New Yorkers! Ben Natelson Wants You!

Cort

Founder of Health Rising and Phoenix Rising
Staff member
[fright]
Natelson_Benjamin_11.jpg
[/fright]This NIH-funded study is the culmination of years of effort and several past studies. NIH-funded studies are rare in ME/CFS - and they get noticed when they are published; let's make sure they can get this done as soon as possible. They need a few more people to complete the study.

This study attempts to show that people with ME/CFS have reduced blood flows to the brain, increased lactate levels, reduced antioxidant levels, and increased oxidative stress; i.e. their brains are a mess. Along with that, they're attempting to show ME/CFS brains are different from the brains of people with major depression, and that the oxidative stress problems are found body-wide - in the brain, blood, and urine. It's a fantastic study.

People in the study should not be taking brain altering meds for anxiety, depression, insomnia or pain for at least a week, and live within commuting distance of New York City (in order to get reimbursed for travel. If you don't need to be reimbursed for travel then you can come from anywhere :))

The study simply requires filling out some questionnaires, getting an MRI done and taking some blood and urine tests. If you'd like to participate please use the contact form on the Pain and Fatigue website and/or call 212-844-6665.

Check out a description of the study from ProjectReporter below.

DESCRIPTION (provided by applicant): Chronic fatigue syndrome (CFS) is a complex multi-system disorder, which is often misdiagnosed as a psychiatric illness. As a result, the diagnosis of CFS is highly controversial. Discovery of CFS-specific biomarkers that can differentiate the disorder from phenotypically similar psychiatric conditions, such as major depressive disorder (MDD), could thus have a profound impact, not only for how the disorder is generally perceived and managed, but also for the development of objective diagnostic tests, for identification of new therapeutic targets, as well as for advancing scientific understanding of CFS.

Recently, using advanced magnetic resonance neuroimaging techniques and a standardized battery of clinical assessments in 15 patients with CFS with those in 15 patients with MDD and in 13 healthy controls, the applicants discovered strong experimental evidence, including a mean deficit of 36% in the most abundant antioxidant in living tissue, glutathione (GSH), increased ventricular cerebrospinal fluid (CSF) lactate, and decreased regional cerebral blood flow (rCBF) compared to controls, which suggested increased oxidative stress as a pathophysiological model of CFS.

However, while highly promising and intrinsically consistent, both the validity and the specificity of this oxidative stress hypothesis for CFS remain uncertain, as

(a) the essential findings of the study have yet to be replicated, and
(b) the same types of abnormalities were found in MDD compared to controls.

On the other hand, with comparisons revealing trend-level differences between CFS and MDD, the investigators hypothesized that limited sample size, coupled with the inherent clinical heterogeneity of the two disorders, likely limited the power of their pilot study to detect potential differences between the two disorders.

Therefore, to address this potential limitation and to attempt objective differentiation of CFS and MDD - a daunting and continuing challenge - the investigators propose:

(1) to replicate in larger cohorts the results of their pilot neuroimaging study that suggested the oxidative stress hypothesis of CFS;
(2) to extend the support and evidence base for the model through measurements of several established markers of oxidative stress in plasma, urine and CSF samples from all the subjects;
(3) to correlate the resulting objective outcome measures with clinical indices of overall health and functional disability in all subjects; and
(4) to attempt to decrease the inherent clinical heterogeneity in both the CFS and MDD groups through stratification or subtyping techniques based on clinical variables that are unique to each disorder, and then to compare the outcome measures between the resulting subgroups.

The expectation is that this approach would identify subgroups of CFS and MDD patients between which significant differences in outcome measures exist that can enable objective differentiation of the two disorders, thereby establishing the outcome measures as bona fide diseases biomarkers, and supporting oxidative stress as a valid and specific pathophysiological model for CFS.
 
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ladybug64

Member
I wish someone would do this type of study in California. I think they are on the right track with this one....
 

rebar

Active Member
It's good to see, a great long needed vein of research. I'd do it as I'm very close to the city. but alas I take "Brain Altering Meds".
I would assume this will limit the pool of participants, many take some form, also it may reduce the number of the more impaired.

I've got many revolving issues with my head, upper neck at base of scull, cognitive, memory, blah,blah,blah.
 

Outnabout

New Member
A number of studies have been done on the brain at the Queen Elizabeth Hospital Adelaide SA, Australia. I can't remember what each one looked at but one of the earlier ones showed low perfusion in the brain. This is the latest study.
"Progressive Brain Changes in Patients
With Chronic Fatigue Syndrome:
A Longitudinal MRI Study"
Some of the authors if you are searching are Drs Burnet, Casse, Kwaitek, Del Fante...
 

Leila Gary

Member
If they would do one here in Oregon, I would be there. I might be classified as being on "Brain Altering Meds" as I take many different nutritional supplements for mood, stress l, etc..I am on Valacyclovir (have been since 2001) as well but it isn't usually classified as a "Brain Altering Med". I kept asking my doctors from 2005 to 2011 to do a brain MRI but they all said it was too expensive and all my symptoms were "age related/menopause"

(I was 43 in 2005 when I first started having progressive symptoms of short term memory problems, forgetting what I was supposed to do at my job in the middle of the job, vertigo, balance issues, dizziness....the list is long...I got in a car accident Nov 2005 and was knocked unconscious for about 7-10 minutes. Didn't go to hospital because I "felt fine and better than I had felt for years"...Chiropractor was concerned that my body was in shock for 5 days.

Day 6 after the accident, I woke up feeling like every inch of my body had been beaten, severely and was bruised. I stood up and immediately fell back on my bed. That was only the beginning.

The guy I was living with at the time had already begun treating bad (emotional/verbal abuse) so he was no help in taking me to the hospital. He started getting more and more abusive verbally/mentally for the next 5 years until I was finally able to get away but in the meantime, I have had no good medical treatment and have been "self-treating" with Nutritional Supplements for the last 6-7 years....

Sometimes I feel they really help but other times I wonder. I tried to go in to a place in, I believe, Seattle to get a brain mri and they said it would cost $3,750 and I needed 1/2 of that at the first visit....That amount covered the consult, MRI and a few visits afterward. I didn't have the money so....

.The only way I will ever get a MRI now is if a researcher comes to Oregon.
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
It's good to see, a great long needed vein of research. I'd do it as I'm very close to the city. but alas I take "Brain Altering Meds".
I would assume this will limit the pool of participants, many take some form, also it may reduce the number of the more impaired.

I've got many revolving issues with my head, upper neck at base of scull, cognitive, memory, blah,blah,blah.
I think it limits it greatly! I can see why he reached out to me...
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
A number of studies have been done on the brain at the Queen Elizabeth Hospital Adelaide SA, Australia. I can't remember what each one looked at but one of the earlier ones showed low perfusion in the brain. This is the latest study.
"Progressive Brain Changes in Patients
With Chronic Fatigue Syndrome:
A Longitudinal MRI Study"
Some of the authors if you are searching are Drs Burnet, Casse, Kwaitek, Del Fante...
Thanks - I think I did a blog on this (I hope I did...)
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
You have to be off the 'brain altering meds' for at least a week...and I imagine they would like a couple more days.
It's good to see, a great long needed vein of research. I'd do it as I'm very close to the city. but alas I take "Brain Altering Meds".
I would assume this will limit the pool of participants, many take some form, also it may reduce the number of the more impaired.

I've got many revolving issues with my head, upper neck at base of scull, cognitive, memory, blah,blah,blah.
ou
 

Prashanti

Member
Thanks - I think I did a blog on this (I hope I did...)
What type of MRI is being done for the study?
My fatigue began 1-2 years after a major car accident in 1989. At that point no one thought to check for a brain injury, and I never suggested it.... "I should have had my head examined." ha ha.
So now many years later I am feeling the CFS is possibly all due to a TBI. Here a few things I'm doing to pursue that avenue. I would appreciate any comments anyone out there has.
1-My alternative Dr has done an "Evoke" test a type of EEG with findings showing possible brain injury or concussion.
2-Today I just did a blood panel for TBI. I never would have guessed there was blood work for a TBI....will get results in a few weeks.
3- I have begun to use the alpha-stim brain stimulator....with great results. That is to say I don't fall asleep everyday.
4- My alternative Dr. says an MRI won't tell much yet my Dr. at the Stanford CFS clinic says I should get an MRI. The Amen Clinics suggest the fMRI and SPECT tests. I would go there, but it would be out of pocket and around $4,000.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Interesting....Please keep us informed about the blood panel, TBI and brain stimulator.

Natelson is doing an MRS not an MRI I'm afraid, which measures the chemicals in the brain.

Note: Shungu says NAC helps with brain inflammation - see upcoming report on the IACFS/ME conference..

Really interesting stuff Prashanti = good luck with it


What type of MRI is being done for the study?
My fatigue began 1-2 years after a major car accident in 1989. At that point no one thought to check for a brain injury, and I never suggested it.... "I should have had my head examined." ha ha.
So now many years later I am feeling the CFS is possibly all due to a TBI. Here a few things I'm doing to pursue that avenue. I would appreciate any comments anyone out there has.
1-My alternative Dr has done an "Evoke" test a type of EEG with findings showing possible brain injury or concussion.
2-Today I just did a blood panel for TBI. I never would have guessed there was blood work for a TBI....will get results in a few weeks.
3- I have begun to use the alpha-stim brain stimulator....with great results. That is to say I don't fall asleep everyday.
4- My alternative Dr. says an MRI won't tell much yet my Dr. at the Stanford CFS clinic says I should get an MRI. The Amen Clinics suggest the fMRI and SPECT tests. I would go there, but it would be out of pocket and around $4,000.
 

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