LIVING WITH ME

A lot of us with fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS) take supplements to manage our symptoms – some in addition to medication and some in place of them. It all depends on what works for you, and what works is different for all of us.

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

While it’s not approved for fibromyalgia pain, the new drug tapentadol is likely to find a niche in fibromyalgia treatment. It was approved in November 2008, for moderate-to-severe acute pain, but it’s not on the market yet because it’s controlled-substance classification is yet to be determined. It also hasn’t been given a brand name so far.

http://chronicfatigue.about.com/b/2009/01/08/will-new-drug-be-prescribed-for-fibromyalgia-pain.htm

While millions of people with chronic fatigue syndrome (CFS or ME/CFS) have waited decades for better treatments, a drug called Ampligen (poly I: poly C12U) has languished in the “experimental” stage for 30 years.

Then, in October 2007, Ampligen’s manufacturer, Hemispherex Biopharma Inc., put in a New Drug Application for Ampligen as the first ever FDA approved treatment for ME/CFS. In July, the company responded to questions sent back by the FDA, and the application was officially accepted.

http://chronicfatigue.about.com/b/2009/01/06/chronic-fatigue-syndrome-treatment-will-ampligen-finally-be-approved.htm

When a New Drug Application is submitted to the FDA, there’s a deadline for when the agency is supposed to make a decision. However, the deadline for approving or denying milnacipran as a fibromyalgia treatment came and went in October 2008. At that time, the FDA said it needed more time to review data but did not give a timeline.

http://chronicfatigue.about.com/b/2009/01/04/milnacipran-for-treating-fibromyalgia-still-awaiting-a-decision.htm

What’s In This Issue?

• Welcome From Sleepydust!

• What Is The “Glyconutrients and Fibromyalgia Miracle” All About?

• Pure Synergy – Review

• What’s Your Verdict On… Acupuncture?

• 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-issue40-sdf.html

There was quite a kerfuffle last week when Labour MP Graham Stringer called dyslexia a myth, and claimed that a condition affecting up to six million people in the UK was invented by education bigwigs to cover up poor teaching.

http://style.uk.msn.com/wellbeing/mindbodysoul/article.aspx?cp-documentid=13029750

The Welfare Reform Bill was published 14 January and will get its second reading on Tuesday (27 January), when it will be debated in the House of Commons. The Bill will then go into the committee stage, when it will be looked at clause by clause by a cross-party committee.

http://www.afme.org.uk/news.asp?newsid=452

There was a question and answer in the Scottish Parliament on January 14 about what the public sector is doing to help people with ME stay at work – when the Minister for Public Health confirmed that ME does indeed come within the scope of the Disability Discrimination Act.

http://www.meassociation.org.uk/content/view/761/70/

Dopamine has different roles in different areas of your brain. In the thinking areas, it makes you able to focus your attention. Low levels of dopamine in this area are linked with ADD/ADHD. In the movement areas, it helps you control how your body moves. Extremely low levels here lead to Parkinson’s disease, which is characterized by tremors and problems with balance and coordination.

http://chronicfatigue.about.com/od/treatingfmscfs/a/dopamine.htm?nl=1

• Welcome From Sleepydust!

• Free Calls… Anyone?

• Magnetic Insoles – Review

• What’s Your Verdict On…

• 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-issue39-ttu.html

My daughter is 14 and has been diagnosed with ME. But trying to get her to take things easy is difficult. She thinks we are holding her back. But she needs to take things slowly otherwise she relapses. We just want her to get better.

http://www.yorkshirepost.co.uk/people/Expert-Answers-Can-my-daughter.4822376.jp

Do you have pain when you urinate or associated with sex? Are you running to the bathroom all the time? Are you frequently diagnosed with urinary tract infections (UTIs)?

These aren’t symptoms of fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS), and it might not be a UTI, either. You might have a bladder condition called interstitial cystitis (IC) that is common in people with FMS or ME/CFS.

http://chronicfatigue.about.com/b/2008/10/30/bladder-pain-not-a-symptom-of-fibromyalgia-or-chronic-fatigue-syndrome.htm

Edmesh has long called for an ME lead to be installed at the health board to capitalise on a report produced by them and the NHS about how services towards those with the disease should change in coming years.

http://edinburghnews.scotsman.com/health/Leader-is-appointed-to-implement.4873388.jp

NEWSBRIEF: A new study from the University of Alberta sheds light on the cognitive aspect of fibromyalgia, which is frequently referred to as “fibrofog.”

Researchers concluded that the “working memory” is impaired.

http://chronicfatigue.about.com/b/2008/12/19/startling-find-on-fibromyalgia-opiates-fibrofog.htm

The approaching new year has me wondering what I can do to improve my health in 2009. I’ve been pretty lax lately, and I’m paying for it, so I know I need to do some things for myself. It’s easy, though, to make a New Year’s resolution only to forget about it by March or so, so I’m also trying to identify things that will help me stick to it.

http://chronicfatigue.about.com/b/2008/12/26/new-years-resolutions-for-fibromyalgia-chronic-fatigue-syndrome.htm

A TEESSIDE artist who overcame a serious illness was chosen in an international competition to create a masterpiece in Scotland.

Chris Dooks, originally from Marske, has been commissioned to create a piece of artwork in an 18th century ice house in a remote Scottish location.

http://www.gazettelive.co.uk/news/teesside-news/2009/01/13/teesside-artist-wins-international-honour-84229-22675944/

http://www.investinme.org/IIME%20Newsletter%20Sep%2008.htm

IN 2009, our number one resolution, for those affected by ME (Myalgic Encephalomyelitis), is to make people more aware of this illness and combat the ‘yuppie flu’ label.

http://www.shieldsgazette.com/letters/Welfare-reform-will-hit-ME.4867204.jp

• Welcome From Sleepydust!

• Can Colon Hydrotherapy Help To Ease Your Symptoms?

• What’s YOUR Story?

• 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://clicks.aweber.com/y/ct/?l=8WgRd&m=1mLPfrW1Kf9sc9&b=88YUrbf2vGGOScEB9zfHIg

The HHV-6 Foundation is a non-profit entity formed in 2004 to encourage scientific exchange among scientists and to provide pilot grants for promising scientific and clinical research. An important mission of the foundation is to disseminate new knowledge about this virus. While clinicians commonly believe it to be ubiquitous and benign, new research suggests that chronic HHV-6 infections of the central nervous system (CNS) can become symptomatic and may respond to treatment with antivirals.

http://www.investinme.org/Article-065%20HHV-6%20Foundation.htm

There are a lot of reasons that some people don’t take meds like they should. Brain fog, the expense, uncertainty about a drug’s effectiveness … they can all add up to being undertreated.

http://chronicfatigue.about.com/b/2008/12/31/do-you-take-your-fibromyalgiachronic-fatigue-syndrome-meds-like-youre-supposed-to.htm

More people need to donate their brains to medical research if cures for diseases like dementia are to be found, UK scientists say.

They say research is being hampered by a gross shortage of brains and are urging healthy people as well as those with brain disorders to become donors.

http://www.meassociation.org.uk/content/view/744/70/

THE power of music has helped a Kidderminster man get his life back on track and start up his own business after being diagnosed with a serious illness.

Kidderminster Shuttle

It is not mere tiredness; it is certainly not laziness or malingering, but is a serious neurological illness with a range of symptoms of varying severity, including permanent muscle pain, cognitive dysfunction and dizziness, which “chronic fatigue” alone does not encompass – and even takes life itself away from some poor souls

http://www.shieldsgazette.com/letters/Resolve-to-help-victims-of.4848284.jp

It is a mark of golf’s long-established role as a perfectly adequate substitute for life that, like life, it comes fully armed with its own set of major illnesses. While other major sports have mere injuries, it has enough fully fledged diseases to make any hypchondriac happy.

QUOTE – Most common in – but not exclusive to – men over the age of 47, particularly those who have been through expensive divorces. Frequently compared to ME: partly because it can be such an energy-drainer, and also because there are some schools of medical thought that still believe it is an entirely make-believe affliction. ENDQUOTE

http://www.telegraph.co.uk/sport/golf/4142495/The-diseases-of-the-golfer—a-helpful-guide.html

Low levels of the stress hormone cortisol marks out children at higher risk of developing chronic fatigue syndrome as adults, experts believe.

http://news.bbc.co.uk/1/hi/health/7811359.stm

Too many of us with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) have been denied pain killers, especially opiates, because doctors are afraid of creating addicts and possibly even facing criminal charges. So how do we make sure people with chronic pain get the relief they need while keep drugs out of the wrong hands?

http://chronicfatigue.about.com/b/2008/12/16/do-we-need-to-change-pain-killer-policies-to-prevent-drug-abuse.htm

Have you had to deal with an arrogant doctor? Many of us with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) have run into doctors who belittle us, don’t believe in our illneses, or simply aren’t interested in treating us. Often, doctors who act like that are egotistical.

http://chronicfatigue.about.com/b/2008/12/14/dealing-with-arrogant-doctors-when-you-have-fibromyalgia-or-mecfs.htm

When you have ME/ Chronic Fatigue Syndrome or Fibromyalgia your fatigue can be overwhelming. But why

http://www.sleepydust.net/tiredness.html

Patients who are diagnosed with hypothyroidism and are being treated for it with hormone replacenment therapy, can sometimes have other imbalances that hinder the effectiveness of their treatment. Things such as adrenal hormones being low, ferritin/iron, Vitamin B-12 etc…, can cause thyroid hormone treatment, to be less effective in patients with imbalances of these and is why thorough blood and saliva testing of all levels may need to be done, to find any problems that prevent the treatment from working as well.

http://www.bellaonline.com/articles/art33103.asp

The name ‘Lost Voices’ refers both to the fact that people who are severely ill with ME are generally not in a position to make themselves heard, and also to the way that the  prejudiced denial of ME – as an ‘aberrant belief’ rather than a devastating physical illness – has meant that often others are incapable of actually hearing and seeing what is being said and shown – our voices drop into a void.

http://www.investinme.org/LostVoicesBook/IiME%20Lost%20Voices%20home.htm

If you feel worn-out and sore, it could be all in your head — specifically your sinuses. It’s even possible that your arthritis, fibromyalgia, or chronic fatigue syndrome is a misdiagnosis of pain and tiredness from recurring sinus infections, says Alexander C. Chester, MD, a clinical professor of medicine at Georgetown University Medical Center.

http://www.rd.com/living-healthy/tired-and-achy-check-your-sinuses/article109139.html

LOCAL sufferers of ME and MS are being encouraged to take part in a new clinical research programme.

People with either of the conditions are invited to have regular floats so the benefits to their health can be assessed. Floatation is proven to be worth a night’s sleep and to increase absorption of magnesium, help combat fatigue, stress and depression.

In short you float in a pod in body temperature water which helps to completely unwind.

http://www.thisiscornwall.co.uk/cornishguardian/heading/article-561147-detail/article.html

DWP’s White Paper is published

The Government has published its vision for a reformed welfare state in a White Paper, Raising expectations and increasing support: reforming welfare for the future, just a few short weeks after the public consultation closed on its Green Paper.

http://www.afme.org.uk/news.asp?newsid=430

Research hopes for MRC multi-disciplinary panel

“Meeting of minds has considerable potential for re-invigorating research into M.E./CFS”

Sir Peter Spencer, Action for M.E. and Dr Charles Shepherd, ME Association were amongst those invited to attend the first meeting of the MRC multi-disciplinary panel on CFS/M.E. which took place on Monday 15 December.

http://www.afme.org.uk/news.asp?newsid=427