Archive for category ‘treatment‘

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?

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

In January 2006, at the initiative of the Ministry of the Environment, a Research Centre for Chemical Sensitivities was founded in Denmark. The Center was designed to offer treatments to those with MCS and research fragrance sensitivities in more detail. The initial hope that originally flowed through this center, funded by the Ministry, was to benefit MCS sufferers and to delve into medical science for those affected. Unfortunately this hope has been shattered by recent publications.

The EMM Blog will publish several articles reporting the consequences for MCS sufferers. Environmental health professionals and organizations must be well informed about the events in other countries and it appears that the Danish Research Centre for Chemical Sensitivities is striving to clearly influence the international science of MCS.

The second article of a series entitled, “The Danish MCS Research Centre in the International Field of Vision,” was written by a nurse who is suffering from MCS.

If you missend the first article of the series, read here >>

Mette Toft: MCS – Multiple Chemical Sensitivity: A Report from Denmark

What are the interests within the individual research groups regarding MCS?

Bodil Dam Bak Nielsen – In April 2010, an independent group of Italian scientists (De Luca et al.) published their research results, “Biological definition of multiple chemical sensitivity from redox state and cytokine profiling and not from polymorphisms of xenobiotic-metabolizing enzymes“.(1) The study results have shown that in MCS sufferers, the activity of erythrocyte catalase and GST were lower, whereas Gpx was higher than normal. Both reduced and oxidized glutathione were lower during nitric oxide (NO) / peroxynitrite (ONOO) raised in the MCS group. The fatty acid profile of MCS patients were shifted to the saturated part, and the IFN-gamma, IL-8, IL-10, MCP-1, PDGFbb and VEGF were elevated.

Danish MCS Science Center questions the work of colleagues

In July 2010, the Danish Research Centre for Chemical Sensitivities and Fragrance Sensitivity reported on their website, (which in the opinion of many Danish MCS sufferers is very questionable research, with the main emphasis on mental health):

“Since this is only a single study (De Luca et al.), it is necessary to review the results and pursue new studies before a conclusion can be drawn regarding the importance of immunological factors in fragrance and Chemical Sensitivities”.

“This is why the Danish Research Centre for Chemical Sensitivities plans to examine whether heightened cytokines or inflammatory factors can be detected in those with chemical hypersensitivity – REGARDLESS OF CONTACT ALLERGIES”.

Selective control?

The results of the Italians have not only showed increasing of the messenger interferon (IFN)-gamma, but also point to several metabolic parameters for accelerated lipid oxidation, as well as increased nitric oxide production and reduction of glutathione in combination with elevated inflammatory cytokines, which confirms a biological definition and diagnosis of MCS.

Contact allergy, a diagnosis of exclusion in MCS?

The former head of the Danish Research Centre for Chemical Sensitivities, Jesper Elberling , who is the senior researcher and expert, knows that the messenger interferon (IFN)-gamma plays a role in the development of contact dermatitis because of his work in the dermatology department at Gentofte Hospital. This is the cytokine messenger that the Italians have found in their research in MCS patients. The  Danish Research Centre for Chemical Sensitivities realizes from its own questionnaire that many MCS sufferers also suffer from contact allergies.

Because of this it is important to ask the following questions:

  • Is the Danish Research Centre for Chemical Sensitivities, therefore, consciously and deliberately selecting only THIS small part of the research result of the Italians to verify? Shouldn’t ALL research findings be verified before a conclusion can be drawn as to their validity?
  • Shouldn’t one of the aims of this planned research study be to look at those MCS sufferers with a contact allergy and not exclude MCS patients with contact allergy to see if the result changes?
  • Is the Danish Research Centre for Chemical Sensitivities able to demonstrate that this result (the De Luca A et al. research) can be attributed, according to a large part of the MCS sufferers who participated in the study, must have suffered from contact dermatitis, and that this research can therefore be attributed to this fact?

Will their study results attempt to discredit the Italian research?

Only then the Danish Research Centre for Chemical Sensitivities could thus bring the present research results into disrepute, which would neglect the complete research result of the Italians and cast their research in a bad light.

Why not complete control?

This raises the question of why the Science Center has not decided to check the other research results of the Italian scientists who need to be reviewed well before the Center may consider their findings valid.

Martin Pall’s theory (the fatal NO / ONOO cycle), states that among other things, MCS sufferers experience an increased nitric oxide production, which has indeed been demonstrated by the researchers from Italy. The Danish Research Centre for Chemical Sensitivities cannot refute this research result.

The Italian scientists have shown that, in accordance with Martin Pall’s theory, the vicious biochemical NO / ONOO cycle,three factors decreased compared to the healthy control group. It is odd that the Danish Research Centre for Chemical Sensitivities does not have evidence or the desire to disprove this.

It appears that the Italian doctors did not choose to include contact allergies in their research findings. Naturally, most biochemical substances in the body are influenced by many factors or diseases; therefore, the wish to correlate precisely this factor (interferon (IFN)-gamma) with something that is known to influence it as well (i.e. contact allergies) can be seen as an attempt to create uncertainty around the Italian research results. In this way the entire Italian study, and its results that are so important to MCS sufferers, will be questioned. Is this the intended aim of the Danish Research Centre for Chemical Sensitivities?

We certainly hope not, and hope that independent scientists will begin to verify the accuracy of all the other results, and not only select a single result, in the hopes of being able to refute the validity of the research.

Author: Bodil Dam Bak Nielsen for CSN – Chemical Sensitivity Network, August 2010

Translation: Thank you very much to Christi Howarth!

References:

  1. Chiara De Lucaa, Maria G. Scordob, Eleonora Cesareoa, Saveria Pastorea, Serena Mariania, Gianluca Maiania, Andrea Stancatoa, Beatrice Loretic, Giuseppe Valacchid, e, Carla Lubranoc, Desanka Raskovicf, Luigia De Padovac, Giuseppe Genovesic and Liudmila G. Korkinaa, Biological definition of multiple chemical sensitivity from redox state and cytokine profiling and not from polymorphisms of xenobiotic-metabolizing enzymes, doi:10.1016/j.taap. 2010.04.017, Toxicol Appl Pharmacol. 2010 Apr 27
  2. Danish Research Centre for Chemical Sensitivities, Italiensk studie sætter fokus på signalstoffer, 18.07,2010

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

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

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Biochemist proposes worldwide policy change to step up daily vitamin D intake

Vitamin D is effective in reducing frequency of many diseases and cost of medical care, stresses UC Riverside’s Anthony Norman

RIVERSIDE, Calif. – Anthony Norman, a leading international expert in vitamin D, proposes worldwide policy changes regarding people’s vitamin D daily intake amount in order to maximize the vitamin’s contribution to reducing the frequency of many diseases, including childhood rickets, adult osteomalacia, cancer, autoimmune type-1 diabetes, hypertension, cardiovascular disease, obesity and muscle weakness.

“A reduction in the frequency of these diseases would increase the quality and longevity of life and significantly reduce the cost of medical care worldwide,” said Norman, a distinguished professor emeritus of biochemistry and biomedical sciences at the University of California, Riverside. “It is high time that worldwide vitamin D nutritional policy, now at a crossroads, reflects current scientific knowledge about the vitamin’s many benefits and develops a sound vision for the future.”

Currently, the recommended daily intake of vitamin D in the United States is 200 international units (IU) for people up to 50 years old; 400 IU for people 51 to 70 years old; and 600 IU for people over 70 years old. Today there is a wide consensus among scientists that the relative daily intake of vitamin D should be increased to 2,000 to 4,000 IU for most adults.

“Worldwide public health is best served by a recommendation of higher daily intakes of vitamin D,” Norman said. “Currently, more than half the world’s population gets insufficient amounts of this vitamin. At present about half of elderly North Americans and Western Europeans and probably also of the rest of the world are not receiving enough vitamin D to maintain healthy bone.”

Reporting in a review paper in the July 28, 2010, issue of Experimental Biology and Medicine, Norman and Roger Bouillon of the Laboratory of Experimental Medicine and Endocrinology at the Katholieke Universiteit Leuven, Belgium, warn that if the current nutritional guidelines for vitamin D remain unchanged, rickets and osteomalacia, which could be easily prevented, will continue to occur.

They add that if the present guidelines for vitamin D intake are strictly implemented and applied worldwide to pregnant or lactating women, newborns and children, the occurrence of rickets in infants could be effectively eradicated.

Norman, the first author of the review paper, and Bouillon note that if the daily dietary intake of vitamin D is increased by 600-1000 IU in all adults above their present supply, it would bring beneficial effects on bone health in the elderly and on all major human diseases (e.g., cancer, cardiovascular, metabolic and immune diseases).

The researchers add, however, that if the vitamin D dietary intake were increased to 2000 IU per day and even more for subgroups of the world population with the poorest vitamin D status, it could favorably impact multiple sclerosis, type-1 diabetes, tuberculosis, metabolic syndrome, cardiovascular risk factors and most cancers.

About vitamin D:

Also known as the “sunshine vitamin,” vitamin D was discovered 90 years ago as a dietary agent that prevented the bone disease rickets.

Exposure to the sun is the body’s natural way of producing the vitamin. Skin exposed to solar UVB radiation can produce significant quantities of vitamin D. But this vitamin D synthesis is reliably available year-round only at latitudes between 40 degrees north and 40 degrees south. A combination of sunshine, food, supplements, and possibly even limited tanning exposure can raise the daily intake of the vitamin to 2000 IU.

Vitamin D is itself biologically inert. Its biological effects result only after it is metabolized first in the liver and then in the kidney – a process that converts the vitamin into a steroid hormone.

The best sources of unfortified foods naturally containing vitamin D are animal products and fatty fish and liver extracts like salmon or sardines and cod liver oil. Vitamin D-fortified food sources in the United States (the fortification levels aim at about 400 IU per day) include milk and milk products, orange juice, breakfast cereals and bars, grain products, pastas, infant formulas and margarines.

Vitamin D excess can cause health problems such as hypercalcemia, vomiting, thirst and tissue damage. The precise upper limit for daily vitamin D intake is not well defined.

Refererence:

University of California – Riverside, Biochemist proposes worldwide policy change to step up daily vitamin D intake, August 9, 2010

Photo: Katherine Densmore

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Autism: Evidence of serious harm for Antidepressants

Lack of evidence for antidepressants – Instead of benefit, some evidence of serious harm

Antidepressants commonly prescribed to people with autistic spectrum disorders cannot be recommended based on current evidence, a new study by Cochrane Researchers concludes. Despite some evidence of benefits in adults diagnosed with autism, they say there is no evidence for any benefits associated with selective serotonin reuptake inhibitors (SSRIs) in children, who may suffer serious adverse effects as a result of taking the drugs.

Autistic spectrum disorders are difficult to treat because of the range of symptoms experienced by patients, including difficulties with social interactions and communication. SSRIs are among the most commonly prescribed medications, although none have been specifically approved by any drug authority for use in autism. In the UK, most antidepressants are not approved for children for any condition. The rationale behind the use of SSRIs in autism is that they act on serotonin, the same chemical in the body that is responsible for some of the psychological processes affected by the condition.

The researchers included a total of seven trials, involving 271 patients, in their study. The trials evaluated fluoxetine, fluvoxamine, fenfluramine and citalopram. Overall, the researchers found no benefit in the five trials in children and some evidence of serious harm, including one child who suffered a prolonged seizure after taking citalopram. The two trials in adults were very small and thus, although there was some evidence for improvement in symptoms, the authors concluded there was too little evidence for the drugs to be recommended. A major problem with analysing the results was that all the trials used different measures for assessing the drugs’ effects.

“We can’t recommend SSRIs as treatments for children, or adults, with autism at this time. However, decisions about the use of SSRIs for co-occurring obsessive-compulsive disorder, aggression, anxiety or depression in individuals with autism should be made on a case by case basis,” said lead author Katrina Williams of the School of Women’s and Children’s Health at the University of New South Wales & Sydney Children’s Hospital in Sydney, Australia.

“Not all the SSRIs currently in use have undergone controlled trials for autistic spectrum disorders, but parents are often anxious to try treatments regardless of the lack of evidence. It’s important that doctors are open about the lack of evidence, and explain any risks fully, before prescribing these treatments.”

Reference: Wiley-Blackwell, Autism: Lack of evidence for antidepressants, August 7, 2010

Related Articles:

  1. Antidepressants Offer No Relief for Repetitive Behaviors in Children with Autism
  2. Children with Autism show slower pupil responses, study finds
  3. Autism – Do terbutaline- and mold-associated impairments of the brain and lung relate to autism?
  4. Neuroimaging: New insights in the pathophysiological mechanisms of Autism
  5. A prospective study of prenatal mercury exposure from maternal dental amalgams and autism severity

SERVANDO PEREZ ENDS HIS HUNGER STRIKE, BUT THE BATTLE FOR TREATMENTS CONTINUES

Professor Servando Pérez, President of Mercuriados (Spain) and Vice President of the World Alliance for Mercury-Free Dentistry, has put an end to his hunger strike for health reasons. He was carrying out his strike in the Hospital Universitario de Santiago de Compostela, Spain, in order to demand treatment for chronic mercury intoxication. Spain, which is one of the countries in the world which has produced the most mercury, but does not have, in its public health services, doctors nor the facilities to do chelation (the treatment to take toxic metals out of the body) for chronic mercury intoxication. It does however, have chelation for acute mercury intoxication, but that is an easier treatment to do. The lack of proper health services for damage done by toxic metals in Spain is experienced by thousands of people in the country. This was the reason why Servando, had the bravery to strike and show the entire world of this lack of treatment for those compromised by heavy metals.

After Professor Pérez refused to leave the hospital for a month and was on a hunger strike for a week demanding to be treated (as was ordered by a judge when he was diagnosed), the hospital finally came to an agreement to refer him to a toxicologist in Valencia. Yet, this toxicologist has already stated that in Spain there are not any hospitals which can treat chronic mercury intoxication, so the solution to Servando’s situation and for thousands of other people in his situation in Spain is still up in the air. We are now entering into a second phase of this fight which involves meeting with the Spanish Ministry of Health.

We, the Spanish associations of patients with environmental illnesses (Multiple Chemical Sensitivities, Chronic Fatigue Syndrome/Myalgic Encephalitis, Fibromyalgia, Chronic Intoxication by Toxic Metals), continue to fight for appropriate treatments by the public health care system. We want to thank Servando Pérez for his bravery, his coherence, and for being an example for all of us. We know that during his stay in the hospital he was pressured and harassed by doctors and administration, including very aggressive behavior on the part of the psychiatrists who wanted to diagnose him as having a psychiatric disorder.

We also want to thank all the scientists, doctors, associations and individuals who, all over the world, have, during Servando’s lock-in and hunger strike, have contacted the Spanish and the Galician authorities to protest for Servando’s situation and who have shown support for our fight. We hope to continue to count on your support.

We are all Servando!

Viva Servando!

Clara Valverde, President Liga SFC, Spain, August 1, 2010

(on behalf of Servando who is too ill to write)

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