Given the resources Lipkin thinks ME/CFS can be solved in three to five years
Ian Lipkin swept into Lake Tahoe in December to support his work with the Simmaron Research Foundation. He talked about pathogen discovery, his career, the threats pathogens play to humanity, his ME/CFS findings, and then dropped a stunner:
“Three to five years” he said, “to solve ME/CFS”.
All we need is the resources, Lipkin said. Plus, guess which disease is on the great virus hunter’s bucket list? It was all very encouraging. Find out more in
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When you refer to ““X” and “Y” metabolites” are they labeled as such because the specifics are embargoed, or is this some kind of classification system, and if it is, will you please explain it?
When you say, “That finding surely left a big smile on Lipkin’s and Hornig’s faces. Earlier they’d found evidence of a profound reduction in immune functioning in the blood of later-duration ME/CFS patients. Now a similar reduction was showing up in their spinal fluid.”, was the blood and spinal fluid from the same exact patients, or from a similar group of patients?
The specific substances are embargoed. One of them is fascinating. It points to a very different approach to ME/CFS – one that has some basis in prior studies – but is hardly ever mentioned. If it holds up I think it could be a really major finding.
If it’s the study discussed in the article below, the spinal fluid study looked at only long-duration patients, whereas the earlier study looked at both short and long-term patients. I think the spinal fluid study patients were sorted by Dr. Peterson’s illness subsets, if I have it correct.I don’t know if the long-term patients used in both studies were the same group or different.
I think professor Lipkin is too optimistic. I don’t believe he will find the key for ME/CFS. It is impossible because ME/CFS is not one disease. I have heard many times (last 20 years) that something was found and every time it didn’t change anything. I will believe it when ME/CFS is accepted as a real disease by the medical community only than he has found realy something. But i guess that is not the case!
I believe that (with rigid enough diagnostic criteria,some sets aren’t specific enough) ME/CFS refers to one specific disease state or loop of dysfunction that our bodies get locked into even though it can be triggered seemingly by double digits of different viruses,physiological stresses and genetic predispositions (methylation related genes, Ehlers Danlos Syndrome etc) . I say this because studies find X kind of neuroinflammation, Y kind of muscle problem and Z immune issue in a majority of CFS patients they study to name a few key examples.
then look at the successes with Rituximab, its having a dramatic effect on a majority of patients even though the protocol is still largely adapted from what was used to treat lymphoma and we have no idea about the ideal speed of B-cell depletion vs our capacity to create new cells to inform the best Ritux dose to infuse and how frequently to do so or for how long to continue these infusions in a treatment cycle. if we see a subsequent Ritux trial result where 70+% of patients benefitted I will then be totally sold on this being one disease despite many causes and lots of different combinations of severity of symptoms like some people unable to read two paragraphs but able to walk a mile VS patients unable to walk a couple of hundred metres but able to write a novel.
I’ll believe it when I see it. Getting all emotional about anything costs me days of aftereffects, just as exercise does. I deliberately blunt my emotions because the body takes so long to process the adrenaline metabolites. That’s part of CFS. You can’t even have a good cry without paying for it.
And even if they find a cause AND a cure, think of all the collateral damage – physical, mental, and educational – to us long-term patients? clients? sufferers? victims? Hard to know what word to use when your whole life is turned upside down. That will take years, and for many, not be feasible.
But it would be great to be the last CFS generation, wouldn’t it?
Indeed it would. I think it’s good to acknowledge that it
‘s good to hear a respected researcher like Ian Lipkin saying something like – and good to temper one’s enthusiasm a bit knowing that the body is very complex…
I will say, though, that one of Lipkin’s embargoed results is just fascinating…
I hope Lipkin is right (he is a respected researcher) but i have heard this many times before in the last 20 years. These findings never hold up in a heterogenetic disease. But it gives a little hope. I wait and see, maybe i am to negative, Sorry. I think you know more then you can say Cort 🙂 I always admire your optimism.
The representatives of the House of Representatives must use their power to get the NIH to fund bigger bucks and we need to put a fire under their asses to make this happen. I believe Dr. Ian Lipkin can solve ME/CFS within five years and if he had the funding he could do it in three. Please reach out to your representative. ME/CFS patients lives matter!
In your opinion will this metabolite finding lead to treatment options?
Also do you think this is a big lead that will open up our understanding of this disease?
we have some serious teams working on 1. treatments that appear to be working (rituximab) 2. solving how the illness begins and then progresses and 3. finding biomarkers.
any success in one of these will benefit the other. i think this is our decade folks.
It would be nice to have a decade :). Let’s hope this is it. Hopefully Collins will dredge some good money out of the $2 billion extra he got for next year.
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Hi Cort,
When you refer to ““X” and “Y” metabolites” are they labeled as such because the specifics are embargoed, or is this some kind of classification system, and if it is, will you please explain it?
When you say, “That finding surely left a big smile on Lipkin’s and Hornig’s faces. Earlier they’d found evidence of a profound reduction in immune functioning in the blood of later-duration ME/CFS patients. Now a similar reduction was showing up in their spinal fluid.”, was the blood and spinal fluid from the same exact patients, or from a similar group of patients?
To quote Mackelmore, “This is f*#+ing awesome!”
Thank you, Cort!
The specific substances are embargoed. One of them is fascinating. It points to a very different approach to ME/CFS – one that has some basis in prior studies – but is hardly ever mentioned. If it holds up I think it could be a really major finding.
If it’s the study discussed in the article below, the spinal fluid study looked at only long-duration patients, whereas the earlier study looked at both short and long-term patients. I think the spinal fluid study patients were sorted by Dr. Peterson’s illness subsets, if I have it correct.I don’t know if the long-term patients used in both studies were the same group or different.
http://simmaronresearch.com/2015/09/tea-time-at-simmaron-i-mady-hornig-on-the-peterson-subsets-immune-exhaustion-and-new-gut-findings-in-mecfs/
I think professor Lipkin is too optimistic. I don’t believe he will find the key for ME/CFS. It is impossible because ME/CFS is not one disease. I have heard many times (last 20 years) that something was found and every time it didn’t change anything. I will believe it when ME/CFS is accepted as a real disease by the medical community only than he has found realy something. But i guess that is not the case!
I believe that (with rigid enough diagnostic criteria,some sets aren’t specific enough) ME/CFS refers to one specific disease state or loop of dysfunction that our bodies get locked into even though it can be triggered seemingly by double digits of different viruses,physiological stresses and genetic predispositions (methylation related genes, Ehlers Danlos Syndrome etc) . I say this because studies find X kind of neuroinflammation, Y kind of muscle problem and Z immune issue in a majority of CFS patients they study to name a few key examples.
then look at the successes with Rituximab, its having a dramatic effect on a majority of patients even though the protocol is still largely adapted from what was used to treat lymphoma and we have no idea about the ideal speed of B-cell depletion vs our capacity to create new cells to inform the best Ritux dose to infuse and how frequently to do so or for how long to continue these infusions in a treatment cycle. if we see a subsequent Ritux trial result where 70+% of patients benefitted I will then be totally sold on this being one disease despite many causes and lots of different combinations of severity of symptoms like some people unable to read two paragraphs but able to walk a mile VS patients unable to walk a couple of hundred metres but able to write a novel.
I’ll believe it when I see it. Getting all emotional about anything costs me days of aftereffects, just as exercise does. I deliberately blunt my emotions because the body takes so long to process the adrenaline metabolites. That’s part of CFS. You can’t even have a good cry without paying for it.
And even if they find a cause AND a cure, think of all the collateral damage – physical, mental, and educational – to us long-term patients? clients? sufferers? victims? Hard to know what word to use when your whole life is turned upside down. That will take years, and for many, not be feasible.
But it would be great to be the last CFS generation, wouldn’t it?
Indeed it would. I think it’s good to acknowledge that it
‘s good to hear a respected researcher like Ian Lipkin saying something like – and good to temper one’s enthusiasm a bit knowing that the body is very complex…
I will say, though, that one of Lipkin’s embargoed results is just fascinating…
I hope Lipkin is right (he is a respected researcher) but i have heard this many times before in the last 20 years. These findings never hold up in a heterogenetic disease. But it gives a little hope. I wait and see, maybe i am to negative, Sorry. I think you know more then you can say Cort 🙂 I always admire your optimism.
When will the embargo be lifted?
I assume when the paper is published – hopefully in the not too distant future.
The representatives of the House of Representatives must use their power to get the NIH to fund bigger bucks and we need to put a fire under their asses to make this happen. I believe Dr. Ian Lipkin can solve ME/CFS within five years and if he had the funding he could do it in three. Please reach out to your representative. ME/CFS patients lives matter!
Hi Cort,
In your opinion will this metabolite finding lead to treatment options?
Also do you think this is a big lead that will open up our understanding of this disease?
Thanks,
Scott
we have some serious teams working on 1. treatments that appear to be working (rituximab) 2. solving how the illness begins and then progresses and 3. finding biomarkers.
any success in one of these will benefit the other. i think this is our decade folks.
It would be nice to have a decade :). Let’s hope this is it. Hopefully Collins will dredge some good money out of the $2 billion extra he got for next year.