Howard Bloom, a former publicist whose firm helped shape the careers of John Cougar Mellencamp, ZZ Top and Prince, ran into a seemingly impenetrable wall of bureaucracy when he tried to obtain a marriage license. The New York City Clerk's office told Bloom that he and his fiance, Diane Petryk, had to come to the office in person.

CFIDS struck Bloom 13 years ago, leaving him bedridden and unable to speak. "The leading cause of death from CFIDS is suicide," said Bloom, who tried to kill himself six years ago when his wife of thirty years left him. "You lose your life, you lose your family. You lose everything that allows you to be a human being," he said. "You can't stand the next minute of pain. I didn't exist in the world anymore."

In 1995 he gradually regained his speech. These days he typically gets up in the morning and prepares for the day, only to find his energy exhausted. He then rests until 4 or 5 p.m., when he goes to work on his bedside computer. It's his only link to the outside world and the dozen scientific organizations to which he belongs. He sits propped up in bed with pillows supporting his arms and a specially fitted keyboard across his lap. This brilliant Renaissance man has managed to publish two critically acclaimed scientific books on human nature. He even met his fiance, a reporter, on the internet.

Concerned because even slight exertion has led to debilitating set-backs, Bloom refused to go to the Clerk's office, especially when told they visit hospitals, nursing homes - even prisons - to issue marriage licenses. However, they won't go to private homes. Bloom had his publicist call the media, and within hours the City Clerk agreed to come to his home.

Though his problem is resolved, Bloom worries about other CFIDS patients who don't have the connections to break through red tape. "There are hundreds and thousands of people who are just like me," he said. "And they are voiceless." He's determined to empower the homebound and share with them the potential of the Internet. "It's a magnificent way of finding friends . . . and even mates. There are superb people out there as lonely as you are."

He also shares a simple message to anyone who will listen. "There is joy for you, no matter how nature may try to shrink your world." He quotes poet William Blake: "You can see a world in a grain of sand, And heaven in a wild flower, Hold infinity in the palm of your hand, And eternity in an hour...".

(Based on the New York Post article by Douglas Montero, posted by co-cure.org.

The 34-year-old son of England's Lord Chief Justice gave up a brilliant career to nurse his wife, who was struck down with "a mysterious post-viral condition". His wife Nuala faced a life of almost complete immobility and permanent exhaustion. Nuala was so weak she had to be carried down the stairs by her husband. She had just 3 per cent of her former energy, could produce no viable hormones and fell prey to all sorts of secondary infections.

Now, cutting-edge treatments tracked down on the Internet are slowly restoring her to health. "I have really started to perk up," she says. "After five years of illness, it's amazing to be able to get things done. It's transformed our lives."

Her improvement is the result of three radical and unheard of treatments, at least in England. All were discovered on the Internet and ordered from the U.S. to be administered by open-minded British doctors. The first is, perhaps, the most experimental. Every Friday, Nuala injects herself with 0.15 mg of Human Growth Hormone. It took about three weeks to take effect, but she says the difference is striking.

The second treatment involves twice-daily injections of heparin, a blood-thinning drug. "I suffer from chronic infections by certain bacteria and viruses," says Nuala. These infections cause the blood to thicken. Heparin helps Nuala's circulation, taking away toxins and increasing oxygen supply.

Nuala's final new treatment, she says, "had her GP rocking back in his chair with shock. Because of my illness, I had fallen prey to long-term secondary infections. Standard medical practice is for antibiotics to be taken for a fortnight at most. But we found that some American patients with CFIDS and Gulf War Syndrome have been on antibiotics for five or more years, with good results. I have been taking Doxycycline for two months and already feel better. Gradually, it's working. I started all these treatments three months ago and have been going from strength to strength."

(Thanks to co-cure.org for this information.)

According to Dr. Jason, "When individuals have these debilitating conditions and lack affordable housing, their conditions often deteriorate further. I have talked to people who are homeless, and more than one person has actually committed suicide. These unfortunate outcomes might have been prevented had affordable housing in a safe and protected environment been available."

Last November Dr. Jason heard about a Housing and Urban Development (HUD) program called "811". This HUD grant allows an organization to request funds to buy the land and renovate or construct new housing. Once the housing is constructed, all at government expense, the rent for those in the building would be subsidized by HUD. A person would never have to pay more than 30% of their adjusted gross income. Those who receive Social Security Disability or Supplemental Security Income would be eligible to apply for one of the units. In addition, services would be provided to those in the building, again funded by HUD, so that residents could be driven to a supermarket or medical appointments, or a cook hired to prepare meals.

The government distributes hundreds of millions of dollars each year for these types of housing initiatives. While assistance is readily available for the elderly, such a grant has never been submitted for those disabled by CFIDS, FM, or MCS.

Dr. Jason brought this program to the attention of the Chicago CFS Association, and they decided to apply for the 811 HUD grant. Last year, only 7 grants from Illinois were submitted to HUD, and 5 were funded. The Chicago group believes they have a very good chance of eventually getting this multi-million dollar grant. A housing consultant with experience in writing 811 applications for HUD is working with them. The Chicago CFS Association plans to provide services to the 15 people who will live in the proposed building. There will also be space for community work-shops and self-help group meetings.

Unfortunately, the group was not able to meet the May 31st application deadline. There have been difficulties locating land in a safe area of Chicago, as well as in securing the $20,000 needed to meet application requirements: securing "site control" of the land, conducting an environmental site assessment, paying the grant consultant, and obtaining capital investment funds.

The group continues to explore new ideas and remains committed to this project. They hope to be the first in the nation to construct affordable housing for people with CFIDS, FM, and/or MCS. Hopefully this exciting project will come to fruition and serve as a model for similar housing developments around the country, perhaps even here in the Metroplex. To donate to this project, contact Carole Howard of the Chicago CFS Association at PO Box 5480, Chicago, IL 60680, or choward@enteract.com.

(Thanks to co-cure.org and Dr. Leonard Jason for this information.) 

The court said it accepts CFIDS as a legitimate illness although its exact causes have not yet been identified. "It has already been acknowledged in medical circles as a disease that requires treatment," the court added. This is the second time that a court has ordered the organization to grant compensation in relation to CFIDS.

(Thanks to co-cure.org for posting the article by M.H. Kim from The Korea Herald, the source for this piece.) 

We're providing an introductory letter to nurses and Dr. David Bell's School Nurse News article on pediatric CFIDS on our youth website. We're asking those concerned about CFIDS to print the materials and either bring or mail them to their local school nurses. Our free PDF file has everything you need (even a cover letter), so printing it and mailing it is an easy way to increase CFS awareness.

This will be an ongoing project, so there's time to link to it from your websites, and to tell your support groups, family, and friends about the effort.

For more information about this project, please contact Terri Lupton, BSS, RN, Coordinator for Educational Opportunities tlupton@cfids.org, or Rebecca Moore c/o the Association's youth program youth@cfids.org.

To request a free print copy of the materials, please send a self-addressed, stamped envelope to School Nurse Project, The CFIDS Association of America, PO Box 220398, Charlotte, NC 28222-0398.

Thanks for helping us increase CFS awareness in our schools.

Sincerely,
Rebecca Moore
Volunteer, The CFIDS Association of America

The goal of the symposium was to explore the evidence for autonomic nervous system dysfunction, outline the limits of current knowledge, and seek to improve and accelerate future research. The immediate result was a consensus statement on five key questions regarding CFIDS and OI, which has been submitted to a peer-reviewed scientific publication.

A panel of researchers and practitioners in the fields of endocrinology, epidemiology, pediatrics, rheumatology, neurology, psychology, allergy, and internal medicine agreed that:

There is evidence of an altered autonomic nervous system and/or circulatory system in CFIDS. The exact relationship between OI and CFIDS is still unclear. Methods for studying autonomic nervous system dysfunction in CFIDS are available.

There are relationships between autonomic nervous system dysfunction and other abnormalities seen in CFIDS patients, including cardiovascular, neuroendocrine, and immunological.

More research is needed.

(From the CFIDS Association of America, PO Box 220398, Charlotte NC 28222-0398, 800/442-3437, 704/365-2343, www.cfids.org)

The mission of CFIDS Emergency Relief Services is "to alleviate the suffering from financial emergencies primarily among people with CFIDS, who, having no recourse otherwise would have to endure hunger, homelessness, and medical deprivation."

Their credo is: "Compassion is not quantitative. Certainly it is true that behind every human being who cries out for help there may be a million or more equally entitled to attention. But this is the poorest of all reasons for not helping the one whose cries you hear." (Norman Cousins, Human Options)

(Thanks to co-cure.org for this information.)

Fifty-four percent of CFIDS patients had no Primary Sleep Disorder. Levels of anxiety, depression, fatigue, and functional impairment did not differ among those with PSD and those without.

CFIDS patients with Primary Sleep Disorders could not be clinically distinguished from CFIDS patients without PSD. Researchers concluded that it is highly unlikely CFIDS is the result of a sleep disorder. (Sleep Res Online 2000 May 1;3(2):43-48) (Thanks to co-cure.org)

An excerpt from her intriguing website, seabiscuitonline.com, states "In 1938 the number one newsmaker wasn't Franklin Roosevelt or Adolph Hitler. It wasn't even a person. It was an undersized, crook-legged race-horse owned by a bicycle-repairman-turned automobile magnate, trained by a virtually mute mustang breaker, and ridden by a half blind failed prize fighter. The racehorse was Seabiscuit. This is his story."

(Thanks to co-cure.org for this information.)

Alli Joseph, a critic with TNT's "Rough Cut", called it "a compel-ling documentary that combines heartbreaking and soul-stirring personal stories with investigative reporting about CFIDS", and "a step toward overcoming the health-care industry's uncertainty, the government's skepticism and society's stigmatization." It was also screened at festivals in Santa Barbara, Cleveland, Taos and Los Angeles. It has been accepted at a film festival in Finland.

Kim Synder, the film's director and producer, contracted CFIDS five years ago while assisting on the production of Jodie Foster's film "Home for the Holidays." Bed-ridden for five months and close to paralysis, Kim felt like she was dying. She said, "It was like somebody had plugged my body into a light socket that on a cellular level I was just rotting from the inside out." She slowly improved and eventually set off to investigate CFIDS. This film is her directorial debut.

Snyder studied International Affairs at George Washington University. She became a liaison between US and Eastern European filmmakers, and soon ventured into cinema herself. See the website www.Irememberme.com for information on screenings.

(Thanks to co-cure.org for this information.)

Following a day of presentations by experts from around the world, an independent panel composed of researchers and practitioners in the fields of biostatistics, endocrinology, epidemiology, immunology, internal medicine, neurology, psychiatry, and sleep disorders agreed that:

• The nature of HPA function in CFIDS needs to be clarified. (hypothalamus / pituitary / adrenal)
• Cytokine abnormalities, neuroendocrine abnormalities, orthostatic intolerance, and CFS may be interconnected.
• CFIDS is not synonymous with depression. The panel agreed CFIDS should be differentiated from major depression.
• No link has been established between CFIDS and stress.
• Sleep abnormalities may contribute to CFIDS symptoms.
• More research is needed to define the neuroendocrine aspects of CFIDS.

FNS is a type of EEG biofeedback. It appears to address the central nervous system (CNS) symptoms experienced by many FMS patients, including "fibrofog", memory difficulties, and total body pain. Dr. Esty will discuss the clinical results of this treatment and the theory behind its effectiveness.

After her presentation, Dr. Steven Cordas, a local physician, will discuss the assessment and treatment of FMS. This will replace our regular meeting for July. It will be held at the Brookside Center (1244 Brookside Drive in Hurst) from 7 to 9 pm. The program is free, but RSVP to Dr. Karen Schultheis' office, 817-589-0043 (metro). Brookside is south of 183, in between Precinct Line and Norwood.

We will no doubt discover that while Dr. Cheney's treatment is tailored to each individual, many elements are common to all patients. If you have seen Cheney in the last two or three years and would like to participate, please contact Carol.

Dr. Richard Bruno, an expert in brain disorders, is launching an international study to determine whether the grippe, also known as non-paralytic polio, may have left those children vulnerable to CFIDS.

Dr. Bruno believes that up to half of all people diagnosed with CFIDS could have had non-paralytic polio as kids, and not known it. Those as young as 40 could have been affected.

Severe polio targeted the spinal cord and often caused paralysis. Mild polio, the "grippe", may have spared the spinal cord but left a time bomb behind in the brain. The illness could have killed neurons that produce dopamine, a chemical that helps the body stay alert and awake.

Dr. Bruno does not support medical intervention in most cases of post-polio syndrome or chronic fatigue syndrome, making him somewhat controversial among his peers. He supports something much cheaper: common sense. Sufferers should pace their activities, take breaks and stop before they get tired. Even if Bruno's research proves to be groundbreaking, experts agree that much more work needs to be done to find new treatments or a cure for CFIDS.

(Based on an article by Randy Dotinga in Health Scout, provided by co-cure.org)

If you would like to have, or be, a phone buddy, please contact Bernice, who has volunteered to organize our phone buddy connections.You can email her at gypsykiwi@aol.com or call her at 817-221-3015. If you call, you'll enjoy her delightful New Zealand accent! (gypsykiwi - get it?) Many thanks to Bernice! 

The first specific request is for a phone buddy for a member named Elaine who lives in Wylie (east of Plano and north of Rockwall). If you live in that general vicinity (NE of Dallas), and would like to be a phone buddy with Elaine, contact Bernice to set it up.

Thought y'all might want to know that there's a pain clinic associated with UTA and that there are four doctors/researchers there interested in FMS. Anyone know anything about this clinic and/or the four researchers? 

Carol Sieverling CFS/FM Support Group of DFW

J Pain Symptom Manage 2001 Aug;22(2):704-8

Kiser RS, Cohen HM, Freedenfeld RN, Jewell C, Fuchs PN.

Texas Pain Medicine Clinic, University of Texas at Arlington, Arlington, TX, USA

PMID: 11495717

Fibromyalgia is a chronic condition that is diagnosed primarily by the presence of generalized pain along with tenderness on palpation of certain body regions. Unfortunately, the pharmacological treatment of fibromyalgia remains problematic.

Two patients are described who highlight the use of the atypical neuroleptic olanzapine for the control of symptoms related to fibromyalgia. Prior to the use of olanzapine, both patients had received a multitude of treatments, none of which greatly improved their ability to function in daily activities. With olanzapine, both patients reported a significant decrease in pain and marked improvement in daily functioning.

In one case, the pain returned during a period of time when olanzapine was discontinued, an effect that was reversed when olanzapine was reintroduced. The paucity of serious side effects (i.e., extrapyramidal signs) with the atypical neuroleptic olanzapine strongly favors further exploration and use of this drug for the treatment of fibromyalgia symptoms.

Published quarterly, the DFW Lighthouse strives to inform its members and the public about a variety of topics related to chronic Fatigue Syndrome and Fibromyalgia and provide information on advocacy issues. The CFS/FM Support Group of DFW does not endorse particular products or services, and the ideas expressed the in the DFW Lighthouse are strictly those of the authors or the quoted individuals. The CFS/FM Support Group of DFW, and the DFW Lighthouse assume no liability for any medical treatment or other activity undertaken by readers. For any medical advice, consult your health-care provider. 

Submissions for the DFW Lighthouse may be sent electronically to Carol. We reserve the right to edit all submissions. You must have permission before reproducing any material from the DFW Lighthouse. This may be obtained by contacting Carol Sieverling at 513 Janann Street, Euless TX 76039, 817-283-1115, or via email. For any computer-related problems or services, design, layout, editing or writing services (preferably for hire, but pro-bono services will be considered), contact LJ Fidler. Copyright © 2000 by The CFS/FM Support Group of DFW, www.dfwcfids.org/. All rights reserved.

Search:Books Popular Music Classical Music Video	Enter keywords...