Article: Taking the Initiative: The Chronic Fatigue Initiative Takes Off
- Thread starter Phoenix Rising Team
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Well there's a much needed change of direction right there!
I agree with all the comments to date.
All I would add is that I hope they build on what I'm sure we all agree have been recent successes i.e. the superiority of the Canadian and International Consensus criteria and that test/retest exercise/stress challenge is essential for eliciting the abnormal responses that distinguish ME/CFS from other 'fatigue states'.
First they gather the 200 patient samples in the biobank - then Hornig and Lipkin will examine them first for known pathogens and then for novel viruses (I believe). The Pathogen and Epidemiology studies are the first projects. The Pathogen study should be finished at the latest in 18 months times. I talked to Peterson's office - they are in the process of identifying and describing in detail the patients whose samples they will deliver to the Biobank. I don't know if they are delivering samples yet.
The Science Review board will, over the next year, determine the other projects the CFI will take on.
The Epidemiology project could very well be underway now. I think that's a fascinating project because they ALREADY have blood samples taken from people from before they came down with MECFS and after. That's like a gold mine - all they have to do is test them to see what differences they find before and after.
For me, I would agree - I talked to Dr. Unger at the conference - even at the CDC exertion/stress tests are now required components of all their studies. Why not do that with pathogens? Who knows - maybe herpesviruses go bananas after exercise.....That would certainly fit Glazer's theory and other peoples observations.
My guess is that its not going to happen, though....For that to happen Peterson, Klimas, Montoya and Bateman would have to give the patients going into the Biobank an exercise test before they take their samples. That's a really good question to ask....I didn't even think of that.....I'll see if I can get an answer...
With regard to pathogens - the technology is so good and Lipkin is so good at it that my guess is that he can find almost anything.
I hope you're right, Cort. Keeping my fingers crossed.
What I don't understand is, if Lipkin finds Herpes viruses, or other viruses that have been associated with ME in the past, then what?
I'd like to have a deeper understanding of exactly what he's doing, so I can understand why his findings will be different to past findings.
I'm pretty sure that I read an article about it once, and it was very interesting, but my brain never retains any details!
Without knowing exactly what is planned there may still be the danger of assuming a single pathogen rather than a systemic pathology that allows viruses/bacteria or whatever to persist or remain latent/reactivate and perhaps replicate when the system is 'stressed' by exercise or other stressors.
Ove the years we have had many proposed pathogens that have however been found in only some patients or inconsistently or are so ubiquitous that they are assumed to be relatively harmless making it impossible to prove casuality. Despite this, the immune findings etc strongly suggest either a pathogen or disrupted immune response.
The current fuss over the use of the 5-AZA demythlating agent in the Science paper gels possibly showing reactivated HERVs rather than a gammaretrovirus reminds me that the Brigette Huber study is still ongoing. It also reminds me of RichVank's methylation block theory.
I would imagine that it might be logistically and financially impossible to ensure the blood draws are done after say exercise challenge to capture the possible effects of PEM (and at what time point, how many times etc?) but it would certainly be desirable and feasible to do a small pilot on a subset of patients. This could be prior to the pathogen programme (using the parallel approach I assume they will use) or if the pathogen work narrows it down to one or more suspects, exercise challenge might just show the mechanism by which say ubiquitous and assumedly benign (and different) agents might become less benign and cause the symptoms of ME/CFS regardless of the exact pathogen?
I suppose its reinventing the wheel but its a matter of bashing the authorities over the heads with it that it causes more then just a 6 week cause of mono fatigue. The science is already there it just has to be repeated again, ground hog day isnt, how many times has ebv, cmv, hhv6 been typed into this forum or any other cfs forum. Its starring them in the face but they just cant see it , lol. I didnt mention all the immune dysfunctions that have been noted since atleast the mid 1980s and probably prior to that as well.
cheers!!!
The thing that is different is that this is Lipkin and I imagine this is some of the best technology in the world. The herpesvirus findings have been mixed; if you add them all together they strongly suggest that when you use certain tests rates that rates of herpesvirus activation are strongly increased in CFS...but there's alot of disagreement about what are the right tests and what do the tests mean. According to the CDC guidelines, which are guidelines used by most of the medical community, (don't mean to pick on them) people with CFS don't have herpesvirus problems.
Montoya, Lerner, Peterson, etc. would argue differently. The point is that you really need a researcher like Lipkin to break things open - they won't listen to Lerner...they would listen to Montoya if he could publish a study showing that...but Lipkin would be ideal, I would think, because he's so connected.....If Lipkin says herpesviruses or whatever are found in 30% of people with ME/CFS my guess is that the NIH will start to fund studies to look at that.
So, in my opinion its a matter of it being the guy and the technology he uses (which has never been applied to ME/CFS before).
My guess is that you're right - that its a systemic pathology that allows some viruses or bacteria or maybe just inflammation to run amok. I suppose that Lipkin could find increased levels of pathogens relative to controls and that would say alot - that would mean an immune problem. Thanks for reminding of the Huber study - looking for increased levels of endogenous retroviruses....in that study we hope to find them
Retro rolleyes:). I think they could collect blood that way if they really wanted to....Peterson often has his patients do exercise stress tests - I think he does it once a year or so - he could just collect the blood then...I emailed them but haven't gotten a response yet.
'The point is lipkin', that doesnt mean much, i think they used similar wording for judy M and they managed to grind her into the ground, im sure they can do that to lipkin.
The thing that is different is that this is Lipkin and I imagine this is some of the best technology in the world. The herpesvirus findings have been mixed; if you add them all together they strongly suggest that when you use certain tests rates that rates of herpesvirus activation are strongly increased in CFS...but there's alot of disagreement about what are the right tests and what do the tests mean. According to the CDC guidelines, which are guidelines used by most of the medical community, (don't mean to pick on them) people with CFS don't have herpesvirus problems.
Montoya, Lerner, Peterson, etc. would argue differently. The point is that you really need a researcher like Lipkin to break things open - they won't listen to Lerner...they would listen to Montoya if he could publish a study showing that...but Lipkin would be ideal, I would think, because he's so connected.....If Lipkin says herpesviruses or whatever are found in 30% of people with ME/CFS my guess is that the NIH will start to fund studies to look at that.
So, in my opinion its a matter of it being the guy and the technology he uses (which has never been applied to ME/CFS before).
The thing that is different is that this is Lipkin and I imagine this is some of the best technology in the world. The herpesvirus findings have been mixed; if you add them all together they strongly suggest that when you use certain tests rates that rates of herpesvirus activation are strongly increased in CFS...but there's alot of disagreement about what are the right tests and what do the tests mean. According to the CDC guidelines, which are guidelines used by most of the medical community, (don't mean to pick on them) people with CFS don't have herpesvirus problems.
Montoya, Lerner, Peterson, etc. would argue differently. The point is that you really need a researcher like Lipkin to break things open - they won't listen to Lerner...they would listen to Montoya if he could publish a study showing that...but Lipkin would be ideal, I would think, because he's so connected.....If Lipkin says herpesviruses or whatever are found in 30% of people with ME/CFS my guess is that the NIH will start to fund studies to look at that.
So, in my opinion its a matter of it being the guy and the technology he uses (which has never been applied to ME/CFS before).
Yes, hopefully the Lipkin name will make a difference.
But from what I remember reading, I think the technology might be more significant.
I wish I could remember what I'd read, and where I'd read it, but I seem to remember that his work is going to be very complex indeed, with all sorts of fascinating technologies and techniques.
I also think I read something about teasing out latent viruses. (Or am I just being hopeful here?)
I'll have to have a hunt for that article, and I'll post it here if I find it.
Edit:
hmm, maybe it's all here:
http://forums.phoenixrising.me/show...y-looking-for-biomarkers-and-pathogens-in-CFS
With a full transcript here:
http://forums.phoenixrising.me/show...thogens-in-CFS&p=189657&viewfull=1#post189657
I'll have to read it again.
Edit 2:
Yes, the transcript of Lipkin's presentation is very interesting:
http://forums.phoenixrising.me/show...thogens-in-CFS&p=189657&viewfull=1#post189657
Is it not already clear there is an immune problem? I mean if people have a NKC Activity that is extremely low is that not make it absolutely clear there is Immunodeficiency going on?
What exactly is being tested with blood collection after exercise? Inflammation for many of us is already sky high without exercise. Personally, I think the low V02 max is interesting and meaningful but I wonder how important some of the other exercise testing is.
"Dr Mena also examined the effect of exercise on patients with CFS. Patients were given the standard cardiac stress test. While a normal person usually gets his wind back within five minutes after doing the test, those with CFS had to wait at least one hour before their levels of carbon dioxide returned to their pre-exercise levels. "There's a marked worsening of blood flow in both hemispheres, but mostly in the right hemisphere, and these abnormalities persist up to 24 hours", he said. After 24 hours, sometimes even 48 hours, patients' brain blood flow returned to where it was at normal activity level. "
http://fm-cfs.ca/CFS_spect_scans.html
I think what is happening now is that alot more money is finally going into cfs research that shoul,d have happened 30 years ago. The studies that did show immune dysfunction and infections etc werent done on a large scale and or were pushed aside for political reasons and ignorance as we all had yuppie flu and depression, which is why research in this field is so far behind the 8 ball. The authorities 30 years ago denied its existance and when proof of it started to come about, they ignored or tried to hide it to save their reputations. So 30 years on and those people who were worried about their reputations have mostly retired with their big pensions and really dont give a RATS about us now or then.
cheers!!!
cheers!!!
Was that study published? I don't recall seeing it (but my memory isn't completely reliable esp. for studies from the 1990s); also I did a quick search of pubmed and couldn't see it.
It was cited in Osler's Web. You can go to amazon or google books and do a search for 'mena' in the book.
Lipkin has a god-like reputation in virology as far as i can tell. they will listen to him a lot more than to Mikovits.
There was a good NY Times article on him. He has found hundreds of viruses. The article basically said he takes blood from the subjects and sequences all the genomes in it and then looks at the genomes that are present in the sick people and not the healthy people and this is where he finds his viruses. He has done this on salmon and other animals and for diseases with as few as three sufferers. It is shameful it has taken this long for us to get looked at, but I am very happy that Lipkin is looking and is funded!
Yes, immune system dysregulation is the cause of all these opportunistic infections just like in AIDS. What causes the dysregulation is the real question. It's either a pathogen(s) or new chemical interacting with vulnerable genetics. The best bet is a virus that causes lifelong disease- basically retroviruses, enteroviruses or it's sister cardioviruses. So it's vital to look for viruses and Lipkin is the best at it, so again this could well be a 'gamechanger.'
I am very happy the CFI is in the game. I am frustrated with all the talk of chronic fatigue, GET, CDC and "CFS" being a 'neuropsychiatric' disease. Any turn around expert or start up CEO knows that maximizing resources, efficiency and leverage are essential; so why don't they change these words that are so cheap and helpful to change. Their reason that they dropped 'syndrome' from "CFS" because it is a disease, not a 'syndrome' is ludicrous.
Thanks. Have the book here so looked at it. Still didn't find any reference I feel I could quote in academic circumstances unfortunately.
Well this certainly is an interesting and dare I say exciting venture. My career never took me into venture capital funds and I am quite interested to learn more about the financing of this project. I know it is billed as a philanthropic venture but $10 million is $10 million all the same. One wonders what returns are expected for that investment? I couldn't glean much from the website other than this wee bit about:
'Scott A. Carlson
Executive Director
Following almost ten years with a New York-based investment bank, Scott moved to Europe in 1992 and founded his own practice working with newly privatized companies. In 1994 Scott established the operations of the Western NIS Enterprise Fund, a $150 million private equity fund that invests in private companies operating in Ukraine and Moldova.
After working in Europe for over a decade, Scott returned to the United States and founded his own consulting practice to provide strategic, financial, operating and organizational advice to early-stage and under-performing companies. Scott became the executive director of the Chronic Fatigue Initiative in 2010. Scott is a graduate of Harvard Business School and Washington & Lee University.'
I am not implying anything 'untoward' is behind any of this, indeed I am rather reassured in a way that it is being run (I assume) as a business venture and (I hope) that it brings additional credibility to the project overall. This approach though is rather novel and not only for my condition. I doubt very much if it is a case of $10 million without any expected return. Just wondering what that return might be?
Anyway, great to have read more about this - thanks
'Scott A. Carlson
Executive Director
Following almost ten years with a New York-based investment bank, Scott moved to Europe in 1992 and founded his own practice working with newly privatized companies. In 1994 Scott established the operations of the Western NIS Enterprise Fund, a $150 million private equity fund that invests in private companies operating in Ukraine and Moldova.
After working in Europe for over a decade, Scott returned to the United States and founded his own consulting practice to provide strategic, financial, operating and organizational advice to early-stage and under-performing companies. Scott became the executive director of the Chronic Fatigue Initiative in 2010. Scott is a graduate of Harvard Business School and Washington & Lee University.'
I am not implying anything 'untoward' is behind any of this, indeed I am rather reassured in a way that it is being run (I assume) as a business venture and (I hope) that it brings additional credibility to the project overall. This approach though is rather novel and not only for my condition. I doubt very much if it is a case of $10 million without any expected return. Just wondering what that return might be?
Anyway, great to have read more about this - thanks
These things you try to promote are all at odds. The Coalition proposal
is in direct opposition to the ICC. And how would a chronic fatigue
initiative even apply, any more than any CFS fatigue research has
helped anyone with ME for the past 20+ years?
The coalition says that their intention was not to eliminate ME from
the ICD, this proposal would eliminate the diagnosis of ME in the US.
So the ICC will be for naught.
is in direct opposition to the ICC. And how would a chronic fatigue
initiative even apply, any more than any CFS fatigue research has
helped anyone with ME for the past 20+ years?
The coalition says that their intention was not to eliminate ME from
the ICD, this proposal would eliminate the diagnosis of ME in the US.
So the ICC will be for naught.