Below is a list of research studies this site believes would be helpful at better understanding CFS/FMS. If you are a researcher and would like to discuss this with our research officer, please email Research@BeatCfsAndFms.org and place "BeatCfsAndFms Research" in the subject field.
Develop Biomarker For CFS
BeatCfsAndFms's goal is two fold. One is to educate patients on how to combat these illnesses, and the other is to help researchers develop a biomarker for CFS. A biomarker is a test that one can perform that positively identifies a specific illness. Once a biomarker exists, the mainstream medical community can then start to document protocols for treatment (for those that test positive). Also, once one can measure CFS, Doc's can be trained in a specific disorder identified with that test. Also, after one tests positive, they can then begin to track down what makes that parameter the way it is. An affective biomarker would dramatically change how CFS is handled worldwide.
There are 2 primary causes of fatigue. One is "Neurological" fatigue which involves NA/Dopamine neurotransmitter communication problems, and the other is "Metabolic" fatigue, which involves the inhibition of ATP energy synthesis due to enzyme impairments. The popular Metametrix Organic Acid test measures the energy synthesized in the Kreb's Cycle, which is 5% of the total energy synthesized in the body. The balance of the energy is synthesized in this thing called the Electron Transport chain. Items that can impair energy production here include heavy metals, cyanogenic agents, H2S (hydrogen sulfide, which can result from fermentation in small intestine due to harmful bacteria and fungi), and a variety of other harmful chemicals.
BeatCfsAndFms Director Of Research Ray Saarela theorizes that measurement of the ATP Synthesis in the Electron Transport Train is the way CFS will be biomarked in the future. This kind of test does not exist at this time, nor has it been tested, yet many biology laboratories do have the technology to measure these parameters.
Here is an example way the biomarker could be used: A food additive called "Sulfite" can cause metabolic fatigue by inhibiting ATP synthesis. For details on this, please see REFERENCE #18. If one becomes tired after meals yet their blood sugar levels are fine, they could check if the Sulfite is impairing their ATP Synthesis by measuring ATP synthesis before and after ingesting sulfite. If ATP Synthesis drops, one would know exactly why they are becoming tired. This is only one of the thousand ways a CFS biomarker could be used.
The proposed research study would develop a process for measuring the Electron Transport ATP energy synthesis and possible impairments. To characterize one's ATP synthesis, this study would specifically measure the following via a blood test:
* The saturation state/functionality of the cytochrome B5 reductase and Cytochrome C oxidase enzymes that are essential for electron transport chain.
* Levels of oxyhemoglobin, methemoglobin and sulfhemoglobin, to see the O2 transporting capacity, as O2 is essential for ATP synthesis trough the electron transport chain and oxidative phosphorylation.
* Measuring the direct ATP levels.
These measurements would be done using established scientific methods using a spectrometer (a fancy machine in a lab) and chemical reagents/reagent-kits such as for ATP (fancy chemicals), and standard methods for various hemoglobin's from standard lab methods books.
The key idea here is that while these methods exist, they have not been applied directly to chronic fatigue syndrome testing to establish actual physical reasons for the fatigue. These methods have been used in testing energy synthesis impairments, and now it is time to show that CFS has biochemical reasons, and map those reasons with methodological scientific testing.
To produce statistically significant results, data from 100 subjects would be recorded, and samples of their blood would be collected and analyzed directly, preferable by local labs with local physician's and if necessary, by Ray Saarela's lab in Arizona, to determine how much CFS'ers have a biochemical reason for the fatigue. This process would involve careful mathematical statistical correlation studies between diet/exposure questionnaires given to the tested people, and the measured lab results analysis, to find out what types of foods and possible additional chemical exposures from foods and environment might be possible causes for the biochemical chronic fatigue. In this study all data from the 100 subjects, including and direct blood data would be published on the Internet and be made available to the public.
Director of Researcher Ray Saarela is currently contacting laboratories throughout the US and inquiring as to their ability to perform the ATP, Cytochrome B5+C enzyme testing, and the various hemoglobin testing, and if not possible, he plans to offer the tests on limited basis if there is interest in this kind of study, at his own lab where he can measure ATP, sulf-, met- , carboxy- and oxyhemoglobin levels, and possibly also cytochrome B5 and C redox enzyme statuses.
The information of the local lab testing possibilities and/or testing by Ray Saarela will be added in near future to this same page. If you wish to discuss this further, please email RaySaarela@BeatCfsAndFms.org
CFS/FMS Diagnosis and Protocol Study
1) The person funding the study decides the budget, the number of test subjects and who does the research. There are many labs and clinics worldwide that are interested in this material and would make excellent candidates for conducting this research. Each subject may cost $5K to $10K. We will call the total number of subjects N. Recruit N/4 well patients, N/4 CFS patients, N/4 FMS patients, and N/4 CMF+FMS patients.
2) Define FMS as soreness in the soft tissues for at least 1yr that gets noticeably worse after being in bed for several hours. Use the standard CDC 1994 definition for CFS.
3) Separate the patients into two groups: Control and Drug. Place all the well subjects into Control; and separate the symptomatic patients 60/40 in Drug/Control.
4) Asses the following pre treatment with both groups:
* Look for impaired immunity by testing neutrophil function.
* Look for impaired immunity by testing lymphocyte function.
* Look for fungal antibodies (10 IgG and 10 IgE)
* Look at inflammation with sedimentation rate
* Look for heavy metals with Hair Analysis.
* Calcium/Phosphorus regulation
* See if coproporphyrin is spilling into urine via Porphyrin Analysis. For evidence that this is a mercury biomarker, see REFERENCE #5.
* Check digestion with CDSA w/ Parasitology 1x Purge
* Look for food Allergies with ELISA food test
* Look for leaky gut with lactulose/Mannitol challenge test
* Check Citric Acid Cycle with MetaMetrix Organic Acids Analysis.
* Check for sulfide sensitivity with a sulfide challenge test.
* Check for impaired sulfite oxidase by measuring urinary levels of sulfite after, for example, a carbocysteine challenge (e.g. 500-1000 mg carbocysteine).
* Check thyroid via TRH stimulation, and TSH/T4 blood measurement.
* Check adrenal gland via ACTH challenge test.
5) Both Control and Drug groups record daily the following for 6mths:
* pain levels on a scale of 1 to 10
* amounts of Rx meds consumed
* the # of hours of sleep that occur prior to waking w/ pain
* number of hours in bed
* several numbers that indicate level of digestion function
* several numbers that indicate level of fatigue
* a number that indicates level of depression
During 6mths, both groups are instructed: "Try to reduce your pain meds every now and then and if you can tolerate the reduction, stay reduced, otherwise resume your original level."
6) Treat the Drug group with the protocol described at this web site.
7) Re-test the Drug group at the end of the 6mth period.
8) Publish all raw data on Internet before month #8 in spreadsheet form. Use several spreadsheets if necessary. Number patients P1 through Px. On spreadsheet, place patient in rows and test results in each column. Data is available to the public for Internet download, and can be used by anyone for any reason.
Wellbutrin SR and Provigil CFS Study
Test the efficacy of Wellbutrin SR and Provigil with three groups of subjects: Wellbutrin CFS, Provigil CFS, Control CFS. Question all subjects at 1 week intervals, for 12weeks.
CFS/FMS Live Subject Heavy Metal Biopsy Study
Take liver and colon biopsies of live healthy controls, CFS patients, and FMS patients; and measure levels of heavy metals including mercury. Also, measure heavy metals via the DMSA challenge test, hair test, and porphyrin analysis. For more comments on this, click here.
CFS/FMS Cadaver Heavy Metal Biopsy Study
Take liver, brain, kidney, colon, FMS tender point soft tissue areas, and pancreas biopsies from dead controls, CFS cadavers, and FMS cadavers; and measure levels of Phosphorus, Calcium and heavy metals including mercury. With FMS tender point areas, measure P and Ca levels inside of cells using solvents to leech out material around the cells, and then measure P and Ca levels after breaking cells walls. This method is similar to that which has been done in Alzheimer's studies that showed Alzheimer brain to have higher levels of Calcium and Mercury than controls.
Gulf War Syndrome Cadaver Biopsy Study
Perform a brain, spinal cord, kidney, pancreas, colon, and liver biopsy with recently deceased GWS patients and measure levels of heavy metals and war drugs such as pyridostigmine bormide, DEET, and permethrin. Publish all raw data on Internet in spreadsheet form. For more details, click here.
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