International Alliance for M.E.

International Alliance for M.E. or IAFME is a collective based in Geneva, Switzerland, comprised of advocacy and patient groups throughout the world. The group was launched in 2018 by Action for ME, a UK advocacy group. IAFME aims to lead a coordinated and appropriate public health response to Myalgic encephalomyelitis from the World Health Organisation (WHO), a specialized agency of the United Nations which is headquartered in Geneva, Switzerland.

Origin
The initiative for IAFME was taken by the British patient organization Action for ME. Through international advocacy and collaboration the aim is to get ME on the international policy agenda and to raise awareness at the highest political level. One of the main goals is the adoption of a World Health Assembly (WHA) resolution that recognizes ME as a chronic debilitating disease and calls for accelerated biomedical research into ME. The executive director of IAFME, Alexandra Heumber, had previously led the advocacy for the adoption of the Mycetoma (a neglected inflammatory disease) WHA resolution.

Members
IAFME is comprised of may different patients organisations from multiple countries. It includes Emerge Australia, Japan ME Association, ME CFS Foundation South Africa, The American ME and CFS Society, United States, Forward ME (a collective of British ME-organizations led by the Countess of Mar) and two Spanish organizations: Sensibilització Central and Plataforma Familiars Fm-SFC-SQM. The actions and letters of IAFME are supported by many more ME patient organizations and advocates.

The Chair of the IAFME is the Chief Executive of Action for M.E., Sonya Chowdhury, while Dr Heidi Nicholl, CEO of Emerge Australia, acts as Vice-Chair.

Executive Director of IAFME is Alexandra Heumber a former international advocate for Médecins Sans Frontières, and former Head of Policy for the Drugs for Neglected Diseases initiative.

Projects:
On May 12 2018, IAFME organized a MillionsMissing event in front of WHO headquarters, Geneva, Switzerland. A letter was send to Dr Tedros Ghebreyesus of the WHO calling for urgent action action to address M.E. globally. IAFME asked the WHO to recognize ME as a chronic multisystem disease and to “support accelerated biomedical research to develop better diagnostic methods and treatments for M.E.”

On December 4, 2018 IAFME produced a trans-national consensus document called “Recognition, research and respect: An agenda for change in ME”. It was supported by  over 60 clinicians, researchers, and non-governmental organisations from 28 different countries. The signees include BACME, UK CFS/ME Research Collaborative and Euromene.

The consensus document had three aims: 1) To provide an overview of M.E. and the disease burden, 2) To highlight barriers to progressing research in the M.E. field, 3) To propose an agenda for change.

The document demanded that definitions of ME include the hallmark symptom of the disease: post-exertional malaise and to retire the broad Oxford and Fukuda criteria. The text reads: “Treatments, such as CBT and GET, tested using the criteria which does not require post-exertional malaise, should not be recommended for people with ME.” The document states that disease experts do not recommend GET or CBT but instead that patients manage their activities to stay within their “energy envelope” to prevent crashes. It also highlighted another problem in ME research, namely the lack of sick controls to show that changes are unique to ME rather than generic ill-health markers.

The IAFME document has been applauded by ME advocates such as Mary Dimmock but criticized by others. Ellen Goudsmit argued that it is too focused on the literature of proponents of cognitive behavioral therapy and doesn’t include information about pacing. Jerrold Spinhirne argued, referencing to the multiple ME outbreaks, that it is incorrect for the document to call ME a noncommunicable disease.

Services
IAME offers a formal consultation channel to WHO and its Member States.

Notable people

 * Sonya Chowdhury Chief Executive, Action for ME

Projects

 * May 12 2018, IAME organized a #MillionsMissing event in front of WHO headquarters, Geneva, Switzerland.
 * May 12, 2018, IAME wrote a public letter to WHO requesting a meeting with representatives from the International Alliance for M.E.

Online presence

 * Website
 * Twitter
 * Facebook (group/page)