PATIENTS have praised a specialist clinic in south Essex which is helping hundreds of people cope with a crippling condition that can often go undiagnosed.
Southend Hospital’s chronic fatigue syndrome and ME clinic has a number of branches in Essex, including one in Benfleet, helping people get their lives back on track.
Patients like Margaret Wigglesworth have benefited from their expertise and she spoke out to mark ME Awareness Week.
I know people who’ve had chronic fatigue syndrome for over 30 years. I myself have dealt with it for 18 years.
This illness has quite a history. Yet public awareness is astonishingly anemic.
How can this happen with an illness so crippling, that destroys so much productivity, and therefore is so detrimental socially and economically?
We are a huge population. Our own CFS ghetto, essentially unheard outside the chronic community.
We hypothesized that chronic fatigue syndrome (CFS) may be caused by single or multiple Epstein–Barr virus (EBV), cytomegalovirus (HCMV), or human herpesvirus 6 (HHV6) infection. To determine if CFS life-altering fatigue and associated findings including muscle aches, tachycardia at rest, chest aches, left ventricular dysfunction, syncope, and elevated herpesvirus serum antibody titers are reversed by long-term subset-directed valacyclovir and/or valganciclovir.
Suffering from chronic fatigue syndrome meant I was exhausted all the time. I felt like I had cotton candy where a brain should be.
Embarrassingly for a former English major, I lost words, even simple ones. “You know, those things! They go on feet!” I’d cry, frustrated.
When Joanne Saraiva went to her doctor for her chronic pain and fatigue and debilitating mental fog, the physician chalked it up to depression and sent her to a psychiatrist.
She was just depressed, her doctor said, and had taken on too much. After all, Saraiva, now 50, had changed jobs, was raising two boys and had suffered a loss in the family.
Are you sick of healthy foods that don’t taste good? Then try a little dark chocolate!
Dark chocolate has numerous health benefits, and some of them could specifically benefit those of us with fibromyalgia and chronic fatigue syndrome.
http://chronicfatigue.about.com
It’s a sad truth — one of the hardest things about having chronic fatigue syndrome (CFS or ME/CFS) is getting people to understand it. Once they hear the name, most folks think they know exactly what it is: “Oh, you’re tired a lot. Yeah, so am I.”
One of the most telling things I’ve ever heard about the severity of this illness came from Dr. Nancy Klimas, one of our leading researchers, who treats both ME/CFS and HIV/AIDS. She says that, with the current state of treatment, she herself would rather have HIV than ME/CFS. I have several chronic conditions that cause extreme fatigue, and each time a new one has surfaced my greatest fear is that it’s ME/CFS. I’m always incredibly grateful that it’s not. I’ll gladly keep my fibromyalgia and 20-some other diagnoses instead, thank you!
http://chronicfatigue.about.com
So, I was home from church a second Sunday in a row because of these damned seasonal allergies. I spent much of yesterday, a beautiful Saturday, on the couch, exhausted. I fought off a sinus infection last week that came out of my allergies, and now I’m back to plain old allergies, which make my bones feel like rubber, and make me feel like I don’t have the strength to do much more than go from the bed to the couch, with a stop-off at the coffee pot. I went to dinner with friends on Friday night, and thought a corner had been turned, but Saturday was miserable (had to cancel a couple of planned meetings with other friends), and today looks like more of the same. It never ends.
As a non-surgeon practicing at the busiest orthopedic surgery hospital in the country, Dr. Vijay Vad stands out. Instead of sending his patients to surgery, his goal is to keep them out of it. A sports medicine specialist at New York’s Hospital for Special Surgery who regularly works with professional golfers and tennis players, Dr. Vad is a believer in the power of the mind-body connection and regularly prescribes yoga exercises and other alternative strategies for his patients.
Many people with ME/CFS have found some relief through the use of the Energy Envelope theory. The Energy Envelope theory posits that an individual with ME/CFS has a small amount of energy available and needs to be aware of just how much energy they can afford to expend before experiencing physical and cognitive repercussions.
I developed ME in 1997, just after my 11th birthday. At the time I had no idea how life-shattering it would turn out to be. I had previously enjoyed going out with friends, dancing, walking my dog, but suddenly found myself too weak to get out of bed in the mornings, and too sick to eat. For a long time I was practically nocturnal: sleeping well into the afternoon and awake most of the night. My body was beset with pain, like I was being stabbed all over.
Results of probably the largest-ever survey of opinion among people with ME/CFS and their carers about what treatments and therapies work for them and what don’t are available here for downloading.
http://www.meassociation.org.uk
TORONTO — A national diagnostic and treatment centre is desperately needed to help the more than one million Canadians suffering from chronic fatigue syndrome, fibromyalgia and multiple chemical sensitivities, according to a support group for those with the conditions.
“It’s very important that people hear us,” said Jeanne Samonas, president of the Myalgic Encephalomyelitis Association of Ontario during a news conference Wednesday. “We’re real people with real illnesses and we need help.”
http://www.montrealgazette.com
Published in the European Journal of Clinical Investigation. Published online on 23 May 2010, ahead of print.
Impaired skeletal muscle metabolism is recognized in chronic fatigue syndrome (CFS). This study examined the relationship between skeletal and cardiac muscle function and symptoms on standing in CFS using magnetic resonance spectroscopy (MRS) and impedance cardiography.
http://www.meassociation.org.uk
The instructions are explicit.
Before agreeing to be interviewed, Ellen Pickett asks that the reporter refrain from using any perfumed products and wash her clothes in special, unscented laundry detergent. Dryer sheets are out of the question, and hair is to be tied back or held under a scarf or kerchief.
The scientific report entitled “Physical and Functional Impact of CFS/ME in childhood” received early-release publication on May 17th in the eFirst pages of the US journal PEDIATRICS, the official journal of the American Academy of Pediatrics.
http://www.meassociation.org.uk
Biomarkers in Chronic Fatigue Syndrome: Evaluation of Natural Killer Cell Function and Dipeptidyl Peptidase IV/CD26
http://www.meassociation.org.uk
Like many other people who have the disease, Perry Doner wishes there was no need to mark Chronic Fatigue Awareness Day.
“Because it’s something you can’t see, we don’t get a lot of understanding and it’s difficult to get a diagnosis and that’s very frustrating. I tell people to imagine the worst flu they ever had made 10 times worse and not ending and that’s something like chronic fatigue syndrome,” said Doner, the local support person for the Myalgic Encephalomyelitis Society of B.C.
University of Nevada/Whittemore Peterson Institute researchers presented data suggesting that the drug Ampligen (poly I: poly C12U) can boost natural killer (NK) cell activation in people with chronic fatigue syndrome who test positive for XMRV. This may explain why Ampligen has been shown to alleviate symptoms in some chronic fatigue syndrome patients.
http://chronicfatigue.about.com
HEALTH bosses have ruled out extra posts to help people with ME in the immediate future because of financial pressures.
http://www.meassociation.org.uk
Research by Dundee scientists finds majority of youngers with the condition are not well enopugh to attend school full-time.
http://www.meassociation.org.uk
A year ago, I stumbled upon the ME/CFS forums at Phoenix Rising. I stayed for the friendship and the support.
ME stands for myalgic encephalomyelitis. CFS is chronic fatigue syndrome. As a veteran of this illness over many years, I found the forums to be a perfect fit.
I’d just gotten a computer and the ol’ brain was functioning well enough that I could read and type for more than a few minutes at a time. I fell in love with the place.
TWO letters changed Margaret Sansom’s life beyond recognition, forcing her to leave her job, quit her hobbies and totally change her way of life. Those two letters were M and E.
http://www.meassociation.org.uk
We all deal with stress to one degree or another, but when you have fibromyalgia or chronic fatigue syndrome, you’ve got to do your best to manage stress — it’s one of our wost symptom triggers.
Many of us have our own stress-management strategies. For instance, I left a stressful job to help manage my illness, and I use supplements (theanine and DHEA) and deep breathing to deal with stressful situations. But what about when your entire life is a stressful situation? What can you do then?
http://chronicfatigue.about.com
Cinda Crawford advises any and all with Chronic Fatigue Syndrome, to pace themselves. This is excellent advice. As it happens I have Chronic Fatigue Syndrome myself, and one of the handful of things that has been of serious help to me, is pacing.
An international XMRV workshop is planned for September 7-8 in Bethesda, MD. XMRV is a gamma retrovirus that preliminary studies have linked to chronic fatigue syndrome and prostate cancer. Medical education company Virology Education announced the event on its website.
http://chronicfatigue.about.com
In an effort to bring more standardization to the chronic fatigue syndrome (CFS) Fukuda et al. case definition [1], the Centers for Disease Control and Prevention (CDC) has developed an empirical case definition [2] that specifies criteria and instruments to diagnose CFS.
The MRC website section on ME/CFS research now contains a 50-page report, plus presentation slides, on the 19-20 November 2009 Research Workshop that was held at Heythrop Conference Centre, Chipping Norton, Oxfordshire.
http://www.meassociation.org.uk
Years ago, a lot of people cut down on eggs or eliminated them from their diet completely over cholesterol concerns. Now, however, most health experts agree that eating one egg a day won’t hurt your cholesterol.
http://chronicfatigue.about.com
Researchers at the University of Texas Health Science Center say they’ve found two possible ways to block pain messages at the source, thanks to their discovery of a heat-activated fatty acid in the body. They also believe they’ve discovered processes related to central sensitization, which is considered a key feature of fibromyalgia and chronic fatigue syndrome.
http://chronicfatigue.about.com
In ‘Science’ magazine today, Judy Mikovits (from the Whittemore Peterson Institute in Nevada) and Francis Ruscetti (Laboratory of Experimental Immunology, National Cancer Institute, Frederick, Maryland) were allowed to reply to criticisms of their original study on the involvement of the XMRV virus with patients with Chronic Fatigue Syndrome.
http://www.meassociation.org.uk
I know this sounds cliche, but laughter may actually be good medicine. According to a recent study, laughter’s chemical effect on the brain and immune system may be similar to that of exercise.
http://chronicfatigue.about.com
I developed ME in 1997, just after my 11th birthday. At the time I had no idea how life-shattering it would turn out to be. I had previously enjoyed going out with friends, dancing, walking my dog, but suddenly found myself too weak to get out of bed in the mornings, and too sick to eat.
http://www.meassociation.org.uk
When Sue Gerard removed a tick from her leg in June 1994, she was informed the tick wasn’t a carrier of Lyme disease. She thought nothing of it, but as time elapsed, Gerard became seriously ill. It wasn’t until one year and 13 doctors later that she was diagnosed with Lyme disease.
During that time, Gerard suffered with central neurological symptoms, deep tissue pain, ringing in her ears and insomnia. She fell victim to dementia, severe headaches, teeth pain, panic attacks, and chronic fatigue. It wasn’t until a colleague told her to seek an infectious disease doctor’s help that she began her journey to recovery.
http://www.spinalcolumnonline.com/
We keeping hearing more and more about the health benefits of fish, but at the same time, we hear warnings about mercury levels. I know it’s hard for me to keep straight which ones are safe and which ones aren’t, especially when I’m staring blankly at a grocery store freezer or seafood counter while trying not to let a screaming child in the next aisle rattle my nerves.
http://chronicfatigue.about.com
FROM day to day, Vivienne Mills doesn’t know what her illness will enable her to do. She suffers from myalgic encephalomyelitis – ME or chronic fatigue syndrome
http://www.meassociation.org.uk
I’d had Chronic Fatigue Syndrome for years before I tried a low carbohydrate diet. Some CFS symptoms shrank within 24 hours. Substantial improvement showed itself within 48 hours.
That was eight years ago. Eating low carb hasn’t healed me completely, but it plays a significant role in my health.
FOR 15 years David Cox has been suffering with an illness which has blighted his life. Before the 68-year-old was struck down with ME – otherwise known as chronic fatigue syndrome – he had worked as a nurse in the NHS for 30 years.
http://www.meassociation.org.uk/
When you have a moment of bad brain fog/fibro fog, do you tend to have a strong emotion to go with it? I certainly do, and I hear it all the time from other people with fibromyalgia or chronic fatigue syndrome. Some people say they cry, and others talk about getting angry. I tend toward the anger reaction — the worse my brain, the shorter my temper.
http://chronicfatigue.about.com
People with ME/CFS living in the Ashford area of Kent who would like to get together for a chat about common concerns – perhaps with a view to forming a local support group – are invited to contact Leonie Watt at lnwatt@hotmail.co.uk
In my recent Food of the Week series, we’ve discussed a couple of foods that are part of the nightshade family. Some people expressed concerns about that, so I thought it was a good idea to discuss these kinds of foods.
http://chronicfatigue.about.com
Tea is one of the most popular drinks in the world, but it’s way down on the list in the U.S., coming in behind coffee and soda. In the past few years, however, studies suggesting health benefits of tea have certainly raised their profile and popularity here.
http://chronicfatigue.about.com
Tired again? Perhaps it’s the crappy weather, because you’re sure that you’ve been getting enough sleep. After all, you can’t remember the last time you spent less than ten hours in bed per night. Hopefully it’s not mono; one of your friends had it a few months ago and it’s all but knocked her out. However, you soon realize that you’ve only talked to her on the phone since she got engaged, so there’s no way that’s it.
Version 4 of the MEA position statement on XMRV clarifies some of the points and queries raised in the previous three summaries. Version 4 also updates the situation on XMRV research in the UK, testing for XMRV, and refers to our correspondence with the Chief Medical Officer regarding blood supplies and blood donation.
http://www.meassociation.org.uk/