Community Report: ME/CFS Patients on Advice For the NIH Clinical Center Study

Community Report: ME/CFS Patients on Advice For the NIH Clinical Center Study

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The ME/CFS Community provided over a hundred suggestions to Dr. Nath regarding the large Clinical Center study to begin in the first half of 2016.

I delivered the suggestions and this message
To Drs. Nath, Koroshetz and Vicky Whittemore

Thanks to the NIH, after its many years of ignoring this disease, for making such a dramatic about face and producing what is easily the most comprehensive examination of ME/CFS done to date. I believe your efforts will be rewarded with some remarkable data. Here’s to the beginning of what will hopefully be a long and fruitful relationship.

In that vein, when asked what testing the Clinical Center Study might include, members of the ME/CFS Community provided over a hundred suggestions. We present these suggestions not as scientists but as patients whose personal experiences might offer some unique insights into this illness.

Thanks for your attention and your support and good luck in the study.

Yours truly,

Cort Johnson


Balance and Gait and Body
  • Do vestibular testing. Assess the incidence of gait problems in ME/CFS.
  • Do Rhomberg test; some doctors report positive Rhomberg tests are very common in ME/CFS
  • Assess cranial alignment (from a patient for whom neurocranial reconstruction resulted in major improvement).
  • Replicate the Japanese Neuroinflammation Study – and talk to the Japanese researchers. The Japanese used a PET scan ( PK-11195 marker) to find widespread neuroinflammation in ME/CFS patients brains. They have upgraded their approach and undoubtedly have things they’d like to share. A major exploratory without an attempt to find neuroinflammation would be a missed opportunity.
  • MRI - reproduce Nakatomi + 2011 Australian MRI study
  • Examine the possibility of a vagus nerve infection. Talk to Mark VanElzakker about his vagus nerve findings. VanElzakker is looking right now for signs of vagus nerve inflammation. He may have something to pass on.
  • [fright]
    Assess blood flows to the brain
  • Do QEEG tests (from a patient with diagnosed metabolic encephalopathy)
  • Assess lactate levels, blood flows, and GSH/GSSG levels in the brain aka Shukla's studies
  • Use multi-site vibrotactile stimulation and (sophisticated) computer processed sensory testing to measure various brain functions (as opposed to old manual sensory testing that can only be used to test for peripheral nerve function). This new test is used in research studies to measure cognitive impairment and cognitive changes in various pathologies like traumatic brain injury, dementia, autism or even migraine.
  • Test spinal fluid (do 51-plex cytokine assay (reproduce Columbia study), oligoclonal band test, proteomic/metabolomic assay. Confer with Dr. Peterson on the subset used in the CFI study.
  • Assess the degree in increased intracranial spinal fluid pressure in ME/CFS.
  • Use traditional MRI instead of fMRI, SPECT and/or PET scans pre- and post-exercise to examine blood flow to the brain and diurnal cortisol readings.
  • Assess blood volume using the Daxor instrument. Assess why blood volume is so often very extraordinarily low in ME/CFS
  • Assess exhaled breath for NO, nitric oxide using Niox Vero handheld instrument or others. (Cytokines storm or mitochondrial disorders can lead to high NO, NO can dilate blood vessels, and perhaps contribute thereby to POTS.
  • Assess heart functioning using Dr. Peckerman's and Dr. Cheney's work as a template
  • Assess ankle-branchial index for peripheral artery disease (one patient had such bad blood flow that she was unable to stand on her legs).
  • Examine the effects of saline on symptoms post-exercise
  • Ask why high salt intake has little effect on blood pressure
  • Assess the incidence of alcohol intolerance; ask why alcohol is almost universally avoided in ME/CFS. Contact Jarred Younger regarding his alcohol intolerance study underway now. This unusual response to alcohol could be unique to ME/CFS.
  • Examine the prevalence of food intolerances and environmental triggers
  • Assess the incidence of dairy and gluten intolerance.
  • Ask patients which kinds of diets have been most effective for them
  • Explore why avoiding sweets is almost universally recommended for people with ME/CFS
  • Explore why salt craving/high salt intake also almost universally occurs in ME/CFS
  • Do the exercise portion as early as possible in the study to get the full effect of exercise on all the other tests
  • Chart the reactions to the exercise at least over two days. Consider that post-exertional malaise may occur past the two day window. Consider charting the reactions to exercise for two months (from a patient who relapsed for two months after a 2-day exercise test).
  • Assess the ability of the muscles to regulate and remove pH and lactic acid
  • Determine whether pH removal in the muscles is associated with reduced cerebral blood flows aka Dr. Newton's findings
  • Assess gene expression changes after exercise using Dr. Light's studies as a template
  • Assess complement C4a findings after exercise - follow up on the CDC's exercise study work
  • Assess gait and vestibular functioning before and after exertion
  • [fright]
    Examine the effects of exercise on thyroid functioning (from a patient who's TSH levels went from .74 to 7.4 after a day moving boxes. )
  • Determine how mental exertion can cause physical symptoms such as disorientation, fatigue and others and be as debilitating for some as physical exercise (from three people).
  • Monitor HR continuously and with accelerometers. Find out why heart rate drops with exertion in some patients and why it can rise after the exertion is done or why it can rises too fast in some patients. Determine why blood pressure can drop after exercise. Determine why resting HR's - particularly the day after exercise - are high.
  • Assess the degree of chronotropic incompetence present
  • Monitor heart rate, oxygen levels long term using Fitbits or other devices.
  • Assess lactate, acetate, possible other organic acids; formate, glycolate could be tracked.
  • Assess the degree of microflora change and microbial translocation before and after exertion
  • Assess histamine levels before, during and after exercise
  • Assess muscle weakness before and after exercise
  • Assess symptom changes before and after exercise. Does exercise provoke new symptoms?
Expert Advice
  • Include Ron Davis – Ron Davis basically birthed this project with his grant proposal’s asking that the NIH fund a similar project. He and his fellow researcher have gone over and over again and again on what to look for, and Davis has already begun to pick up new findings. His group has a wealth of knowledge that the Clinical Center trial researchers could draw on.
  • Dr. Peterson's subgrouping of atypical and typical ME/CFS patients was critical to the success of the Simmaron/CFI spinal fluid study. Get his advice on testing, on subgroups and how to protect the patients’ health and well-being during and after the study.
  • Talk to Staci Stevens at Workwell – the exercise portion may be the most critical part of this study. She developed the two-day exercise protocol over the past two decades and has tested hundreds of patient using it. Use her to learn how to get sick ME/CFS patients through those tests safely.
  • Contact Fluge/Mella about their Rituximab and blood vessel work and unpublished findings
  • Talk to Julia Newton about her autonomic nervous system findings. Focus on her studies showing that the muscle problems in ME/CFS may be connected to the brain problems.
  • [fright]
    [/fright]Talk to Dr. Sonya Marshall-Gradisnuk at Griffiths University about recent biomarker finding. Assess the finding in the study.
  • Talk to Alan Light about his exercise and gene expression findings. Alan Light’s graph of muscle metabolism and other markers going banana’s during exercise are still the most visually striking ME/CFS findings we've seen.
  • Bring in all the Big Dogs to fill in the GAPS through review of study content and missing tests: Klimas, Peterson, Lapp, Teitelbaum, Kenny De Meirleir, Oaklander, Elander, Holtorf, *Byron Hyde, Bateman.
  • Involve migraine and headache specialists involved in this from various perspectives – blood flows, oxygen, neurology, immunology, gastrointestinal, sleep, etc.
  • Contact the Zinn's regarding their recent QEEG findings
  • Get input from Dr. Julian Stewart and Marvin Meadows. They have studied the orthostatic and blood flow problems in ME/CFS POTS for over a decade.
  • Contact Gordon Broderick regarding immune networking findings
  • Contact Dr. Brewer about increased incidence of sinus issues in ME/CFS
  • Contact Dr. Shirley Bastien regarding appropriate neurospychological testing and issues.
  • Talk to Dr. Gominak about Vit B and D issues
  • Talk to Dr. Myhill about mitochondrial problems
  • Include doctors like Dr. Solcher, who are on the front lines of this research.
  • Contact Dr. Enlander at Mt Sinai Research Center in New York City regarding the results of his and Dr. Schact's extensive exercise study.
  • Check out Dr. Goldstein's "Betrayal by the Brain", "Limbic Hypothesis" and other books on ME/CFS.
  • Read "Myalgic Encephalomyelitis and Postviral Fatigue States" by A. Melvin Ramsay 1986
  • Assess defects in methylation genes
  • Assess MTHFR gene polymorphisms
  • Do whole exome sequencing
  • Do gastric emptying study
  • Assess hydrogen levels in breath (SIBO testing)
  • Contact Dr. Alaedini regarding his recent gut findings. Alaedini just received an NIH grant to assess the presence of novel response to gluten in ME/CFS and the incidence of gut permeability
  • Do gut microflora analysis down to the species level (use Lipkin's unpublished findings to guide approach to the gut microbiome).
  • Study “hidden” gut infections using comprehensive PCR stool testing.
  • Do detailed gynecological history. The CDC studies on gynecology indicate an astonishingly high prevalence of gynecological issues pre and post ME/CFS.
  • Ask if colds reduce ME/CFS symptoms (from five people whose ME/CFS symptoms get better during a cold
  • Examine the incidence of autoimmune and other disorders in the patients and their families
  • Assess the prevalence of Ehlers Danlos Syndrome, POTS, gastroparesis and other autonomic system disorders
  • Examine the incidence of undiagnosed and treatable disorders and conditions such as sleep apnea, low vitamin D and magnesium levels.
  • Assess the incidence of polio in mothers whose children came down with ME/CFS ("Six women including my wife were in attendance at that meeting. In casual conversation, these women were stunned to learn that each of their mothers, at a young age, had polio before giving birth; and, now all six of these women had been medically-diagnosed to have ME/CFS."
  • Assess the prevalence of erythromyalgia
  • Examine the activity of hormones such as estrogen, testosterone (free testosterone), pregnenolone, and DHEA.
  • Examine T3 slow release
  • Do blood, saliva and 24 hour cortisol tests
Immune System[fright]

  • Full immunological panel - do 51-plex cytokine assay (reproduce Columbia study).
  • NK and T-cell functioning tests
  • Reflex autoimmune panel
  • Test IgG antibody functioning using vaccine challenges
  • Assess the autoantibodies found in postural orthostatic tachycardia syndrome (POTS) in ME/CFS
  • Do lip biopsy to assess the incidence of Sjogren's Syndrome
  • Test for adrenergic antibodies (could consult Dr’s Kem and Raj)
  • Check for Mast Cell Activation Syndrome (MCAS)
  • Check for allergies
Orthostatic Intolerance and Autonomic Nervous System
  • Assess rates of OI before and after exercise
  • Assess degree of hyperventilation present
  • Assess inverted blood pressure responses during tilt and plasma norepinephrine levels.
  • Do upright transcranial Doppler/ brain blood flow studies during tilt table testing
  • Assess B-12, Vit D potassium levels
  • Do full mitochondrial profile
  • Check for elevated CPK
  • Test for mycoplasma and gram negative bacteria in blood and stool
  • Test for enterovirus including coxsackievirus B + echovirus in blood, stool and gut biopsies according to Dr. Chia's protocol. Look for herpes simplex virus (aka Dr. Pridgen's findings in fibromyalgia).
  • Assess herpesvirus (1-7) levels using the most sensitive tests possible
  • Partner with Dr. Marshall at Ohio State to assess levels of suspected EBV enzymes. Marshall recently received an NIH grant to further this research.
  • [fright]
    Bacteria horde.jpg
    [/fright]Do a thorough history of all infections (Lyme disease, mononucleosis, measles, mumps, chickenpox, pneumonia, allergies. ) Use recently created antibody tests to create history of infection for each person
  • Study “hidden” gut infections with comprehensive PCR stool testing.
  • Assess Bartonella infections (Galaxy diagnostics). (Dr. Kaufman's testing suggests they may be commoner than we think.)
  • Assess the incidence of arthropod borne infections
  • Do saline wash or a swab of the sinuses and try to figure out what is growing in them. Contact Dr. Brewer
  • Assess the incidence or effects of present or past histoplasmosis infections. Question whether long term use of floroquinolines could contribute to ME/CFS
Peripheral Nervous System
  • Test for small fiber neuropathy (QSART) in the skin or cornea. (Very common in fibromyalgia)
  • Assess the prevalence of large fiber neuropathy as well (May be common in FM as well).
  • Check for evidence relentless headaches and cognitive loss. Do detailed migraine assessments. A recent study found very high rates of undiagnosed migraine in ME/CFS.
  • Assess sensitivities to sensitivities to light, sound, touch, clothing, and the incessant itching and why they are happening
  • Ask why low doses of many drugs are preferable in ME/CFS. Ask why low doses of drugs or other substances such as caffeine provoke the same responses in ME/CFS that higher doses of drugs and other substances do in healthy people.
  • Assess the incidence of mold sensitivity
  • Assess the prevalence of sensitivity to temperature changes
  • Assess the prevalence of relapses or symptom exacerbation during shifts in the weather.
  • Do neuropsychological testing using Dr. Shirley Bastien's protocols
  • Analyze instigating illnesses or events against symptom types to determine whether subgroups have common roots.
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The suggestions for investigating so many different processes should give the NIH a clue about the complexities of this disease. We are not going to be easily placated with an attempt to tell the ME/CFS community that it's "all in your head" or it's our "sickness behavior" causing our illness!
Well done. I need to get this list to my primary who feels he has license to ignore the disease altogether.
Astounding client input
This seems to cover all the complexity of these syndromes. Itis to be hoped the NIH will take it on board
So many excellent questions....let's hope for the answers to some!

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