Founder of Health Rising and Phoenix Rising
On February 10, the IOM released its new diagnostic criteria for SEID (ME/CFS). There are only three required symptoms: six months of fatigue, post-exertional malaise, and unrefreshing sleep. An additional requirement is either 1) orthostatic intolerance and/or 2) cognitive impairment.
Are the new IOM diagnostic criteria accurate for early onset illness? Or will they miss patients who have only recently contracted ME/CFS?
And if recently ill patients are left undiagnosed, what are their chances of receiving appropriate treatment and medical advice?
To find out whether the new diagnostic criteria will encompass recently ill patients we need to know what the initial symptoms of ME/CFS are. The only people who can answer that question are the patients themselves.
What were your first symptoms of ME/CFS? Let us know in our short 3-minute survey.
The survey, offered by the Massachusetts CFIDS/ME & FM Association, will be open until midnight (U.S. Eastern Time) April 17, 2015.
You can take the survey HERE.
Why a survey about early onset symptoms?
The evidence used by the IOM Committee to determine the diagnostic criteria was based primarily on studies of chronic patients who are ambulatory and can get to specialized clinics. There has been little research done on the newly ill, the most severe bedbound patients, and those who do not have access to specialized clinics.
We need to develop a base of knowledge about one of these groups, the newly ill. We wonder whether the symptoms experienced by the newly ill would look the same as the chronically ill (over 3 years) since there is evidence from a recent study performed at Columbia that the biological process may be different in the early stage of the disease.
This survey should provide an indication of whether the symptoms at the beginning of the illness will be easily recognized using the IOM diagnostic criteria.
Summarized results will be presented to the CFSAC IOM Working Group, which is preparing material for a full discussion of the IOM report in the next public meeting of the Chronic Fatigue Syndrome Advisory Committee.
If you are an ME/CFS patient, we would love to have your response. Thank you for participating in the survey!