LIVING WITH ME

Laura Hillenbrand, the best-selling author of “Seabiscuit: An American Legend,” is known for her exuberant storytelling and dynamic characters. Her newest book, “Unbroken: A World War II Story of Survival, Resilience and Redemption,” is a riveting tale of the life of an athlete and war hero, Louis Zamperini.
Laure HillenbrandWashington Post/Getty Images Laura Hillenbrand

Ms. Hillenbrand’s ability to transport her readers to another time and place is all the more remarkable in light of the fact that she is largely homebound, debilitated by chronic fatigue syndrome, or C.F.S.

nytimes.com

The journal Retrovirology has recently published (20 Dec 2010) results from four different groups (Hue et al., Sato et al., Oakes et al. and Robinson et al.) [1] which dispute the association of XMRV with ME/CFS or prostate cancer and suggest evidence of possible mouse contamination of PCR evidence. Hue et al. go as far as to say that XMRV might not be a genuine human pathogen.
investinme.org

MORE than 54,000 children are suffering with the debilitating condition ME.

One in 100 under-18s, including infants and toddlers, are affected by the problem, which causes chronic fatigue, a study by specialists at Bristol University reveals.

Separate research shows the condition is the biggest medical cause of long-term school absence. Researcher Dr Esther Crawley said: “Until recently we have not known the scale of the problem. There are areas of the country where parents are desperate to get treatment yet their primary care trust refuses to fund it.”

 http://www.meassociation.org.uk

Do you have trouble recognizing people’s faces?  It wasn’t a problem I’d ever heard about in connection with fibromyalgia and chronic fatigue syndrome, but when a reader left a comment about it I had an “ah-ha” moment.

About.com

This will be the sixth annual Invest in ME international biomedical conference on ME/CFS.

The conference will be held on 20th May 2011 in Westminster, London and builds on the successful biomedical research conferences organised by Invest in ME in previous years.

As in previous years Invest in ME aim to raise awareness of the neurological illness myalgic encephalomyelitis (ME/CFS). This conference will highlight the need for a national strategy for biomedical research which will lead to treatment and a cure for this devastating illness – an illness which is 5 times more common in the UK than HIV/AIDS – yet which has had comparatively little funding spent on biomedical research.

http://www.investinme.org/IiME%20Conference%202011/IiME%202011%20International%20ME%20Conference.htm

Following publication of Professor Malcolm Harrington’s review of the Working Capability Assessment (WCA) in November 2010, Chris Grayling, Minister for Employment, asked Professor Harrington to assess the two groups of WCA descriptors that currently relate to (a) mental, intellectual and cognitive functioning and (b) fluctuating conditions such as ME/CFS.

 http://www.meassociation.org.uk/

The memory and concentration problems frequently known as “fibro fog” or “brain fog” are common in fibromyalgia and chronic fatigue syndrome, and new research shows that they’re also common in people with chronic spinal pain.

In the study, more than 17% of participants with pain said they had trouble with concentration, while just over 20% said they had problems remembering information. They did worse than healthy people in tests gauging memory, attention, mental flexibility and dealing with numbers and letters.

About.com

The first Government programme to reassess people on incapacity benefit showed that a “substantial number” of claimants have the potential to return to work, ministers have announced.

Provisional figures of 1,347 reassessments in Burnley and Aberdeen showed that 399 (29.6%) were found to be fit for work, 422 (31.3%) will receive unconditional support and 526 (39%) could look for work “with the right help and support”.

 http://www.meassociation.org.uk

In 2001, I had the next couple of decades of my life mapped out. I’d be teaching law, visiting my children, and attending Buddhist meditation retreats.

Suddenly, everything changed. I got sick with flu-like symptoms. A doctor said it appeared to be an acute viral infection.

I have yet to recover. The infection has left me mostly house-bound and often bed-bound.

For the first few years of being sick, I lived in what I can only describe as a state of shock. I couldn’t believe I wasn’t getting better. When I didn’t recover, I blamed myself. I fell into alternating states of anger, denial and despair.

http://www.npr.org/2011/01/31/132675079/learning-to-live-a-full-life-with-chronic-illness

The Department for Work and Pensions have just announced that they are extending their consultation on changes to the Disability Living Allowance (DLA) from 14 February  to 18 February.

No reason has been given for the extension but it may be related to reported crashes at the relevant DWP website or Government may just be listening to the views of people who have not yet managed to complete the questionnaire.

 http://www.meassociation.org.uk

Action for M.E. CEO, Sir Peter Spencer, has appeared live on lunchtime TV to discuss recent clarifications in the law on assisted suicide.
The BBC South East Today programme was aired after Director of Public Prosecutions, Keir Starmer, issued new guidelines on whether people should face prosecution for helping a person to commit suicide.

 http://www.afme.org.uk

From Public Service Review: Central Government, Issue No 21, 6 January 2011 (article by Rhona Johnston, professor of psychology, University of Hull).

University of Hull Professor of Psychology Rhona Johnston argues against the widespread belief that ME/chronic fatigue is a psychological condition…

 http://www.meassociation.org.uk

Consultation results on Pathways

Following a workshop in January, the Department for Work and Pensions (DWP) asked Action for M.E. and others who had participated for ideas about how their Pathways to Work scheme could be improved. Action for M.E. consulted people with M.E. for their views and experiences and have sent their response to the DWP today.

 http://www.afme.org.uk

Analysis of cerebrospinal fluid in chronic fatigue patients for multiple ubiquitous viruses and XMRV

 http://www.meassociation.org.uk

All three main political parties have answered calls by Action for M.E. and the Association of Young People with M.E. (AYME) to outline their election pledges for people with M.E.
Responses to our Election manifesto for M.E. have now been received from Labour, the Conservatives and Liberal Democrats.

http://www.afme.org.uk/news.asp?newsid=757

This afternoon, we received a further letter from the NHS National Research Ethics Service about the pilot study which aims to compare the Lightning Process with specialist medical care for children with ME/CFS. It contains an apology to Mr Phil Parker for any embarrassment or difficulties caused by previous publication of inaccurate information about his business.

 http://www.meassociation.org.uk

There are of course a million things that you can’t do, and another million you shouldn’t do, if you’re flattened by Chronic Fatigue Syndrome. Here’s my personal list, learned the hard way. These are gleaned from my early years with this CFS, before I’d learned–well, anything really–that could help reduce symptoms.

http://www.empowher.com/

FOR seven years Bernadette Snopek suffered in silence with chronic pain and fatigue.

The Forest Hill resident was unable to work, muster the energy to leave her bed and lived on painkillers.

“You feel like you have the flu but you never get any better,” Snopek said.

“Instead your life just falls apart.”

http://whitehorse-leader.whereilive.com.au/news/story/long-road-to-recovery-1/

Inflammation is considered by a range of medical professionals to be the underlying culprit for a wide spectrum of autoimmune and other chronic diseases. Many serious ailments such as diabetes, rheumatoid arthritis, multiple sclerosis, Alzheimer’s and numerous forms of cancer have been linked to inflammation. Allergies, asthma and chronic fatigue syndrome appear to be associated with inflammation as well.

http://westwood-washington.patch.com/articles/reduce-inflammation-by-following-these-local-diet-tips

When you’re in constant pain from fibromyalgia, chronic fatigue syndrome or some other source, it can be hard to find anything to be happy about. The pain can envelope us and seem to blot out the sunshine.

My fibromyalgia has been largely in remission, but a recent knee injury has had me in a lot of pain and unable to do much for several weeks. I’ve been frustrated and angry about having another limiting health factor, and a bit depressed because I was back to missing out on life.

http://chronicfatigue.about.com/

Chronic fatigue syndrome (CFS) is a debilitating chronic illness affecting at least 4 million people in the United States. Understanding its cost improves decisions regarding resource allocation that may be directed towards treatment and cure, and guides the evaluation of clinical and community interventions designed to reduce the burden of disease.

7thspace.com

Those of us with fibromyalgia and chronic fatigue syndrome usually have problems with sleep, and no matter what TV drug commercials may say, treating them is rarely as simple as popping a pill.

Many of us have recognized sleep disorders, while others are diagnosed only with the vague term “unrefreshing sleep.” Studies show that disordered sleep rhythm is common in us, especially something called alpha-wave intrusion — basically, alpha brain waves, which are the most alert form, inexplicably show up in the deepest stages of sleep. Some of us sleep very little, some of us sleep for huge amounts of time, but very few of us ever feel rested and refreshed upon awakening.

http://chronicfatigue.about.com/

Chronic fatigue syndrome (CFS) produces physical and neurocognitive disability that significantly affects health-related quality of life (HRQL). Multidisciplinary treatment combining graded exercise therapy (GET) cognitive behavioral therapy (CBT) and pharmacological treatment has shown only short-term improvements.

To compare the effects on HRQL of:

(1) Multidisciplinary treatment combining CBT, GET, and pharmacological treatment, and

(2) Usual treatment (exercise counseling and pharmacological treatment) at 12 months of follow-up.

http://www.prohealth.com/library/showarticle.cfm?libid=15869

A SERIOUSLY ill York woman has asked the Government to fund more research in to conditions which cause chronic fatigue.

Christine Wrightson, 64, had been confined to bed in her Huntington home after being struck down by a mystery illness in 2006. After NHS investigations failed to provide a diagnosis, Mrs Wrightson went private and was found to be suffering from pituitary disease and hypocortisolaemia, conditions similar to ME.

http://www.yorkpress.co.uk/

Nestled behind a small plaza in Fall River is a medical facility that has quietly operated for 15 years.

The Nova Scotia Environmental Health Centre on Highway 2 is currently considered one-of-a-kind in the world. This year, the facility’s staff hope to increase public awareness about what they do and the patients they treat.

Walking into the foyer, visitors are met by a polite sign advising them to disinfect hands when entering and leaving the facility. Footwear must also be removed, and no scented products are allowed.

http://www.halifaxnewsnet.ca/News/2011-01-18/article-2124947/Environmental-illness-on-the-rise/1

Last week (on Thursday, January 6th, 2011), we published the story: Chronic Fatigue Syndrome Not Caused By XMRV Virus, reporting the Wellcome Trust’s research which stated that XMRV virus – previously thought to be associated with chronic fatigue syndrome – is not the cause of the disease. We received many comments and e-mails from our readers criticizing Wellcome Trust’s conclusions and we have asked their leading scientists, who published the report, to respond to our readers.

http://scicasts.com/lifesciences/1874-bioresearch-disease-studies/3376-update-wellcome-trust-researchers-respond-to-criticism-of-their-xmrv-virus-conclusions

Long-chain acylcarnitine deficiency in chronic fatigue syndrome patients. Potential involvement of altered carnitine palmitoyltransferase-I activity – Source: Journal of Internal Medicine, Dec. 22, 2010

http://www.prohealth.com/library/showarticle.cfm?libid=15856

A SUFFERER of chronic fatigue syndrome (CFS) from Whyteleafe is preparing for the challenge of a lifetime – running the gruelling 26.2-mile London Marathon.

Emma Louise Kenealy of Godstone Road has already started training for the marathon with her friend and neighbour Lauren Finnerty.

Despite the snow and poor running conditions they have completed a 10 mile challenge in 1.5 hours. 

getsurrey.co.uk

A study recently published in the Journal of Internal Medicine suggests that low levels of carnitine may be linked to symptom severity in chronic fatigue syndrome.

Carnitine is necessary for mitochondrial energy production, so researchers theorized that low carnitine could contribute to the low energy of the condition. They measured several forms of carnitine in study participants and found significantly abnormal concentrations. Two forms were, on average, 30-40% lower than in healthy controls.

In addition, those with lower levels had a higher symptom load than those with more normal levels.

http://chronicfatigue.about.com/b/2011/01/12/low-carnitine-level-linked-to-chronic-fatigue-syndrome-sympmtoms.htm

Mindy Fox, one of the leading neurofeedback therapists in California, announced today a new neurofeedback therapy program that helps chronic illness sufferers manage and reduce stress. For those with chronic illness, stress can exacerbate symptoms. For this reason, suffers should avoid stressful situations if possible. However, that is not always realistic. This new program provides long term stress management without the use of medication or unrealistic lifestyle changes.

http://www.openpr.com/news/157871/Mindy-Fox-Announces-New-Neurofeedback-Therapy-Program-for-Chronic-Illness-Sufferers.html