Whilst facing a worldwide fast increase of food and environmental allergies, the medical community is also confronted with another inhomogeneous group of environment-associated disabling conditions, including multiple chemical sensitivity (MCS), fibromyalgia, chronic fatigue syndrome, electric hypersensitivity, amalgam disease and others. These share the features of poly-symptomatic multi-organ cutaneous and systemic manifestations, with postulated inherited/acquired impaired metabolism of chemical/physical/nutritional xenobiotics, triggering adverse reactions at exposure levels far below toxicologically-relevant values, often in the absence of clear-cut allergologic and/or immunologic involvement.

Due to the lack of proven pathogenic mechanisms generating measurable disease biomarkers, these environmental hypersensitivities are generally ignored by sanitary and social systems, as psychogenic or “medically unexplained symptoms”. The uncontrolled application of diagnostic and treatment protocols not corresponding to acceptable levels of validation, safety, and clinical efficacy, to a steadily increasing number of patients demanding assistance, occurs in many countries in the absence of evidence-based guidelines.

De Luca et. al. revised available information supporting the organic nature of these clinical conditions. Following intense research on gene polymorphisms of phase I/II detoxification enzyme genes, so far statistically inconclusive, epigenetic and metabolic factors are under investigation, in particular free radical/antioxidant homeostasis disturbances. The finding of relevant alterations of catalase, glutathione-transferase and peroxidase detoxifying activities significantly correlating with clinical manifestations of MCS, has recently registered some progress towards the identification of reliable biomarkers of disease onset, progression, and treatment outcomes.

Literature:

De Luca C, Raskovic D, Pacifico V, Thai JC, Korkina L., The search for reliable biomarkers of disease in multiple chemical sensitivity and other environmental intolerances, Tissue Engineering & Skin Pathophysiology Laboratory and 2nd Dermatology Division, Dermatological Research Institute (IDI IRCCS), Via Monti di Creta 104, Rome 00167, Italy; Int J Environ Res Public Health. 2011 Jul;8(7):2770-97. Epub 2011 Jul 1.

Related articles:

• Environmental Illnesses: Petition received the support from 26 countries more than 200 Health experts and more than 240 NGOs
• Research on Multiple Chemical Sensitivity (MCS)
• Study could not confirm link between mental illness and chemical sensitivity
• Predictions of Multiple Chemical Sensitivity Mechanism Confirmed by Roman Study

THE FACTS

Last Saturday August 5, 2011, two plain-clothes policemen went to the home of V.R., a 46 year-old woman who has severe CFS/ME, MCS and Fibromyalgia, and took her 12 year-old daughter (who also has CFS/ME and MCS) with a judge’s order which stated that the girl had to be hospitalized in the psychiatric ward of the local hospital in central Spain and to keep the mother from seeing her.

THE BACKGROUND

The mother, V.R., who is very ill herself, has been fighting for years against the local Social Services. She had been denounced by the School Board for her daughter missing a lot of school, although a judge pronounced himself in favour of the mother and forced the school board to send a teacher to the girl’s home for schooling due to her severe CFS/ME and MCS.

Both the mother and the daughter were forced by Social Services to go once a week to a psychologist, although the physical effort of going to the appointments made them even more ill. The homecare that they were entitled to also made them sicker, as the home-care workers did not respect their needs for environmental control and they entered their home wearing perfume and smelling of tobacco.

When the mother complained about this, Social Services, instead of taking into account their special needs, saw it as “the last straw” and they decided to cancel their home service and proceeded to accuse the mother of “isolating” her daughter, which led to having the girl taken away.

MEDICAL REPORTS

The fact that V.R. and her daughter have been diagnosed by three of Spain’s leading CFS/ME specialists (and one of them also is an MCS specialist), Dr Jose Alegre, Dr Joaquín Fernandez-Sola and Dr Ana Garcia Quintana, as having severe CFS/ME and MCS with lab tests to prove it, (like alteration in their immunological parameters, high RnaseL and viral reactivations), is being ignored by the Social Services in that region of Spain. They say that the medical evaluation is going to be done by the local psychiatrists.

THE SITUATION RIGHT NOW

Yesterday, the judge ordered an “indefinite hospitalization of the girl in the psychiatric ward of the local hospital and forbid the mother to go see her, alleging that any contact with the mother would be bad for the girl’s health”.

Now the girl is in the hands of psychiatrists who are trying to prove that mother and daughter have a joint delirious alteration and are suffering from Munchhausen Syndrome, leaving the mother unfit to look after her daughter.

HOW YOU CAN HELP

Faced with this situation, we, three Spanish CFS/ME and MCS associations, have joined efforts from day one to support this girl and her mother on all levels: legal, logistic, medical, etc. But we need financial support. The mother gets a 400 Euro-a-month pension (equivalent to 350 British Pounds or 569 US Dollars) on which her and her daughter try to live on. They don’t have the funds to pay for the lawyers who are now working on their case to try to get the girl out of the hospital, reunite her with her mother and assure that she does not lose her custody battle with the Social Services. We have been footing the bills up to know but our associations don’t have funding.

Right now, because of the delicate work being done by lawyers, we do not want to put direct pressure on the Social Services ourselves and the lawyers say that right now, any public or press pressure on this case might back-fire. But as soon as the lawyers give us the go-ahead, we will start a massive public pressure campaign and we will let you know how you can join in that effort.

For now, we just want to let you know of this unfolding situation and to ask for any possible financial support you can give.

We are just starting this battle

and

WE WILL NOT ALLOW THEM TAKE OUR CHILDREN WITH CFS/ME OR MCS AWAY SAYING THAT THEY HAVE MENTAL PROBLEMS.

Thank you from all of us.

Clara Valverde

President

Liga SFC, Spain, August 12, 2011

www.ligasfc.org

formacionsalud@hotmail.com (any messages for mother and daughter in English can be sent to this e-address for translation before passing it on to them)

Francisca Gutierrez

President

ASQUIFYDE, Spain

www.asquifyde.es

Jose Luis Rivas

President

ASSSEM

www.asssem.org

For international donations, the bank account number is:

(if you are making a donation from Europe):

ES80 1465 0100 91 1700515969

(if you are making a donation from a country outside Europe):

INGDESMMXXX 1465 0100 91 1700515969

(if you are making a donation from Spain):

1465 0100 91 1700515969

“Everything is running smoothly” (says a mother)

In June 2010 Tohwanga reported (german) on her successful attempt to integrate her sick son with MCS and CFS to attend the German elementary school. After almost a year, she reports that everything is going well. Tohwanga actually succeeded with her child’s integration, and would encourage other parents with chemically sensitive children to ask the school and parents of classmates for support in a successful school integration as well.

Integration of a student with MCS and CFS

Tohwanga reports:

In May 2010, I initiated a parents’ evening and at first I asked for a low-emission class. I got 100% support from the school and would like to express my thanks to the head of the school. Teachers, parents, classmates and even grandparents decided to help my child, and contributed actively to reducing class-pollution, by making the classroom fabric softener and perfume-free.

My son now attends the school since August 2010 with great success. He has found friends at school and can participate in the classroom. Of course, the new phase of life is often very tiring. Despite absences and lateness, and extreme tiredness, my son is a good student and learning is easy for him. Even though the daily routine can be difficult and very draining, the morning rising, despite aching limbs, despite nocturnal asthma and / or violent nose bleeds, my son still has motivation to do homework and to have a few social contacts in the afternoon. My little son has mastered this task quite well. I too, am very exhausted by my environmental disease, and often do not know where I will get more energy for the next school day. So we live from day to day, weekend to weekend, and holiday to holiday. In particular, we look forward to the summer holidays, because the short two week vacation is not enough to rest from the deep exhaustion.

It is actually a gift that parents and teachers are giving to our family by accommodating my son’s health condition. Our situation is now a rare one, but I am sure that other schools in the future will allow the integration of MCS-afflicted children. Low-emission schools are important for all children. This should not be a political topic to be ignored any longer.

At the general parents’ meeting during the school year in September 2010, I got a little speaking time to thank the parents and relatives for their attempts of integration and tolerance for my son’s health conditions. I also was curious regarding their experience, so I created a short questionnaire:

Dear Parents,

I would like to express my gratitude to you for allowing my child to experience inclusion and to have an opportunity to attend school without prejudice for his health conditions. I appreciate your understanding, your cooperation, and your discretion in dealing with the harmful fragrances. Thank you very much.

Two questions interest me. (I prepared a questionnaire which I was allowed to distribute. The response was positive and all of the 11 parents present agreed to complete the questions immediately. There are 14 children total in the class.)

How was it to switch to a fragrance-free school?

Difficult: 2

• We took “Dalli med” washing powder but my child was sensitive to one ingredient and had to take “White Giant” again)

No problem, we were already living fragrance-free: 8

• We have been living mainly fragrance free
• We already lived without using many scented products
• We had been living without fabric softener
• No problem
• We were already living with some fragrance-free items

We have always wanted and now had reason to: 1

We do not want to take part in the fragrance free class: 0

I was also interested if the families now can smell better after the participation in the fragrance free classroom because normally the ability to smell gets weaker after a while because the receptors get less sensitive due to dealing with scents. Perfumes especially can paralyze the areas in the brain which deal with scents.

Do you and your family find an increase in perceiving smells and perfumes again?

Yes: 2

No: 9

• I was already very sensitive
• I’ve always smelled well

Conversion to a fabric softener and perfume free school was no problem for the 99% of parents who took part to be scent free, and for 81% the change was no problem at all.

The desire and willingness to take environmentally friendly actions are there, but people just need to get the right tools in their hands to take action. The market for fragrance-free products exists and is increasing every day. The advertising for the fragrance-free market brings success.

My conclusion is that I can follow these wonderful acts by this German mother: “Everything is running smoothly”.

With education, we move forward – silence is counterproductive

The population is becoming increasingly aware of the health damage to chemical exposures, thanks to the many environmental disasters, food scares, vaccine damage, etc., and the terrible nuclear accident in Japan. The Enlightenment month of May is a very important tool for us to further educate others. May we all have the with power to enlighten others. The successes like this story are there.

Author: Tohwanga for CSN – Chemical Sensitivity Network, MCS Information Month in May 2011

Translation: Christi Howarth for CSN

Related Articles:

• Do students with chemical sensitivity have a chance in traditional schools?
• Drugstore Dilemma
• Scented Consumer Products shown to emit many unlisted chemicals
• A politically inconvenient Illness

P.A.N.D.O.R.A. NeuroEndocrineImmune (NEI) Center Resolution Approved by the New Jersey State Senate

Coral Gables, FL, July 17, 2010 –(PR.com)– Resolution SR-20 supporting the establishment of the NeuroEndocrineImmune (NEI) Center™, the first research center in the state of New Jersey and in the U.S., dedicated to understanding and treating chronic neuroendocrineimmune (NEI) illnesses which includes chronic fatigue syndrome, fibromyalgia, multiple chemical sensitivity, Gulf War Illness and other bacterial & viral infections chronic illnesses was passed unanimously by 38-0 votes by the New Jersey State Senate on June 10, 2010.

Senate Resolution (SR) 20, sponsored by Senator Christopher “Kip” Bateman (R), Senate Deputy Conference Leader, and Senator Loretta Weinberg (D), Chair of the Senate Health Committee, cited studies that an estimated 20 million American adults and children suffer with NEIDs. The economic impact and loss of worker productivity in the United States due to CFS/ME, alone, is estimated to be over $9 billion per year. Chronic illness represents 75% of all the health care costs in the U.S.

“It makes sense to locate the NEI center in New Jersey,” said Senator Weinberg. “As the nation’s medicine chest, New Jersey is home to research institutions and private businesses that can cooperate to find a cure for these debilitating diseases.”

Senator Bateman added, “I look forward to the passage of Senate Resolution 20, solidifying legislative support for the research center, and have high hopes that this will, in fact, be a great step forward toward finding answers for the sufferers of these debilitating diseases.”

Assembly Resolution 202 passes unanimously

Late last year, a similar resolution unanimously passed the New Jersey State Assembly 78-0. “Having a research center… is essential to promoting research into the etiology of, and therapeutic interventions for neuroendocrineimmune disorders (NEIDs),” according to Assembly Resolution (AR) 202 which was sponsored by Assemblyman Upendra Chivukula (D), Deputy Speaker; Assemblyman Herb Conaway, Jr. (D), Chairman, Health Committee; Assemblywoman Connie Wagner (D), Vice-Chairman; and Assemblywoman Mary Pat Angelini (R), member of the Health Committee

P.A.N.D.O.R.A. partners with the Lanford Foundation-Lifelyme™, Inc.

To be based in Newark, New Jersey, the NeuroEndocrineImmune (NEI) Center™ is a community patient-driven project of P.A.N.D.O.R.A, (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc) in partnership with the Lanford Foundation-Lifelyme™, Inc.

The NEI Center™ is the first research center to incorporate scientific and clinical research, quality in patient care, and social services, all in one state-of-the art facility. The establishment of The NEI Center™ is based on the philosophy that the similarities in symptoms of neuroendocrineimmune disorders (NEIDs) are the human body’s response to similarities in the underlying pathophysiologies that cause these disorders.

The cornerstone of the NEI Center’s mission is that discoveries and advances made in any one of the NEIDs will be applicable and beneficial to other NEIDs, thereby bringing medical researchers closer to a cure. At its inception, the NEI Center™ will include research of the following disorders/illnesses:

Chronic fatigue syndrome (CFS), fibromyalgia (FM), Gulf War syndrome or illness (GWS/I), multiple chemical sensitivity (MCS), and other associated bacterial and viral illnesses.

“Moral and political victory,” said Marly Silverman, a CFS and fibromyalgia patient who founded P.A.N.D.O.R.A. in July 1, 2002, “On behalf of P.A.N.D.O.R.A., we are mindful of the historical significance of the unanimous vote by the New Jersey Senate as well as by the New Jersey Assembly in 2009. Patients across this country will be celebrating what is an amazing and pivotal moment in the history of the neuroendocrineimmune disorders community. The New Jersey Legislature has demonstrated a caring commitment to a community of patients who for the first time in the state of New Jersey can look forward to a brighter and fruitful future.”

Veny W. Musum, chairman of the NEI Center Project, who was diagnosed with chronic Lyme disease in 2004 along with his wife, Patricia, added, “The passage of SR 20 is a moral and political victory for millions of individuals stricken with neuroendocrineimmune disorders who have been living far too long without the compassionate support, research and treatment options they deserve. I am proud of my state of New Jersey!”

Advocates Extraordinaire™ & community support

“The overall community support has been outstanding for this patient-driven, physician-approved project. The unanimous votes by each New Jersey senator came about because of the involvement of individuals who participated in the Advocate Extraordinaire™ program, by making calls, writing e-mails and thanking the New Jersey Legislature for their vision and support of the Center,” said Dr. Kenneth Friedman, one of the founding board trustees of the NEI Center, as well as former member of the CFS Advisory Committee, and a member of the Executive Board of P.A.N.D.O.R.A.

“The New Jersey legislators unanimous support for the NEI Center reflects the kind of leadership needed to bring about positive change in our nation’s Health Care,” said Sandi Lanford, Co-founder of the NEI Center™ and the President-Founder of the Lanford Foundation-Lifelyme™, Inc, who was born and raised in New Jersey. The overall community support has been outstanding for this patient-driven, physician- approved project. The unanimous votes by the New Jersey Legislature came about because of the involvement of individuals who participated in the Advocate Extraordinaire™ program, by making calls, writing e-mails and thanking the New Jersey legislators for their vision and support of the Center,” said Dr. Kenneth Friedman, one of the founding board trustees of the NEI Center, as well as former member of the CFS Advisory Committee, and a member of the Executive Board of P.A.N.D.O.R.A.

Dr. Lesley Fein, member of the NEI Center Project team, stated “This center will be a beacon of hope for patients nationwide, and a place which will bring scientific innovation in New Jersey as well as in the rest of the country.”

Present at the passage of the law were Veny Musum, Chairman of the NEI Center Project and Debbie Floyd, team member of the NEI Center™ project.

NEI Center set to open by 2012

The NEI Center founders are already preparing fundraising efforts to make the Center operational by late 2011-early 2012. For more information about The NEI Center™, visit www.neicenter.com.

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About P.A.N.D.O.R.A., Inc- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy – Based in Coral Gables, Florida, P.A.N.D.O.R.A. was founded on July 1, 2002 by Marly C. Silverman, a chronic fatigue syndrome and fibromyalgia patient. Its mission is to raise awareness of the plight of persons with chronic fatigue syndrome, fibromyalgia, chronic Lyme disease, multiple chemical sensitivities/EI, and Gulf War illness, and advocate on quality of life issues. P.A.N.D.O.R.A.is Built on Hope – Strong on Advocacy – Finding a Cure through Research. For more information, visit www.pandoranet.info.

Chronic Fatigue Syndrome a medically determinable impairment

One of the battles often fought by persons with CFS trying to obtain Social Security Disability Insurance and SSI benefits was resolved with the adoption of Social Security Ruling 99-2p. In this binding Ruling the Social Security Administration set out guidelines for adjudicators and judges to follow for claims based upon Chronic Fatigue Syndrome. This Ruling removes at least one of the barriers faced by Claimants.

What Was the Issue?

The Social Security Act allows for SSDI or SSI benefits to be paid to persons unable to work by reason of any medically determinable physical or mental impairment (or combination of impairments)….” (emphasis added) The Act and Regulations define the phrase “medically determinable” as a condition that can be established by medical evidence consisting of signs, symptoms and laboratory findings. It cannot be based only on the Claimant’s description of symptoms.

In claims based upon CFS there are obviously a lack of medical signs, symptoms and laboratory findings. Therefore many claims were denied on the failure to prove the existence of a “medically determinable impairment.”

What Does the Ruling Say?

The Ruling states unequivocally that CFS can be a medically determinable impairment. It specifies medical signs and laboratory findings that will now constitute proof of a medically determinable impairment for persons suffering from CFS. However, whether the Claimant is actually “totally disabled” is a separate determination based upon the severity of functional limitations caused by the disease. That is the same as in any claim based upon any other medical problem.

This Ruling requires that any of the following medical signs, which are clinically documented over a period of at least 6 consecutive months, can establish a medically determinable impairment:

• palpably swollen or tender lymph nodes on physical examination;
• nonexudative pharyngitis;
• persistent, reproducible muscle tenderness on repeated examinations, including the presence of positive tender points; or,
• other medical signs consistent with medically accepted clinical practice which are consistent with the other evidence in the case record.

The following laboratory findings can establish a medically determinable impairment for individuals with CFS:

• an elevated antibody titer to Epstein-Barr virus capsid antigen equal to or greater than 1:5120, or early antigen equal to or great than 1:640;
• an abnormal MRI brain scan;
• neurally mediated hypotension as shown by tilt table testing or another clinically accepted form of testing; or,
• other laboratory findings consistent with medically accepted clinical practice such as abnormal sleep studies and abnormal exercise stress tests that are consistent with other evidence in the case record.

Finally, mental impairments documented by mental status examinations or psychological testing can also establish the presence of a medically determinable impairment.

What Evidence Can Be Used to Show these Signs and Findings?

As in any claim for disability benefits the focus is upon the medical evidence, especially the clinical records and test results from treating sources. SSA will try to obtain all medical records, generally beginning 12-months prior to the month of application. The Ruling notes that conflicts in the medical evidence are not unusual in cases involving CFS and clarification should be sought first from the treating sources. Treating source opinions about the severity of the impairment should be given deference if they are well supported by medically acceptable clinical and laboratory techniques and are not inconsistent with other evidence in the records. It is noted that any information regarding functional abilities before and after the onset of the impairment is helpful in evaluating the claim. Finally third-party sources may be useful in determining the credibility of the Claimant.

As in any claim, the focus is upon a longitudinal view of all of the medical evidence. Claimants must be actively treating with medical providers and must be completely describing all symptoms each time they see the doctor. The doctors must keep careful, legible, notes during each visit so that the signs and findings noted above can be documented. In addition, the physician should be willing to provide a written opinion to SSA regarding the patient’s ability to sustain even sedentary work activity on an 8 hour per day, 5 days per week basis.

SSR 99-2p does not provide that every claim based upon CFS should be approved. It does, however, set forth guidelines for evaluation of these claims so that Claimants, physicians and representatives can be assured of a fair evaluation of the impairment and its impact on the individual.

Literature: Jeffrey A. Rabin & Assoc, CFS Finally Recognized As ‘Medical Impairment’ Under Guidelines, 24-7, June 26, 2010

Article provided by Jeffrey A. Rabin & Assoc, Visit at www.rabinsslaw.com

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Related Articles:

• CFS – Chronic Fatique Syndrome: FDA and NIH confirm ‘XMRV findings’
• MCS – Multiple Chemical Sensitivity recognized as physical disease at ICD-10 in Japan
• The Department of Health of the Austrian Government recognizes MCS – Multiple Chemical Sensitivity as a physical disease
• MCS recognized as physical disease in Germany

The FDA and the NIH have independently confirmed the XMRV findings as published in Science, October last. This confirmation was issued by Dr. Harvey Alter of the NIH during a closed workshop on blood transfusion held on May 26-27 in Zagreb. Two journalists from the Dutch magazine for health professionals, ORTHO, who have been working on XMRV stories for several months, were able to obtain a copy of the Alter lecture.

In the October 8, 2009 issue of Science Express, the Lombardi-Mikovits group at the Whittemore Peterson Institute (WPI), the Cleveland Clinic and the National Cancer Institute (NCI) reported that 67% of 101 chronic fatigue syndrome (CFS) patients tested positive for infection with xenotropic murine retrovirus (XMRV). Only 3.7% of 218 healthy subjects tested were positive for this gammaretrovirus. Since that time, a number of research groups have proved unable to independently confirm these findings.

On Friday last, the AABB released an Association Bulletin recommending that its member blood collectors actively discourage potential donors who have been diagnosed with CFS from donating blood or blood components. This interim measure was proposed by the AABB Interorganizational Task Force on XMRV. This Task Force includes representatives from several government agencies, including the Center for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA) and the National Institutes of Health (NIH).

The fact that the measure was introduced suggests the presence of information not yet published. The ORTHO journalists were able to obtain a pdf document of the lecture given by Harvey Alter at the IPFA/PEI 17th Workshop on ‘Surveillance and screening of Blood Borne Pathogens’ in Zagreb. The International Plasma Fractionation Association (IPFA) represents the not-for-profit organizations around the world involved in plasma fractionation. The IPFA is based in Amsterdam, the Netherlands.

The highly-experienced Dr. Harvey Alter is Clinical Studies Chief at the Infectious Diseases and Immunogenetics Section of the Department of Transfusion Medicine at the NIH Clinical Center in Bethesda. “The data in the Lombardi, et al Science manuscript are extremely strong and likely true, despite the controversy”, was one comment on the XMRV findings reported by Alter in Zagreb. “Although blood transmission to humans has not been proved, it is probable. The association with CFS is very strong, but causality not proved. XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%-7%. We (FDA & NIH) have independently confirmed the Lombardi group findings.”

ORTHO contacted Dr. Harvey Alter today for a reaction. He did not want to comment, but confirmed that a paper is soon to be published.

Literature:

ORTHO, Dutch magazine for health professionals, FDA and NIH confirm ‘XMRV findings’, Gendringen, NL (MMD Newswire) June 22, 2010.

WE KNOW THEY ARE LYING TO US

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(ANTI-TOXIC MANIFESTO)

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They are lying to us. We know they are lying.

For the politicians, we are the black sheep in their controlled herd.

For the doctors who lie to us, we are the misbehaved guinea-pigs.

For the industry that lies to us, we are the non-profitable broken machines.

For the pharmaceutical companies, we are the pebble in their shoe.

The disease mongers lie to us.

Those who talk of progress with one hand on their wallet, lie to us.

But we do not believe their toxic lies.

Although they want to make us invisible, lock us up in an illness and throw away the key, poison us and shut our mouths, kill us and then plant fake flowers on our tombs, they will not be able to lock us up, shut us up, nor make us disappear.

We are out of patience and we are not good patients. We do not justify ourselves nor do we explain ourselves.

If you suffer with Fibromyalgia, survive with ME/Chronic Fatigue Syndrome, if you are agonizing with Multiple Chemical Sensitivity, you should know that you are at war. Their lies do not scare us, they are the ammunition in this war that has merely started.

If you believe that you are healthy, choose your side: get sick with them or live with us.

Now is our moment: we name, we decide, we define.

We do not believe their toxic lies.

We know they are lying.

Clara Valverde & Eva Caballé, No Fun

CSN – Chemical Sensitivity Network supports this manifesto.

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May 12, 2010 – International Day of Fibromyalgia, ME/CFS and MCS

International Appeal from Wuerzburg

The European Academy for Environmental Medicine (EUROPAEM) invited many renowned national and international scientists and health care professionals to a medical conference held in Wuerzburg, Germany from April 23 to April 25, 2010. These professionals were from the fields of environmental medicine, toxicology, immunology, neurology and genetics and other health fields as well as physicians and dentist. Also in attendance were representatives of patient initiatives. The theme of this international medical conference was Science Meets Practice. It dealt specifically with the issues of Neuro- Endocrine- Immunology and their importance in environmental medicine.

Greatly concerned, participants noted the increasing prevalence of chronic multisystem illnesses such as multiple chemical sensitivity (MCS), chronic fatigue syndrome (CSF), fibromyalgia (FMS) as well as cardiovascular diseases, metabolic syndrome, neurodegenerative diseases, auto immune diseases, and cancer.

At the conference it was impressively demonstrated that these chronic diseases are based on similar pathological mechanisms. Common mechanisms are chronic inflammatory processes influenced by environmental factors including chemical pollutants, biological infectious agents, and electromagnetic field (EMF) triggers.

Chronic diseases mean long-term patients and such patients require consecutive higher medical costs. This often leads to social exclusion of the affected people. Facing the appalling reports of Europe´s growing financial constraints, especially in public health, a further increase of chronic illnesses will accelerate the ongoing collapse of the National Health Service and medical insurance companies in Europe. Remedy is only possible with a change of priorities from today´s unilaterally symptomatic oriented medicine to causally oriented medicine focusing on cost-effective primary prevention.

Conference participants addressed an urgent appeal to the European environment and health ministers, to the European Commission, the European parliamentarians, national governments and to the directors of social and private insurance companies. They urge them to take these findings and developments into serious consideration, stressing and weighting financial investments primarily in prevention, precaution and best early detection and diagnosis of these chronic and environmentally related illnesses.

All over Europe this requires the full awareness of these research findings of the practicing physicians of environmental medicine and their integration into university research and teaching. The European governments are asked to finally implement the already ratified decisions of the Fourth Ministerial Conference on Environment and Health Ministers held in Budapest in 2004.

This appeal was unanimously adopted by the congress.

Wuerzburg April 25, 2010

For the board of EUROPAEM,

Jean Huss, Vice-Chairman

Dr. Kurt Mueller, Chairman

Dr. Peter Ohnsorge, Managing Chairman

Dr. Hans-Peter Donate, Press, Responsible

• German Version – International Appeal from Wuerzburg
• Japanese Version – International Appeal from Wuerzburg / Thanks to Takeshi for translation.

At the beginning of 2006 AMICA wrote to all the Members of Parliament asking for a law to recognize Multiple Chemical Sensitivity (MCS) as a Public Health Illness. The idea came after this kind of recognition was given to the Celiac Disease. If people with such severe food intolerance could have a special law for their problems, why shouldn’t MCS have the same, since it is so similar, widespread and life-limitating?

Paolo Cento from Parito dei Verdi (Green Party) replied and invited AMICA to work together in writing a law proposal. Thus, the first law for MCS was presented in June 2006, posing a first step towards the MCS recognition.

At that time three Regional Parliaments (Tuscany, Emilia-Romagna, Abruzzo) had already recognized MCS as a rare disease, but the doctors nominated by two Regional Administrations in the MCS Commission didn’t want to make diagnoses, claiming that “there isn’t enough evidence about MCS” Even though the existence of an International Consensus about MCS diagnostic criteria, they planned an observational study to find new criteria, so the ill people were in fact left without a proper diagnosis and treatment.

In the meantime, the Superior Institute for Health (ISS), a public health agency, created an inter-regional Commission aimed to prepare a position paper about MCS that the Supreme Council of Health (CSS), the scientific arm of the Ministry of Health, should then review and sign. In September 2008 the CSS released the final MCS document claiming that “MCS can not be recognized as an illness due to lack of evidence and the absence of an univocal diagnostic test”. MCS activists know well this old story.

The inter-regional ISS Commission paper, in fact, quoted several studies by researchers with industry ties and also the presumed WHO-IPCS consensus of Berlin in 1996. The famous book about MCS written by the major experts, Nicholas Ashford and Claudia Miller, clearly explain that there isn’t any WHO-IPCS Consensus.

Thus, AMICA wrote again to the Parliament Members asking for an investigation about the ISS and CSS position papers that didn’t consider important scientific references about MCS. The Member of Chamber of Deputies Giorgio Jannone asked to the Ministry of Health, with a parliamentary interpellation, why the inter-regional commission was made mainly by occupational doctors even if MCS is also a pediatric illness. There is still no answer.

Actually, the Italian occupational doctors were prohibited to make MCS diagnoses since 2005 when their professional organization released a strong anti-MCS position paper, claiming that to make MCS diagnoses and to study MCS is a waste of money and time.

The only hope for MCS recognition in Italy lays in the hands of politics and AMICA worked well with members from all the political parties. Today there are, in fact, five proposals by Partito della Libertà (Liberty Party) and four proposals by the opponent parties, Partito Domocratico (Democratic Party) and Italia dei Valori (the Italian Party of Values).

Only in December three new law proposals were presented. Among them, the one by On. Domenico Scilipoti (IdV) is quite new because it considers AMICA’s request for a more wide recognition of Environmental Illnesses and Disability. The law is addressed to those people whose survival and quality of life depend not much on drugs, but on avoiding certain environmental factors.

The most common Environmental Illnesses are: MCS, involving a loss of tolerance of chemicals; Electromagnetic Hyper-Sensitivity (EHS), forcing the affected ones to get far from electromagnetic fields emitted by mobiles, Wi-Fi, electric cables, etc.

Moreover, Fibromyalgia and CFS patients usually suffer from chemical intolerances and scientific evidence suggests that avoiding chemicals improve these conditions. Autism, epilepsy, migraine and lupus involve reactions to fluorescent lighting. But there are also several other conditions, even not originally caused by the environment, that present reactions to a certain environmental quality, such as the genetic favism, which causes serious reactions to legumes and forces the one affected to an avoiding protocol.

A representative of the Green Party of the Region Tuscany wrote today to AMICA to say that they will present this law proposal for Environmental Disability to the Regional Commission for Health and, hopefully, there might be a regional law as well.

Author: Francesca Romana Orlando, Journalist and Vice President of AMICA, 29th December 2009

Associazione Malattie da Intossicazione Cronica e/o Ambientale

(Association for Environmental and Chronic Toxic Injury)

www.infoamica.it

Related articles:

• Multiple Chemical Sensitivity, A 1999 Consensus, Archives of Environmental Health, May/June 1999, Vol. 54, No. 3, pp. 147-149
• An Italian law proposal for Environmental Illness and Disability
• Research on Multiple Chemical Sensitivity – MCS
• MCS is recognized as physical disease at ICD-10 in Japan
• Department of Health of the Austraian Government recognizes MCS as a physical disease

The links to the law proposals:

At the Chamber of Deputies

• On. Domenico Scilipoti (IdV) (still not published)
• On. Donella MATTESINI (PD)
• On. Silvana MURA  (IdV)
• On. Mariella  Bocciardo PdL (still not published)
• On. Annagrazia CALABRIA PdL
• On. Maurizio BERNARDO PdL

At the Senato

• Sen. Roberto DELLA SETA PD
• Sen. Alberto Balboni (PdL)
• Sen. Adriana Poli Bortone (PdL)
• On. Giorgio Jannone parliamentary interpellation about MCS

Interview by Salvador López Arnal, November 2009 :

“Yes, there is something hidden in this silence. It is the interests of the chemical and pharmaceutical companies so that people won’t know that their products are causing new and terrible illnesses like Multiple Chemical Sensitivities (MCS). Actually, recently it has been demonstrated that MCS is not a psychological illness and that old studies that said so were fabricated to protect the interests of the chemical and pharmaceutical industries”.

Eva Caballé

Eva Caballé is a 37 year-old Barcelona economist who lives with MCS. She was a bank employee and was a member of the rock group Lefthanded and now is the author of the recently released book (in Spanish) released by the publishing house, Libros de El Viejo Topo, Desaparecida. Una vida rota por la sensibilidad química múltiple (Missing. A life broken by Multiple Chemical Sensitivities). In the book’s introduction, Clara Valverde, says: “…But Eva is not weird. It is known that 0.75% of the population now lives with severe MCS and that up to 12% have mild or moderate MCS. All those people who are bothered by smells, those are part of that 12%. But most doctos and the majority of society are not aware of this and that is why it has taken Eva so many years to receive the right diagnosis. That is why Eva only has the help of her immediate family. That is why there are no demonstrations about this out on the streets nor her case is on the front page news.”

Eva Caballé is also the author of the blog “No Fun”. She says: “No Fun is a blog about Multiple Chemical Sensitivities, Chronic Fatigue Syndrome/ME and Fibromyalgia with information and advice for people who are sick and for anyone who wants to live a healthier life free of toxics”.

López-Arnal: Let’s start with a definition. What is MCS?

Eva Caballé: MCS is an aquired chronic illness, not a psychological one, which manifests itself with multisystemic symptoms as a reaction to a very small exposure to chemical products, normal everyday chemicals but unnecessary ones, like perfumes, air fresheners or laundry softeners.

The symptoms, which are chronic and they become acute in a crisis, include fatigue and respiratory, disgestive, cardiovascular, dermatological and neurological problems.

MCS is a syndrome with three grades of severity, so not all of us who are sick suffer the same level of disability and isolation.

It is an illness which has been known since the 1950s, but it has yet to be recognized by the World Health Organization (WHO), despite that there are more than 100 research articles that support the organic basis of MCS, that the number of people affected is increasing rapidly, at a younger age, and that the European Parlament includes MCS in the growing number of illnesses related to environmental factors.

LA: You say that MCS is not recognized by the WHO despite the number of scientific articles that support the organic basis of this illness. Why do you think that the WHO is so sceptical, so cautious?

EC: We know that the WHO has been debating the MCS issue for years. But the process of recognizing the illness is taking longer than usual due to the pressure that the chemical and pharmaceutical industries are putting on the WHO, as they are not interested in having it known that they are directly responsible for this illness.

Without going any further, in Germany, where MCS is recognized as an illness, the industries continue exercicing their control through tools like Wikipedia. This was denounced by the CSN Association in an article which I translated and published on my blog.

The article about MCS in Wikipedia in German is edited each day, sometimes every few minutes, because the administrators of Wikipedia, who have interests in the industry, veto the information trying to make sure that MCS is not known or if it is, that it be thought of as a psychosomatic illness.

LA: You also say that the number of people with MCS is growing rapidly. Can you give us any data to illustrate this?

EC: I am quoting Dr J Fernández-Solà (an Internal Medicine specialist from the Hospital Clinic in Barcelona) who, in an interview that was done with him at the beginning of this year for an article on MCS in the Spanish magazine, Interviu, said that the amount of patients who were seeking medical help for this illness is growing rapidly. In his hospital, each year, they get between 50 and 60 new patients. That means one new patient a week.

LA: What symptoms could make one think that they have this illness?

EC: Perhaps the most common symptom is to notice unbearable smells which one did not notice before. One stops tolerating various chemical agents like cleaning products, perfumes, tobacco smoke, car emissions, etc. When you have MCS and you are exposed to these chemical agents, a series of symptoms are triggered automatically like choking, irritation of the respiratory tract, tachycardia, headaches, mental confusion, dizziness, nausea, diarrhea, extreme fatigue and/or pain. These symptoms don’t get better until you stop being in contact with the chemical agent that produced it.

Normally you also stop tolerating alcohol, dairy products or gluten. You also develop intolerance to various foods and medications.

Often there are other environmental intolerances: to heat, to cold, to noise, to sunlight and to electromagnetic fields (computers, high power lines, telephones, cellular phone atennas, microwaves, etc).

LA: What differences are there between MCS and, let’s say, Fibromyalgia?

EC: MCS, Chronic Fatigue Syndrome/Myalgic Encephelitis (CFS/ME) and Fibromyalgia (FMS) are illnesses of the same family. In fact, many of us who have MCS, we actually have the three illnesses and more and more people with CFS/ME and FMS, with the years, also develop MCS.

We have a lot of the same symptoms, but the biggest difference is that those with MCS do not tolerate even the smallest exposure to chemical substances, which is the reason why we have to maintain a strict environmental control and we cannot go outside without a mask with a carbon filter to filter out the enviromental toxics.

LA: What medical treatment does a person with MCS receive from the Spanish health care system? Do you think it is adequate? Do you think it is fair?

EC: In Spain, MCS is not recognized as an illness and so health workers and the general population are not aware of this serious pathology.

Instead, countries like Germany, and recently Austria and Japan, have recognized it and other countries are on their way to doing so and offer health services to those who have it and are establishing protocols for prevention.

In Spain there are hardly any doctors in the public health care system who can diagnose this illness and it is very hard to get a diagnosis and even harder to get treatment. I am convinced that there are a lot of people in our country who have MCS who are not diagnosed, many of who end up in the hands of psychiatrists because of the lack of knowledge of our doctors. Also there are no protocols or policies on “Free of fragrances” for our hospitals and public buildings, so for us going to the hospital means getting sicker.

In Spain, we people with MCS do not have health care services, we do not have the right to economic help to adapt to our disability and we do not have the right to a pension when we cannot work. I don’t just see it as unjust: I think the way we are treated is a violation of our constitutional rights.

LA: But, isn’t it a bit of a contradiction the fact that the European Parliament considers MCS an environmental illness and that in Spain, the central government and the regional governments look the other way?

EC: Of course it is! It is all with the excuse that the WHO has not yet recognized it as an illness. This does not mean that it does not exist: the decisions that are taken at a bureaucratic level do not make us patients disappear by magic.

They use this argument to discredit the illness when it is all really a conflict of interests. Also they will tell you that there are no specific biomarkers for MCS, but that is the same as other illnesses which are recognized.

LA: What percentage of the population is it thought to be affected by this illness right now?

EC: According to the 2007 study published by doctors from the Barcelona’s Hospital Clinic, J. Fernández-Solà (Internal Medicine) and S. Nogué Xarau (toxicologist), 5% of the population has MCS. They specify that: “More that 15% of the general population present mechanisms of excessive response when faced with a chemical or environmental stimulus. In 5%, these processes are clearly pathological and they are above the organism’s capacity to adapt and so it results in skin, respiratory, digestive and neuropsychological manifestations, frequently chronic and persistent”.

So if MCS affects 5% of the population, it cannot be considered a “rare disease”, which are the ones that affect less than 0.0005% of the population.

LA: Are you speaking about the Spanish population or are you thinking in European or world terms?

EC: I am talking worldwide. It is considered an illness of the industrialized world.

In countries where there are statistics about this illness, like in Canada, we see that the amount of people that have MCS is not small. According to the Environmental Health Association of Quebec, there are 4 million people with MCS in Canada.

LA: And do we know the causes? MCS, as you have said, is a disease related to environmental factors. What does that mean exactly?

EC: Studies say that the cause is the toxics in the environment we are exposed to. There are two ways of developing MCS: from one single exposure to toxics at a high dose or by several exposures to small amounts over the years.

There are toxic substances in the air we breathe, in the water we drink (in the plastic if we drink bottled water), in the clothes we wear (formaldehyde, dyes, traces of pesticides), in the cleaning products, in our beauty products, in the food we eat (pesticides, additives and artificial colours which have been banned in the USA for many years for being cancer causing) or, for example, in the silver dental fillings (which have mercury).

Over the years, our body accumulates all these chemical substances which circulate in our environment without any controls, substances which we must remember that it has not been so many years that they have been in use, until the toxic load is unbearable and we end up getting sick, which according to our genetic make-up, it could end up being MCS. But other people do not get off scott-free because they will end up developing cancer, asthma, allergies, autoimmune diseases or any other illness of environmental origin.

Even doctors complain that there is no funding for researching MCS, that no one wants to fund MCS studies, because studies normally are funded by pharmaceutical companies so they can develop a medication, that is, for their own benefit. But as MCS patients do not tolerate any medication, we are of no interest to them.

LA: But, what sense does it have to know all this and not take any measures? Why do we keep using these products if we know of their toxicity and of the high risk their use entails? It is not an ideal situation the one you describe. Why do we not put some order in this toxic chaos?

EC: That is a good question. It does not make any sense to not take any measures and to keep on using these products. If health authorities do nothing, the option is to stop using these toxic products and it will have to be us who take charge of things.

In the labels on the fabric softener, the beauty products, the perfumes or the air fresheners it does not say: “Warning, this product is toxic and it will keep accumulating in your body until it causes you Multiple Chemical Sensitivities”. No one warned me. That is why I try to share all that I have learned ever since I got sick 4 years ago so that people will know what we are not being told.

If, for example, it is so hard to regulate tobacco, all this will surely be harder because we are not talking about one product. The problem is more than that. Has everyone forgotten that in the 1960s medical reports were hidden or changed, reports that showed that tobacco caused cancer? What is happening is nothing new. Power is not in the hands of politicians. It is in the hands of the multinationals.

LA: Describe, briefly, the life of a person with MCS. What measures does the person have to take? What treatment does the person have to undergo?

EC: The treatment is basically one concept: Environmental Control.

Environmental Control is to basically avoid, as much as possible, any exposure to toxics or chemical substances in general and the basic points are:

• Eat organic, non-processed foods (normally it is recommended to avoid dairy products and gluten).
• Filter the water, the drinking water and also the water for cooking and showering.
• Substitute all beauty and cleaning products with ecological ones, ones without aroma. Logically, one must stop using colognes, air fresheners, laundry softeners, etc.
• Use ecological clothing that does not have any dyes nor toxics.
• Get an air filter.
• Buy furniture and mattresses that are made of ecological materials that have not been treated with chemicals and when you paint the house, it must be ecological paint.
• Avoid or minimize exposure to electromagnetic fields.
• Use a carbon-filter mask when you go outside or in situations in which there are a high concentration of toxics.
• Try to live in an area which is the least contaminated as possible and in a house made of non-toxic materials.

As you can see, Environmental Control involves a high financial cost, for which we have no help and also, the last point, is almost impossible to carry out.

Besides Environmental Control, which is also beneficial for healthy people, there are personalized treatments. These involve nutritional supplements, saunas, oxygen therapy, etc. Each person with MCS is different and also some people have other added illnesses. Therefore, one has to have a lot of tests done to determine what is best in each situation. In Spain, none of this is covered by the public health care system.

Those of us with severe MCS can barely leave the house. Our lives are reduced to our house, which becomes our prison, in which most of us cannot even do any housework. In some cases, we spend most of the day in bed and rely of family members for almost everything. The contact with the outside world is reduced to talking on the phone, those who have energy to do so, the odd visit from people who are willing to change their washing and cleaning habits, and through Internet, for those of us who do not have severe cognitive or electromagnetic problems.

LA: What government help does a person with MCS receive? It does not seem possible for someone so sick to go to work. How can you organize your home if your family does not have the available time?

EC: We get no help when we have MCS. Even the masks, without which we cannot survive, we have to pay them ourselves. This is the economic drama that goes along with this illness.

When one has severe MCS, one cannot work, but if one has mild MCS it is not possible either because no employer is willing to adapt the work place so that a person with MCS can continue working. In some cases, some people get disability, but usually it involves going to court. We must remember that there are young people who get sick who have not worked long enough to have the right to a pension. What is their future? I always say that I am amazed that there is not more depression amongst people with MCS. Who would not be depressed in such a hard situation?

One can try to get disability, but the amount of money that one gets is very small, depending on the scale of severity recognized.

In my case, I am lucky to have my husband’s and my mother’s help, because I am so severely ill that I cannot do anything in the house, nor even cook for myself. Even if I had the money to pay someone to come and help me at home, that would not be possible. Just to be able to have my mother come over, she has had to change all her washing and cleaning habits as well as showering herself before coming.

LA: Why do we hear so little about Multiple Chemical Sensitivities? What is behind all this? What is behind this silence?

EC: Yes, there is something hidden behind this silence: the interests of the chemical and pharmaceutical industries not to have it known that their products cause terrible new illnesses like MCS. Recently it has been proven that MCS is not psychological and that studies that were done in the past which said that it was psychological were manipulated in order to protect the interests of the chemical and pharmaceutical industries.

Unfortunately, it is very easy for the government to ignore us, as most of us live under house arrest and we do not have the strength to organize ourselves. It is clearly an abuse of power. Only our families, friends and neighbours know we exist and how hard our everyday life is.

But, despite the seriousness of our situation, we are many, more every day who, from our homes, through Internet, fight for our rights, to try to make MCS visible and we share information to help each other out, as our government does not help us.

LA: You talk about studies that were altered that “showed” that MCS is a psychological illness in order to preserve the interests of large corporations. Were they blinded by the colour of money? Can you give us an example?

EC: On September 2008, the magazine Journal of Nutritional & Environmental Medicine, published a study by Goudsmit and Howes entitled “Is multiple chemical sensitivity a learned response? A critical evaluation of provocation studies” This study showed that MCS is not a psychological illness and that its origin is tied to chemical substances. I translated to Spanish the article that MCS America dedicated to this study:

“In the past, a small number of badly designed studies, suggested that MCS was a psychological illness related with pre-existing expectations and beliefs. This is a stance that the pharmaceutical and the chemical industries have made an effort to have everyone believe, because this way, their chemical products would stop being the  responsible ones and the use of profitable psychiatric medications would be promoted, in the absence of medications which could counteract the effects of environmental contamination. Given the fact that most chemical and pharmaceutical companies have the same owner, this position has been promoted energetically and very cunningly through publications controlled by the industry itself. Fortunately, these manipulated studies were examined by Goudsmit and Howes using additional scientifically accepted criteria. That way, the studies that talked about a psychological base for MCS were proved to be very misleading due to numerous deficiencies and methodological mistakes. It was determined that MCS is related to exposure to chemical substances rather than to anxiety, psychosomatic states and depression.”

LA: One of your articles is entitled “We are born naked” and it has had a great repercussion amongst people with MCS and other people interested in the topic. Why? What was this article about?

EC: I wrote the article for the on-line cultural magazine Delirio, which exposed, without holding back, the total neglect and abandonment that we, people with MCS, suffer, making a special point on the situation in Spain. “We are born naked” had also two photos of me naked wearing a mask which caught the attention of MCS associations in other countries, which resulted in it being translated into 9 different languages.

The reason for its success is that people ill with MCS all over the world felt totally  identified with the situation we live in Spain. Unfortunately, even in countries were MCS is recognized, people with this illness are abandoned and silenced because of the economic interests go before our health.

In the next number of Delirio, dedicated to the topic of silence, there will be another article on MCS. They have asked me to write it to explain the success of “We are born naked” and that way we continue to inform on MCS.

We are the “canaries in the mine”, we are the warning of the disaster which is coming. We are the evidence that the actual model of society has failed, although no one wants to admit it nor pay for it, nor do anything about it. For all this, they want to silence us.

LA: Disaster that is coming? What disaster? Why has the actual model of our society failed? Is this because of the illnesses it generates? Tell me about a more humane model.

EC: The cases of MCS are increasing rapidly and in younger and younger people. Each day there are more children with allergies, asthma, with celiac intolerance, etc. The cases of cancer are multiplying and are appearing in families with no cancer history. There are constantly new studies that show the relationship between chemical substances and electromagnetic radiations with certain cancers or an increase in allergies. If something is not done, the future that awaits us is not that of a healthy society.

I, like other people with MCS, are the proof that this society has failed. When I was little, I use to think that the government looked after us and that if something was sold, it was because it was safe. I could not have been more wrong. The air quality in cities like Barcelona or Madrid is scandalous. Our food is full of pesticides, with all kinds of additives and they are allowing the use of transgenic modified foods. They let us get sick and then they abandon us with no help, with no health services as it has happened to me. You study and get a degree, you have a good professional career and when you are supposed to begin to enjoy your life, it is all over. Is that a Welfare State?

Measures have to be taken to stop putting the economic interests before health. Chemical substances and electromagnetic radiations should be banned and regulated. Transgenic modified foods should be banned. Organic farming should be encouraged as well as alternative energies…There is an infinite number of measures to be taken, but the important thing is to change the direction and to start before it is too late.

LA: You have written a book, a magnificent book, entitled Missing. Why Missing? Where have you disappeared from?

EC: Thank you for praising my book. As a new writer, it is an honour.

LA: The honour, dear Eva, will be that of the readers, I can assure you.

EC: I thought of the title when I read the great introduction to my book that Clara Valverde has written (she is a writer, president of the Liga SFC- CFS League- and lives with Chronic Fatigue Syndrome). It was then that I realized that a lot of people might think that I disappeared from the face of the Earth. I went from having a job with a lot of responsibility in a bank, going to the gym every day, going to rock concerts, going out with friends and sharing holidays with my family, to being locked up in my house to be able to survive. Seen from the outside my immediate group, I am missing, kidnapped by MCS.

The outside world is toxic for all, but for those of us who have MCS, it is to the point that we cannot go out without a carbon-filter mask that protects us from harmful chemical substances and, in some cases, the severity is such that even with a mask, we cannot go out. I am sentenced to live within my four walls because they have not taken measures to ban chemical substances that, in me, set of a crisis and in other people makes them develop an environmental illness. Does no one realizes that it is not normal that every day we hear of a cancer death? Does no one care that this society is sicker every day and that this is not sustainable?

LA: Finally, how should society and the health services act regarding these new illnesses? Are they really new? Can you suggest some basic ideas?

EC: As I was saying before, MCS it not really new as the first cases were reported in the 1950s. We cannot use the idea that they are new as an excuse in 2009 to justify that nothing has been done.

At an international level, the first thing should be that the WHO recognize MCS once and for all as an illness. But until this happens, our country should recognize MCS, following the example of other European Union countries. Also they should train doctors and adapt the health services for MCS. All this would also mean that we should have access to disability pensions and other support to be able to adapt to our illness.

Right now, when people with MCS get sicker, because of our illness or because of another illness we might also have, we do not have anywhere to go because there aren’t any hospitals that are prepared for us and health workers do not know about our pathology. That’s how serious our situation is.

It is also necessary to put into place prevention policies such as “Free of fragrances” ones in hospitals and public buildings and to control and ban certain substances. All this would be beneficial for the health and well-being of all citizens, not only those of us who have MCS.

And, obviously, there should be put in place a public education campaign so that people can get to know our disability. When you go out on the street with a mask, you leave yourself open to all kinds of mocking and abuses and this is unacceptable. There are people who are ill who do not even get any support from their friends and family, all because MCS is not recognized.

We are not asking for a special treatment, but an adequate treatment for the problems that this illness creates.

LA: What you are saying and asking for is very reasonable. Thank you for your words. Would you like to add something else?

EC: Yes. I would like that making my situation public, as I do through my blog and now, even more, through my book, could serve as a warning to all those who are still healthy. Perhaps they think that because they do not have the genetic predisposition to MCS, they are safe, that they cannot get sick like I did. But this is not so. As I have told you, the chemical substances that cause MCS, also provoke many other illnesses. Also, we can and we should live in a different way, without so many chemical products and that will be good for our health and also for the environment. We must change before it is too late and the change starts with each one of us because as consumers we have a lot more power than we think. If there is no demand, then there is no offer.

And to end I would like to bring up a paragraph from my article “We are born naked”:

“Those of us who live with MCS would like this illness to be recognized, we would like to have the same rights as other chronic patients, we would like society to know of the risk it is in, we would like the government to protect its citizens and to help them prevent getting sick unnecessarily. We don’t want anyone else to feel naked because of having MCS”.

—

Interview by Salvador López Arnal with Eva Caballé, November 2009