Severely Ill Chronic Fatigue Syndrome (ME/CFS) Study Expanded

[Zapped]

Progress on the research front is the good news. Unfortunately one needs consider historical reality for self-directed treatment due to the average time from lab bench to clinical implementation has been ~15 years, +/-. (That likely puts me on the other side of the grass. Not to worry - from the great ether I'll implement my revenge on the laggards - maybe organize the rest of the spooks to dose 'em with 1st degree CFS and a side order of Bubonic Plague!)

 

[sheba]

if one is severely ill and lives near stanford, how can they become involved in study.

thanks, lisa

 

[Cort]

if one is severely ill and lives near stanford, how can they become involved in study.

thanks, lisa

I would contact the Open Medicine Foundation - here's an email address - info@openmedicinefoundation.org - Good luck!

 

[Cort]

Progress on the research front is the good news. Unfortunately one needs consider historical reality for self-directed treatment due to the average time from lab bench to clinical implementation has been ~15 years, +/-. (That likely puts me on the other side of the grass. Not to worry - from the great ether I'll implement my revenge on the laggards - maybe organize the rest of the spooks to dose 'em with 1st degree CFS and a side order of Bubonic Plague!)

One thing I forgot to mention in the blog is Ron Davis's commitment - once he's determined what pathways are involved - to look for drugs that are already in use to treat the illness.

 

[Cort]

Is there any reason why a patient's physician could not submit CD images of recent MRI's? I.e., I have a recent MRI CD that my physician, Dr. Patricia Salvato, could submit for research. Additionally, I am scheduled for cervical surgery on January 5, 2016, wherein several vertebrae will be removed and replaced with a metal section. If the "amputated" section could be helpful in research, Dr. Salvato could arrange to make it available for that purpose. According to my son, Dr. Devin Pettiet, my spinal cord is packed full of "material" that prevents messages from my brain to get through to the applicable parts of my body, causing them to "spew" back up into my brain in a willy-nilly fashion, causing all kinds of confusion. I would like to make that material available to researchers, as well.

Maybe contact the Open Medicine Founation info@openmedicinefoundation.org or Ian Lipkin at the Center for Infection and Immunity and see what they think. I know Lipkin has said he would love to have biopsy material - it's just the getting of it...

That's an interesting hypothesis...intuitively it makes sense that something like that is happening.

Good luck with the surgery.

 

[Cort]

Is there any reason why a patient's physician could not submit CD images of recent MRI's? I.e., I have a recent MRI CD that my physician, Dr. Patricia Salvato, could submit for research. Additionally, I am scheduled for cervical surgery on January 5, 2016, wherein several vertebrae will be removed and replaced with a metal section. If the "amputated" section could be helpful in research, Dr. Salvato could arrange to make it available for that purpose. According to my son, Dr. Devin Pettiet, my spinal cord is packed full of "material" that prevents messages from my brain to get through to the applicable parts of my body, causing them to "spew" back up into my brain in a willy-nilly fashion, causing all kinds of confusion. I would like to make that material available to researchers, as well.

That's a great idea. Many people probably have different kinds of MRI's they could submit. The Solve ME/CFS Initiatve is expanding their BioBank and Registry. I wonder if either they or Ron Davis would be interested in having a copy?

 

[Sarah R.]

Wow! Godspeed to this courageous, compassionate and brilliant father. And blessings to all who can contribute. I hope the brightest light will shine out of the deep, deep darkness of Whitney's severe illness.

 

[ladybug64]

That was the most exciting thing for me to hear. I could envision some hot post-grads coming home from work and dialing up the data and having a go at it...

They should treat this release/sharing of info the same way they do in the cyber hackers world: put it out there in an open forum for all to comment/work on together, create a "cyber round table" where ideas are shared and expert discoveries of one researcher can be built upon by others. I.e., Let the experts elevate each others "level of play" .

 

[Zapped]

<<...create a "cyber round table" where ideas are shared and expert discoveries of one researcher can be built upon by others. I.e., Let the experts elevate each others "level of play" .>>

Now there' a good idea in an ideal arena, sic otherwise synergy which currently is disregarded for the sake of personal gain (professional recognition, or patents) or is overdone such that everyone jumps on the same illusory bandwagon (going the wrong way,i.e. with dead end results, but with unjustified persistence).

 

[Zapped]

One thing I forgot to mention in the blog is Ron Davis's commitment - once he's determined what pathways are involved - to look for drugs that are already in use to treat the illness.

@Cort,
It wouldn't surprise this PWC that the 'cure' turns out to be blantantly simple and readily accessible ,
eg "take 2 aspirin and a glass of warm burpentine, and call me in the morning... ."

 

[Gamboa]

This is THE BEST news that I have heard all year!

Thanks Cort, once again, for giving us hope by sharing this.

I love the fact that any positive results will be shared online right away. The waiting for studies to be written up, peer reviewed and finally printed in a paper is painfully long.

I think 2016 is going to be a great year for the ME/CFS community

 

[Merida]

I have long been protecting my pitiful self by shutting down emotionally when I view any article on CFIDS/ME. I had given up, not dared to hope any longer..for anything. Reading this has allowed me to open the door to hope once again...just a crack. But yes, I want to at least die validated.

Yes, I am there with you, Nina. May the Force be with us.

 

[Merida]

I agree! On the plus side of FM more pharmaceutical companies are interested in it and doing research on it. Plus there's just a heck of a lot more research done on pain anyway.

On the downside there doesn't seem to be this kind of excitement and drive in the FM community for some reason. There isn't a Ron Davis or an Ian Lipkin pushing the government to do more. Nor is there the kind of interest in advocacy at least that I can tell in the FM community as in the ME/CFS community'

There's pluses and minuses for both diseases...

It's fascinating that that these two rather similar diseases have evolved so differently...

I have been diagnosed with both, and I think that they are just different sides of the same coin. Initially I had 13 tender points and was diagnosed with FM. But now, only two or three tender points, but clearly all the criteria for CFS. So, I think the problem is in the diagnostic criteria.

 

[Remy]

Complete Test List

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

This is a really amazing list of tests!

I was just thinking of having the Labcorp acylcarnitine panel done...and now I think I will! Even if I probably won't have the slightest idea what the results mean...

 

[Zapped]

This is a really amazing list of tests!...

I agree with the post.

So, my doc says ''what do I do with this?"

...Do you think I ought to tell him... ?