“I don’t recall anything in the IOM report that states that the term myalgic encephalomyelitis, or ME, can not be used to describe who meets published ME criteria” – Lucinda Bateman – Global Chronicle 009 p 24
The Institute of Medicine/systemic exertion intolerance disease (IOM/SEID) criteria which the US Centers for Disease Control and Prevention (CDC) is currently promoting on their website and to medical professionals for diagnostic purposes does not define the distinct disease myalgic encephalomyelitis (ME). The National Institutes of Health is inaccurately recommending the use of the diagnostic IOM/SEID criteria as one of several choices of research criteria for studies at the NIH-funded ME/CFS Consortium Centers. Some NIH-funded researchers are already incorrectly selecting people for their studies using the IOM/SEID diagnostic criteria.
The criteria for chronic fatigue syndrome (CFS-Fukuda), systemic exertion intolerance disease (SEID-IOM) and the deceptive combination ‘ME/CFS’ do not define the disease ME.
What is ME?
Myalgic Encephalomyelitis (ME) is an acquired distinct disease, recognized and defined by international ME experts (Ramsay Criteria, Canadian Consensus Criteria (CCC), and the International Consensus Criteria ( ICC). ME is classified as a neurological disease by the World Health Organization (WHO). ME has appeared in 50+ outbreaks worldwide and in sporadic form – severely disabling millions of men, women, and children worldwide. It is a polio-like disease attacking the nervous system, reactivating viruses, and causing muscle weakness and pain. It becomes systemic, eventually affecting many body systems such as the immune, endocrine, metabolic, energy systems, and the heart.
What is CFS/SEID?
CFS and SEID are government constructed vague entities defined based on the common subjective symptom fatigue. HHS has repeatedly attempted to control the narrative about this disease with creations of overly vague definitions and demeaning names. HHS hoped that with their efforts in obfuscating the scientific and historical evidence, they will accomplish the disappearing of the disease (See evidence in a document obtained via FOIA request here).
ME is not CFS
The 2015 IOM report states in its opening paragraph: “Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious debilitating conditions that impose a burden of illness on millions of people in the United States and around the World.” (ME and CFS are described as two separate “conditions” – even though ME is a distinct disease and CFS is an assortment of conditions which are based on the subjective symptom- fatigue)
The ICC definition for ME is based on neuroimmune pathology which is consistent with the neurological classification of ME in WHO. It includes specific testing to aid in diagnosis including immunological and cardiology testing.
The IOM/SEID definition does not demand any neurological nor immune dysfunction. It is a simple checklist of 4 out 0f 5 subjective symptoms common to many chronic illnesses and does not require specific testing for diagnosis.
Reasons to Insist on Recognition of ME as per the ICC:
- Vague criteria such as the CDC’s Fukuda and IOM/SEID result in many people misdiagnosed with the disease. This harms everyone involved. Those who suffer from another condition will be stuck with a wrong diagnosis and wrong treatments. Those with the actual disease will get recommendations for inappropriate and possibly harmful treatments such as graded exercise therapy (GET) and cognitive behavioral therapy (CBT).
- The ICC, unlike the IOM/SEID definition, does not require a 6 month waiting period for diagnosis. The sooner one gets diagnosed, the sooner they can get recommendations for appropriate treatments. We know from experience that the sooner pwME start treatments such as rest, antivirals, immune modulators, the better their chances of improvements.
- Unlike the IOM/SEID which includes the symptom of post-exertional malaise (PEM), the ICC includes Postexertional neuroimmune exhaustion (PENE pen′‐e) which is a more accurate description of what pwME experience. The ICC acknowledges and addresses brain inflammation, whereas the IOM/SEID states there is no evidence of brain inflammation.
- The ICC was created for both – diagnostic and research purposes. The ICC authors knew that HHS has misused the intention of previous criteria. They, therefore, took the precaution of creating a set of criteria which could be used for both. In direct opposition of what ME stakeholders were promised, HHS is already recommending the use of their newest diagnostic criteria for research purposes.
- The problem with the use of overly broad criteria for research is that it creates confusing results because it is not targetting a specific disease. The lack of meaningful study results stunts scientific advances and recommendations for appropriate treatments for the disease.
- The IOM/SEID authors clarified that they did not take severe ME into consideration when creating their criteria. It is impossible to accurately define a disease by omitting 25% of the most severely affected. The resulting simple checklist of common subjective symptoms in the IOM/SEID does not describe ME.
- The IOM report states on page 23: “Because of the large number of results, the committee reviewed only papers published during the past 10 years with the understanding that older research is considered and cited in the introduction and discussion sections of more recent literature.” Dr. Ramsay’s important work and the critical evidence of ME worldwide outbreaks were not looked at by the IOM/SEID authors.
- The ICC recommends specific testing to aid in diagnosis. The IOM/SEID does not. The lack of directed testing will impede the ability of pwME to get insurance to pay for particular tests for ME. Additionally, it will be hard/impossible to get insurance coverage for ME treatments like antivirals because the IOM/SEID criteria do not include any symptoms of viral or inflammatory nature.
What You Can Do
ME is in danger of being erased by the efforts of HHS. Please take the time to read, join the over 4,400 who already signed and sign the petition for recognition of ME as per ICC. Please share widely. If each one of you gets another individual to sign, we can double the number of signatures.
Petition in English here
Petition in Dutch here
Petition in French here
Petition in Spanish here
Petition in Italian here
Petition in German here