LIVING WITH ME

by Dr. Elizabeth Dowsett and Jane Colby

People with ME are not just ‘normally’ ill (to use a contradictory phrase!). They do not just have sore throats and swollen glands, but may feel – and be – more ill than they have ever felt in their lives.

Without personal experience, this is difficult to imagine, so ‘outsiders’, whether doctors, teachers, or family, often do not realise the seriousness of what they are dealing with. More and more studies show physical damage.

http://www.investinme.org/Article-035%20Betty%20Dowsett.htm

How much are you paying for prescription medication? Newer medications like Lyrica, Cymbalta and Savella are expensive, and a lot of insurance companies won’t foot the bill. I’ve been there, paying about $300 a month for something my insurance wouldn’t cover.

You might be surprised to hear that a lot of people get those same drugs for a lot less money, or even for free. A lot of things are in place to help you (safely and legally) save money on your prescriptions.

http://chronicfatigue.about.com

Because of the name, Chronic Fatigue Syndrome, the other symptoms besides fatigue that make up this illness are often downplayed by the medical community. Chronic Fatigue Syndrome is a distressing disease that affects the entire body and widespread pain is a common symptom experienced by these patients.

http://www.associatedcontent.com/

October 29-30 has been set as the date for a meeting of the Chronic Fatigue Syndrome Advisory Committee in Washington, DC. (See Sep 4 Federal Register notice, appended below.) Though CFSAC meeting agendas have typically been published at the last minute, CFSAC members indicate that the CDC plans to present its 5-year strategic CFS research plan at the meeting.

http://www.prohealth.com/

In the past few years, I’ve had an increasing number of young people in their 20’s and 30’s scheduling telephone consultations for help with their health. Their stories are frighteningly identical. In fact, I outline a chronology of health to illness in several of my books. My clients are amazed because I can predict what happens next in their story. The chronology is as follows and the result is anxiety, depression and lack of confidence. They also have many physical symptoms like heartburn, yeast overgrowth and are swallowing a closet full of medications. But for them, their mental, emotional symptoms are the most distressing because every physical symptom they have is attributed to their mental state and their doctor just prescribes yet another anti-depressant or anti-anxiety drug.

By Dr. Carolyn Dean, MD, ND

http://www.newswithviews.com/

Harrison Hampton Publishing is pleased to announce, fibromyalgia expert Dr Rodger Murphree, author of recently released 4th Edition of Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome, has recently posted a series of free online videos- Treating and Beating Fibromyalgia.

Birmingham, AL (PRWEB) September 12, 2009 — Patients with fibromyalgia are often misunderstood, ignored or viewed with skepticism by family, friends and even their doctors. Thank goodness for doctors like Rodger Murphree- he truly understands the plight of the fibromyalgia patient. Even better he knows how to help them. His Fibromyalgia Jump Start Program has thousands of patients beat fibromyalgia over the last 13 years.

http://www.prweb.com/

When you have fibromyalgia or chronic fatigue syndrome, stress is the enemy. Our stress-response system is all messed up, and it can take even small amounts of emotional stress and turn it into major physical symptoms.

http://chronicfatigue.about.com/

While the rhetoric seems to be at an all time high within both the American government and its citizenry, there seems to be a complete void when it comes to options that I would consider true health care reform. I must admit first and foremost that I am writing this article with a very biased opinion regarding health care.

http://www.americanchronicle.com/

RESEARCH BRIEF: Two different research teams have recently identified blood biomarkers for chronic fatigue syndrome (CFS or ME/CFS), something that could eventually be used to make diagnoses.

A research team at the University of Utah Health Sciences Center has identified genes that become more active after moderate exercise. This work was done on mice, but researchers say it provides an hypothesis for comparing the blood of people with ME/CFS to that of healthy people to examine the genetic activity. This is one of several teams working on diagnostic markers that result from post-exertional malaise, a key symptom of ME/CFS.

http://chronicfatigue.about.com/

As companies downsize, overwork has reached unprecedented heights, leading to tired, sleepy and stressed-out workers. But there is a way to deal with it all – exercise.

In Japan, it’s called karoshi, which means death from overwork. And while death isn’t the usual result of overwork, the additional 15 hours that it’s estimated Canadian workers put in each week (including unpaid work) compared with the 1960s means there are a lot of tired people around.

http://www2.canada.com/

KANSAS CITY, MO — September 1, 2009 — New research on treating Gulf War Illness (GWI) is being presented this week at the Military Health Research Forum (MHRF), a scientific meeting hosted by the Department of Defense (DoD) Congressionally Directed Medical Research Programs (CDMRP). GWI is a condition that affects approximately 25 percent of service men and women who served in the 1990-1991 Gulf War. It is characterized by symptoms including fatigue, headache, joint pain, sleep disturbances, and memory problems, and is potentially a result of the veterans’ exposure to toxic elements during their time on duty.

http://www.eurekalert.org/

Knowledge is power, and that goes double when you have a chronic illness few doctors know how to treat. When you have chronic fatigue syndrome, you have to do a lot of research in order to understand what’s going on in your body and make decisions about treatment and management.

http://chronicfatigue.about.com

Because fibromyalgia syndrome (FMS) and chronic fagitue syndrome (CFS or ME/CFS) are not well understood, treatment options vary from person to person. The most important approach is talking to your doctor about all of your symptoms and finding a customized treatment regimen that works for you.

http://chronicfatigue.about.com/od/treatingfmscfs/a/treat_FMS_CFS.htm

Increasingly, people suffer from chronic, diffuse pain in their muscles (as opposed to arthritic pain that affects the joints). The pain can range from mild discomfort to severe, debilitating pain that renders the sufferer unable to function in normal, dayto day life. The diagnosis of fibromyalgia — a syndrome characterized by chronic pain, stiffness, and tenderness of muscles, tendons, and joints without detectable inflammation — may be difficult, and may depend on the physician consulted. Symptoms of fibromyalgia, multiple chemical sensitivities, and chronic fatigue syndrome often overlap.

http://charlotte.floridaweekly.com/news/2009/0723/health/015.html

We Americans are a go-go people. We’re in a hurry to get practically everywhere. We over commit ourselves with tasks, errands, work and activities. We over schedule our kids, too, and eventually they come to see our hectic lives as normal.

In short, we’ve created a pace of life I’m not sure we can maintain and it’s one that I know isn’t healthy.

Redding.com

Toomey and colleagues, researchers at the Boston Veterans Administration Healthcare System, confirmed that Gulf War deployment is associated with subtle declines of motor speed and sustained attention as influenced by exposure to toxicants during deployment.

Toomey found that exposure to sarin gas released during the Khamisiyah destruction is correlated with long-term reduced motor speed in veterans that has not resolved after 10 years. Self-reported exposure to these toxicants is also significantly associated with attention deficits.

http://www.americanchronicle.com/articles/view/116167

Since our doctors frequently don’t understand what we’re going through, it’s up to us to educate ourselves and each other about how to manage and live with fibromyalgia and chronic fatigue syndrome.

About.com

The following message was issued publicly to the ME/CFS community Sep 1 via the Centers for Disease Control’s Chronic Fatigue Syndrome web page.

“Between April 15 and July 30, 2009, CDC received just over 1,000 e-mails in response to a request for input to its 5-year CFS strategic plan. Most of the e-mails utilized material from the CFIDS Association of America’s Web site or supported CFIDS recommendations, reflecting the effectiveness of CFIDS advocacy efforts. We greatly appreciate this overwhelming response, since it provided an opportunity for members of the CFS community to share their concerns.

http://www.prohealth.com/library/showarticle.cfm?libid=14837

I’ve heard disturbing things about health care from 2 people in my life:

“When a doctor prescribes you something, do you have to take it?”

“I don’t know if my doctor would approve of my naturopath’s treatments, so I’m just not gonna tell him.”

Both of these statements came from adults facing serious health issues, and in my mind they both reveal the problems a lot of us have — not taking charge of our own health.

About.com

What is Chronic Pain?

While chronic pain often stems from conditions such as arthritis, recurrent headache, back pain, or fibromyalgia, it can also result from a past injury or disease. For some individuals, however, there is no known cause or source of chronic pain.

About.com

Since you’re reading this, I’m going to guess that you could use more energy. Low energy is something all of us with fibromyalgia and chronic fatigue syndrome face, and while I’ve struggled with it for a few years, it has become more troublesome as I’ve become more functional — when you hurt too bad to move, or you can’t stay awake, you don’t care as much about energy. What would you do with it anyway?

About.com

Lyme disease — a tick-borne illness of concern in horse and cattle country — has become a battleground where the interests of patients, physicians, researchers and insurance companies collide.

Those topics are woven together in “Under Our Skin,” a film showing locally this weekend, narrated by local author Jordan Fisher Smith, who also appears in the film discussing his own battles with the health care system.

Theunion.com

I am not a believer in wishful thinking. But I have become a fan of Psychoneuroimmunology.

These two things are NOT one and the same.

Empowher.com

How did you become interested in the field of naturopathic medicine?

Growing up as a dancer, I was always interested in nutrition and a healthy lifestyle. I first became interested in science as a career path in 9th grade while researching a project on Genetics, I enjoyed the investigation work and problem-solving that science involves. As a Biochemistry major at BC and preparing for a career in medicine, I became more intrigued by the process of health rather than disease. Conventional medical thought has such an emphasis on disease that I was temporarily disinterested in medicine until I found Naturopathic Medicine: a field that combines scientific medical diagnosis with natural treatments to achieve optimal health.

Examiner.com

I really want to eat a healthy diet. I know I feel better when I do. I also need to provide healthy meals for my children. Before fibromyalgia it was just something I did. Now, however . . . well, I’m sure I’m not the only one with fibromyalgia or chronic fatigue syndrome who dreads cooking. Why do we hate it?

About.com

Good news for those of us with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) — a court has ruled that you’re protected from discrimination based on the relapse of a medical condition.

In the case, a woman had been fired for allegedly falsifying her job-required medical evaluation when her ME/CFS relapsed after a 17-year remission.

About.com

FORMER world motorbike racing champion Casey Stoner has retreated to the Territory to try to get over the mystery illness threatening his career.

He is staying at a Darwin caravan park and was seen playing computer games on his iphone before the shops opened at Casuarina Square.

Stoner, who is believed to be suffering from chronic fatigue syndrome, has dropped out of the MotoGP circuit.

World champion Valentino Rossi said that the absence of his arch rival was making the racing less competitive.

http://www.ntnews.com.au/article/2009/09/08/82571_ntnews.html

Whether Derek Tyrer has M.E. (Myalgic Encephalomyelitis), or one of the other illnesses bundled together with it in the catch-all basket diagnosis of Chronic Fatigue Syndrome, he was considered sufficiently unfit to do his job as Head of Marketing by East Lancashire Hospitals NHS Trust (PR chief takes East Lancashire Hospitals to tribunal, Lancashire Telegraph,August 4), after a good few months in the job, on either a full or part-time basis.

http://www.lancashiretelegraph.co.uk/

The Autumn 2009 edition of ME Essential magazine – delivered to all members of the ME Association – has Amazon adventurer Ed Stafford on the front cover. He’s raising money for our Tissue Bank Appeal with a long, hard slog from source of the river to its mouth. Inside, ME Essential comes much closer to home…

http://www.meassociation.org.uk/content/view/948/161/

Many people with ME/CFS are expressing fears that the Government Green paper ‘Shaping the Future of Care Together’ published on 14 July 2009 threatens the future of vital benefits like Attendance Allowance and Disability Living Allowance. The ME Association is studying the implications of this Green Paper, and will publish its initial response to the consultation next month (September).