The petition is doing really well. Here are additional reasons why this petition is so important. Please share the petition widely. The more signatures we gain, the more powerful our message will become.
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.
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