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

A judge orders a 12-year old girl with Chronic Fatigue Syndrome /Myalgic Encephalomyelitis (CFS/ME) and Multiple Chemical Sensitivity (MCS) to be locked up in a psychiatric ward of a hospital and forbids her mother to see her. We are calling on everyone to support this family and to help us with the legal costs.

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