RISK OF SUICIDE DUE TO NEGLECT AMONGST PEOPLE LIVING WITH MYALGIC ENCEPHALOMYEILITIS/CHRONIC FATIGUE SYNDROME IN SPAIN:
FIRST SPANISH STUDY
LigaSFC May 12, 2016
“We will not be a just, advanced nor democratic country as long as there are people who have Myalgic Encephalomyelitis who continue being ignored and INVISIBLE”
Another International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Day is here. But do people with ME/CFS in Spain have anything to celebrate? No, it does not seem so. That is why the Spanish association of PWME (people with Myalgic Encephalomyelitis), LigaSFC, is launching this very important study by Juan Jimenez-Ortiz on the effects of neglect, mistreatment and lack of proper medical and social care which people with ME/CFS in Spain live with. .
For several decades, PWME in Spain, their associations and their lawyers, have been denouncing that this very serious neuroimmune illness, which affects one in 200 people, live with a great number of social and political factors which, added to their illness, severely reduce their quality of life and put them at risk of suicide (see the numerous articles by the Collectiu Ronda Lawyer’s Cooperative in Barcelona).
These factors include, mainly, a lack of access to relevant medical care and a precarious economic situation due the lack of pensions and other help which people too sick to work are entitled to in Spain. Also the lack of proper care of this illness by the health administrations results in a general lack of social support for PWME.
PWME in Spain have spent decades saying that all they want is what other people who are ill with other pathologies have. But they don’t seem to be listened to.
Socially aware and concerned Spanish psychologist, Juan Jimenez-Ortiz, has carried out a research study (for his PhD thesis by the University of Valladolid) with the title: “Depression, hopelessness in people with Myalgic Encephlomyelitis/Chronic Fatigue Syndrome: Risk factors and protection” (2016).
The results of this research study are highly worrisome. The high level of risk of suicide, depression and hopelessness in these patients is much higher than in the rest of the Spanish population due to, mostly, the lack of relevant health care services.
STUDY AND RESULTS
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is one of the Central Sensitivity Syndromes (CSS). Although there are still some questions regarding its etiology, the research done up to now attributes it to a significant alteration in the Central Nervous System which affects the immune and the endocrine systems. This produces severe symptoms of fatigue that is not solved by resting, immune dysfunction, cognitive problems, inflammations, and many more organic alterations.
Due to these dysfunctions and symptoms, PWME’s lives are severely disrupted. All activities of daily life are affected. Many studies, including this one by Jimenez-Ortiz, show that the effects of this illness as well as the institutional abandonment (health care and social care), added to the losses that such an illness produces (work, family and social relations) are related to depression, hopelessness and risk of suicide.
The objectives of this study by Jimenez-Ortiz were the following:
- To measure the incidence of depression, hopelessness and risk of suicide in a sample of Spanish PWME.
- To identify which sociodemographic variables or circumstances were related to suffering depression, hopelessness and risk of suicide.
- Concretize which variables could be modified to reduce the incidence of depression, hopelessness and risk of suicide.
- Propose a model of probability of depression, hopelessness and risk of suicide amongst PWME.
Jimenez-Ortiz proposed the following hypothesis:
- There is an incidence amongst PWME higher than the rest of the population of depression, hopelessness and risk of suicide.
- There is significant sociodemographic and clinical data (circumstances) regarding depression, hopelessness and risk of suicide amongst PWME.
- There are variables which can affect in a positive manner these circumstances.
In this study, 205 Spanish people participated, all of them diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 187 women and 18 men, between 27 and 71 years of age.
The participants were from the following Spanish Regions: 7 from Andalucia, 1 from Aragon, 1 from Asturias, 5 from the Canary Islands, 4 from Castilla La Mancha, 15 from Castilla y Leon, 102 from Catalonia, 7 from Galicia, 22 from Madrid, 1 from Murcia, 14 from Navarra, 5 from the Basque Country, 3 from La Rioja and 18 from Valencia.
The most significant result in this study is the incidence, amongst PWME, of risk of suicide which is 12.75%, compared to the incidence in the general Spanish population which is 2.3%. The incidence of depression amongst these PWME is 57.25%, compared to the incidence in the general Spanish population which is 4%. And the incidence of hopelessness amongst these PWME is 66.85% (there are no studies of hopelessness in the general Spanish population).
Some of the reasons which have been found to be associated in a significant manner to depression, hopelessness and risk of suicide amongst PWME, include:
To risk of suicide:
- Not having medical care.
- Having ME/CFS affect their capacity to earn a living and the worsening of the economic situation of their family unit.
- Having to turn to family members for help with activities of daily life.
- Not being listened to by doctors.
To depression and hopelessness:
- Having been put down and not treated properly by the health care system.
- Not having regular medical follow-up.
- Having been sent for psychological or psychiatric treatment and been labelled as “rebelious patient”.
- Having lost their job.
- Having lost friendships due to the illness.
- Not being believed when mentioning the effects on their health of chemical agents (chemical sensitivities).
- Having had their intimate (sexual) relationships affected by ME/CFS.
- Having had ME/CFS affect their economic situation.
CONCLUSIONS AND RECOMMENDATIONS
The results of this study are very important because they show that:
- PWME have the most significant areas of their lives affected by this illness.
- PWME feel invisible in all aspects of their daily life.
- The disruption crated by the symptoms of ME/CFS added to the negative experiences lived by PWME are related, in a very significant manner, to depression, hopelessness and to risk of suicide.
- Spanish PWME have higher levels of depression, hopelessness and risk of suicide than the rest of Spanish society.
Some of the Preventive Measures that the author, Juan Jimenez-Ortiz, proposes are:
- The abandonment and neglect that Spanish PWME live with from the health care system, from the employment world and from their social and family lives has to be denounced and taken seriuosly. This abandonment and neglect generates suffering among these PWME.
- There is an urgent need to organize and carry out educational and training activities about ME/CFS for health care workers, families and society in general.
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