LIVING WITH ME

There’s a long list of reasons why Brenton Brown’s latest album – the staggeringly good ‘Adoration’ – will capture hearts and minds.

http://www.christiantoday.com

Two studies recently published in Neuroendocrinology Letters suggest underlying factors of the cardiovascular irregularities some research has linked to chronic fatigue syndrome (CFS or ME/CFS).

http://chronicfatigue.about.com

As the trial of Kay Gilderdale puts ME back in the spotlight, we ask why more is not being done to help sufferers

It says a lot about the public perception of myalgic encephalomyelitis (ME) that it is a surprise to find that Nicola Warner is lively, positive and talks a lot. That’s the initial impression anyway. It’s only when you spend a little time in her company that you notice a certain stillness or perhaps sadness in her face and it becomes obvious that she is not entirely well.

http://www.timesonline.co.uk/tol/life_and_style/health/features/article6998742.ece

A DETERMINED mum-of-six has gone from being stuck in bed with a debilitating illness to winning races and helping orphans.
Kazy Vincent-Janes, 42, banished her ME and fybromyalgia through a healing programme known as the Lightning Process and is now passing on her knowledge to cure others.

http://www.dorsetecho.co.uk

As students from across all year groups bustled in confidently for the induction lunch at the University of Derby, Lauren braced herself to begin meeting people again. She was entering her second year of drama studies at Derby, having complAdd Neweted her first at the University of Worcester. Lauren suffers from ME, arthritis and endometriosis, which causes her constant pain, and recent ill health had forced her to transfer universities to be closer to home.

http://www.timesonline.co.uk

THESE are extracts from a letter sent to the Chief Medical Officer, Professor Sir Liam Donaldson, appealing to him to think about ME before his retirement in May 2010:

http://www.thisisderbyshire.co.uk

The next meeting of the All Party Parliamentary Group on ME will be held 1.30-3pm, Wednesday 10 March 2010, Committee Room 18, House of Commons. The agenda will follow in due course.

http://www.afme.org.uk

The theory that chronic fatigue syndrome could be caused by a virus that jumped from mice to people has been dealt a blow by a British study that has found no evidence of the virus in people diagnosed with CFS.
Scientists are also warning people with the condition of the dangers of dosing themselves with antiretroviral drugs.
http://www.newscientist.com

The ME Association is continually updating its website information and guidance for people with ME/CFS in relation to swine flu, Tamiflu and swine flu vaccination.

http://www.meassociation.org.uk

The perennial problem of trials such as this from ICL and those funded by the Medical Research Council is that they do not use well defined patient cohorts which can negate the research results.

To replicate a research study the patient samples used and the methodology have to be the same and in this case it appears that there are differences in both compared to the study published online 8 October, 2009 by the Science magazine.

The organisations in USA who discovered the XMRV retrovirus used the Canadian Guidelines to select patients for their research and  Invest in ME feel the Canadian Guidelines should be used for all research.
Those who portray ME as a somatoform illness are fully aware that using patients who do not fit strict selection criteria will obviously skew results. We therefore have serious doubts about the the results of the ICL research.
If the correct patient cohorts are not participating in the trials or different methods are used then this will affect the results.

The result of finding no sign of XMRV would point to a different methodology to that used in the research published by the Science magazine 3.7% of controls tested positive.

The work performed by the Whittemore-Peterson Institute (WPI) and the National Cancer Institute and the Cleveland Clinic is of the highest quality and has been validated by Science magazine.
Much more research is underway and the results from the first XMRV replication trials such as these from ICL prove little.
People with ME and their families should expect these “false” results to be publicised early, especially as ME has been ignored by the government and research organisations for generations. However, the new XMRV research has changed the landscape for good and patients and carers can look forward to a new era of ME/CFS research based on the biomedical basis for the illness.

Proper science is now finally being performed.

Those who have delayed or stopped high quality biomedical research into ME from being performed in the past, and those who continue to downplay the significance of the new research from WPI, will not be in a position to continue this denial for much longer.
The WPI have promised more exciting news which we can expect to hear at the forthcoming 5th Invest in ME International ME/CFS Conference on 24th May in London.

Invest in ME remain convinced that the WPI research is of monumental importance to the future of research into ME and we look forward to the future and the momentum in biomedical research into ME which the XMRV research has generated.

PLEASE TAKE THE TIME TO VISIT AND POSSIBLY OFFER SUPPORT

UK scientists say they can find no proof that a particular virus is the cause of chronic fatigue syndrome (CFS) or ME, contrary to recent claims.The Imperial College London team say they want to share the findings as some patients are pinning their hopes on drugs to fight the virus called XMRV.

http://news.bbc.co.uk

Open letter to Professor Sir Liam Donaldson, Chief Medical Officer: An appeal to think about ME before he retires in May 2010.

http://www.shetland-news.co.uk

Chronic fatigue syndrome is characterized by extreme fatigue that makes it difficult to complete life’s daily tasks.
It has no known cause or cure, but the National Women’s Health Information Center says you can take steps to help manage its symptoms:

http://www.palmbeachpost.com

5th Invest in ME
International ME/CFS Conference 2010

A New Era in ME/CFS Research

in Westminster, London, on 24th May 2010.
This promises to be an interesting conference which will use as its theme the education of healthcare staff regarding ME/CFS.

Following the increased interest in biomedical research into ME brought about by the discovery of the XMRV retrovirus by the Whittemore-Peterson institute, the National Cancer Institute and the Cleveland Clinic it is important that healthcare staff as well as patients are acquainted with the current biomedical research and are aware of the consequences of ME.

http://www.investinme.org

The story in 2009: A team of researchers of the Whittemore-Peterson Institute at the University of Nevada, Reno discovered a new “bug” that can be transmitted via blood and other human fluids.Judy Mikovits and Vince Lombardi, the institute’s two lead researchers, discovered a link between a new infectious human retrovirus dubbed XMRV and people who have Chronic Fatigue Syndrome.

http://www.rgj.com

My Health Experience : After a very long, painful battle, Julie McCarthy says she feels very well for the first time in 22 years.

I LIKEN IT now to a silent scream. I was screaming inside, dying for people to understand the desperate sadness, anxiety, fear and pain that were overwhelming me. Everyone around me could see something was wrong, of course – I was disappearing in front of them, emotionally and physically, but they were as helpless as I was. In the late 1980s and early 1990s, depression wasn’t associated with young girls from happy, middle-class families in suburban Dublin. We were all clueless.

http://www.irishtimes.com

We talked here awhile ago about how hard it can be to answer the question, “How are you?” That’s just one of many social situations that become awkward when you’re living with fibromyalgia and chronic fatigue syndrome. I wanted to share with you a comment that Laurie made on that blog to start a conversation about another one of “those” questions.

http://chronicfatigue.about.com

One of the main and largely unrecognized health problems facing the Western world and people on diets of highly refined, processed and starchy foods, which are often low in or devoid of dietary fiber, is that of constipation. This is a particular issue with Celiacs where the gluten-free flours they use are largely starch based and often low in protein and dietary fiber. Unfortunately, we live in a world where it is often considered normal and acceptable to empty the bowels perhaps 2 -3 times a week, rather than the more desirable 2 – 3 times per day.

http://www.celiac.com

Stoneham firefighter Eric Bernat believes there is an alternative way to effectively treat life-long ailments – from autism to arthritis, to cerebral palsy and chronic fatigue syndrome.He sees mini-miracles happen before his eyes everyday as the co-owner of H.O.P.E. (Hyperbaric Oxygen for Physical Excellence) Connections Inc., a privately owned clinic in North Reading that provides hyperbaric oxygen therapy.

http://www.wickedlocal.com

There are many causes of memory loss. As we age, we become more prone to having problems with remembering things.

This can lead to a fear of developing dementia. But there is a big difference between becoming forgetful, and dementia.

http://www.empowher.com

A physician in town makes a trip to Dan’s Homemade Candies in Joliet every Christmas season to pick up gifts of dark chocolate-covered almonds for his friends, family and co-workers.

Both the chocolate and the almonds are good for the heart and health, he tells staff at the shop.

http://www.suburbanchicagonews.com

Santa came early this year, and instead of the usual toys, gadgets, and trinkets, he brought hope for those suffering from chemical sensitivity (MCS), Chronic Fatigue Syndrome (CFS), fibromyalgia, and electrical sensitivity.
It hasn’t escaped notice that the above conditions behave in somewhat the same way, and many people suffer from more than one of these ailments. Without knowledge of a specific cause however, treatment has focused on holistic treatments, and a complete recovery was thought to be impossible.

http://www.examiner.com

NEW YORK (Reuters Health) – Many survivors of the severe acute respiratory syndrome (SARS) pandemic of 2003 suffer from persistent mental health problems and chronic fatigue years later, new research from Hong Kong shows.
What’s more, these psychiatric problems seemed to become more common among survivors over time, say Dr. Marco Ho-Bun Lam and colleagues from The Chinese University of Hong Kong, who call the persistence of these problems “alarming.”

http://abcnews.go.com

We aimed to review systematically the needs for support in managing illness and maintaining social inclusion expressed by people with chronic fatigue syndrome/ myalgic encephalomyelitis (CFS/ME)

Methods: We carried out a systematic review of primary research and personal (‘own’) stories expressing the needs of people with CFS/ME. Structured searches were carried out on Medline, AMED, CINAHL, EMBASE, ASSIA, CENTRAL, and other health, social and legal databases from inception to November 2007.

http://7thspace.com

Peter A. Kulish, Founder of www.BiomagScience.net:: “BiomagScience is a company devoted to the science and application of magnet therapy. Its findings and use of the proper magnetic fields on the body’s correct energy flow have provided some of the most remarkable and profound results in complementary alternative medicine.

Whether it is the day-to-day aches or pains, carpal, arthritis, extreme back pain, chronic illness or an acute injury, BiomagScience’s advanced placement therapies have helped so many that its alternative therapies have been used by practitioners and medical institutions worldwide for years.”

http://www.earthtimes.org

Few people escape the engines of modern life: a morning cup of coffee to emerge from the daze and a glass of wine at night to return into the fog.

Anna Forkan and Kristen Overlock, the owners of Revitalive Health & Wellness, stay clear of both. They have also bid farewell to meat, fish, dairy and anything else that’s not part of the raw food diet of organic unprocessed and uncooked plant food. A combined 140 pounds lighter and free from ailments that crippled body and spirit, they now share their knowledge to help others adopt new lifestyles one meal at a time.

http://www.wickedlocal.com

Xenotropic murine leukemia virus related virus (XMRV) has been implicated in prostate cancer and chronic fatigue syndrome (CFS). Because XMRV is a retrovirus, it has been suggested that it might be susceptible to some of the many drugs available for treatment of AIDS. Of ten licensed compounds evaluated for activity against XMRV, just one, AZT (azidothymidine), was found to inhibit viral replication.

http://watchingthewatchers.org

THE northern suburbs are on high alert against mosquitos after a surge in Ross River virus cases in SA.

An above-average 15 cases of mosquito-borne illness a week were reported across the state during November, with an unusually high number of cases in the metropolitan area. UniSA’s Mosquito Research Unit head Craig Williams said most of the cases were of Ross River virus a debilitating condition with symptoms similar to Chronic Fatigue Syndrome such as joint pains, rash, fever, fatigue or muscle pain.

http://news-review-messenger.whereilive.com.au

The latest from a really helpful ProPublica project that breaks down how health-care reform would affect specific groups illustrates how the bill seeks to standardize state participation in Medicaid programs. The piece profiles a young single woman unable to work because of Chronic Fatigue Syndrome, who was forced to move from Maine — where she was only eligible for temporary Medicaid — to Pennsylvania, one of only 15 states in which low-income adults are eligible for Medicaid benefits.

http://www.prospect.org

Brain fog (a.k.a. fibro fog, cognitive dysfunction) doesn’t get enough respect and attention from the medical world, in my opinion. I know it’s had a bigger impact on my ability to hold a traditional job and to write from home than any of my other symptoms have had. I can deal with pain — heck, sometimes I write better when I’m really hurting because I have to focus more — but I can’t write through the fog!

http://chronicfatigue.about.com