LIVING WITH ME

Do you have a “quick-fix” mentality? Are you seeking that one drug, that one supplement, that one elusive anything that will be the perfect treatment?

http://chronicfatigue.about.com/b/2009/03/28/quick-fix-mentality-doesnt-work-with-fibromyalgia-chronic-fatigue-syndrome.htm

Sleep is crucial to life. For chronic pain sufferers it is even more vital. Sleep restores your energy and keeps away fatigue. Getting less sleep than you need creates a sleep debt and this sleep loss will reduce your immune system. This decrease in immunity can cause illness or more pain in your daily life. It is a vicious cycle. You can’t sleep then you get sick and that sickness causes you not to be able to sleep.

http://www.examiner.com/x-5944-Atlanta-Womens-Health-Examiner~y2009m3d28-Chronic-Pain-and-Sleep

All people with CFS are physically impaired. The Centers for Disease Control and Prevention cites that roughly half of people with CFS partially recover, some returning to work and others growing progressively more disabled.[1,19] The sooner a patient is diagnosed and treated, the better the chances of recovery.[1,10]

http://www.americanchronicle.com/articles/view/96391

Rheumatoid arthritis patients have their lives disrupted more by tiredness than stiffness and pain, research has shown.

Yet fatigue is an unsung symptom that 40% of patients never discuss with their doctors, the findings suggest.

A survey of 100 rheumatoid arthritis (RA) patients in England found that for 71% tiredness was the symptom that most affected their daily lives. Only 2% of those questioned said they were not affected by tiredness or fatigue, and more than a third believed it could not be treated.

http://www.google.com/hostednews/ukpress/article/ALeqM5gORtQWnkYzJmIUBbBKf2zlx9c3ew

Fibromyalgia is a chronic condition causing pain in muscles, ligaments and tendons, as well as fatigue and multiple tender points, that affects an estimated 5 million Americans age 18 and older. The slightest pressure on tender points such as the neck, back, shoulders and hips can cause people with fibromyalgia to feel pain. Fibromyalgia is often considered an arthritis-related condition, but it is not truly a form of arthritis because it does not cause inflammation or damage to joints or muscles.

http://www.reporternews.com/news/2009/mar/25/understanding-and-living-fibromyalgia/

Chronic fatigue syndrome (CFS) is complex illness of unknown etiology. Among the broad range of symptoms, many patients report disturbances in the emotional realm, the most frequent of which is anxiety.

Research shows that patients with CFS and other so-called functional somatic disorders have alterations in the intestinal microbial flora, and emerging studies have suggested that both pathogenic and non-pathogenic bacteria might influence mood-related symptoms and even behavior in animals and humans. In this pilot study, 39 CFS patients were randomized to receive either 24 billion colony forming units of Lactobacillus casei strain Shirota (LcS) or a placebo daily for two months.

http://7thspace.com/headlines/305566/a_randomized_double_blind_placebo_controlled_pilot_study_of_a_probiotic_in_emotional_symptoms_of_chronic_fatigue_syndrome.html

Anyone with fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS) knows that stress is one of our greatest enemies. The economic crisis has just about everyone feeling additional stress these days, and that can only mean bad things for us.

http://chronicfatigue.about.com/b/2009/03/21/fibromyalgia-chronic-fatigue-syndrome-economy-related-stress.htm

IN 2002, Krishna Stanton ran into the stadium in the Commonwealth Games marathon in second place, behind friend and fellow Australian Kerryn McCann.

As Stanton raised her hands to cross the finish line, the cheering crowd in Manchester, northern England, had no concept about what it had taken her to get there. And Stanton herself was unaware that a serious lifelong disease was causing the chronic ill health that had more or less derailed her athletic career. The marathon, it seems, was the easy part.

It wasn’t until 2004 that Stanton was diagnosed with coeliac disease, a digestive auto immune disorder in which gluten — a protein found in wheat, rye, barley and oats — causes the body to produce antibodies that attack the lining of the small bowel.

http://www.theaustralian.news.com.au/story/0,25197,25213084-23289,00.html

Sleep disorders: Persons who have leg muscles spasms at night, restless legs syndrome or sleep apnea often have fibromyalgia.

http://www.tylerpaper.com/apps/pbcs.dll/article?AID=/20090319/OPINION0309/903180340

Mark Asher had always considered himself to be an outdoors person, running up to 22 miles per week and frequently working in his yard.

The Ellicott City resident never thought anything of the dozens of tick bites he suffered over the years, especially in the early 1980s when he lived in a farm house near Brookeville.

Little did he know how those tiny bites would come back to haunt him in the form of chronic Lyme disease, which he was diagnosed with in 2005.

http://www.explorehoward.com/news/16642/man-county-battle-chronic-lyme-disease/

One of my favorite doctors anywhere, Jacob Teitelbaum, MD, was on Good Morning America recently. Jacob is an expert on chronic fatigue syndrome, fibromyalgia, and fatigue-related conditions, including hypothyroidism. He talked about what he calls the “human energy crisis” (don’t you love that?) and three essential things we can do to improve energy! A great interview, with excellent advice that certainly applies to thyroid patients struggling with fatigue.

http://thyroid.about.com/b/2009/03/19/human-energy-crisis-solutions-teitelbaum.htm

Tweedledee & tweedledum? Laurel &hardy? Pinky & perky? That’s me & my mum, but which is which I’ll let you decide you see whenever you spot one of us the other is sure to be close by. Now as much as I love my mum, being a woman of a certain age I don’t always want to be accompanied but….the symptoms of M.E www.afme.org.uk have a habit of getting extremely bad very quickly, family members often know I’m going to be quite ill about twenty minutes before I feel it kick in because apparently I change colour.

http://www.watfordobserver.co.uk/yoursay/features/4263418.You__M_E__Tweedledee/

In a world where most people function on a shortage of sleep, chronic fatigue syndrome is the Rodney Dangerfield of diseases — it gets no respect. And in Canada, it gets little or no money.

It’s so bad that sufferers, estimated to number four million in the U.S. and 400,000 here, have to fund the research themselves to come up with a simple blood test just to diagnose the syndrome.

http://www.edmontonjournal.com/Health/Chronic+fatigue+sufferers+largely+ignored/1442882/story.html

On 3 April a dissemination event was held at the University of East Anglia, to share preliminary findings from research projects undertaken by the M.E. Observatory. The focus of the meeting was the health and social needs of people living with M.E./CFS.

http://www.afme.org.uk/news.asp?newsid=517

8 HOURS SLEEP IN ONLY ONE HOUR! Come for a float and leave feeling more refreshed that you have in years.

“HEAVENLY”      “AMAZING”     “CONVERTED!”

http://www.floatsw.co.uk/

It has been hailed as the wonder jab that will prevent thousands of young women suffering the same terrible fate as Jade Goody. But as parents across Britain rush to have their daughters vaccinated, others are adamant that it has triggered alarming side-effects…

Amanda Steel is flicking through last year’s diary, trying to pinpoint when this nightmare began. It was the summer holidays when she first noticed that Carly, her eldest daughter, was seriously out of sorts.

http://www.dailymail.co.uk/health/article-1167803/How-safe-cervical-cancer-jab-Five-teenagers-reveal-alarming-stories.html

http://www.myoptumhealth.com/portal/DrugGuide/FindADrug

Most of the 15 people gathered for a support group this month did not look sick.

But when they began to talk about their common conditions, the list of symptoms went on and on.

Pain, fatigue, depression. Insomnia, nausea, headaches. Muscle spasms, ringing in the ears and sensitivity to heat, cold or light.

http://www.charlotteobserver.com/464/story/632418.html

Patients with ME or chronic fatigue syndrome may be missing out on treatment and support because of a lack of understanding of their condition, researchers from Norfolk have found.

Patients, health professionals and others interested in the conditions will be attending an event at Norwich Sportspark tomorrow where they will hear about the findings so far and asked for their ideas about how the findings can be of most use to patients.

http://new.edp24.co.uk/content/news/story.aspx?brand=EDPOnline&category=News&tBrand=EDPOnline&tCategory=News&itemid=NOED02%20Apr%202009%2018%3A27%3A52%3A453

Talk about embarrassing. And for the one in five Americans who have these symptoms, there isn’t much hope for relief. No cure exists and treatments such as fiber supplements or laxatives only address the symptoms.

Dr. Don Shook, gastroenterologist with Clarian Arnett Health, said the condition is not fatal or incapacitating but more of a nuisance, and many people learn to cope with it.

http://www.jconline.com/article/20090324/LIFE03/903240304

Dr Charles Shepherd. medical adviser to The ME Association, can now be seen discussing ME/CFS, how to come to terms with the illness and obtain effective help in a video on the NHS Choices website.

http://www.meassociation.org.uk/content/view/843/70/

Chronic Fatigue Syndrome expert discusses name, symptoms

Dr. Nancy Klimas of the University of Miami Miller School of Medicine is a world-renowned expert in Chronic Fatigue Syndrome and president of the International Association for CFS/ME.

http://www.miamiherald.com/living/health/story/963475.html

The following letter from Tom Kindlon appears in the print edition of the British Medical Journal this week. Mr Kindlon is information officer for the Irish ME/CFS Association.

Many questions remain about treatments for CFS
Tom P Kindlon
BMJ 2009;338 b1371

Published 7 April 2009, doi:10.1136/bmj.b1371
Cite this as: BMJ 2009;338:b1371

http://www.meassociation.org.uk/content/view/844/70/

The ME Association has become increasingly concerned about feedback from our members regarding the way in which some insurance companies are behaving when it comes to claims for private sickness/disability related benefits – PHI (income protection/replacement) policies in particular.

http://www.meassociation.org.uk/content/view/842/70/

Have you considered complementary/alternative treatments for fibromyalgia but been confused by all the conflicting claims you find online? It’s hard to wade through it all and make fact-based decisions – and it can be even harder to get your doctor to agree!

http://chronicfatigue.about.com/b/2009/01/27/fibromyalgia-treatments-biofeedback-hypnotherapy-cbt.htm

The quality and elan of primary and secondary education have long been regarded as among the achievements of postwar Japan. Journalist Hiratate Hideaki uses the window of increasing teacher suicides to probe recent changes in education that have placed many of Japan’s finest teachers on a collision course with their principles, supervisors, and ultimately the Japanese state.

http://japanfocus.org/-Hiratate-Hideaki/1940

Press statement issued by Dr Des Turner MP, chairman of the All Party Parliamentary Group on ME.

Dr Des Turner MP, Chair of the All-Party Parliamentary Group (APPG) on M.E., launched an APPG inquiry into NHS service provision for people with M.E., at a meeting in Committee Room 20, House of Commons, 1.30-3pm, Wednesday 1 April 2009.

http://www.meassociation.org.uk/content/view/840/70/

Many women deal with uncomfortable symptoms before each monthly period, though the discomfort is usually mild. When the physical or emotional changes impair your ability to function, the condition is called premenstrual syndrome (PMS).

http://www.kitsapsun.com/news/2009/mar/15/elizabeth-smoots-demystifying-premenstrual/

Q: I’ve been using powdered ribose, which was recommended by my personal trainer. It seems to be helping my energy, but I am worried about so much sugar in my diet. Is it OK to use it every day?

A: Ribose is a naturally occurring sugar made in the body from glucose and is an essential component of ATP adenosine triphosphate, the compound that stores and delivers energy in all cells. Ribose also occurs in RNA ribonucleic acid, one of the main information-carriers of living organisms.

http://www.mercurynews.com/centralcoast/ci_11711106?nclick_check=1

Is the economy making it hard for you to afford your prescription medications? If you stop taking them as prescribed, it could have a major impact on your health.

http://chronicfatigue.about.com/b/2009/03/23/find-free-or-low-cost-prescriptions-for-fibromyalgia-chronic-fatigue-syndrome.htm

Tick Prevention week is organised by BADA-UK (Borreliosis & Associated Diseases Awareness UK).

It is an annual campaign timed to coincide with the spring holidays when the weather gets warmer and people are out and about more. Ticks are blood-sucking parasites which can carry a range of diseases, including Borreliosis (Lyme disease).

http://www.meassociation.org.uk/content/view/838/70/

An inquiry into NHS service provision for people with ME/CFS was launched by Dr Des Turner MP at the All Party Parliamentary Group on ME  on  April 1.

http://www.meassociation.org.uk/content/view/837/70/

A hallmark of our time, fatigue is one of the most common health concerns that cause people to seek medical attention.

The spectrum can run all the way from feeling run-down after an intensive work period to chronic fatigue syndrome, a disabling condition diagnosed after months of debilitating tiredness. Your lack of get up and go could be your body’s way of signaling its need for rest and sleep.

http://www.bclocalnews.com/lifestyles/41403979.html

When you have fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS), anything that causes additional pain or trauma can be especially hard on you. We need special considerations during surgery, and recovery can be especially long and hard.

http://chronicfatigue.about.com/b/2009/03/18/facing-surgery-with-fibromyalgia-chronic-fatigue-syndrome.htm

Mental exhaustion may lead people to believe they are physical fatigued sooner than normal, a new study suggests.

A United Kingdom study found that performing mentally fatiguing tasks before a physical exercise caused people to hit the wall faster than if they performed the same exercises while having a rested mind, even though the mental tiredness didn’t affect the performance of the subjects’ heart or muscles.

http://health.usnews.com/articles/health/healthday/2009/03/13/mental-exhaustion-impedes-physical-performance.html

It’s another one of those fibromyalgia symptoms that just doesn’t make sense – pain, sometimes severe, from a simple touch. It’s almost like having a sunburn all the time.

This kind of pain is called tactile allodynia. “Allodynia” means a painful response to typically non-painful stimulus, and “tactile” means touch. This is what makes your clothes hurt when they touch or brush your skin, what makes a sheet feel like sandpaper, and turns a light touch into searing pain.

http://chronicfatigue.about.com/b/2009/03/07/painful-to-touch-fibromyalgia-tactile-allodynia.htm

NEWSBRIEF: Research just published in the journal Molecular Medicine represents a first step toward an objective diagnostic test of chronic fatigue syndrome (CFS or ME/CFS) that’s based on an abnormal response to exercise, called post-exertional malaise.

http://chronicfatigue.about.com/b/2008/11/20/first-step-toward-exercise-based-diagnosis-of-chronic-fatigue-syndrome.htm

A study just published in the Journal of Clinical Psychology suggests that cognitive behavioral therapy (CBT) outcomes in chronic fatigue syndrome may be more ambiguous that postulated by the cognitive-behavioral model.

About.com

In my last blog on disability insurance companies, I took them to task for their delaying tactics. Now, I want to talk about what to do once your lawsuit is underway and the insurance company has hired an expert who says you are not disabled.

Insurance companies have deep pockets. They have a list of doctors they regularly go to for expert reports—where they know in advance the expert’s report will support the insurance company’s position that you are not disabled and are employable. Hopefully, you also have a number of expert reports from doctors that support your disability.

http://www.straight.com/article-206047/tim-louis-importance-lay-witnesses-longterm-disability-lawsuits

What’s in your medicine cabinet? In addition to all of your prescription drugs and supplements, you might want to keep certain over-the-counter (OTC) meds on hand to help you manage symptoms of fibromyalgia and chronic fatigue syndrome . They probably won’t do much (if anything) for pain and fatigue, but as you know we get dozens of other symptoms to deal with, and they can pop up unexpectedly. It pays to be prepared by keeping certain things available. 

http://chronicfatigue.about.com/b/2009/01/24/otc-drugs-for-managing-fibromyalgia-chronic-fatigue-syndrome-symptoms.htm

Don’t panic, Dr who hasn’t crept up and whisked you away in his tardis while you were sniffing the daffodils. We are without doubt still in March, the reason for my leap into May is because it will be M.E awareness month, www.afme.org.uk so this gives you plenty of time to arrange dangerously death defying feats, stupendously stoopid stunts or any other ways to seduce friends, family and members of the public into parting with that paper stuff in their purses & wallets to raise money for the charity “Action for M.E”.

http://www.watfordobserver.co.uk/yoursay/features/4239319.YOU_M_E___THE_MONTH_OF_MAY_/

PHILADELPHIA, Feb. 18, 2009 (GLOBE NEWSWIRE) — Hemispherx Biopharma, Inc. (AMEX:HEB) announced its medical director, Dr. David Strayer, will present new data on Ampligen(r) (Poly I: Poly C12U) at the upcoming International Association of Chronic Fatigue Syndrome (IACFS/ME) in Reno, NV March 13, 2009. The mission of IACFS/ME is to promote, stimulate and coordinate the exchange of ideas related to CFS/ME research, patient care and treatment.

http://www.msnbc.msn.com/id/29261167/

The 2009 Peter Snow Award for rural health research and service – given annually to honour the memory of Dr Peter Snow, the New Zealand doctor who gained international attention for his research into ‘Tapanui Flu’, otherwise known as ME – has been given to Dr Garry Nixon.

http://www.meassociation.org.uk/content/view/831/161/

We have fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) – aren’t we sick enough already? Yes we are, but that doesn’t mean we’re immune to all the bugs that go around, and this is an especially “buggy” time of year. Whether you get a bad case of it or not, you’re likely to feel it more than most people, and illness can trigger a flare.

http://chronicfatigue.about.com/b/2009/03/16/getting-sick-on-top-of-fibromyalgia-chronic-fatigue-syndrome.htm

The Point of Pain – This can make it difficult to define and describe pain.  Acute pain is the body’s warning system, which tells the body to move away from danger and to protect itself from further injury, and that with chronic pain there are changes in the nervous system and brain so that the pain system no longer functions as a warning system.

http://www.mmegi.bw/index.php?sid=2&aid=17&dir=2009/March/Monday9

Rapid Responses

http://www.bmj.com/cgi/eletters/338/mar17_1/b1110

WINCHESTER — Gary Lambert is once again full of vim.

Chronic kidney disease had robbed the Air Force veteran from Frederick County of his pep.

A long-time Type 2 diabetic, Lambert took a diabetes class several years ago.

“They got to talking about things like how diabetes affects your heart and your kidneys and your liver … your eyesight,” he said. “The doctors — bless their hearts — they started looking at some of these things.”

A nephrologist — a doctor specializing in kidneys — had some blood work done on Lambert, which revealed his red blood cell count was low, meaning he had anemia.

http://www.nvdaily.com/lifestyle/2009/03/managing-chronic-illness-an-ed.html

The ME Association has responded to a news story that appeared in the British Medical Journal about the outcome of the legal challenge to the NICE Guideline on ME/CFS.

http://www.meassociation.org.uk/content/view/828/161/

Dear Pharmacist: After recent blood tests, I have been diagnosed with Lyme disease, fibromyalgia and chronic fatigue syndrome. Can you suggest supplements to help me get a life? — A.D. Cape Cod, Massachusetts

Lyme disease — an infection transmitted by ticks — can cause headaches, severe muscle and joint pain, dizziness, heart palpitations, memory loss and difficulty concentrating. It sounds a lot like fibromyalgia and CFS doesn’t it? I can’t determine whether or not you genuinely have all three conditions. Regardless, your complex disorders each have various causative factors and their own cluster of symptoms. They are almost always associated with high levels of pain-causing inflammatory chemicals, one of which is called TNFa.

http://www.tulsaworld.com/lifestyle/article.aspx?subjectid=361&articleid=20090307_222_D4_DearPh67885&allcom=1

Kevin Short, who was one of the two people with ME who unsuccessfully launched the legal challenge to the NICE Guideline on ME/CFS, has released the witness statement of Norwich North MP Dr Ian Gibson who supported the action.

http://www.meassociation.org.uk/content/view/827/161/

The NICE Guideline on ME/CFS, and the attitude of many health insurers towards people with the illness, came under withering fire from the Countess of Mar in a debate in the House of Lords yesterday (March 18).

The Countess said the Guideline was published amid “a barrage of criticism” from the ME community because the only two treatments it recommended – on the basis of very limited and strongly criticised scientific evidence – were Cognitive Behaviour Therapy (CBT) and Graded Exercise (GET).

http://www.meassociation.org.uk/content/view/826/161/

AMARILLO – An estimated five million Americans age 18 or older are affected by fibromyalgia – a chronic condition causing pain in muscles, ligaments and tendons, as well as fatigue and multiple tender points, said a Texas AgriLife Extension Service specialist.

Although fibromyalgia is often considered an arthritis-related condition, it is not truly a form of arthritis because it does not cause inflammation or damage to joints or muscles, said Andrew Crocker, AgriLife Extension gerontology specialist.

http://agnews.tamu.edu/showstory.php?id=1052