This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!


Friday, January 15, 2016

Uncovering the Causes of ME/CFS and Fibromyalgia

In a recent post I discussed the disease that I have- ME/CFS, or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.  Like many illnesses and disorders these days it is identified and diagnosed by a list of symptoms rather than a specific test (yet another thing it has in common with autism).  Because it's diagnosed by it's SYMPTOMS, rather than it's CAUSE, knowing that you have ME/CFS doesn't really tell you WHY you are sick- it is more of a "shorthand" way of describing your illness than an explanation of the illness.  Knowing that I have ME/CFS doesn't get me any closer to knowing what is making me sick or what to do to get better.  The cause- or causes, there may be many- are not be known, although there are a number of theories out there.  Because the diagnosis focuses exclusively on the symptoms, any attempts to treat it tend to also focus on mitigating the symptoms rather than figuring out what is behind them.  

Detection of Mycotoxins in Patients with Chronic Fatigue Syndrome
"Urine specimens from 104 of 112 patients (93%) were positive for at least one mycotoxin (one in the equivocal range). Almost 30% of the cases had more than one mycotoxin present. OTA was the most prevalent mycotoxin detected (83%) with MT as the next most common (44%). Exposure histories indicated current and/or past exposure to WDB in over 90% of cases. Environmental testing was performed in the WDB from a subset of these patients. This testing revealed the presence of potentially mycotoxin producing mold species and mycotoxins in the environment of the WDB. Prior testing in a healthy control population with no history of exposure to a WDB or moldy environment (n = 55) by the same laboratory, utilizing the same methods, revealed no positive cases at the limits of detection."

This research paper from 2024 includes some interesting information about the present understanding of ME/CFS, including that the diagnosis is associated with "various neurological, cardiovascular, microvascular, and skeletal muscular findings", and dysregulation of the receptor TRPM3 in natural killer (NK) cells.  "The Transient receptor potential melastatin 3 (TRPM3) channel, involved in pain transduction, thermosensation, transmitter and neuropeptide release, mechanoregulation, vasorelaxation, and immune defense" being dysfunctional "suggesting a role in ineffective pathogen clearance and potential virus persistence and autoimmunity development."  The authors of the paper "propose that TRPM3 dysfunction may have a broader involvement in ME/CFS pathophysiology, affecting other organs. This paper discusses TRPM3’s expression in various organs and its potential impact on ME/CFS symptoms, with a focus on small nerve fibers and the brain, where TRPM3 is involved in presynaptic GABA release."

In doing research for my own health as well as that of others I have come across a number of conditions and disorders that can be the cause of the symptoms that get labeled as ME/CFS (or Fibromyalgia).  I will be doing a post on each of these, to give background information and resources for testing and treatment.  These include:

Systemic Diseases:
MTHFR mutations
Mitochondrial disease and dysfunction
Ehlers-Danlos Syndrome
Neuro Immune Dysfunction Syndrome (NIDS)
Pyroluria
Acute Intermittent Porphyria

Autoimmune Diseases:
Lupus
Sjogren's Syndrome
Autoimmune Encephalitis
PANDAS/PANS
Cerebral Folate Deficiency
Narcolepsy

Digestive and Gastrointestinal Disorders:
Food intolerances and allergies
Gut dysbiosis and dysfunction
SIBO (Small Intestine Bacterial Overgrowth)
Celiac Disease
Gallbladder Disease
Eosinophilic Gastrointestinal Disease (EGID)
Chronic Pancreatitis
Habba Syndrome
Gastroparesis
Autoimmune GI Dysmotility
Celiac artery compression syndrome

Brain Injury and Neurological Disorders:
Encephalitis
Vestibular Disorders
Tinnitus
Sleep Disorders
     Narcolepsy
     Circadian Rhythm Disorders
     Delayed Sleep Phase Syndrome
     Hypersomnia
ADHD
Obsessive Compulsive Disorder
Misophonia
Trauma and PTSD
Dysautonomia a.k.a. Autonomic Dysfunction (includes POTS and Orthostatic Intolerance)
Complex Regional Pain Syndrome (CRPS) and here
Chiari Malformation and it's variations
Dystonia and here

Allergic Diseases, Immune System Diseases, and Infections:
Septic Arthritis
Immunodeficiency
Lyme Disease
Mast Cell Disease
Multiple Chemical Sensitivities (MCS)
Electro-Hypersensitivity Syndrome (EHS)
Toxicant Induced Loss of Tolerance (TILT)
Rosacea

Other:
Degenerative Spine Disease
Cushing's Syndrome
Endometriosis
Raynaud's Syndrome