International Fibromyalgia and ME/CFS
and other CSS (MCS-EHS) Awareness Day
May 12th, officially marks the World Fibromyalgia and Myalgic Encephalo-myelitis/Chronic Fatigue Syndrome Awareness Day, although other Central Sensitization Syndromes have been included, such as Multiple Chemical Sensitivity and Electro-Hypersensitivity.
The date of May 12 was chosen in memory of the nurse Florence Nightingale (born 12 May 1820), founder of the first modern school of nursing and who fought for the rights of people who suffered disabilities in the Crimea War.
It is thought that Florence Nightingale suffered from fibromyalgia or chronic fatigue syndrome for much of her life.
In tribute to this pioneer of modern nursing, May 12 also marks the International Day of Nurses.
Currently, both fibromyalgia and CFS/ME are included in Central Sensitization Syndromes, a relatively recent concept that encompasses other processes such as multiple chemical sensitivity and electrohypersensitivity, as well as restless legs syndrome, irritable bowel syndrome, etc., many of them related to each other but with their coding and their own characteristics.
Fibromyalgia (FM) is characterized by generalized pain, which can be constant or fluctuating, affecting mainly muscles and tendons, without any apparent injury being observed. This pain can be very severe and is often accompanied by unrefreshing sleep, extreme tiredness, headaches, and cognitive disorders, among other symptoms.
Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) causes significant and persistent fatigue after small efforts, both physical and mental, that worsens with activity and does not improve with rest. It often also causes a decrease in cognitive performance, insomnia and non-restful sleep, muscle and / or joint pain, among other symptoms.
Multiple chemical sensitivity is the loss of tolerance to chemical substances present in the environment (fuels, solvents, pesticides ...) and commonly used products (air fresheners, disinfectants, perfumes, softeners ...), which manifests itself with symptoms in different organs and systems, when exposed to small amounts of various chemical agents.
Electrohypersensitivity is intolerance to the electromagnetic fields found in our environment (mobile telephony, Wi-Fi, high-voltage lines ...) and causes symptoms of different intensity in affected people, to the point of damaging their professional, academic and familiar life.
These are diseases that affect different body systems and cause, among other symptoms, an increased sensitivity to environmental factors. These are illnesses of irregular evolution, which can cause that sometimes people can maintain their day-to-day life normally and that, at other times, pain, tiredness or hypersensitivity becomes incapacitating and prevents them from living a normal life.
The symptoms are not visible, but the impact on the lives of people who suffer from them is devastating. Their quality of life is diminished and they often suffer misunderstanding in the family, social, school, work and health environment. In the most extreme cases, affected people are forced to stay home. These are emerging diseases that increasingly affect more population, and also younger.
By improving prevention and avoiding the use of toxic and polluting agents and exposure to harmful electromagnetic fields, we will benefit the health of affected people and of all citizens.
For several years, on the FM and CFS/ME Awareness Day, orange ribbons were distributed as a color linked to the demand for equal opportunities for people with disabilities; since, internationally, it's been established the ribbon went dark blue or purple as a symbol of these syndromes, without having finished defining a color that embraces all. Generally, we might find more purple or purple ribbon tie to FM, and blue (in various shades) more linked to CFS/ME. Regarding MCS, yellow, green or a combination of yellow and green ribbons have been used.
In 2005, in order to keep the meaning of the first ribbon that we used while we were adopting the blue colors that were used in other countries, the image of a blue ribbon on an orange background was designed to represent both.
In the commemorative acts of the FM and CFS/ME (and also of MCS and EHS) Awareness Day, as well as in other events of dissemination and social awareness, these ribbons are distributed between citizens, in order to give more visibility to these syndromes and in order to ask for a gesture of solidarity and support for the people affected.
As we communicated on March 9, 2020, making the precautionary principle prevail and in order to contribute to the prevention and containment of the SARS-CoV-2 coronavirus, causing the respiratory infection Covid-19, the ACAF SUSPENDED its habitual face-to-face activities (mutual aid groups, workshops, talks, etc.) as well as the postponement of scheduled face-to-face public events (workshops and conferences). However, during this time, ACAF has adapted its program ofactivities to online participation, with functional recovery workshops, memory training workshops, updated information on home care and commerce, information of interest to the collective (Biorritmes magazine, publications, articles, audios and videos on confinement and diseases ...), etc.
Despite the exceptional circumstances, the ACAF has continued to work to improve the quality of life for those affected:
- offering attention, information and guidance by phone, email and social networks
- adapting its activity to bring it closer to sick people in confinement
- transferring relevant and interesting information for the collective of people affected by central sensitizacion syndromes
- with the Department of Health of the Government of Catalonia for the improvement of care for affected people (social and health care, PPE, etc.)
On a day like today we again appeal to the empathy of people, civil society and administrations to adhere to this day, to better understand the complexity of what lives and suffers more than 3% of the population in Catalonia , in order to advance in the knowledge, prevention and sanitary and social approach to these diseases.
Although every day we count with more support from the administration and many health professionals, we still have a lot of work to do so that people affected by Central Sensitization Syndromes have the medical care, social recognition and support that they need, so that they can achieve the best possible quality of life. Surely, joining efforts, we can continue to advance on this path of normalization and recognition.
This year, due to the exceptional situation, it will not be possible to set up information tables in the street or to hold face-to-face information events. However, the work of information, dissemination, social awareness and visibility that we carry out does not stop and, among other events that we are organizing, we can advance the following:
On the occasion of the commemoration of World Awareness Day, this year, together with the FM-CFS-MCS Relatives Platform, we promoted a social awareness campaign to illuminate many places in #CatalunyadeBlau, in order to give visibility to the diseases and in solidarity with the people affected. In some municipalities that could not be able to have lighting, they'd also show solidarity with various actions (ties, banners, networks ...).
Among others, the following municipalities and institutions joined the campaign:
Amposta, Artés, Balaguer, Banyeres del Penedès, Banyoles, Barcelona, Berga, Besalú, Calaf, Calafell, Callús, Capellades, Cardona, Cassà de la Selva, Castellar del Vallès, Celrà, Cervera, Cornellà de Llobregat, Cubelles, Deltebre, El Pont de Suert, El Vendrell, Falset, Figueres, Girona, Hospitalet de Llobregat, Igualada, L'Ametlla del Vallès, L'Arboç, La Bisbal d’Empordà, La Bisbal del Penedès, La Roca del Vallès, La Vall de Boí, La Seu d'Urgell, Les Borges Blanques, Linyola, Lleida, Malgrat de Mar, Manlleu, Manresa, Masquefa, Mataró, Moià, Molins de Rei, Mollerussa, Montblanc, Montmell, Móra d'Ebre, Navarcles, Navàs, Òdena, Olèrdola, Olesa de Montserrat, Olot, Palafrugell, Palamós, Palau-solità i Plegamans, Piera, Puigcerdà, Reus, Ripoll, Roda de Berà, Sabadell, Sallent, Sant Adrià de Besòs, Sant Cugat del Vallès, Sant Feliu de Guíxols, Sant Feliu de Llobregat, Sant Fruitós de Bages, Sant Joan de Vilatorrada, Sant Llorenç d'Hortons, Sant Martí Sarroca, Sant Miquel de Balenyà, Sant Pere de Riudebitlles, Sant Sadurní d’Anoia, Santa Bàrbara, Santa Coloma de Farners, Santa Margarida i els Monjos, Santa Oliva, Santpedor, Sarral, Sitges, Solsona, Sort, Súria, Tarragona, Tàrrega, Terrassa, Torrelavit, Torroella de Montgrí, Tortosa, Tremp, Valls, Vic, Vielha e Mijaran, Vilanova del Camí, Vilanova i la Geltrú
Gran Teatre del Liceu, Teatre Nacional de Catalunya, Il·lustre Col·legi de l'Advocacia de Barcelona, Diputació de Girona, Diputació de Tarragona
Palau de la Generalitat i Palau Robert - Generalitat de Catalunya