International Alliance for M.E.

International Alliance for M.E. or IAFME is a collective 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 in 2016. 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 targets 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, has previously led the advocacy for the adoption of the Mycetoma (a neglected inflammatory disease) WHA resolution.

Members

IAFME is comprised of may different patient 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 Head of Policy for the Drugs for Neglected Diseases initiative.

Projects

9 November 2016: protesting the Edward Shorter lecture

On 9 November 2016 the ME/CFS International Alliance, a predecessor of IAFME, published a protest letter against the planned lecture of historian Edward Shorter at the National Institutes of Health. The letter listed ME/CFS advocates such as Carol Head and Jennifer Brea as "current members of the International Alliance", even though these persons did not gave formal consent to joining or supporting a new organisation. ME patients were suspicious of the International Alliance as very little information was given about the organisation except for what appeared on the website of Action for ME, the UK charity that was behind the initiative. Nothing was heard about International Alliance until the existence of IAFME was announced one and a half years later.

12 May 2018: MillionsMissing at Geneva

On 12 May 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.”

4 December 2018: the trans-national consensus document

On 4 December, 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, the 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 demands 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. The IAFME also highlights 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 adequate information about pacing. Referencing the multiple ME outbreaks, Jerrold Spinhirne argued that it is incorrect for the document to call ME a non-communicable disease.

Online presence

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myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

World Health Organization (WHO) - "A specialized agency of the United Nations that is concerned with public health. It was established on 7 April 1948, and is headquartered in Geneva, Switzerland. The WHO is a member of the United Nations Development Group. Its predecessor, the Health Organization, was an agency of the League of Nations." The International Statistical Classification of Diseases and Related Health Problems (ICD) is maintained by WHO.

See World Health Organization.

See myalgic encephalomyelitis.

biomedical research basic medical research on organisms, such as humans or other living things, that helps increase medical knowledge. (Learn more: me-pedia.org)

See chronic fatigue syndrome.

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

See Graded exercise therapy.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

See cognitive behavioral therapy.

Energy Envelope Theory A self-management tool developed and tested by Dr. Leonard Jason to reduce symptom severity and the frequency of post-exertional malaise or relapses for people with ME/CFS. According to this theory, ME/CFS patients should not expend more energy than they perceive they have, as this results in post-exertional malaise and higher disability. Instead patients are advised to stay within their energy envelope, meaning the physical limits the disease has imposed upon them. As the energy envelope theory also cautions about the dangers of under-exertion, its principles are almost identical to ‘pacing’, an activity management strategy for ME patients devised by Ellen Goudsmit in the UK.

flare-up A symptoms flare in ME/CFS is a temporary increase in symptoms, alternatively known as experiencing post-exertional malaise. May be referred to as a "crash" or "collapse".

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.