Article: Taking the Initiative: The Chronic Fatigue Initiative Takes Off

You can view the page at http://forums.phoenixrising.me/content.php?487-Taking-the-Initiative-The-Chronic-Fatigue-Initiative-Takes-Off-CFS-MECFS-Research

 

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

I have seen nothing to suggest that this is anything other than philanthropy.
One probably doesnt see this sort of large scale philanthropy in the British Isles as much as in the US so it might seem a bit unusual but I have seen nothing to suggest anything untoward and I think it would be a pity if other possible philanthropists might be put off (or this family put off giving more money) if this line of questioning was followed too much.

I cant find the quote at the moment but what I believe they mean by venture philanthropy is that the money will lead on to larger funders, either larger foundations or government bodies, spending more money following the findings that the money (say $10m) they invest will not just bring $10m to research, but a larger sum because of more money being brought to the field. In the same way, the CAA points out that by funding pilot studies, their money has led to researchers getting bigger grants e.g. $1m grant for the Lights recently.

It is a pity if somebody can't accept that somebody could donate for altruistic reasons. Cynicism can damage good will in society I think. When Bill Gates gives money to find vaccines for malaria or whatever the Gates Foundation does these days, I think the purpose is to find a cure for malaria. Lots of other examples could be given.

I think the way they are spending money wouldn't be a great way to earn money. And of course, not that I'm convinced it is to do with pharmaceutical companies but even if it did lead to drugs that could be offered, this is what I'd like rather than the situation at the moment where a lot of countries only offer non-pharmacological approaches as part of the system of care for the illness. Having been severely affected for 17 years, I don't think non-pharmacological approaches, esp. the rehab ones, are going to cure me.

 

Thanks. Have the book here so looked at it. Still didn't find any reference I feel I could quote in academic circumstances unfortunately.

It's a paper presented at a conference in a footnote on p.146. You may have seen that. yes, there's no mention of a published paper in the book.

 

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

I'm pretty sure the 'venture philanthropy' approach doesn't meant they're trying to get a monetary return on investment. Just that they are applying some methods/processes from venture capital.

 

Thanks. Have the book here so looked at it. Still didn't find any reference I feel I could quote in academic circumstances unfortunately.

It's a paper presented at a conference in a footnote on p.146. You may have seen that. yes, there's no mention of a published paper in the book.

Ok, see it now - thanks (when I had previously followed your advice, and looked for Mina, p.146 isn't listed in index).
Conference presentations can be referenced I think (I'm not an expert but one doesn't tend to see too many of them so one might have trouble if too many references for an academic paper/letter were from conference proceedings).
Anyway, I have the Byron Hyde book so looked up the chapter, "Study of Cerebral Perfusion by NeuroSPECT in patients with Chronic Fatigue Syndrome". I may be missing something but it seems to me the studies refer to sedentary patients/there doesn't seem to be mention of comparison pre- and post-exercise. At the start of the book, there is images of the effects of exercise on an individual but I can't see a study.

 

Thanks Dolphin and Justin,

You are correct we don't see this sort of thing in the UK. My question was one of interest in how these ventures come about really. As I said it wasn't suggesting anything sinister. Just intrigued in the financial structure. I see that the money came from the one source so it isn't as if several 'investors' are taking a punt that a return might be forthcoming out of this is it? Nah it does sound a very interesting and exciting project. I mean even from a basic level $10 million for 200 samples - that sure is some deep work going to be carried out and the names involved add further credibility. Now if only we could get this sort of backing in the UK but no, we seem only able to back the PACE trial with this sort of cash!

 

I mean even from a basic level $10 million for 200 samples - that sure is some deep work going to be carried out and the names involved add further credibility.

There are more studies planned than one. And the $10m is also going to be spent on studies that haven't been announced yet (or even decided upon, it seems).

Now if only we could get this sort of backing in the UK but no, we seem only able to back the PACE trial with this sort of cash!

While it would be good to get this sort of money in the UK, I'm not convinced it matters that much where the money is spent.

 

Dolphin,

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC368231/

You can get the whole PDF here.

This study appears to be pre and post exercise. Also, this study was done on a small group of "mildly" affected CFS patients who were actually able to complete the 30 minute treadmill.

"Although these findings were not significantly different from those in the control group, the effect of exercise on serum TGF-beta and cerebral blood flow appeared magnified in the CFS patients. Results of this study encourage future research on the interaction of physical exertion, serum cytokines, and cerebral blood flow in CFS that will adopt a more rigorous exercise program than the one used in this study."

 

Dolphin,

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC368231/

You can get the whole PDF here.

This study appears to be pre and post exercise. Also, this study was done on a small group of "mildly" affected CFS patients who were actually able to complete the 30 minute treadmill.

"Although these findings were not significantly different from those in the control group, the effect of exercise on serum TGF-beta and cerebral blood flow appeared magnified in the CFS patients. Results of this study encourage future research on the interaction of physical exertion, serum cytokines, and cerebral blood flow in CFS that will adopt a more rigorous exercise program than the one used in this study."

Thanks Mon ami. I'll read that. Although it says the results aren't significant; also Mena isn't one of the authors so presumably not the same study.

 

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?

.

Natural Killer cell dysfunction is established but I don't know what other problems are. One problem is that natural killer cells don't have nearly profile of T-cells. Some years ago Dr. Peterson did a survey of physicians which concluded that most didn't know anything about them....They're just not as well known...I think that must contribute to it.....Cytokines are all over the place - there's no consensus about them and there does seem to be a trend towards Th1 inhibition. My guess is that the immune problems found in CFS are just not lighting up the research world's eyes. If studies consistently showed high levels of pro-inflammatory cytokines or low T or B-cell numbers - the immune system in CFS would get more interest.

As I remember NK cells are part of the innate immune defense - which has not gotten alot of study and which Montoya thinks should be the focus of research in ME/CFS.

 

As I remember NK cells are part of the innate immune defense - which has not gotten alot of study and which Montoya thinks should be the focus of research in ME/CFS.

This is a great article, Cort.

Since Drs. Levy and Montoya want more ME/CFS "immune system" research to complement the infectious disease work, would you consider writing a similar article describing the worldclass immunology researcher (the Ian Lipkin of Immunology), the Center of Research Excellence (Scripps in San Diego?), and specific researchers doing state-of-the-art innate and adaptive immune system research? Be nice to know their names and see photos.