Health Rising’s Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia How To Project

Health RIsing’s How To Project aims to make it easier for people with chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) to quickly get information on how to get diagnosed, get treated and get support. It’s produced by providing links to studies, books, articles/blogs, forums and social media that provide ways to, as well as possible, successfully deal with these illnesses.

Please bear in mind that the How To Project is put together by laymen. No claim to comprehensiveness is made. In fact, a strong request is made for volunteers to support this project. If there’s an area you have some knowledge or experience in and would like to support this effort, please contact Health Rising. Suggestions on how to organize or to make this effort more effective are welcome.

Reliability Ratings

The following categories reflect an initial attempt to provide a reliability rating for each recommendation. The question is how likely a recommendation may be valid for any individual patient.

Recommendation Source

Assessment Suggested Reliability Factor
Large Study Result (over 75 participants) Probably highly reliable but may not apply to any one patient  High
ME/CFS/FM Experts Consensus Recommendation Based on experiences with 1,000’s of patients  High
ME/CFS/FM Expert Doctor Recommendation Based on the experiences of one or more expert ME/CFS/FM physicians Good
Major Medical Website Recommendation UpToDate, WebMD, etc.- consensus recommendation which may not reflect ME/CFS/FM patients’ needs Moderate
Small ME/CFS/FM Study Result (< 75 participants) Needs validation Low to moderate
Patient Recommendation Anecdotal evidence from someone within a highly heterogeneous group of patients Low to moderate

Please bear in mind that the chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) communities are highly heterogeneous with patients often reacting differently to treatments; i.e. except for recommendations to pace, there may be no such thing as an ironclad recommendation. Because some people can react very strongly to treatments, it’s always advised to start low and go slow.  Please confer with your health care specialist before following any recommendation.

Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia How To’s

The Basics

Disease Overviews

Symptoms and Diagnosis  – ME/CFS /  FM

Tips for Newbies

Finding a Doctor

Pacing

Exercise

Tracking Your Health

Getting Disability

Surviving Surgery

Clinical Studies Underway

Treatments

Sleep

  • Sleep hygiene
  • Drugs
  • Supplements
  • Tools for better sleep
  • Sleep websites
  • How to do a sleep study

Gut Issues

  • Diets
  • SIBO
  • IBS
  • Fermented products
  • Ken Lassesen – other blogs
  • Getting tested

Boosting Energy

  • Drugs
  • Supplements
  • Heart rate based exercise

Post-Exertional Malaise

  • Ways to reduce

Orthostatic Intolerance (Troubles Standing)

  • POTS
  • Blood volume
  • Other forms of OI

Pain

  • Diagnosis – types of pain
  • Migraine
  • Drugs
  • Supplements
  • Behavioral Approaches
  • Tools
  • Pain Resources

Pathogens

  • Testing
  • Treatment Approaches
  • Recovery stories
  • Doctors

Gynecological Issues

  • Prevalence

Supplements

  • How to take supplements
  • Saving money on supplements
  • B-vitamins, magnesium, etc.

Chemical Sensitivities

Mood Issues

  • Why ME/CFS/FM is not depression
  • Self -Tests
  • Websites
  • Suicide resources

 

 

 

 

 

 

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