Given the many name change debates and surveys, patients have favored using the term myalgic encephalomyelitis (ME). This seems to have been the overall consensus over time. Last year we put up the petition, along with RESCIND, to call for the recognition of ME. Finally patient’s requests have been considered and were reflected in the proposal put forth by the name change workgroup (NCW).
The NCW has finally presented a real, viable opportunity for the name change effort. We see this proposal first and foremost as a means by which to get official recognition for ME and we are working with the NCW to get some clarifications and improve upon some of the content and wording of the draft proposal. And most importantly, it calls for the recognition of ME as originally described by Ramsay, NOT just as another name for CFS.
Simply changing the name at this point will not solve our problems. There has been unfortunately considerable misinformation regarding the NCW proposal, particularly that it was putting forth chronic neuroendocrineimmune dysfunction syndrome (CNDS) as the new name for CFS, but this is not the case.
At ALL conferences and meetings the need for the identification of subgroups has been viewed as critical and this proposal takes the much needed first step. The workgroup took a sound, simple and logical approach – to pull out of CFS that which could be recognized and identified at this point, without getting into renaming or redefining anything.
Most importantly, even beyond the name, there has been considerable harm done by confusing ME with other entities. Unfortunately, at this point, many simply believe and have been told that ME is JUST another name for CFS, which is why it is critical to implement these recommendations. Separating the two clearly indicates that they are not. Up until now, those who fulfill the Fukuda criteria and are given a diagnosis of CFS might not even have cognitive difficulties or post-exertional malaise but still meet the criteria. Certainly, those who defined these criteria were unfamiliar with the basic symptoms of ME.
This recommendation may not solve all our problems but it represents a much needed step in the right direction. Not the least of which, – even if NOTHING else occurs in research – those with “true” ME will not be expected to exercise their way to health.
Regardless of what umbrella term is selected, or even if one is ever selected, the sub-groups as recommended, particularly ME, need to be recognized, be introduced into our dialogue, our conversations with physcians, our interviews with the media, and our advice to researchers.
The US made a big mistake in introducing CFS. The past cannot be changed, but the implementation of these recommendations could be our way of beginning to undo the problems it has caused by officially helping to give ME – in its original form – back to the rest of the world. If these recommendations are accepted, it will in fact gain official recognition and provide a good opportunity to get the attention of the medical community, media and general public, and thereby increase understanding and raise awareness.
This name change recommendation, which includes ME – made by an officially appointed federal committee – could be the ultimate awareness project. Do we want to continue to look for the perfect name or solution, which may not exist, or continue to argue about it for another decade? Or meanwhile waste more time constantly explaining and continuing to correct and protest all the misinformation or misunderstandings of CFS?
Protest may be warranted and effective under certain circumstances. But lets not allow protest to become the only thing we know how to do and the only way we know how to respond. Perhaps we should try more general awareness and look to determine how to prevent things which may not be in our best interests from happening which we will have to protest.
Patients need to continue to support this endeavor, seize this opportunity, and move on. Here’s to a better and healthier future.
[an association for CFS]
Needham, MA 02492
The petition to call for the recognition of ME is located at: http://www.petitiononline.com/MEitis/petition.html