazarenes]

Just a thought! Anti parasitic drugs may be worse trying, they seem to be working wonders with a whole host of conditions, worth discussing with healthcare providers

[@Medicinewoman123]

I am experience symptoms of ME/CFS. Are you or any of your colleagues seeing patients with these symptoms?

[@susancournoyer8387]

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.

[@lanceevans1689]

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

[@Joepipsquiggle]

SO WHERE IS THE CURE??? This video is not helping us

[@jewelleryaddict]

Agree been watching this doctor do his studies since 1985 when first diagnosed . Him and Dr Moldofsky both been working on this more then 30 years. I am running out of life years waiting for help.

[@Medicinewoman123]

Before doctors can begin to find a cure or treatment, they must first understand the pathophysiology of the disease. Doctors are not Gods or magicians.

[@Truerealism747]

​@@jewelleryaddictdo you have.much muscle pain with your cfs

[@davidkruse4030]

There is no cure. You need to start experimenting. Start with low dose naltrexone and other vitamins and supplements

[@lydiahubbell6278]

@@jewelleryaddictand my years are passing in 3x speed because i am unconscious and non-functional so much of the time.

[@deidreketchel]

Generational trauma certainly is a significantly contributing factor. 😢

[@sherylw4910]

Jeez too many ads. Lost interest.

[@nxva8726]

It's coming from the gut

[@TheMamaKitty98]

How do you know?

[@FionaEm]

Yes, the gut is involved, but ME/CFS is multi-systemic. That's why it's so intractable.

[@mihakavcic7237]

@@TheMamaKitty98 Because all systems are involved so yes it's the gut too. 😊

[@sarahberesford4724]

And related t autism adhd

[@Dteshome85]

Let's talk about Mold and 1985 tahoe outbreakIt was well documented that staxhybotrys Chathurum was found in the teachers lounge .Me/cfs researchers may want to look into the last to better understand the future Thank You

[@MP-uo6qd]

Lots of things can trigger ME/CFS including viruses, chemical poisoning and so probably your stahb otrys did too but we don't know what causes CFS.

[@sarahberesford4724]

Autism adhd hypomobilty