On Oct 14 in Washington, DC, the 11-member Chronic Fatigue Syndrome Advisory Committee ended their 3-day meeting with a discussion in which they:
• Strongly urged federal support for building a network of ME/CFS clinical/ research/ training centers for the abysmally underserved population of patients suffering with this serious, debilitating multisystemic illness.
• Unanimously voted to recommend that the name of the disease be changed in common federal language/usage (and by those publishing papers, etc.) to ME/CFS. (Presumably also changing CFSAC to something like ME/CFSAC.)
The Committee agreed this is still an imperfect name pending research to clarify triggers/etiologies/subsets, but is a move away from the unscientific name that has encouraged the medical community and public to belittle patient suffering as simple tiredness.
By using simply ‘ME’ they suggest the name recognizes that the acronym has been used to refer to either the broader myalgic encephalopathy (roughly, a disorder or disease involving muscle pain and damage to the brain and spinal cord of unknown origin), or the more specific myalgic encephalomyelitis (a disease or disorder involving muscle pain accompanied by inflammation of the brain and spinal cord). They also recognize that a different & more specific name/or names is likely to emerge as more is known.
The Advisory Committee also discussed the great need for collaborative communication between the CFSAC and CFS research leadership within the Centers for Disease Control (CDC) – for example, explicit discussion of plans and of progress against clear plans with the CFSAC. In that regard, the CDC is about to select a new Chief of the Chronic viral Disease Branch, which has primary responsibility for direction and substance of the CFS research program. See the public testimony on this issue by IACFS/ME President Fred Friedberg, posted via the Co-Cure Listserv.
They also discussed at length the need to better understand the FDA’s guidelines for the therapeutic drug study/trial, review, and approval process.
To listen to this entire 2.5-hour session (2-4:30 pm Oct 14) – and all other sessions of the 3-day CFSAC meeting, go to http://hhs.granicus.com/viewpublisher.php?view_id=5.
For a history of the name "chronic fatigue syndrome" and Name Change efforts, see:
• “Why ME/CFS? A perfect name isn’t necessary, but a respectable name is essential,” July 2007, by Karen Lee Richards.
• “A Disease in Search of a Name: The History of CFS and the Efforts to Change Its Name,” January 2007 by Karen Lee Richards.
To read the first general media report on the CFSAC's name change recommendation out of Washington, published Oct 14 by MedPageToday, see http://www.medpagetoday.com/InfectiousDisease/GeneralInfectiousDisease/22756