For many years people with myalgic encephalomyelitis (ME) – called chronic fatigue syndrome (CFS) in the U.S. – have suffered from misdiagnosis and poor treatment. Why? There are two primary reasons:
The name 'chronic fatigue syndrome' is not taken seriously by most people, including a large number of medical professionals, because it sounds like the patient is just tired. In actuality, fatigue is only one of many symptoms – some very severe – associated with this disease.
The diagnostic criteria (“Fukuda”) used in the U.S is watered down and so general that it can apply to a number of other illnesses, including depression. This is a major reason CFS research so often yields such mixed results. When studies use participants who do not actually have CFS but are included because they meet the weak Fukuda criteria, there is no way the results can be accurate.
If you have any doubts about the seriousness of these two issues, I urge you to read “Fatigue is not a Disease” – a short but very powerful article that puts a face on some of the devastation caused by an inaccurate name and a weak diagnostic criteria.
What Is Being Done?
On May 12, members of the ME/CFS community banded together and sent a letter to DHHS (the Department of Health and Human Services) asking for a change to both the name and the criteria. Thus far that request has been ignored, so the letter is being followed up with a petition. The goal is to gather 25,000 signatures in 30 days in order to capture the attention of DHHS.
You may be skeptical about whether the government will listen – even when 25,000 people ask them to. Normally I would be, too. But now, for the first time, our government is paying more attention to ME/CFS – thanks in large part to the efforts of Bob and Courtney Miller.
You may remember that last March I shared a video with you of Courtney Miller, whose husband Bob has ME/CFS, confronting President Obama at a Town Hall meeting about the lack research funding for ME/CFS. As a result of that interaction, in July President Obama asked the National Institutes of Health and DHHS to elevate ME/CFS in priority and assigned his Deputy Chief of Staff to follow their efforts.
That means this may be our best chance ever to convince DHHS that the proposed changes are critical to improving diagnosis and treatment for people with ME/CFS.
How Can YOU Help?
I strongly urge you to join me in signing the petition to DHHS. Whether or not you have ME/CFS or know someone who does, please help make a difference for the over one million people who suffer daily from this devastating, and often very painful, disease. It will take less than two minutes of your time but can do so much to help.
Published On: June 07, 2013