LIVING WITH ME

Mononucleosis, the curse of high school and college students, doesn’t have to bring social and academic lives to a screeching halt, researchers say. Instead, the disease can be treated to shorten the duration of the illness and reduce the chance of transmission.

In a study presented Sept. 14 at the Interscience Conference on Antimicrobial Agents and Chemotherapy in San Francisco, University of Minnesota researchers found that students who receive an antiviral medication early in the course of the illness become less sick than those offered the standard advice to rest for several weeks.

http://www.baltimoresun.com/

I read something recently that really moved me — one man’s account of what he calls “pain beyond words.” It was in a New York Times blog, and it contained some profound statements to which I related at the deepest level, including this:

“I have no patience these days with the Nietzschean cliché, ‘That which does not kill us makes us stronger.’ I’ve found that the deepest pain holds no meaning. It is not purifying. It is not ennobling. It does not make you a better human being. It just is.

All the worst pain does is reduce us to our most primal animal. We want it to stop. We want to survive. It short-circuits any sense of self, diminishes us to a bundle of biological reflexes.”

http://chronicfatigue.about.com/

From the British Medical Journal, 21 October 2009 (by Ned Stafford in Hamburg)

Concerns are growing in Germany about the safety of the swine flu vaccine that will be available to the general population after news was leaked last weekend that top politicians and some government employees will be given an alternative.

http://www.meassociation.org.uk/content/view/1057/161/

Version 5 of our continually updated advice on the swine flu pandemic contains additional information on swine flu vaccine (>> section 15) as well as updated feedback from people with ME/CFS who have had swine flu, and where appropriate taken Tamiflu (>> section 17).

http://www.meassociation.org.uk/content/view/1054/161/

This is a very brief summary of key points from the APPG meeting held in Committee Room 21 at the House of Commons on Wednesday 21 October, 2009.

http://www.meassociation.org.uk/content/view/1053/161/

A consultation on the Legacy Paper for the All Party Parliamentary Group (APPG) on M.E. was launched yesterday (October 22).

http://www.meassociation.org.uk/content/view/1052/161/

RETROVIRUS XMRV and ME/CFS:  WHAT DO WE KNOW SO FAR?  AND WHAT DON’T WE KNOW? (VERSION 2)

This is a considerably extended and updated version of our first summary on XMRV research.  It includes additional information relating to questions that are coming to the MEA about the research findings, in particular questions concerning possible transmission and spread of XMRV, availability of private and NHS tests for the virus here in the UK, possible treatment of XMRV with antiviral drugs, and volunteering for UK research studies. We also report on a new research study from Germany that has queried the link between XMRV and prostate cancer.

http://www.meassociation.org.uk/content/view/1051/161/

The 2008 Annual Meeting Highlights for the AMA House of Delegates Reference Committee on Amendments to the Constitution and Bylaws was recently published on the internet.

Of immense interest was the statement declaring that, “The AMA also will encourage the training of medical students, physicians and other health professionals on the human health effects of toxic chemical exposures.”

http://www.americanchronicle.com/

Figures released today show an assessment focussing on what people can do,  rather than what they can’t, is stopping more people getting trapped on long-term sickness benefit, a key aim of the Government’s major welfare reform.

http://www.meassociation.org.uk/content/view/1044/161/

More than two-thirds of applicants for a new sickness-related benefit are failing in their claims, suggesting many of the 2.6 million existing incapacity benefit claimants will be forced on to a lower level of benefit when they are assessed over the next two to three years.

http://www.meassociation.org.uk/content/view/1045/161/

It’s always startling when someone puts your unspoken feelings into words. That happened to me recently when reading through comments left here, when The Minkey wrote:

“I was so confused as to whether what I was feeling was real or whether it was all a trick of my subconscious. When I felt unwell, I ‘knew’ things weren’t right. When I felt well, I doubted the unwellness.”

This exactly describes something I’ve gone through, especially during my early fibromyalgia flares and remissions.

http://chronicfatigue.about.com/

Today The Times Health Guide takes a look at fibromyalgia, a mysterious ailment that afflicts both women and men with a range of symptoms that include pain, fatigue, poor sleep, tingling and memory problems. Diagnosis can take a long time (see Anne Underwood’s story, “The Long Search for Fibromyalgia Support”), and there is no cure. Though about a third of patients respond to F.D.A.-approved drugs for the condition, many more seek relief through lifestyle changes and alternative and complementary therapies.

http://consults.blogs.nytimes.com/

Once thought to be “yuppie flu”, scientists have now confirmed that chronic fatigue syndrome (CFS) is most likely a deregulation of the immune system influenced by specific toxic agents, such as infections, vaccination, and consumer products.

Chronic fatigue syndrome (CFS) is characterized by disabling fatigue, unrefreshing sleep, headaches, depression, cognitive dysfunction, and body pain. More than 4 million Americans suffer from CFS. While more frequent in women aged 40-59 years, people of all ages, ethnicities, economic statuses, and both sexes may develop CFS.

http://www.americanchronicle.com/

Those of us with fibromyalgia and chronic fatigue syndrome have enough to think about when it comes to the regular seasonal flu shot. Now the swine flu (H1N1) is adding a whole new set of problems.

http://chronicfatigue.about.com/

The foods you eat, or don’t eat, can help you get a good night’s sleep. You probably already know that if you drink too much coffee or slam down too many energy drinks, you’re going to have a tough time sleeping at night. If you have too many sleepless nights, start with reducing your caffeine intake.

http://nutrition.about.com

I am writing this in high summer, which is prime tick season. Consequently, in this installment, we will examine one of the most mysterious and frustrating conditions associated with summertime activities: Lyme disease. This comes about thanks to the comments of Joy Sablatura in response to my article about Sjogren’s syndrome.

http://www.massagetoday.com/

I’ll never forget the day I was diagnosed with Fibromyalgia Syndrome (FMS) in April of 2003. My neurologist, who had been treating me for several weeks for head and neck injuries resulting from a rear-end collision, conducted an 18-point trigger test [pressure-point test of the soft tissue area]. As he had suspected, I appeared to be suffering from FMS.

http://www.t-g.com/blogs/1443/entry/30190/

Sue Gimpel and Lisa Dubois are both mothers of three.

They want what’s best for their children, which is why one mom will be vaccinating her children against the swine flu virus and the other mom will not.

Their decisions illustrate the concerns many parents have about the vaccine for swine flu, also known as H1N1, and about vaccinations in general.

http://www.pressdemocrat.com/

In the studies of genomics, it is essential to select a small number of genes that are more significant than the others for the association studies of disease susceptibility. In this work, our goal was to compare computational tools with and without feature selection for predicting chronic fatigue syndrome (CFS) using genetic factors such as single nucleotide polymorphisms (SNPs).

http://7thspace.com/

The Get Better Together program is now up and running and Dawn Sawatsky hopes everyone who stands to benefit from the program will take advantage of the opportunity.

Sawatsky is the North Eastman Health Association’s (NEHA) regional coordinator for the program as well as a wellness facilitator.

http://www.beausejourreview.com

This time of year always makes me feel exhausted. I find my visits to Starbucks increasing every September as the month signals the beginning of so many things starting up again.

The job, kids going back to school, board meetings, fundraisers and committee work — it all makes me feel so fatigued. Some causes of fatigue include stress, overwork and not enough sleep. Doesn’t this strike a chord with most of us? Welcome to my world.

The National Institute of Health defines fatigue as “a feeling of weariness, tiredness or lack of energy.” Fatigue is differentiated from drowsiness or sleepiness but often is accompanied by a desire to sleep.

http://www.sun-sentinel.com/

Q: “I have always dreaded the Holidays. They make me feel so overwhelmed. Could you please tell me HOW to pace myself? I have never been able to do it. I have been in the go, go, go then crash mode for so long. I have never really learned how to pace. I guess that sounds silly … but could you break it down for me? Thank you so much! Beckie”

http://chronicfatigue.about.com

THERE is a crucial inaccuracy in a headline I read; Northern Ireland’s only ME Clinic closes down (September 18). This was a clinic, like the other 12 in the UK, which treated patients with many kinds of illness, each having different physical and/or psychiatric origins, subsumed under the generic Chronic Fatigue Syndrome, to which people who have Myalgic Encephalomyelitis are also referred. I don’t think any one of them has “ME Clinic” on the door.

http://www.thisisderbyshire.co.uk/

ADULTS living with a long term illness are invited to attend a free Expert Patient Programme (EPP) course coming to Kidderminster.

The (EPP) aims to help patients manage their condition, build on their own individual coping skills and improve the quality of their lives.

It is aimed at people with a long-term illness such as heart disease, diabetes, asthma, MS, arthritis, ME or Parkinson’s, chronic lung disease, or any other long-term condition.

http://www.kidderminstershuttle.co.uk/

It was a welcome fit for a returning hero. “Keith you’re a genius, you are God,” shouted someone as the thunderous applause at the Festival Hall subsided. The audience even took the traditional admonition against coughing in good heart (“Coughing is not necessary. It is a lack of concentration.”) Thus proceeded Keith Jarrett’s solo piano concert last December, his first in Britain for 17 years.

http://entertainment.timesonline.co.uk

The next All Party Parliamentary Group (APPG) on M.E. will meet in Committee Room 20, House of Commons, between 1.30 and 3pm, Wednesday 21 October.

http://www.afme.org.uk/news.asp?newsid=647

It can be hard to find reliable information about natural medicines such as herbs and nutritional supplements, yet many of us with fibromyalgia and chronic fatigue syndrome rely on these kind of treatments. Now, I’m very happy to introduce a new resource from About.com — Natural Medicine A-Z.

http://chronicfatigue.about.com/

The only treatment centre for ME sufferers in Northern Ireland has closed down.
The clinic, based at Belfast City Hospital, was run on a voluntary basis by a consultant psychiatrist who has a special interest in the condition.

http://news.bbc.co.uk/1/hi/northern_ireland/8262115.stm

Hemispherx Biopharma Inc.’s board of directors on Wednesday approved plans to spend up to $4.4 million on upgrades to its North Jersey plant to enhance production of three products.

Only one of the products, the genital warts treatment Alferon N, has Food and Drug Administration approval.

http://philadelphia.bizjournals.com/

Pain management is a big problem for anyone with chronic pain — medical science just hasn’t figured out good was to relieve pain. For those of us with the unique pain types of fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS), it’s an even bigger problem. That’s because many of us are highly prone to side effects, and because some pain killers don’t do a lot for us. For those who do have success with pain medications, some days we need more help than they can provide.

http://chronicfatigue.about.com/

Professor Kenny De Meirleir is a world renowned researcher and Professor of Physiology and Internal Medicine at Free University of Brussels in Belgium.

He will be presenting two seminars on recent research and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

The first night is a public information seminar for patients, carers and families, and the second event is an information seminar for health practitioners.

When: Thursday 29 and Friday 30 October 2009, 7pm.

http://www.healthnews.infoxchange.net.au/

The NJCFSA Conference – New Initiatives in Treatment, Diagnosis, and Disability for Chronic Fatigue Syndrome (ME/CFS) – will feature fresh findings and plans explained by leading experts, plus Q&A sessions.

Date: Sunday, Oct 18 11:30-4:45 (includes buffet lunch)
Location: Eatontown, NJ – Sheraton Eatontown Hotel Conf. Center
Co-Sponsor: Monmouth Medical Center

http://www.prohealth.com/

Wilson’s “Under Our Skin,” has managed to transform the unlikely topic of a bacterial infection into a critical hit on the festival circuit.

The film is also credited with reigniting a discussion about the merits of Lyme, an ailment that’s been largely misunderstood – or flat out denied – by the medical establishment. In the United States, the Centers for Disease Control and Prevention reported 35,000 new cases of Lyme disease last year, a 71 percent increase over the past two years, which means new Lyme cases are almost as prevalent as new HIV cases (39,000). Because Lyme tests are inaccurate and cases go unreported, one CDC estimate put the true number of current cases at 300,000.

http://www.sfgate.com/

Remember back in school, how the kids would ask to have class outside on sunny spring days? Seems those kids are on to something — sunlight is good for your brain.

Of course, the sicker we are with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS), the more we tend to stay inside. It’s a natural consequence of not feeling well — but does it also make us feel worse?

About.com