Archive for category ‘Therapy‘

An icon of environmental medicine visits Germany

Evidence for the causes of environmental diseases have been around for a long time

The doctor and scientist Doris Rapp is one of those who not only practice environmental medicine, but has also made environmental medicine the most important thing in her life. The American spent two weeks in Germany. The reunion with Prof. Rapp was very productive and we were lucky enough to spend a beautiful day on the Moselle. Here is a small summary.

Researcher documented environmental disease

I met Prof. Rapp for the first time at a congress in Bad Emstal about 18 years ago. It was a crucial experience. In her presentation, she showed a video about a teacher who became ill from contaminated carpeting in the school. The teacher was filmed during a reaction to contaminated dust from the carpet. This video vividly conveys to the viewer what MCS is and what a reaction can look like. At that time I was at the very beginning of my own illness and had had similar reactions to certain pesticides. The teacher experienced convulsions and fell unconscious. I thought “my goodness, that’s me, that’s exactly like me, that’s what you have…“ After the lecture I spoke with Prof. Rapp and that was the beginning of an ongoing exchange of information and an interesting friendship. We met again at conferences in Germany, Holland and in the U.S., visited each other in Germany and the United States and exchanged e-mails. When I visited her in Scottsdale, she showed me one of her video archives. She had stored thousands of videos of children whom she had treated. They showed the patients during and after therapy and during testing of foods, mold, pollen, dust mites or chemicals. They displayed impressive evidence that can remove any last doubts as to the existence of environmental illnesses and allergies.

We can no longer ignore environmental illnesses

Dr. Binz and his wife invited the environmental doctor for this most recent visit to Germany. We had actually arranged to meet for a trip along the Moselle, which would start before lunch. We had a warm reunion and before we knew it we had already exchanged information and ideas and were in the midst of planning for future projects.

“I’m over 80 years old now and have no children, I don’t really need to be doing all this and I could be enjoying my peace at this age, but I see what’s going on, and I simply cannot remain silent. We have so many chemicals in our environment, in the food we eat, in the water we drink and the air that we are constantly breathing. They affect each of our body systems and we can no longer ignore this. Almost every second person in my country has cancer and that is just not acceptable”, says Doris Rapp.

“The politicians and the public must realize the impact the flood of chemicals has on us and no one should keep insisting that we do not know where all the increasing diseases that occur are coming from. The evidence is there. We have animal testing to prove it. That’s why, as a doctor, I ask: How much more has to happen before we admit to the real causes? I won’t accept hearing when one says, “Yes, but there’s nothing we can do about it.” Yes, there is, because you can educate yourself and there’s a hell of a lot you can do,” says Prof Rapp, who is enraged about the current situation.

Solutions are often very simple

Prof. Rapp is no one who can be at odds with the world and ignore the solutions. She is in the process of writing another book. “It will be a small book, only 30 pages. Every reader can easily understand how he/she can shape his environment in order to stay healthy. The tips in this book will not cost anyone a fortune, they can easily be implemented without major expense. It will help anyone who wants to change something and wants to improve his health. The doctor cites two examples:

“Many people react to foods, but are not sure towards which foods. Expensive tests are not necessary. I advise people to think about what they eat most, foods that they downright crave. Experience has shown that these are the foods that are eaten every day and most likely those which cause reactions. The solution: omit the suspected food for a week. You can test one food after another. This costs nothing! ”

“Some people live in a house that is contaminated with pollutants or contaminated by mold. My experience is that five out of seven people can improve their health by 70% if they obtain a high quality air cleaner that is capable of filtering hundreds of chemicals from the air in your home. Such a device may cost a bit, but I have often seen patients who got better over night. So it’s worth it if you are unable to directly move out of the apartment or house.”

The new book will be published this year, and Professor Rapp has authorized me to translate it into German. She also gave me permission to translate videos and other books into our language, contributing knowledge to allergy sufferers and chemically sensitive people in the German-speaking countries, helping them to find a way back into life.

A trip along the Moselle

During the drive to the historic Moselle wine village, Bernkastel, to Traben-Trabach and the drive back to Trier, Prof. Rapp was bursting with innovative ideas that we will begin to put into action in the next few months and they will benefit the environmentally ill in many ways.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, 12 September 2011

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Hamburg hospital offers rooms for patients with MCS and environmental illness

After much effort, the Agaplesion Diakonie Hospital in Hamburg, Germany has designed two rooms for people with MCS and multiple allergies. For many years, local support groups have worked tirelessly to try to integrate environmentally controlled hospital rooms in the hospital. For the first time ever, it is possible for people who suffer from environmental illnesses or severe allergies to be in a hospital for medical treatment which is tailored to their health issues.

Environmental rooms for MCS, the environmentally ill, and multiple allergic patients

Since February 2011, with the move into the newly built Agaplesion DIAKONIE Medical Center in Hamburg (formerly the hospitals, Old Oaks, and Bethany Elim), for the first time, a hospital has two special pollutant free rooms prepared for those with environmental allergies, and MCS patients. The special environmental rooms have been built with much care. They consist of a single and a double room. Both rooms are connected by a vestibule from the other station areas separated so that chemical-sensitive patients do not come in contact with the usual hospital chemicals and fragrances from other patients.

Medical treatment, surgery, obstetrics

The Agaplesion Clinic offers the two environmental rooms which have been specially prepared for the treatment of patients in the medical environment including the following hospital departments in the with an integrated spectrum:

  • Internal Medicine
  • Geriatrics (geriatric medicine)
  • Diabetes
  • Surgery, Hand Surgery, Plastic Surgery
  • Gynecology, Obstetrics
  • Orthopedics
  • Anasthesia, Intensive Care

Criteria for inclusion in Environmental Room

There is a briefing which takes place through a doctor or the emergency room. During the first contact a message states that the patient wants a shot in the environmental room. The Agaplesion Clinic requires patients have medical evidence showing MCS (multiple chemical sensitivity), environmental allergies / intolerance (allergy multi-) and / or a present a chronic intoxication in the patient. A MCS and / or allergy passport is also useful to explain the need for inclusion in a special room environment.

Core Unit of the Environment Room

Rooms in conventional hospitals are not suitable for chemically sensitive patients. In general, the wards have PVC flooring and particleboard furniture. The environmental rooms in the Agaplesion Clinic have given much effort to create a plan that recognizes the needs of MCS sufferers with good air quality issues. The two environmental rooms were built with the low emission of air pollutants / safe building materials and furnishings, to ensure the safety for hypersensitive patients.

Some examples of the special features of the environmental room:

  • Walls and ceilings with running Fermacell Green Line plates
  • Massive exterior walls are lime
  • Walls and ceilings painted with lime paint
  • Rooms are equipped with a wall heater
  • Floor is made of ceramic tiles.
  • Window and door frames are insulated with hemp
  • Doors are made of glass
  • Exposure to electromagnetic fields has been reduced, including through the installation of power circuit breakers
  • Furniture is made of enamel, metal, or stainless steel

The clinic staff shall ensure low-emission patient care:

  • Attention is given to see if there are fragrance-containing and damaging products in patient vicinity.
  • Patients are asked about their possible food intolerances to allergies, to drugs, disinfectants, medicines and anesthetics.
  • A dietitian takes into account the patients’ food intolerances
  • At the medical station information is summarized, and this can be viewed at any time by medical staff.
  • The staff of the station is working together very closely with the support group „environmental illnesses MCS + CFS.”
  • The room environment is cleaned with fragrance free detergents, but a disinfecting cleaning is essential to neutralize odors, so the patient is offered the use of effective microorganisms (EM 1).
  • When necessary, patients may bring their own food which is kept in a refrigerator at the door. A kettle is also available there.
  • The bedding of the entire hospital is fragrance-free but these patients are permitted to bring their own bedding.

Special measures for the benefit of environmental patients

  • The use of fragrance-free and low-polluting products is offered to patients and their visitors
  • The use of cell phones and smoking are not permitted in this area
  • Living together requires all patients in the environmental room practice understanding, respect and helpfulness

Hospital life – side note

Important information for environmental patients and their physicians, that the Agaplesion Clinic is a hospital and not an environmental clinic. In a hospital procedures are regulated and special requests cannot be met. The Agaplesion Clinic breaks new ground by providing the two environmental rooms. The employees are trained on MCS and environmental illness, but they are dependent on cooperation between the patients, so that a smooth clinical work can be guaranteed. Perhaps at first patients won’t have the highest satisfaction, but patients should be understanding and possibly contribute constructive suggestions for improvement since this is the first attempt at providing environmentally safe rooms in a hospital. It is important for patients with chemical sensitivity (MCS) to realize that this is a new development at the clinic. For those with hyper-sensitivities, a stay at the hospital, despite careful selection of materials, initially may be fraught with problems because of outgassing and ecological matters.

The Chemically Sensitive are thankful for their commitment

The MCS support groups in Hamburg, which for years pursued the goal of a “MCS-friendly hospital room in a hospital” give hearty thanks and appreciation to the doctors, hospital planners, architects and government agencies that were involved in this project. All the best and much success for the safe environment in the new rooms at the Agaplesion Clinic!

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, 1 March 2011

Translation: Christi Howarth

Literature:

Agaplesion Diakonie Hospital Hamburg, newsletter: environmental rooms for MCS patients and the environment / multiple allergies, January 2011

Contact:

Agaplesion DIAKONIE Hospital Hamburg

Hohe Weide 17, 20259 Hamburg, Germany, Tel: (040) 7 90 20 – 0, Fax (040) 7 90 20 – 10 79, E-mail: info@dkh.de, Internet: www.dkh.de

Further CSN articles about MCS:

Paradox – Danish MCS sufferers are denied help because of the lack of scientific documentation – which nobody wants to obtain!

Series:  “The Danish MCS Research Centre in the International Field of Vision

Part III:

Until 2008 it was a common practice in Denmark for local authorities to grant severe MCS sufferers free aid under the service law, section 122, by giving them half mask respirators with activated charcoal filters.

In 2008 a severe female MCS sufferer had her application rejected by the local authorities for this respirator. This case ended at the Danish appeals board, which upheld the rejection on the following grounds:

“…there is no medical documentation for the chronic manifestations of the disease (MCS), its causality, lack of diagnostic criteria and treatment, as well as there is no medical documentation that the mask can sufficiently remedy functionality in her daily life.”

After this incident, a number of MCS patients had their grants for the respirators with filters also suspended by their local authorities, referring to the above ruling.

At the same time, there is no hospital ward in Denmark at all that is committed to examine, diagnose, treat and/or guide this group of severe MCS suffers. All instances refer to the Research Center for Chemical Sensitivities in Copenhagen, which was established in 2006 with minimal grants, but which does not occupy itself with MCS patients, except for using them as test subjects in PhD studies or projects.

The Research Center denies research effects of mask respirators on the MCS population

After the ruling by the appeals board, a great number of MCS sufferers contacted the Research Center to make them document the effects of the respirators with filters for the MCS population, since these are for the time being, the only efficient treatment option for those with MCS, besides the so-called avoidance strategy which leads to social isolation and thus to the possible risk of a subsequent psychological impairment due to isolation from the outside world in the MCS patient’s life. However, this isolation can be reduced by wearing a mask respirator.

To the MCS sufferers’ great astonishment and despair, the Research Center, however, published on its homepage that they were not going to research the effects of half mask respirators with activated charcoal filters on the MCS population. Their arguments, were among others, was that an investigation into the effects of mask respirators on MCS sufferers would require a clinically controlled study, and such a study must be both placebo-controlled and double-blind in order for the results to become reliable and useful.

Thus, the Research Center does not prioritize spending research funds on a study of mask respirators, but focuses instead on researching possible disease mechanisms and other therapy strategies. (1)

In this way, Danish MCS sufferers can see no prospect of anyone obtaining the documentation required by the Danish social system. Thus there is no prospect of being granted mask respirators, the aid which is extremely vital for sufferers – a crazy paradox not worthy of a modern welfare society.

Instead, the Research Center regards electroconvulsive therapy of MCS sufferers as interesting

Simultaneously with the above, the Research Center was following a male MCS sufferer who accepted being subjected to electroconvulsive therapy over six months (at first eight electroshock treatments over three weeks, and after that every two weeks), and on the basis of this one MCS patient’s subjective evaluation of the effect of this electroconvulsive therapy – a ”study” that, of course, was neither placebo-controlled nor double-blind – the Research Center published a scientific article: ”Electro- convulsive Therapy Substantially Reduces Symptom Severity and Social Disability Associated With Multiple Chemical Sensitivity: A Case Report. “Elberling et al. (2) with this conclusion: “In this case, a substantial, positive effect on symptom severity and social disability related to MCS was obtained by an initial somatizing patients course and maintenance treatment. Electroconvulsive therapy should be considered an option in severe and socially disabling MCS, but more studies are needed to evaluate if ECT can be recommended as a treatment for MCS.”

The limited research funds are gladly spent on Mindfulness therapy

Also, the Research Center is planning to spend its very limited funds to research the effects of Mindfulness based cognitive therapy on MCS.

In 2008 the Research Center performed a pilot project study in cooperation with the Center of Psychiatry, The Copenhagen University Hospital, where the title of this pilot project on the homepage of the Copenhagen University Hospital was ”Mindfulness based cognitive therapy of somatizing patients, primarily MCS patients.”

However, this title was in haste changed to: “The Effects of Mindfulness Based Cognitive Therapy with Persons with Hypersensitivity to Fragrances and Chemical Substances,” since MCS sufferers found out that the Research Center, in cooperation with the Center of Psychiatry, considered them mentally ill. Jesper Elberling, the then scientific leader of the Research Center, had meanwhile passed it all off as a “mistake.”

Right now, in continuation of this above-mentioned pilot project, a PhD study is being planned, to investigate the effect of Mindfulness on the MCS population. This is obviously one of those therapy strategies in which the Research Center gladly prioritizes its limited research funding, notwithstanding that Danish MCS sufferers again and again have told the Research Center that mask respirators are an efficient therapy strategy, whereas no one has ever heard or hears about MCS sufferers who have experienced any effects on their MCS from Mindfulness therapy.

Will the Research Center follow its own persistence and demand the placebo-controlled and double-blind studies in its coming research?

In the near future, the Research Center will start up its new study on the effects of Mindfulness therapy on MCS, and we shall then see if the Research Center will actually live up to its own demands and arguments that therapy effects require [DP1] a clinically controlled study, which is both placebo controlled and double-blind, in order for the results to become reliable and useful.

These demands apply hopefully not only for therapy forms, (the effects of which the Research Center does not want to document), such as half mask respirators with activated charcoal filters that are indeed vital to most severe MCS patients, and at the moment are the only treatment strategy that gives MCS sufferers the temporary possibility of being able to move about in the public domain, and which severe MCS sufferers experience as a highly efficient therapy strategy. However this highly efficient therapy strategy lacks – according to the Research Center – ”scientific documentation” which apparently nobody in Denmark wants to obtain.

Author: Bodil Dam Bak Nielsen, Denmark

Translation: Dorte Pugliese for CSN – Chemical Sensitivity Network

Series:  “The Danish MCS Research Centre in the International Field of Vision

Part I: MCS – Multiple Chemical Sensitivity: A Report from Denmark

Part II:Changes of the international science of chemical sensitivity at the Danish Research Centre for Chemical Sensitivities?

Unanimous Vote for Research Center for MCS, CFS, FMS, GWS in New Jersey

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.

Rehab Center said – bring a Wheelchair when you pick him up

An Account from the Editor of the CSN-Blog

Several years have passed. We still had local self-help groups and met monthly. We kept contact by phone, because barely none of our members had internet. Most of them became ill by chemicals at the workplace. Though it is ten years ago, we still remember certain people or episodes. Last week when a woman with Chemical Sensitivity (MCS) and severe toxic injuries sent an article for the blog, in which she reported on the struggle with the German Federal Insurance Institution for Employees because of a scheduled Rehab, we returned to a case.

Marked by chemicals

We had a meeting of our local “Workgroup of Chemically Injured”. The guy was rather young but looked quite older. He entered the room escorted by his sister. She had to support him, because the young man lost his sense of balance. After the speeches we chatted. The Sister said her brother was already exhausted as he tried to listen and he is nearly unable to speak. Once he worked at a big car tire manufactory. Now he is a health wreck. In spite of his harrowing state of health, the social pension fund created stress and refused to pay. The Workers Compensation didn’t act any more cooperatively: they denied realizing a connection between the desperate state of health and the chemical exposure at work. Though he was on the ropes, the young man was not willing to accept the experience of injustice by these insurance companies in addition to his physical suffering.

Brain damage by solvents

His sister told that he has gone through brain surgery. They hoped to manage his vertigo and his brain symptoms with a demanding operation. There was no improvement – rather the opposite. Most of the day he stayed in his room and watched videos. Contact with his friends was nearly broken for two reasons. The young man was no longer capable of conversation and he was unable to drive his car to his friends, who lived in neighboring locations. Friends who still came to visit him in the beginning were completely shocked by the bad health of their peer and could hardly deal with the sight. This few visits were the result, and then nobody came again.

Injured by chemicals at workspace

But for all of that the family of the man endeavored to enhance his state. The sister said that his condition isn’t always the same, so she hopes that there will be some turn for the better. She asked what the family may do to achieve a bit of health stabilization. At that time, my first advice to her was to arrange the man’s room to be absolutely free from chemicals and to abandon plastic materials completely, because he had become ill from synthetics, solvents and rubber.

The sister listened to my detailed explanations, how a clean room for a chemically sensitive person should look like. After that she rated the room totally inappropriate, in which the former quite vital young man spent nearly all of his time. There he had a TV, a video recorder, many video tapes, carpeting, a normal foam mattress in the bed and vinyl wallpaper. A room like the ones of many millions other young folks.

Aid by the family

The family was serious about it. They wanted to see the young man healthier again. They dedicated all their efforts. Two rooms at ground level were arranged for him. They tiled the floor and finished the walls with safe natural paint. They obtained a good air purifier, a mattress from natural material and made everything compatible.

Scarcely two months later the sister called me by phone. As she started to speak, the depression in her voice had completely disappeared. It is unlikely to believe, but her brother feels better worlds apart. At Saturday he even was able to visit his friends in the neighbor town riding his car without any help. She said, the whole family is overjoyed, because they didn’t consider such a recovery possible any more. The young man only became dizzy, when he was exposed to certain chemicals. He learned to detect such situations and avoided exposure. He left instantly when he realized them. Step by step his former vitality returned. The sister called more often and proudly reported on his further progresses.

Rehab in face of the delicate state of health

Then there was another call. Completely upset, the sister told that her brother received a letter from the social pension fund. He’s scheduled for a rehab. They rang up to tell the official from the German Federal Insurance Institution for Employees about the state of the young man and that he needs a chemical free environment and organic food. There was no understanding: he was liable to cooperate or otherwise his entitlement under pension scheme will be lost. The result of a call to the specified rehab clinic was that nothing there met the requirements for the young man’s health. Nevertheless he had to go into the regimen, they wanted to estimate his working ability and stabilize him, as they said.

Bring a wheelchair

At the next call, the voice of the sister was nearly dead. She told that her brother really had been in those rehab. She picked him up yesterday. He was there for nearly four weeks. When she phoned in, she was not permitted to speak with her brother. This was not beneficial for the therapy, they said. The day before yesterday they called her in the morning. She was told she could pick up her brother and may please bring a wheelchair.

Anger and pain

The sister reported that she broke out in tears as she came for her brother. No trace was left of the previous improvements in his health. His state was worse than before all the measures which had been taken by the family with great efforts and financial costs.

She had to carry her brother into the car helped by a male-nurse. She asked the nurse what had been done with her brother in the rehab. He shook his shoulders and turned his view to the floor. At this moment she had boiled with rage and went into the building then and closely looked at it. Heavy chemical smell from carpeting engulfed her. It’s just newly installed, so it still smells, the nurse told her. She asked to be shown to the room. Carpeting, smell of disinfectants, particle board furniture etc.

The refectory, in which her brother was urged to take his meals, was more than 100 meters away. To reach it he has to pass a long hallway without windows for ventilation, floored with carpeting which badly smelled from chemicals and adhesives. He repeatedly begged to be allowed to have his meals in the room, which was not allowed. Other patients even had offered to bring him the meals to save the staff from extra work. The directive was not changed; the young man had to resort to the refectory for the meals, where he additionally was exposed to perfumes, after shave and other scents. As he became unable to make it through the long hallway afoot, he got a walking frame, shortly later they gave him a wheelchair.

The indoor pool of the rehab was near the brother’s room. The odor of chlorine flooded the whole area. In spite of his heavy reactions to chlorine he had to take part in the exercise therapy in the swimming pool for several times. He was exempted from participation when he nearly “drowned” in the pool, because of a reaction.

In a strained voice the sister said after her report: “They have not made my brother healthy, they have executed him and now I know why I never was allowed to have a word with him. Any health success he had before the rehab therapy is destroyed.”

Health decline by rehab

This is no isolated case even if it is in his consequences one of the most worst cases ever reported to me. There are no rehab facilities adapted to the needs of chemically sensitive patients in Germany.

If patients with Chemical Sensitivity scheduled for a rehab ask about the local environmental conditions and explain that they cannot stay in such premises because of their reactions to chemicals, they were blamed for a lack of cooperation.

Some chemically sensitive persons had to accept a substantial decline of their health, because they were scheduled to rehab clinics which offered neither organic food nor chemical free environmental conditions, and where the smell of scent agents and disinfectants flooded the whole building.

Many chemically sensitive retirement pensioner aspirant tried to hold out – or managed somehow to hold out, to avoid being alleged for having not “cooperated”. These chemically sensitive patients feared to forfeit their pension claim. An enhancement wasn’t ever reported in a single case. On the contrary: what the chemically injured persons had regained by many restrictions and a environmental controlled living space was lost.

Finally? Hopefully

But it seems the German Federal Insurance Institution for Employees sees reason to show some understanding. A single mother struggled until the Insurance understood. Finally, the rehab measure for which they put her under heavy pressure was withdrawn, accepting her MCS and due to the lack of a suitable clinical facility for chemically sensitive patients.

Author: Silvia K. Mueller, CSN – Chemical Sensitivity Network, April 6, 2010

Translation: Thank you very much to BrunO!

Proof-reading: Thank you very much to John!

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