About 6 to 12 million American men, women and children are estimated to have a fibromyalgia (FM) diagnosis; 900,000 Canadians; and about 230 - 460 million (3-6% of world population) worldwide.
There is much overlap with chronic fatigue syndrome and fibromyalgia criteria and comorbidities. It seems the only differential component between the two for many decades was persistent widespread pain for FM and tender points. Majority of doctors were not trained to diagnose myalgic encephalomyelitis (ME) or chronic Lyme disease which do have pain symptoms. Then in the last 2 decades, doctors have been more informed of fibromyalgia criteria and not CFS. This results in many people being misdiagnosed with the FM soft tissue disease and not CFS, ME, or chronic Lyme disease.
One main defining factor that distinguishes FM from ME is that cognitive behavioral therapy (CBT) combined with Graduated Exercise Therapy (GET) is ineffective and oftentimes very harmful to patients with ME. Aerobic activities using GET for FM patients have shown to be beneficial for pain reduction.
A change to the CDC website after 2017, for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS-SEID criteria) encourages pacing to balance rest and activity to avoid flare-ups, which can be caused by physical and mental exertion that patients with ME/CFS-SEID cannot tolerate. Therapists specializing in CFS and ME state that aerobic activity is harmful due to dysfunction of mitochondria and metabolic pathways that cause muscles (and all other cells) to be unable to cope with the oxidative stress that is greatly induced by aerobic activity.
The ME/CFS-SEID criteria is a fatigue based diagnosis. Here is the background on the criteria. The global health governments’ refused to adopt myalgic encephalomyelitis criteria that were created by ME disease experts, and continued to redefine CFS with overly broad criteria.
In 2015, the USA Institute of Medicine [IOM, now known as the National Academy of Medicine (NAM)] relabeled a new CFS criteria with the term ME/CFS (May12.org uses the term ME/CFS-SEID to refer to this criteria) and including pain symptoms, thus confounding the criteria and leading the patients into thinking that ME was just another name for CFS without given the option of being properly diagnosed for ME.
SHARED DISEASE PATHWAYS:
Patients may have ME, fibromyalgia, undiagnosed Lyme disease (including chronic or late stage), exposure to those with Gulf War Illness, mold/biotoxin Illness, post-sepsis syndrome, and/or other undiagnosed/untreated conditions. These conditions also may be co-morbid. Please see May12.org Resources tabs for ME and Lyme for further information about diagnosis.
One of the initial patients in the Lake Tahoe, Nevada epidemic discovered he has mold/biotoxin illness. This is the outbreak that instigated the formation of CFS terminology. Over the years, other patients have identified with mold illness. Please see May12.org Resources tab OTHER for more information regarding mold/biotoxin illness, Gulf War Illness, and post-sepsis syndrome.
It is important to advocate for yourself and work with your doctor(s) on evaluating for disease. Most doctors have not been educated by the medical establishment on the knowledge that clinical experts have acquired on these diseases.
Remember most general practitioners and rheumatologists are trained to diagnose fibromyalgia, many do not have the updated training of CFS diagnosis (aka ME/CFS-SEID) that the CDC has recently updated. Almost all doctors are not trained on what ME is or how to diagnose it and the confusion of the CDC incorporating ME tied to CFS without informing of the ME criteria (aka ME-ICC) has led to more inappropriate care for undiagnosed ME patients.
In regards to research, the confusion over the criteria for FB, CFS, and ME has caused problems when research is done with improperly evaluated patients which can result in overlap and confusing results of research studies on these different diseases.
- Authors of our own misfortune?: The problems with psychogenic explanations for physical illnesses - by Angela Kennedy (2012)
- Project Daylily: An American Biowarfare Tragedy - by Garth L. Nicolson Ph.D. (Author), Nancy L. N (Author)
Websites & Blogs & Articles:
- Quick Facts on Fibromyalgia - American Chronic Pain Association
- How to Get On -- a self-advocacy guide for anyone who is homebound or bedbound in the US with a focus on ME, CFS, Lyme, Fibromyalgia.
- Fibro Doctors Chose Pfizer Over You - Fibromyalgia Network
- National Fibromyalgia Association
- Institute for Molecular Medicine - President Founder Garth L. Nicolson, Ph.D., M.D. (H)
- DxRevisionWatch by Suzy Chapman - monitoring the development of the United States Diagnostic and Statistical Manual of Mental Disorders (DSM-5) and International Classification of Diseases (ICD-11, ICD-10-CM), SNOMED CT and other classification and terminology systems as they pertain to post viral fatigue syndrome (PVFS), ME and CFS
We also recommend using these hashtags when sharing on social media:
#May12CureCIND #Fibromyalgia #ImmuneDeficiency #ImmuneSuppression #ResearchFraud #VaccineInjury #ReactivatedViruses #Science #HealthFascism #HealthFaucism #HealthFraud
- May12org FB page
- MEadvocacy.org FB Page
- North Carolina/Ohio ME & FM Support Group - ”This group welcomes all who are dealing with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Fibromyalgia, Gulf War Illness, Chronic Lyme Disease, MCS, Orthostatic Intolerance, POTS, and other dysautonomia diseases.”
- @May12org - Supporting #PwME #Lyme disease #VaccineInjury #GWI #PostSepsis *Complex Immunologic & Neurologic Diseases #ImmuneDeficiency #ReactivatedViruses #Science
- @MEadvocacy_org - A project of May12.org - Recognition, Definition, & Research for Myalgic Encephalomyelitis #MyalgicE #MEICC #SevereME #PwME #MEadvocacy #PwME4ICC
- @AngelaK11635746 - Was @academicange. Retired sociologist. My family - homeless disabled, carers - suffering lethal endangerment from Redbridge Council.