Welcome to the damnation know as ME/CFS!

I have been involved with the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for over a quarter century. I have a Masters of Science with some Ph.D. Courses. I have been reading professional medical journals since I was 15 (part of an elite STEM program called Berg Science Seminars). I have read most of the research papers on ME/CFS. Attended conferences. Directly talked with many leading ME/CFS specialists: Kenny De Meirleir (Belgium), David Bell (USA), Cecile Jadin (South Africa), Dave Berg (USA) etc. A list of basic readings is here.

Your MD likely have had ZERO training

ME/CFS is not included in 99.8% of Medical Trainings. Their knowledge is likely by hearsay from colleagues or 5 minutes reading on WebMd. That is the harsh reality — you have an orphan condition. If you want to help yourself or your loved ones, you may have to self-educate and then educate your primary care giver.

Some simple questions to see if they have any knowledge at all:

  • “What is my Bell CFIDS disability scale?” (See MEpedia)
  • “Which of the virus associated with ME/CFS are you going to test for before picking an antiviral for me to try?” See this post: The right answer is EBV, HHV. Those are found in subsets and the antivirals works! (see this post on someone getting 90% recovered from an antiviral with literature to case studies

How is ME/CFS likely to effect you?

Often Mentioned

From MayoClinic, John Hopkins, Center for Disease Control,

  • Extreme exhaustion after physical or mental exercise.
  • Muscle or joint pain.
  • Unrefreshing sleep and insomnia
  • Headaches,
  • Sore throats,
  • Tender lymph nodes 
  • Low-grade fever
  • Shortness of breath
  • Night Sweats
  • Depression
  • Mood swings
  • Digestive issues, like irritable bowel syndrome
  • Hyper-reactivity/sensisitivy to:
    • Fragrance (perfumes and fabric softeners causing massive headaches)
    • Gluten
    • Sound
    • Light
    • Medicines

Less Spoken About

  • Alcohol Intolerance
  • Inability to hold a job
    • Disability Insurance claims will be repeatedly disallowed
    • Government Disability requests will be repeatedly denied
  • Rapid Heart Beat (Tachycardia) 
  • Postural Orthostatic Tachycardia Syndrome
  • Brain Scans will show low oxygen flow and inflammation CFS: Appropriate Brain Scans
  • Change of your blood and heart: (Index to studies)
    • 10.2% lower cardiac volume 
    • 35% lower peak oxygen consumption “
    • a reduction in red blood cell mass.
    • abnormalities of blood pressure variability
    • high percentages of misshaped or deformed red blood cell
    • impaired capillary blood flow.
  • Shorter life expectancy
    • “the mean age of ME/CFS patients dying from chronic heart failure is 25 years younger than the age of those dying from chronic heart failure in the general population” [2009]
    • “a significantly increased risk of earlier all-cause (M = 55.9 years) and cardiovascular-related (M = 58.8 years) mortality, “[2016]
      • all-cause ME/CFS: 55.9 yeara, Population 73.5 yeara
      • cardiovascular: ME/CFS 58.8 yeara, Population 77.7 yeara
      • cancer: ME/CFS 66.3 yeara, population: 71.1 yeara
  • Cognitive Loss [2019]
    • poor concentration,
    • memory loss,
      • verbal memory
      • visual memory
    • an inability to take in information,
    • a general reduction in cognitive ability 
    • verbal fluency
  • The Canadian Consensus Criteria recognizes the following comorbidities for ME/CFS:
    That is, conditions that ME/CFS may progress to if not appropriately treated to prevent.  See this study for odds.

Proposed Causes

“The causes of ME/CFS are complex and not yet fully understood. There is no cure yet.” [Australia Health]

From National Health Services (UK), Center for Disease Control

  • viral infections, such as glandular fever (and COVID)
  • bacterial infections, such as pneumonia
  • problems with the immune system
  • a hormone imbalance
  • stress affecting body chemistry
  • changes in Energy Production
  • your genes – ME/CFS seems to be more common in some families

Technically, you could get ME/CFS from a kiss. The kiss could give you mono (kissing disease aka glandular fever) and cascade into ME/CFS.

Treatments

There are no recognized accepted treatments for a condition that has been researched for over 100 years. Nothing is FDA approved.

There are studies and reports finding a high percentage of remission (over 80%) with specific treatments. Often these treatment has more complexity than “just take this pill” which is the norm for GPs. There are very very few specialists to hand the patient to and often ideological issues (i.e. doing 8 months of antibiotics with 2 different ones every month!). The problem is a lack of a simple treatment.

My own remission was caused by doing two treatments that each reported 80+% remission in conference papers. Despite this evidence, no one attempted to replicate the success of these treatments. My GP had to have her hand held (telephone calls) by the experts involved. It was overwhelmingly complex for her. Prescriptions were done off label — which many MDs are resistant to do.

My personal conclusion is that the majority of ME/CFS is the result of microbiome dysfunction that results in the body getting a bad mixture of enzymes and compounds (over 10,000 different items are involved). A microbiome dysfunction is complex to correct because every person’s microbiome is different. Only recently has low cost testing with good detail has been available, the best buy is Thorne’s Gut Health Test at $198. It typically reports on 3000 different bacteria (with up to 5000 in some samples). Getting a report on 5000 different bacteria levels is beyond the ability of most MDs to fully digest!

IMHO it is possible without the use of prescription drugs (hence the Microbiome Prescription web site targeting this goal using state of the art Artificial Intelligence). Every month, I get emails from people who have recovered or greatly improved with microbiome tests reflecting the improvements (See index)