LIVING WITH ME

With drug approvals for fibromyalgia came advertisements for drugs and PSAs about the condition itself. Awareness went up. That’s good, right? Well … yes, except that it makes us a higher-profile target.

http://chronicfatigue.about.com/b/2009/02/09/the-down-side-of-fibromyalgia-chronic-fatigue-syndrome-awareness.htm

IMMUNE cells in the brain may explain why chronic illness can make people feel tired and listless, say researchers.

http://news.scotsman.com/health/Brain-cells-cause-illness-fatigue.4990216.jp

ScienceDaily (Feb. 9, 2009) — Researchers at the Swedish medical university Karolinska Institutet have shown for the first time that the active training of the working memory brings about visible changes in the number of dopamine receptors in the human brain. The study, which is published in the journal Science, was conducted with the help of PET scanning and provides deeper insight into the complex interplay between cognition and the brain’s biological structure.

http://www.sciencedaily.com/releases/2009/02/090206081507.htm

The U.S. FDA announced that has delayed the much anticipated decision on Hemispherx Biopharma Inc.’s drug Ampligen (poly I: poly C12U) for chronic fatigue syndrome. The decision was due February 25, but now the FDA say it needs another 3 months in order to review all of the data.

http://chronicfatigue.about.com/b/2009/02/25/fda-delays-decision-on-ampligen-for-chronic-fatigue-syndrome.htm

A MAJOR new artwork for the city centre of Sheffield was launched this week in its permanent home at the Victoria Hall Methodist Church.

http://www.sheffieldtelegraph.co.uk/arts/modern-art-of-gospel.4999657.jp

WASHINGTON (AP) — Two drugmakers spent hundreds of millions of dollars last year to raise awareness of a murky illness, helping boost sales of pills recently approved as treatments and drowning out unresolved questions — including whether it’s a real disease at all.

http://www.google.com/hostednews/ap/article/ALeqM5jZDQjkt1twJK_3GpRKJUbXZ_-oMwD967HPG81

Part of the social battle we all face is that most people still have no idea what fibromyalgia really is, and everyone thinks they know what chronic fatigue syndrome is, when in fact they don’t have a clue. The more we all spread the word about the true nature and severity of these conditions, the easier that battle will become.

http://chronicfatigue.about.com/b/2009/02/08/spreading-the-word-about-fibromyalgia-chronic-fatigue-syndrome.htm

The High Court reserved judgement in their Judicial Review of the NICE Guideline on ME/CFS when Mr Justice Simon closed the hearing yesterday (Thursday February 12), at about 5pm. The judgement will be given later.

More later…

Newspaper coverage so far of the legal challenge to the NICE Guideline on ME/CFS appears here.

http://www.meassociation.org.uk/content/view/789/161/

The European Court of Justice has ruled that workers who are off sick for the whole of an annual leave year are entitled to a period of four weeks paid annual leave despite the fact they they are not actually at work.

http://www.meassociation.org.uk/content/view/765/161/

Continuing to hold down a job is tough when you have fibromyalgia or chronic fatigue syndrome. If you’re lucky, you have an employer who is willing to accommodate your illness, especially since the American’s with Disabilities Act (ADA) is open to interpretation. Proving you qualify for reasonable accommodation, and what is reasonable accommodation for your illness, could be a long, hard legal battle. A new amendment to the ADA, however, could help us tremendously.

About.com

ME Association UK launches into “Myspace”

http://www.meassociation.org.uk/content/view/786/161/

The Judicial Review of the NICE guideline on ME/CFS took place on Wednesday and Thursday, 11th and 12th February, at the Royal Courts of Justice in London. The hearing was held in Court 76 – a large modernised courtroom tucked away on the third floor of this historic maze of legal activity.

http://www.meassociation.org.uk/content/view/791/161/

How often do you find yourself searching your brain for a simple word that you just can’t remember? Do you have problems writing, or understanding things you read or hear? If so, you’re certainly not alone! This kind of language impairment is a symptom of both fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS).

http://chronicfatigue.about.com/b/2009/02/03/impaired-language-in-fibromyalgia-chronic-fatigue-syndrome.htm

IMMUNE cells in the brain may explain why chronic illness can make people feel tired and listless, say researchers.

http://news.scotsman.com/health/Brain-cells-cause-illness-fatigue.4990216.jp

Two letters, one from Neil Stanghan from Bideford and the other from Karen Rippon from Ceredigion, voicing their scepticism and concerns about the Lightning Process. Both have M.E. Neil is worried that this miracle cure entails spending a large amount of money and Karen has tried the Lightning Process and it did not work for her.

http://www.meassociation.org.uk/content/view/769/70/

A new study published in the journal Clinical Biochemistry shows an irregular distribution of the important antioxidant Coenzyme Q10 (CoQ10) in the blood of fibromyalgia (FMS) patients. It was high in some areas and low in others.

http://chronicfatigue.about.com/b/2009/01/21/coq10-distribution-altered-in-fibromyalgia.htm

Fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) impact more than just those of us who have them. They also force changes and extra burdens onto the people in our lives.

http://chronicfatigue.about.com/b/2008/11/23/fibromyalgia-chronic-fatigue-syndromes-impact-on-your-loved-ones.htm

• Welcome From Sleepydust!

• What Causes ME/CFS?

• Yoga For Fatigue – Book Review

• Free Stuff – Protect Your Computer From Viruses

• What’s Your Verdict On… Graded Exercise Therapy?

• This Week’s Personal Story

• Latest News In The ME/CFS & FMS Communities

• Chicken Soup For The Sleepydust Soul

• And Don’t Forget… (Helpful Sections)

• A Few Notes

http://www.sleepydust.net/ezine-issue41-bnv.html

Tingling. Burning. Crawling. Itching. Numbness. Highly sensitive skin. All of these are odd nerve sensations that can be a part of fibromyalgia and chronic fatigue syndrome. They’re most common in the feet, hands and face, but you can get them anywhere.

http://chronicfatigue.about.com/b/2009/02/01/odd-nerve-sensations-in-fibromyalgia-chronic-fatigue-syndrome.htm

At a time of such great economic uncertainty, we’re getting an unprecedented number of inquiries about the work-place rights of people with ME/CFS  – many of whom, particularly if they had to take time off work because of their illness, are worried about whether they will still have jobs in the near future.  

http://www.meassociation.org.uk/content/view/773/70/

Professor Clive Beggs of the University of Bradford is currently undertaking a research project into the effects of high altitude exposure on patients with multiple sclerosis (MS) or chronic fatigue syndrome (CFS). He is interested in hearing from anyone whose symptoms have improved during a trip to a high altitude location. If you, or someone you know, have experienced a marked improvement in health at a high altitude location, please would you contact him by clicking HERE.

Two ME patients are launching a High Court appeal against what they say is an “unfair and irrational” approach by the NHS to their condition.

http://news.bbc.co.uk/1/hi/health/7881116.stm

Two ME sufferers, including one from London, have launched a High Court battle over the “perverse and irrational” guidance they say has been issued to doctors for the treatment of their condition.

http://www.gainsboroughstandard.co.uk/10968/39Restricted-me-treatments39-challenged-in.4969876.jp

Practice nurses need more education and training on how to care for patients with chronic fatigue syndrome (CFS), suggest UK research.

Nursing times

The ME Association will be fully supporting the two people with ME – Douglas Fraser and Kevin Short – who have succeeded in achieving a Judicial Review into the 2007 NICE Guideline on ME/CFS.

http://www.meassociation.org.uk/content/view/781/161/

Have you ever been at the doctor’s office and had a moment of thick brain fog when the nurse asked what medications you were taking? The more you take, the harder it gets to remember them all – and that can be a real problem. Now think of what could happen if you were at the emergency room, unconscious, and they gave you a drug that’s dangerous when combined with your meds.

http://chronicfatigue.about.com/b/2008/12/30/keeping-track-of-drugs-you-take-for-fibromyalgia-chronic-fatigue-syndrome.htm

Action for M.E.’s information sheets give you the facts to help manage your M.E.

M.E. A Guide: A brief introduction to M.E.

Employment and Support Allowance (ESA) info booklet

Employment and Support Allowance (ESA) diary

Controlling symptoms

A guide to benefits – revised Jan 09

http://www.afme.org.uk/infosheets.asp

A former  data input operator, Andy Hunt was signed by Newcastle from non-league Kettering Town in the early 1990s.

And the striker won over the Toon Army, lighting up some dark days under the regimes of Jim Smith and Ossie Ardiles.

http://www.chroniclelive.co.uk/nufc/newcastle-united-news/2009/02/06/joke-sparked-robbie-elliott-chicken-dance-72703-22870458/

There is less money to buy new clothes or go on holiday and the economic forecast looks gloomy. But, incredible though it may seem, psychologists claim that the best way to feel better is to help someone else out. 

Oxford Times

Anxious? Stressed? Take time out to feed your soul, and you could benefit from a little lunchtime healing.

Music, art and laughter are just some of the quick fix ways you can soothe your daily cares away.

http://www.midhurstandpetworth.co.uk/newfeatures/Good-for-the-soul-.4908342.jp

I recently found out about something that’s been weighing heavily on my mind. A woman I used to know, who had lupus and fibromyalgia, died of a pain-killer overdose.

http://chronicfatigue.about.com/b/2009/01/29/fibromyalgia-fatal-drug-overdose.htm

AFME have produced a detailed factsheet about Employment and Support Allowance (ESA), the new benefit which has been brought in to replace Incapacity Benefit.

http://www.afme.org.uk/news.asp?newsid=466

The ME Association will be fully supporting the two people with ME – Douglas Fraser and Kevin Short – who have succeeded in achieving a Judicial Review into the 2007 NICE Guideline on ME/CFS.

http://www.meassociation.org.uk/content/view/781/161/

Reminder – the two-day hearing of the Judicial Review into the NICE Guideline on ME/CFS will be held in the Royal Courts of Justice on the Strand on Wednesday and Thursday next week, 11-12 February.

http://www.meassociation.org.uk/content/view/778/161/

The European Court of Justice has ruled that workers who are off sick for the whole of an annual leave year are entitled to a period of four weeks paid annual leave despite the fact they they are not actually at work.

http://www.meassociation.org.uk/content/view/765/161/

No one knows what causes chronic fatigue syndrome (CFS), and there is no real cure. But there are some treatments that may help you feel less tired so you can be more active and enjoy life more.

http://www.guardian.co.uk/lifeandstyle/besttreatments/chronic-fatigue-syndrome-treatments

The presentation which Professor Julia Newton made to the Cross Party Group on M.E., 21 January 2009, is now available online.

Professor Newton, from Newcastle University, told MSPs: ” Our research is exploring the biological basis of fatigue in M.E./CFS and we have shown that those with fatigue have problems with blood pressure regulation.

http://www.afme.org.uk/news.asp?newsid=460

People from across the nation and around the world who suffer from Chronic Fatigue Syndrome and other neuroimmune diseases are waiting anxiously for the opening next year of a new medical research center at the University of Nevada, Reno.

The $86 million Center for Molecular Medicine will expand the university’s research capabilities into cancer and other diseases and house the headquarters of the Whittemore Peterson Institute, which offers hope in the form of clinical trials and treatment for people who suffer from such diseases as Chronic Fatigue Syndrome, fibromyalgia and atypical multiple sclerosis.

http://www.rgj.com/article/20090205/NEWS10/902050339/1321/news

Doctors are being urged by Sir Liam Donaldson, the Chief Medical Officer, to consider carbon monoxide (CO) poisoning when dealing with patients complaining of unexplained tiredness, sickness and vomiting, and vague flu-type symptoms. All these are common complaints at the moment, thanks to the numerous viruses doing the rounds. So, how can you differentiate between a simple “bug” and the early warning signs of the comparatively rare, but potentially lethal, carbon monoxide poisoning?

http://www.meassociation.org.uk/content/view/762/70/

For our new “Quick Survey” for February, we would welcome your views on how you rate the service you are receiving from the NHS for your ME/CFS.

http://www.meassociation.org.uk/content/view/776/161/

A Canadian/U.S. research team has reported a novel approach to stimulating recovery from chronic stress disorders. Details of the therapeutic model, which exploits the natural dynamics of the body’s “fight or flight” system, are published January 23 in the open-access journal PLoS Computational Biology. In contrast to conventional time-invariant therapy, the researchers propose a well-directed therapeutic push delivered according to an optimal treatment schedule.

http://www.eurekalert.org/pub_releases/2009-01/plos-ro012109.php

Barriers to the use of practice nurses in the delivery of effective management strategies for the care of people with ME/CFS have been identified in a study published today by BMC Nursing, an open-access journal publishing original peer-reviewed articles on all aspects of nursing.

http://www.meassociation.org.uk/content/view/768/161/

We’ve heard a lot over the past couple of years about the health benefits of green and black tea, and as a regular tea drinker I was glad to hear it!

http://chronicfatigue.about.com/b/2009/01/20/tea-theanine-for-fibromyalgia-chronic-fatigue-syndrome.htm

Vitamin D, found in fish and produced by sun exposure, can help stave off the mental decline that can affect people in old age, a study has suggested.

http://news.bbc.co.uk/1/hi/health/7845703.stm

Always worth a read!

http://www.investinme.org/IIME%20newsletter.htm

Because I have drug sensitivities, like a lot of people with fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS), I’m not taking any medications for my FMS. Instead, I rely largely on supplements.

A few months ago, someone in my Fibromyalgia & Chronic Fatigue Syndrome community forum mentioned one I hadn’t heard – rhodiola rosea (a.k.a. golden root). I did some research on it and decided it was one to try.

http://chronicfatigue.about.com/b/2009/01/18/supplements-for-fibromyalgia-chronic-fatigue-syndrome-vitamin-b.htm

Important ME artist Steve Craig, who regularly redefines his illness through a series of angular and jagged pictures, will have a big one-man show in north London throughout most of May – ME Awareness Month. Some of his sculpture and poetry will also be on view.

http://www.meassociation.org.uk/content/view/771/70/

BBC Look North weathergirl Trai Anfield is spending the first six months of 2009 travelling round the word to raise awareness of ME. In the process, she is raising money for ME research.

http://www.meassociation.org.uk/content/view/772/70/