Transcript of exchange on ME/CFS between NINDS Director Dr Koroshetz.& Dr Lipkin at recent meeting

[heapsreal]

What even are you accusing him of now, because I can't make sense of this?

Im accussing him of doing nothing absolutely nothing even though he said 20yrs ago that cfs is a real disease.

If he is the almighty when it comes to solving cfsme, why hasnt he pursued more research dollars into cfsme. He's had the time. Maybe his bum rash was too severe for him and has had to put any research on hold.

 

[AndyPR]

Haha.
Im sure he thinks he does. Maybe why he doesnt persue it as he knows it false illness beliefs. Or like my previous post has said, probably be the end of his research career. He would then be left to charge people a fortune for iv vitamin infusions.

Oh man, you and I obviously live in completely different universes. So, in your universe, obviously none of the work below happened? And his involvement with the Advisory Committee to the NIH Director, where we he can be seen advocating for more ME research funds didn't happen?

https://www.mailman.columbia.edu/pu...fatigue-syndrome-linked-imbalanced-microbiome
https://www.mailman.columbia.edu/pu...al-evidence-atypical-chronic-fatigue-syndrome
https://www.mailman.columbia.edu/pu...-evidence-chronic-fatigue-syndrome-biological
https://www.mailman.columbia.edu/pu...ognitive-dysfunction-chronic-fatigue-syndrome

And Columbia University's application to be NIH Collaborative ME Research Center isn't happening either?

 

[AndyPR]

Im accussing him of doing nothing absolutely nothing even though he said 20yrs ago that cfs is a real disease.

If he is the almighty when it comes to solving cfsme, why hasnt he pursued more research dollars into cfsme. He's had the time. Maybe his bum rash was too severe for him and has had to put any research on hold.

Absolutely nothing involves research apparently. Absolutely nothing involves sitting on committees pushing for more money apparently. Absolutely nothing involves applying an application for CII to be a NIH Collaborative ME Research Center apparently. I'm glad that we've figured out that "absolutely nothing" actually means he's actually been doing something.

Nope, I've never described him as "the almighty". In fact, you're the one who has come closest to that by demanding that he single-handedly solve ME, and then blaming him for not doing so.

 

[heapsreal]

Oh man, you and I obviously live in completely different universes. So, in your universe, obviously none of the work below happened? And his involvement with the Advisory Committee to the NIH Director, where we he can be seen advocating for more ME research funds didn't happen?

https://www.mailman.columbia.edu/pu...fatigue-syndrome-linked-imbalanced-microbiome
https://www.mailman.columbia.edu/pu...al-evidence-atypical-chronic-fatigue-syndrome
https://www.mailman.columbia.edu/pu...-evidence-chronic-fatigue-syndrome-biological
https://www.mailman.columbia.edu/pu...ognitive-dysfunction-chronic-fatigue-syndrome

And Columbia University's application to be NIH Collaborative ME Research Center isn't happening either?

Good luck if he finds the answer. But the amount of money into cfsme research is minuscule compared to most other diseases.

You can find plenty of utube videos and posts etc going back from the late 1980s all the way to today where they say research isnt far away from solving cfsme. They always seem to add, if we can just get more money towards research.

Those from the Royal Free outbreak in the 1950s were probably told the same thing. But they have been and gone.

I wouldnt be holding my breath.

Cfsme just isnt high on the agenda of funding compared to other diseases.

 

[heapsreal]

In fact, you're the one who has come closest to that by demanding that he single-handedly solve ME, and then blaming him for not doing so.

Far from expecting him singlehandedly solve ME. I think he's just the govts go to man to put a lid on things . I dont think the government wants to spend more money on treating a significant amount of patients. I also wouldn't be suprised if theres some sort of cover up.

 

[AndyPR]

Good luck if he finds the answer. But the amount of money into cfsme research is minuscule compared to most other diseases.

You can find plenty of utube videos and posts etc going back from the late 1980s all the way to today where they say research isnt far away from solving cfsme. They always seem to add, if we can just get more money towards research.

Those from the Royal Free outbreak in the 1950s were probably told the same thing. But they have been and gone.

I wouldnt be holding my breath.

Cfsme just isnt high on the agenda of funding compared to other diseases.

So, you're saying that we need more money into ME research - I couldn't agree more with you.

But you then complain that researchers have been saying for years that they need more money for research? They certainly won't cure ME without funding, Ron Davis himself has said this.

Yep, ME isn't high in the agenda, which is why it's valuable to have somebody as respected in the scientific community as Lipkin being on that Committee, pushing for more research money.

 

[AndyPR]

Far from expecting him singlehandedly solve ME. I think he's just the govts go to man to put a lid on things . I dont think the government wants to spend more money on treating a significant amount of patients. I also wouldn't be suprised if theres some sort of cover up.

Well you've spent a number of your posts on blaming him for not solving it. But now he's meant to be covering it all up, you know, by advocating for more funding and by researching it, discovering more information about what is going on with us. That's really high level covering up I reckon - in advancing ME science it's actually a big conspiracy to stop people taking it seriously...

 

[heapsreal]

Well you've spent a number of your posts on blaming him for not solving it. But now he's meant to be covering it all up, you know, by advocating for more funding and by researching it, discovering more information about what is going on with us. That's really high level covering up I reckon - in advancing ME science it's actually a big conspiracy to stop people taking it seriously...

Whatever.
See where things are in 10 years. If we compare it to the last 10 yrs it wont be far.

 

[AndyPR]

Whatever.
See where things are in 10 years. If we compare it to the last 10 yrs it wont be far.

I'm genuinely sorry that you feel that way. With the advances in our understanding that we've seen recently from the likes of Davis, Fluge & Mella, Lipkin & Hornig and others, I look to the future with far more optimism.

 

[msf]

Maybe he's much smarter than we realize. Past history shows many high profile researchers and doctors who have dipped their toe into cfs research dont last long and is usually career ending.

Either people are smeared professionally or slowly realise that slowly all their funding disappears and they are isolated into the quack area of medicine.

I´m confused, has he been in the field for 20 years or has he just dipped his toe in it?

 

[msf]

Yes, I also hope you are wrong, Heapsreal, and that they are getting close to the root of the disease. From everything I have read/experienced, that is how it seems to me, at least.

 

[heapsreal]

Yes, I also hope you are wrong, Heapsreal, and that they are getting close to the root of the disease. From everything I have read/experienced, that is how it seems to me, at least.

Some money in research is better than nothing but i think it needs millions over a few years to sort it out because i dont think the answer will be straight forward.

A couple of million sounds great to us but in reality they raise that sort of money at soccer games or baseball or cricket games where they do fund raisers for breast cancer etc which is chicken feed compared to what the government throws in. This is over many years and yet they still dont have all the answers but its improving slowly over the years.

So i compare the above to whats going on in cfsme. Plus theres still a battle of cfsme being legitimate. Maybe they can fluke a treatment which helps a large group, or maybe they have like ampligen but have to overcome the yuppy flu stigma first.

Maybe im being negative or just realistic. I also have a bias towards a retroviral cause as i have been helped with antiretroviral meds. I also think its possible that arvs could be helping in some other way??

I also think there are many researchers who are constantly looked over. Dr Chia is a good example as no one can prove he is right or wrong and original work in ME outbreaks considered it highly probable that enteroviruses play a major role yet little research money has be spent in this area. I think in the late 1970s uk researchers were making headway then the likes of Wessely stood in which grinded things to a halt.

I still believe a retroviral cause suits cfsme better as it can explain the many co infections that people get. Other than the xmrv scandal, not much has really gone into it. Disproving xmrv all it did was just that but didnt disprove other retroviral infections. Being in contact with several people and some drs who have used arvs, i thinks it worth looking at also.

I will continue to say it but low nk function leaves people open to reactivated infections. This just gets ignored yet if you were born with low nk numbers you would be classed as having a nk immune defiency disease and treated with appropriate antivirals and antibiotics to treat co infections. But in adults with cfs nk cells fighting ability mean nothing??????

Whats causing this low nk function in cfsme?? I think its been asked for a few decades now but without an answer. Answering this question i think could lead to some big finding. At a minimum people could then get treated for reactivated viruses, which drs are told only occur in immune compromised patient such as hiv, hepatitis or organ transplant patients. Maybe cfsme should be put on this list.

I think theres research already done since the late 1980s that needs further properly funded research on a larger scale. What about autopsies? How many cfsme people have died in the last 20yrs. Can cut me to pieces when i kick the bucket.

I just get the impression they dont want to find anything.

 

[Forbin]

Well, I searched the entire transcript (the caption file) of the 3.5 hour meeting and Ian Lipkin was the only person to bring up ME/CFS in the question and answer session. In fact, he jumped in to ask the first question and used it to point out that $6 million spread out over four centers was not really enough to do the science necessary. He asked if it could be increased. This prompted Dr. Koroshetz to say that it probably should be closer to 20 times ($120 million) what it currently is. This all goes on in front of Francis Collins in a public meeting. I don't know if this will be effective, but I do know that if you want to get something, you've got to ask for it. Doing so in a public way like this could give Dr. Collins the "justification" to grow the ME/CFS budget. After all, an increase for ME/CFS was suggested in a meeting of his 15 top advisers. Heck, the Director of the National Institute of Neurological Disorders and Stroke said in the same meeting that the ME/CFS budget should be 20 times larger. Perhaps Collins or someone else can report that "finding" before Congress.

Oh, sure - call me an optimist.

Following Dr. Lipkin, the next question came from Dr. Elba Serrano of New Mexico University, who said that, in her town, people were reaching out to her with "urgency" and "a hunger to know what is going on" in Parkinsons, Alzheimers and Hydrocephaly. Dr. Serrano is a professor of biology with background in neuroscience and is the Principal Investigator and Program Director of NMSU's NIH funded BP-ENDURE Building Research Achievement in Neuroscience (BRAiN) and Research Initiative for Scientific Enhancement (RISE) student training programs.

I mention this because I think it suggests that meetings like this are where the NIH Director's advisers get to make a face to face case for greater attention to be paid to a patient constituency that they are interested in.

I think we may not fully realize how lucky we are that one of the 15 advisers with access to Dr. Collins is interested in ME/CFS.

 

[heapsreal]

I´m confused, has he been in the field for 20 years or has he just dipped his toe in it?

Theres a utube clip where he says it a real disease or immune disease something like that. It was mid 1990s when they brought him in to sort something else out, i cant recall maybe hhv6?? Or defreitus retrovirus. I cant recall his exact involvement but hasnt been seen in cfs until xmrv came about. Shows how serious it is to him to leave it that long.

I will try and dig it up.

 

[Esther12]

I'm pretty sceptical about a lot of CFS research, but I don't blame Lipkin for the situation we're in. It seems pretty clear that we'd be in a better place if more influential researchers had taken his position. Sadly they haven't. Didn't he put $200,000 of his own money into a CFS study he couldn't get funding for? It's not millions, but it is a decent chunk of change.

Putting the Hornig issues to the side for now (just because it's impossible to know exactly what happened there, although there are reasons for concern), I think Lipkin's involvement in CFS research has been great for us, even if he'd admit he's not been able to get the funding which is needed to make the sort of prgress we all want.

 

[msf]

Theres a utube clip where he says it a real disease or immune disease something like that. It was mid 1990s when they brought him in to sort something else out, i cant recall maybe hhv6?? Or defreitus retrovirus. I cant recall his exact involvement but hasnt been seen in cfs until xmrv came about. Shows how serious it is to him to leave it that long.

I will try and dig it up.

Not my memory of it. I thought it was around 2010 when he got involved with the XMRV stuff.

 

[msf]

Some money in research is better than nothing but i think it needs millions over a few years to sort it out because i dont think the answer will be straight forward.

A couple of million sounds great to us but in reality they raise that sort of money at soccer games or baseball or cricket games where they do fund raisers for breast cancer etc which is chicken feed compared to what the government throws in. This is over many years and yet they still dont have all the answers but its improving slowly over the years.

So i compare the above to whats going on in cfsme. Plus theres still a battle of cfsme being legitimate. Maybe they can fluke a treatment which helps a large group, or maybe they have like ampligen but have to overcome the yuppy flu stigma first.

Maybe im being negative or just realistic. I also have a bias towards a retroviral cause as i have been helped with antiretroviral meds. I also think its possible that arvs could be helping in some other way??

I also think there are many researchers who are constantly looked over. Dr Chia is a good example as no one can prove he is right or wrong and original work in ME outbreaks considered it highly probable that enteroviruses play a major role yet little research money has be spent in this area. I think in the late 1970s uk researchers were making headway then the likes of Wessely stood in which grinded things to a halt.

I still believe a retroviral cause suits cfsme better as it can explain the many co infections that people get. Other than the xmrv scandal, not much has really gone into it. Disproving xmrv all it did was just that but didnt disprove other retroviral infections. Being in contact with several people and some drs who have used arvs, i thinks it worth looking at also.

I will continue to say it but low nk function leaves people open to reactivated infections. This just gets ignored yet if you were born with low nk numbers you would be classed as having a nk immune defiency disease and treated with appropriate antivirals and antibiotics to treat co infections. But in adults with cfs nk cells fighting ability mean nothing??????

Whats causing this low nk function in cfsme?? I think its been asked for a few decades now but without an answer. Answering this question i think could lead to some big finding. At a minimum people could then get treated for reactivated viruses, which drs are told only occur in immune compromised patient such as hiv, hepatitis or organ transplant patients. Maybe cfsme should be put on this list.

I think theres research already done since the late 1980s that needs further properly funded research on a larger scale. What about autopsies? How many cfsme people have died in the last 20yrs. Can cut me to pieces when i kick the bucket.

I just get the impression they dont want to find anything.

Well, I don´t get that impression, and for better or worse, enterovirus as a cause of ME isn´t very fashionable these days. In fact, I would say Chia is the only doctor who thinks that, so either he is a visionary or he is behind the times.

 

[RogerBlack]

Funding and time isn't all of it.
If, for example, type I diabetes wasn't a common condition, and you had a handful of patients with it, you could work out the mechanism with several hundred dollars worth of tests, and several standard biochemistry textbooks.

CFS, unfortunately has a mechanism which seems to involve lots of poorly understood parts of the body working together. Further, there are no simple tests for it.

We obviously don't know what insights might lead to a cure, but there are some hard dates.
For example, if Rituximab turns out as well as hoped in a subset of patients, that couldn't have happened before some years after it was invented. (1997+)
If the microbiome is the key, it couldn't have happened much before 2008, as the technology wasn't available.
Some investigative techniques that have been used are even newer.

Unless it turns out that there is a simple theraputic that happens to work without deep understanding (rituximab), in order to understand a disease, you need to know how the mechanism of the disease works. How much time and money this will take depends on how complex the disease is, and the available tests.

Just throwing money at something doesn't fix it. For example, HIV, many billions have been spent trying to come up with a cure, rather than a treatment, and that is 'just' a virus with a well understood mechanism comparative to CFS.

Having said that, even with no idea whatsoever about mechanism, useful research that has not been done, could have been, relatively inexpensively.
For example, longitudinal monitoring (at least weekly) of a cohort of CFS patients.

 

[heapsreal]

Not my memory of it. I thought it was around 2010 when he got involved with the XMRV stuff.

1999 borna virus in cfs, from a quick google. Im sure something earlier also.

 

[msf]

I´d forgotten that. I don´t see why that should be held against him though.