Open Stanford, California, USA: Potential Role of Tetrahydrobiopterin Deficiency in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

forestglip

forestglip

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Stanford Medicine: Potential Role of Tetrahydrobiopterin Deficiency in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

You are invited to participate in a research study of chronic, unexplained fatigue, which is a kind of fatigue that does not improve with rest. Medically unexplained fatigue is a symptom of Chronic Fatigue Syndrome and it may be present in other chronic diseases and conditions. Our overarching goal is to learn what causes this form of fatigue, how to diagnose and treat patients with this debilitating symptom, and how to differentiate the mechanisms of illness in ME/CFS from other complex multi-system illnesses. This research study is specifically designed to address whether individuals with fatigue have a deficiency of the cofactor tetrahydrobiopterin, or BH4.


Please confirm that none of these conditions apply to you:
  • I am below the age of 18.
  • I am pregnant or lactating.
  • I have been diagnosed with an inborn error of metabolism that requires me to restrict protein intake. (e.g. hyperphenylalaninemia.)
  • I have severe anemia, active bleeding, or other medical conditions whereby the removal of extra blood tubes can endanger my well-being.
  • I have a chronic infection with Human Immunodeficiency Virus (HIV), Hepatitis B (HBV), or Hepatitis C (HPC).
  • I have been diagnosed with cancer, chronic renal disease, or other clinically significant medical issue that could explain my ME/CFS symptoms.
  • I am currently using illegal or illicit substance(s).

Link

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Also from the email about this:

We are also recruiting healthy volunteers to participate in this study. Please note that healthy volunteers must not have any blood relations with you. If you know anyone who might be interested, please feel free to forward this email to them.

Instructions for Healthy Volunteers:
 
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Non-specific cohort of fatiguing conditions so I'm skeptical on what they will really be able to learn about "how to differentiate the mechanisms of illness in ME/CFS from other complex multi-system illnesses."

From the study page interest form...
"This study is open to individuals with fatigue who have one or more other diagnoses, including:
  • postural orthostatic tachycardia syndrome (POTS)
  • Ehlers Danlos Syndrome
  • multiple sclerosis
  • fibromyalgia
  • post-treatment Lyme disease
  • Gulf War Illness
  • systemic lupus erythematosus
  • dermatomyositis
  • Sjogren’s Syndrome
  • other autoimmune disease. This is not an exhaustive list, but persistent fatigue must be a chief complaint."
 
This appears to be open to anyone in the USA for the first stage, which is sending a DNA sample by mail. A subset of the participants will be asked to come to Stanford for the second stage, but as far as I can tell, they don't require you be able to travel there if you just want to do the first stage.

Not totally clear, but I applied, and it didn't disqualify me for marking that I am unable to travel to Stanford. It did also ask if I'd be willing to do further participation by mail, so maybe the second stage can be done remotely as well.

From the consent document:
The study consists of two parts, including a screening phase and a testing phase. The screening phase involves collecting information online and sending sample collection kits through the mail. Enrollment will occur in the United States, including US citizens and individuals visiting the United States from other countries. We expect to enroll 1,000 individuals with ME/CFS and 1,000 individuals with Long Covid to provide DNA samples through the mail. A subset of individuals from the screening phase will be invited to Stanford University for more comprehensive follow-up testing. For the in-person study visits, we will recruit up to 100 healthy individuals to serve as age- and gender-matched controls.
Click to expand...
 
The ME doctor I saw 30 years ago didn't require fatigue as a symptom. His diagnosis was based on history, 20+ years experience, onset, length of illness and most importantly r/o other illnesses first.
 
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