ME/CFS Alert Episode 85: Dr Anthony Komaroff on ME/CFS treatment and research

[Sasha]

Another one that seems to have slipped out without fanfare:

 

[actup]

This interview made me feel sad and angry for several reasons.

Dr Komaroff would like to see the NIH provide two to three times more funding than for 2016 over the next five years. They'll probably waste that much just on the current NIH study with the bps crowd mostly in charge. At that funding rate his expectation below makes perfect sense.

Dr Komaroff expects some good diagnostic tests within 20 yrs but no cure. My granddaughter has been developing me/cfs symptoms since hitting adolescence. I can't bear to think that all she will have by her mid thirties is confirmation that she really is sick. Ditto for my 30 yr old son w this hellish illness.

Last of all Dr Komaroff appears to be an apologist for the NIH. He seems to suggest they're doing a lot to help the me/cfs community so be patient. What else have we been for the past 25-30 yrs but patient.


WTF!!! ( for some strange reason I swear much more than I did pre -illness or so my kids tell me). Dr Komaroff has a stellar reputation as a me/cfs clinician and researcher and I appreciate his many efforts on behalf of the me/cfs community. I just wish he'd call the NIH funding for this disease what it is -piddly. No -micro piddly.

 

[Forbin]

Actually, Dr. Komaroff, does not say that there won't be a cure in 20 years. He says that they don't know enough yet to make an estimate. In addition to diagnostic tests, he says that he's optimistic that there will be treatments that definitely improve symptoms within 20 years. In this context, "twenty years" is more like the outside range as opposed to an estimate of how long it will take.

Things could happen much more quickly if a potentially "curable" cause is discovered. This is the kind of discovery we may be seeing with autoimmunity and Rituximab. There are other potentially "curable" sources of the illness as well, such as an altered microbiome that promotes some kind of chronic immune activity. Finding something like this would be akin to the kind of "home run" that Barry Marshal and Robin Warren hit when they linked h. pylori to peptic ulcers. It's rare, but it does happen.

Also, I would not discount the value of developing treatments while searching for a cure. There are many diseases that they've been working on for more than twenty years and that they have literally spent billions on which still have no "cure." Still, treatments have been developed that can manage some of those illnesses. HIV infection is one obvious example. Likewise, there are several treatments for relapsing-remitting MS, but still no outright cure.

LEWELLYN KING: "Do you have hope that, in your lifetime, you'll see a cure for this disease? A therapy?"

ANTHONY KOMAROFF: "Part of my answer depends on how long I think I'm going to be alive. But if I were going to be alive another 20 years, yeah, I think that I would be optimistic we're going to see very good diagnostic tests developed and treatments that definitely improve symptoms.

"'Curative' treatments? I'm not prepared to say that yet because we need to understand what this illness is better before we can have a view as to how easy it would be to cure it."

 

[TrixieStix]

a

Actually, Dr. Komaroff, does not say that there won't be a cure in 20 years. He says that they don't know enough yet to make an estimate. In addition to diagnostic tests, he says that he's optimistic that there will be treatments that definitely improve symptoms within 20 years. In this context, "twenty years" is more like the outside range as opposed to an estimate of how long it will take.

Things could happen much more quickly if a potentially "curable" cause is discovered. This is the kind of discovery we may be seeing with autoimmunity and Rituximab. There are other potentially "curable" sources of the illness as well, such as an altered microbiome that promotes some kind of chronic immune activity. Finding something like this would be akin to the kind of "home run" that Barry Marshal and Robin Warren hit when they linked h. pylori to peptic ulcers. It's rare, but it does happen.

Also, I would not discount the value of developing treatments while searching for a cure. There are many diseases that they've been working on for more than twenty years and that they have literally spent billions on which still have no "cure." Still, treatments have been developed that can manage some of those illnesses. HIV infection is one obvious example. Likewise, there are several treatments for relapsing-remitting MS, but still no outright cure.

And you don't need to know the exact cause of a disease to treat it. The cause of MS is still unknown yet they have very effective treatments now for it.