NCF's Strange (?) Good (?) New Research

Cort

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The National CFIDS Association's latest funded research is a doozy. You have to say one thing about the organization - they are looking in corners no one else is looking and they do have the strength of their convictions. They did this before with ciguatoxin and it worked out - partially. They found that chronic fatigue syndrome patients had very high levels of the epitope but cancer and other patients had high levels as well: it was definitely not a marker for ME/CFS. Still even if it wasn't specific to this disease they may have stumbled onto an important inflammatory marker and it translated into an NIH grant.

Now they're funding basic research into processes involved in acute myeloid leukemia and a disorder called myelodysplasia. Myelodysplasia is a bone marrow stem cell disorder that often results in anemia and low blood cell production. People who get it have a good chance of coming down with leukemia (but not ME/CFS?). It effects slightly more men than women and causes these symptoms:

  • Anemia—chronic tiredness, shortness of breath, chilled sensation, sometimes chest pain
  • Neutropenia (low neutrophil count) —increased susceptibility to infection
  • Thrombocytopenia (low platelet count) —increased susceptibility to bleeding and ecchymosis (bruising), as well as subcutaneous hemorrhaging resulting in purpura or petechia[2]

One would think the low blood volume problems would fit in here.

This new research brings the total to $255,000 awarded to researchers in just the last four months. The latest research grant recipient was awarded to Tsvee Lapidot, Ph.D., Professor of immunology at the Weizmann institute of Science in Israel. Dr. Lapidot has an extensive background in AML.
The elastase connection is what's really intriguing to the NCF. They're funding research to determine just how strong that connection is. Elastase has lost a little of its bloom lately. As I remember it did not appear to play a role in the postexertional problems in ME/CFS in one study but it's still a possible factor that's for sure and other studies suggest it could be a factor. This is basic, basic research - no CFS (or any other) patients are involved. this is the kind of research you do when you're sure that you've identified a fundamental factor in this disease. Is elastase that factor? Only time will tell.

This research is important to the Foundation because of the key role of elastase in the CFIDS/ME process. Since elastase plays a critical role in myeloid lineage development Dr. Lapidot will be using several compounds to explore their mechanistic action applicable to both myelodysplasia and AML utilizing in-vitro assays as well as a functional pre-clinical mouse model. Dr. Lapidot's research is titled "Involvement of elastase and SDF-1/CXCR4 axis in regulation of motility and development of human AML initiating cells."
The NCF is so convinced that the processes that lead to AML are also present in ME/CFS that they're funding research on botanicals that may help inhibit AML. They're out on the skinny branches that's for sure. They have found some markers that apparently suggest both diseases have something in common. Intriguing stuff!

Ongoing research is being performed by Hany El-Shemy, Ph.D., Professor of Biochemistry at Cairo University in Egypt as already announced. Dr. El-Shemy will be evaluating numerous compounds in-vitro against acute myeloid leukemia (AML) cell lines using markers found by the NCF in patients diagnosed with CFIDS/ME whom had participated in previous studies. His interests include the use of plant-based hotanicals for the eradication of AML. This research is important to the Foundation in light of patient results obtained from specialized flow cytometry and cytogenetics testing to establish the markers. The use of botanicals represents a novel approach towards the treatment of myelodysplastic cells that are progressing towards AML development. Early hints regarding potential treatment implications for long-term CFIDS/ME patients may result from this research.

Dr. El-Shemy did his postdoctoral fellowship in leukemia with Professor Kounosuke Fujita at Hiroshima University in Japan.Dr. El-Shemy's research is titled "Production of natural biological active formulas as anti-carcinogenic AML drugs.
http://www.ncf-net.org/forum/2009spring1.htm
 

Dolphin

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I have some doubts about too much of a ME/CFS research budget being spent on non-ME/CFS research as such (i.e. not involving patients with the illness or an animal model of the illness) esp. when there is so little good quality research going on into ME/CFS worldwide. If it were a Cancer or AIDS (say) charity funding leftfield research it would be a bit different.
 

dannybex

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Hmmm...

It effects slightly more men than women and causes these symptoms:

  • Anemiachronic tiredness, shortness of breath, chilled sensation, sometimes chest pain
  • Neutropenia (low neutrophil count) increased susceptibility to infection
  • Thrombocytopenia (low platelet count) increased susceptibility to bleeding and ecchymosis (bruising), as well as subcutaneous hemorrhaging resulting in purpura or petechia[2]
...

The NCF is so convinced that the processes that lead to AML are also present in ME/CFS that they're funding research on botanicals that may help inhibit AML. They're out on the skinny branches that's for sure. They have found some markers that apparently suggest both diseases have something in common. Intriguing stuff!
I'm stunned that the NCF is actually funding research that involves plain ol' botanicals, and not some wonder drug...that indeed is encouraging and intriguing, coming from an organization that is historically (imho) so close-minded and negative about any sort of non-drug treatments -- even the ones that have shown proven benefits in double-blind studies.

Just also wanted to note that anemia, leukopenia, and thrombocytopenia are all 'side-effects' from klonopin, the drug highly touted by Cheney...
 

Cort

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I agree Tom. The NCF is doing this differently than most groups. Instead of using the scientific community using their collective knowledge to bring them proposals the NCF 'Boardroom' decides what they want studied and then goes out and pays researchers to do it.

Very few nonprofit organizations directly seek out scientists to fund specialized research projects. This is what the National CFIDS Foundation does best — funding directed medical research whose scientific concepts originate from the boardroom.
I think the NCF could amend the statement to say very few research funding organizations do this; the NIH doesn't for instance. NCF supporters (and all of us really) will, of course, hope that that organizations boardroom knows what they're doing.
 

Dolphin

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The NCF is doing this differently than most groups. Instead of using the scientific community using their collective knowledge to bring them proposals the NCF 'Boardroom' decides what they want studied and then goes out and pays researchers to do it.
But that, as I say, isn't the only distinction (or what I have most questions over). Most of this year's research grants don't involve samples from ME/CFS patients.
 

Dolphin

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I know I added my own ideas there.;) Sorry to imply they were yours as well :)
No prob. Good you highlighted it. I had been surprised when I read about the grants initially and then surprised when nobody mentioned it.
 

Mithriel

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CFS patients are such a mixed bunch you are never sure exactly what disease any of them have, so I suppose it makes sense to work out something like what elastase does in a group which are definitely homogeneous.

Then you can say "This is what elastase does, so it must be doing it if the levels are wrong in CFS too"

It's like sneaking it past the "CFS censors"

It's like all the basic research being done on XMRV in prostrate cancer. The basic biology is being worked out in mainstream science and medicine which would not give the time of day to a CFS patient.

Mithriel
 

dannybex

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Well...

Maybe what they have in common is "XMRV" - a cousin of Murine "Leukemia" Virus?
It should be noted that the NCF (at least initially) had a very negative view of the XMRV findings, and were even suspicious of the WPI's motives (according to a friend who subscribed to their newsletter). But then again they're negative about anything (imo) that isn't a result of their own funding/research.

This was back in Nov-Dec. Perhaps they've changed their opinion now...???