There is a connection between fibromyalgia and MCS confirmed by studies. Patients suffering with fibromyalgia (FM) have reported frequent complaints which are outside of their problem area of the musculoskeletal system, and chemically sensitive patients, in addition to their reactions to low doses of chemicals, repeatedly experience pain in different body regions. Fibromyalgia is commonly regarded as an atypical soft-tissue rheumatism. The diagnosis is made mainly by an examination of 18 pressure sensitive parts of the body, called tender points. Scientists from Scandinavia reported more than ten years ago that there is an overlap between MCS and fibromyalgia, which has major relevance for the medical diagnosis for patients. A recent Canadian study in February 2010 confirmed this result. The authors of this study, in a medical journal, appealed for adequate education and specific related information in the health field and to the public in order to improve the prognosis for patients.

Pain on pain

Patients with fibromyalgia or chemical sensitivity often experience pain which they describe as a “toothache all over the body.” Scientists from Scandinavia reported in the late nineties of the existing relationship between these two diseases.

What exists for fibromyalgia patients also exists for MCS patients?

The objective of a pilot university rheumatology study was to determine how often MCS occurs in patients with Fibromyalgia. The research team designed a questionnaire decided whether the patients indeed also had MCS. The physicians used criteria from a new study by using an immunological profile of patients who could be identified with this disease. Patients responded with a yes or no response to confirm the presence of 48 FM-related symptoms. (1)

Study finds link between MCS and FMS

The results of the study were published in the first half of 1997 in the medical journal, “Scandinavian Journal of Rheumatology.” Thirty-three of the 60 patients with fibromyalgia fulfilled the criteria for MCS. Eleven of those patients met more restrictive criteria, which demonstrated the high severity of chemical sensitivity. In addition, scientists found that the sensitivity symptoms and reactions of the triggering substances that were most frequently cited by the FM patients were similar to those reported by MCS patients in other studies. A chemical sensitivity existed in more than half the patients with fibromyalgia, thus the Scandinavian researchers concluded that MCS may be an additional symptom in the complex spectrum of fibromyalgia.

Canadian study confirmed the simultaneous existence of MCS and FMS

The fact that both conditions exist simultaneously has been affirmed by studies in recent years. The targeted diagnosis should be considered because of the potentially dramatic effects on the sufferers of MCS and FMS. This was evident in a study of the environmental clinic (EHC) in Toronto. The Canadian researchers studied 128 patients for the presence of MCS, CFS, and FMS, and identified the impacts in their everyday lives. Eight of the 70 patients received the MCS, CFS, or FM diagnosis, while the remaining patients had two or three overlapping diagnoses. What a great impact in the study of environmental disease for patients and readers of the magazine for Canadian GP, in the February 2010 edition. Most of the study participants (68%) had to leave work, on the average of three years after the onset of their symptoms due to their illness. (2)

Relevance for the diagnosis of environmental and mainstream medicine

The studies of 1997 and early 2010 reveal that medical practices must take a thorough medical history of the patient and make an appropriate diagnosis at the onset of one of these two diseases of FM or MCS. After the clinical results indicate a patient has MCS, then there needs to be a clarification whether or not the patient also has fibromyalgia. This can be detected with little effort by any doctor by checking the 18 tender points. At the same time, fibromyalgia patients must be asked about a hypersensitivity to chemicals which is likely, despite the lack of the study results being integrated into mainstream medicine over the last ten years. It is extremely important for rheumatologists to be familiar with the diagnosis of MCS for their FM patients. The prognosis for fibromyalgia patients significant improvement could be then specifically targeted with treatments and appropriate prevention strategies which deal with the triggering affects of chemicals.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, August 2010

Translation: Thank you to Christi Howarth.

Related articles:

• New Criteria Proposed for Diagnosing Fibromyalgia
• Unanimous Vote for Research Center for MCS, CFS, FMS, GWS in New Jersey
• Research on Multiple Chemical Sensitivity (MCS)
• Fibromyalgia Patients Show Decreases In Gray Matter Intensity

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.

-

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.

Dr. Martin Pall’s theory about MCS confirmed

FOR IMMEDIATE RELEASE

Portland, OR – July 5, 2010 – The physiological mechanism for Multiple Chemical Sensitivity proposed by biochemist Martin L. Pall has been confirmed with the recent findings of an independent research group in Rome.

Multiple chemical sensitivity (MCS), also known as chemical sensitivity and toxicant-induced loss of tolerance (TILT), is a disease initiated by toxic chemical exposure, leading to toxic brain injury that produces high level sensitivity to the same set of chemicals that are implicated in initiation of the disease. Sensitivity responses in other areas of the body are also often seen.

“Epidemiological studies show that MCS is a stunningly common disease, even more common than diabetes,” said Pall, professor emeritus of biochemistry and basic medical sciences at Washington State University. “My review of the literature and other research I’ve conducted over the past eleven years shows the probable central mechanism of MCS is a biochemical vicious mechanism, known as the NO/ONOO- cycle.”

Pall’s work is widely published in books and articles, the most recent of which is a chapter in the authoritative international reference manual for professional toxicologists, General and Applied Toxicology, 3rd Edition, 2009.

The NO/ONOO- cycle

The NO/ONOO- cycle, pronounced no-oh-no, is named for the chemical structures of nitric oxide (NO) and peroxynitrite (ONOO-). This biochemical vicious cycle mechanism predicts that each of the elements linked together in the cycle are elevated in patients suffering from MCS and related diseases. Most of the elements of the cycle have been shown to be elevated in such related diseases as chronic fatigue syndrome and fibromyalgia and also in animal models of MCS. However, several cycle elements have never been measured in MCS patients.

The recent study conducted by the research group in Rome is significant in regard to the NO/ONOO- cycle theory because it shows that three elements of the cycle are elevated in MCS patients (De Luca et al, Toxicology and Applied Pharmacology, 2010, April 27 Epub ahead of print). Those elements are the inflammatory cytokines, nitric oxide, and oxidative stress. Each of these measurements provides important confirmation of the disease mechanism proposed by Pall.

The inflammatory cytokines and nitric oxide elevation have never before been measured in MCS patients, although they have been shown to be elevated in animal models of MCS. Oxidative stress has been reported in two earlier studies of MCS patients, but the data provided in the De Luca et al study are much more extensive than are the earlier data. Consequently, these new data all provide important confirmation of the NO/ONOO- cycle as the central disease mechanism in MCS.

The NO/ONOO- cycle also is useful in understanding the role of toxic chemicals in MCS and the role of treatment. Each of the seven classes of chemicals implicated in MCS are thought to act indirectly to increase the activity of the NMDA receptors, which are glutamate receptors for controlling synaptic plasticity and memory function. This activity, in turn, leads to rapid increases in intracellular calcium (Ca2+), nitric oxide and peroxynitrite (ONOO-), acting to greatly stimulate the NO/ONOO- cycle.

“Many of the agents used by environmental medicine physicians to treat MCS patients can be viewed as lowering different parts of the cycle, and thus are validated in part by this mechanism,” Pall said. “Consequently, the NO/ONOO- cycle mechanism can be viewed as validating therapeutic approaches used in environmental medicine in the U.S., in Germany and some other areas of Europe and in some other countries.”

Contact:

Martin L. Pall, PhD

Professor Emeritus of Biochemistry and Basic Medical Sciences

Washington State University

(1*) 503-232-3883

martin_pall@wsu.edu

Main web site: www.thetenthparadigm.org

German Website: www.martinpall.info

Related Articles:

• MCS – Multiple Chemical Sensitivity, a disease caused by toxic chemical exposure
• Martin Pall about genetic evidence and Multiple Chemical Sensitivity
• Chemical Sensitivity – MCS and a number of medical conditons respond positively to Sauna Therapy
• MCS-Multiple Chemical Sensitivity at “General and applied Toxicology 3rd Edition”

No Longer Focusing on Tender Points

The American College of Rheumatology (ACR) is proposing a new set of diagnostic criteria for fibromyalgia that includes common symptoms such as fatigue, sleep disturbances, and cognitive problems, as well as pain. The new criteria are published in the May issue of the ACR journal Arthritis Care & Research.

“These new criteria recognize that fibromyalgia is more than just body pain,” said Robert S. Katz, one of the authors of the new criteria and a rheumatologist at Rush University Medical Center. “This is a big deal for patients who suffer symptoms but have had no diagnosis. A definite diagnosis can lead to more focused and successful treatment and reducing the stress of the unknown.”

Routine lab tests can not detect fibromyalgia, a condition that is characterized by unexplained pain from head to toe and exhaustion. Instead, the diagnosis has been made by a tender point test, a physical exam that focuses on 18 points throughout the body. When light pressure is applied to these points, clustered around the neck, shoulder, chest, hip, knee, and elbow regions, patients with fibromyalgia feel tenderness or pain.

To meet the previous diagnostic criteria, which were established in 1990, patients must have widespread pain in all four quadrants of their body for a minimum duration of three months and experience moderate pain and tenderness at a minimum of 11 of the 18 specified tender points.

“There are numerous shortcomings with the previous criteria, which didn’t take into account the importance of common symptoms including significant fatigue, a lack of mental clarity and forgetfulness, sleep problems and an impaired ability to function doing normal activities,” said Katz.

According to Katz, fibromyalgia pain may fluctuate, which can affect the number of tender points, and the tender point test did not adequately measure symptom severity or the effectiveness of new treatments.

“The tender point test also has a gender bias because men may report widespread pain, but they generally aren’t as tender as women. Fibromyalgia may be under-diagnosed in both men and women because of the reliance on 11 tender points, and also due to failing to account for the other central features of the illness,” said Katz.

Additionally, due to the confusion regarding the tender point test, the authors note that most primary care doctors don’t bother to check tender points or they aren’t checking them correctly. Consequently, fibromyalgia diagnosis in practice has often been a symptom-based diagnosis. The new criteria will standardize a symptom-based diagnosis so that all doctors are using the same process.

The tender point test is being replaced with a widespread pain index and a symptom severity scale. The widespread pain index score is determined by counting the number of areas on the body where the patient has felt pain in the last week. The checklist includes 19 specified areas.

The symptom severity score is determined by rating on a scale of zero to three, three being the most pervasive, the severity of three common symptoms: fatigue, waking unrefreshed and cognitive symptoms. An additional three points can be added to account for the extent of additional symptoms such as numbness, dizziness, nausea, irritable bowel syndrome or depression. The final score is between 0 and 12.

To meet the criteria for a diagnosis of fibromyalgia a patient would have seven or more pain areas and a symptom severity score of five or more; or three to six pain areas and a symptom severity score of nine or more.

Some criteria will remain unchanged. The symptoms must have been present for at least three months, and the patient does not have a disorder that would otherwise explain the pain.

To develop and test the new criteria, researchers performed a multicenter study of 829 previously diagnosed fibromyalgia patients and a control group of rheumatic patients with non-inflammatory disorders using physician physical and interview examinations. The data were processed by the National Data Bank for Rheumatic Diseases.

The authors note the study has a number of limitations. They recommend a follow-up test in the primary care setting that includes patients with other rheumatic conditions to determine the rate of misclassification that may occur.

The study was funded by Lilly Research Laboratories. Lilly Research Laboratories did not participate in the design of the study, see the results of the study, or review the manuscript or submitted abstracts.

Literature:

Rush University, New Criteria Proposed for Diagnosing Fibromyalgia Suggests No Longer Focusing on Tender Points, May 24, 2010

WE KNOW THEY ARE LYING TO US

-

(ANTI-TOXIC MANIFESTO)

-

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.

-

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