Difference between NIH and OMF studies?

[keepinghopealive]

Hi everyone, I was wondering if someone could explain to this poor brain-fogged person what the difference is between the ME/CFS research the NIH is doing (which seems to involve looking at hundreds of variables to see where the problem lies) and what the Open Medicine Foundation is doing (which seems to involve looking at hundreds of variables to see where the problem lies). I applaud both organizations for the work they're doing to solve this thing, but I don't understand where they're different from each other in what they're studying.

 

[Cort]

Hi everyone, I was wondering if someone could explain to this poor brain-fogged person what the difference is between the ME/CFS research the NIH is doing (which seems to involve looking at hundreds of variables to see where the problem lies) and what the Open Medicine Foundation is doing (which seems to involve looking at hundreds of variables to see where the problem lies). I applaud both organizations for the work they're doing to solve this thing, but I don't understand where they're different from each other in what they're studying.

Great question. There are actually quite a few differences even in the immune section....This is worthy of short blog actually and I think I will do one...some of them we don't know because the NIH study hasn't released exactly what they are doing.

I remember Ron saying the two studies are very different.

Off the top of my head

Davis - more molecular profiling I believe, more gene and genetic analyses, deep examination of the mitochondria, more comprehensive (maybe) examination of the immune system, deeper examination of viruses, heavy metals,

NIH - before and after exercise test! deeper examination of the autonomic nervous system, two kinds of brain scans, an overnight stay in a chamber that examines energy metabolism, examination of 1500 immune and other factors, implanting immune system in mice, neuron work outside the body which I don't understand at all..

OMF Severe Patient Big Data Study

Research Tests

• RNA Gene Expression – PBMCs
• RNA Gene Expression – NKs
• RNA Gene Expression – Monocytes
• RNA Gene Expression – T-Cells
• RNA Gene Expression – B-Cells
• RNA Gene Expression – Macrophages
• RNA Gene Expression – Dendritic Cells
• MicroRNA in Plasma
• Proteomics
• Cell-Free DNA
• Whole Genome Sequencing
• Whole Exome Genome Sequencing
• Mitochondrial Genome Sequencing
• Mitochondrial DNA/Nuclear DNA Radio
• HLA DNA Sequencing
• WBC density
• Autoantibody panel
• T-cell Repertoire DNA Sequencing-Stanford
• T-cell Repertoire DNA Sequencing-Sequenta
• CyTOF Standard Panel
• CyTOF Additional Panels
• Pan Viral Panel
• Serum Cytokines
• Ceres Nano Lyme
• Microbiome – stool
• Metabolomics – stool
• Metabolomics – plasma
• Metabolomics – urine
• Heavy Metals – blood
• Heavy Metals – urine
• Mycotoxins by Magarray

Clinical Testing

• Acylcarnitines
• Ammonia
• Bartonella extended cx
• Biotin (Vitamin B7)
• CBC (Complete Blood Count)
• Chemistry Comprehensive Panel
• Creatine Kinase
• Copper
• C- Reactive Protein
• Cysteine
• Folate
• FSH (Follicle-Stimulating Hormone)
• LH (Luteinizing Hormone)
• Estrogen
• HbA1C (Hemoglobin A1c)
• Homocysteine
• IgG Subsets
• Lactate
• Lyme Serology with reflex Western Blot
• Lymphocyte Subsets
• MMA (Methylmalonic Acid)
• MTHFR Mutations (Methylenetetrahydrofolate)
• Natural Killer Cell (Count & Function)
• Organic Acids – urine
• Pyruvate
• Serotonin
• Testosterone
• Thyroid Panel
• Uric Acid
• Vasopressin/ADH
• Viral Digital PCR
• Viral Serologies:
  • EBV EA (Epstein Barr Virus EA)
  • EBV NA (Epstein Barr Virus NA)
  • EBV VCA (Epstein Barr Virus VCA)
  • CMV (Cytomegalovirus)
  • HHV-6 (Human Herpesvirus 6)
  • Parvovirus
  • HHV-7 (Human Herpes Virus 7)
  • HSV1&2 (Herpes Simplex 1 & 2)
• Vitamin B12 (Cobalamin)
• Vitamin D25 OH

Other Testing/Monitoring

• Extended EEG
• Sleep monitoring
• Fitbit
• Cognitive Testing
• Questionnaires – SF36, PROMIS

NIH

http://mecfs.ctss.nih.gov/index.html

 

[keepinghopealive]

Wow!! Very eye-opening; thank you Cort!!

 

[Cort]

Wow!! Very eye-opening; thank you Cort!!

The NIH study is just extroardinary. It is doing so many different, cutting edge things - from putting patients in a chamber overnight to measure their energy output -to two different kinds of MRI's, to transplanting their immune systems into mice, to doing something novel with neurons - to the two-day exercise test - it's really pretty astonishing.

I imagine that it's going to cost a ton of money...

Then - to think that Ron is doing something really very different - indicates that a lot of bases are going to be covered over the next year or so.

 

[keepinghopealive]

The NIH study is just extroardinary. It is doing so many different, cutting edge things - from putting patients in a chamber overnight to measure their energy output -to two different kinds of MRI's, to transplanting their immune systems into mice, to doing something novel with neurons - to the two-day exercise test - it's really pretty astonishing.

I imagine that it's going to cost a ton of money...

Then - to think that Ron is doing something really very different - indicates that a lot of bases are going to be covered over the next year or so.

This is so exciting! Plus Jarred Younger and Ian Lipkin (and others) doing their own cutting-edge stuff as well. To imagine that we may have an answer within the next year or so does not seem far-fetched to me. Or am I being too optimistic?