Anthony Komaroff research presentation (video) for MassME 2022 annual meeting

lenora

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Thanks @Consul. I really wish we could get some support groups going here in TX. Heaven knows we've tried many times.

Is it the size of the state? People are too ill? Meeting places? I really don't know, but do know that I've totally given up on it. I've been asked to lead other groups, but for most of us the evenings are out and at this age, I'm just plain tired.

This has taken place in Houston, Dallas and other far reaching areas. I don't know if Long Haul has made a difference or not. People say they'll attend, and then don't show up. While I'm sure other states have their problems, ours do seem especially bad.

I now help on a 1 to 1 basis with surgeries (for other illnesses I have). It should be noted that most undergoing surgery seem to end up with ME. Whether it started before or after, I don't know....in my case, I'd say it started before. It's hard to do a scientific approach and I have tremendous respect for those who can accomplish this endeavour. I should stop talking to people now since most of the good places and surgeons I knew have since retired or died. I won't help someone, unless I'm sure of the advice I'm giving. Yours, Lenora
 
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I really wish we could get some support groups going here in TX.
there seems to be a phone call in my state- maybe its once a month. But its around 7 pm: I am not operational at that time. I should try to call in sometime, none the less, see what goes on there....
 

Diwi9

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There are some concerning statements Dr. Komaroff makes in this interview, especially around exercise. No ME/cfs specialist should be discussing a patient trying exercise without mentioning careful heart rate monitoring, something any doctor trained to deal with ME/cfs *must* be trained on. Until regular doctors are trained in this, not one should ever mention exercise to a ME/cfs patient. I have paid out-of-pocket for three expensive ME/cfs specialists. Not one taught me how to use heart rate monitoring, they may mention wearing a monitor, but they don't teach you how to use it, how to track, how to check your status upon waking. Thankfully other patients online discuss how to do this and it has been enormously helpful.

Also, there are different phases of ME/cfs and people have to reach a certain baseline of stability before any sort of exercise can be attempted, and when relapse occurs, attempts to exercise need to cease. Until a certain baseline is reached (something we cannot clinically define, but most patients can "feel" when they are able to do more), the only discussion should be about prioritizing exertion to Activities of Daily Living. This is imperative. It doesn't matter if a patient is able to spend 10 minutes on a stationary bike if they are then reduced to a week in bed without showering. This is especially concerning in that so many patients do not qualify for support services and are living in vulnerable conditions. I find these sorts of coy discussions about gently encouraging patients to exercise haughty when the doctors are not discussing the shocking levels of debilitation and neglect many patients experience. I noticed one of his slides discussed "exercise intolerance." ME/cfs is about "exertion intolerance." It's pretty challenging to have the medical community properly informed when experts obfuscate the nature of the condition by using inappropriate language...but then Komaroff helped coin the term "Chronic Fatigue Syndrome" so this seems to be an ongoing problem with him.

I appreciate parts of the theory he is discussing here about neurons being dedicated to "sickness behavior." However, this is another term that is frequently misconstrued as others hear it to mean our situation is behavioral, a.k.a. a choice, when the term means something else. If his theory is correct, then we are discussing a major signaling interface that controls and commands multiple bodily symptoms, because the experience of PEM is not merely one of a patient being tired and needing to rest up like with the flu. Flu-like sensations are only part of a kaleidoscope of symptoms I never experienced when I've had the flu...and mere exertion can impact many systems.
 

BrightCandle

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The Neurons for sickness behaviour suggests to me he is talking FND, Functional Neurological disorder which falls under functional medicine. Its got no evidence supporting it and after the destruction of the biophysicalsocial model this is where all the BPS supporting "researchers" have been heading, to another name for the same thing for which they continue to have no evidence for which exercise and psychotherapy is once again the cure, again with no evidence.
 

Diwi9

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The Neurons for sickness behaviour suggests to me he is talking FND, Functional Neurological disorder which falls under functional medicine. Its got no evidence supporting it and after the destruction of the biophysicalsocial model this is where all the BPS supporting "researchers" have been heading, to another name for the same thing for which they continue to have no evidence for which exercise and psychotherapy is once again the cure, again with no evidence.
Thank you for that clarification, he does seem to be tiptoeing a nuanced line.