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"In the midst of winter I finally learned that there was in me an invincible summer." - Alert Camus

Saturday, February 28, 2015

Chronic Fatigue Syndrome Needs Effective Treatments

 MS Sufferers were often labelled complainers before the advent of MRI

The Opinion Pages | OP-ED CONTRIBUTOR
A Disease Doctors Refuse to See
Chronic Fatigue Syndrome Needs Effective Treatments


                            CreditBénédicte Muller

SANTA FE, N.M. — TOO often, doctors don’t understand chronic fatigue syndrome. They don’t know how to diagnose it, and they frequently even believe that patients with the disease are just whining or suffering from psychological problems. This needs to change.

That was the message from the Institute of Medicine’s recent report on the illness, which proposed new criteria to diagnose it and recommended ditching the syndrome’s confusing and demeaning name. The proposed alternative: systemic exertion intolerance disease, or S.E.I.D.

As a patient for 16 years, I’ve dealt with plenty of doctors who were ignorant about the disease. So my questions were: Will this work? Is a report from one of the most prestigious bodies in American medicine, an arm of the National Academy of Sciences, enough to make doctors take the disease seriously? Will patients get diagnoses faster and be treated more effectively?

Early indications are discouraging. An article about the report on Medscape, a website for doctors, received 273 comments as of Tuesday, and most were dismissive. Here are a few examples:

• “Absent hard biological evidence, Chronic Fatigue Syndrome might” count “lots of people as ‘Sick’ who are in monotonous jobs, bad marriages, or plain bored with life.”

• “great, disability here I come! glad I got that plan a long time ago.”

• “Chronic fatigue and fibromyalgia — two wastebasket diagnoses in search of pathology.”

The nearly 300-page report explicitly argued against these sentiments with a thorough review of the scientific literature. It pointed out that chronic fatigue (the condition of being tired all the time) and chronic fatigue syndrome (an illness in which exhaustion is just one of many debilitating symptoms) are very different.

The hallmark symptom of chronic fatigue syndrome isn’t fatigue at all: It’s a dramatic worsening of symptoms after exertion (which for some patients can be as little as lifting a toothbrush). On top of that, patients have cognitive problems, sometimes so extreme they can’t talk or read; within half an hour of standing, their blood pressure drops or their heart rate soars; and sleep makes them feel no better. Most have additional symptoms, too, including pain and neurological and immune problems.

But many doctors, it seems, aren’t persuaded by this scientific evidence.

So what would persuade them? Doctors may be a scientifically minded lot, but they are also slow to change and are focused on their daily work. “Real” for a doctor often translates to “indicated by some objective test.”

Unfortunately, no one test can reliably distinguish patients who have chronic fatigue syndrome from those who don’t. The closest thing to a reliable, objective test is a two-day exercise-to-exhaustion challenge on a stationary bike. Sick patients of all varieties may poop out quickly on Day 1 but whatever they do, they can generally repeat it the next day. Not C.F.S. patients; their performance tanks. Physiological measures ensure that the results can’t be faked, and so far, researchers haven’t seen similar results in any other illness. But large studies haven’t been done. The test also has a big problem. It can leave patients much sicker for months.

A more practical test for exertion intolerance may come from examining the gene expression in the spinal fluid of C.F.S. patients after moderate exercise, which has been shown to be distinctively abnormal in small samples. But much more research will be required before doctors are able to order a test for it.

The other thing that would change doctors’ attitudes is effective treatment, which is also what patients desperately need. The problem is, very few treatments have proved effective.

That may be about to change. Rituximab, a lymphoma drug, has produced remarkable remissions in C.F.S. patients in a small study and is now undergoing a large trial. In my case, I have improved almost unbelievably by taking extreme steps to avoid mold, an approach that has become an underground movement among patients but that has received very little study.

Developing tests and treatments isn’t cheap. Every disease community argues that it needs more money, but the situation with C.F.S. is extreme: The National Institutes of Health spends a mere $5 million a year on C.F.S. research, when an estimated one million Americans are affected, with many disabled and some so ill they languish for years in darkened rooms, unable to move or speak. By comparison, the N.I.H. spends $3 billion on H.I.V./AIDS a year. Ellen Wright Clayton, the chairwoman of the committee that produced the report, is encouraging patients to advocate as AIDS activists once did and demand more research funding — a tall order for patients who are often housebound.

I hope, and believe, that this report will help some patients get diagnoses more quickly and accurately. But to get anywhere close to the care that patients so desperately need, no report is enough. It will require objective tests and effective treatments. For that, federal agencies will have to start making an investment in this disease that’s proportional to the devastation it causes.

Julie Rehmeyer is a science writer and contributing editor at Discover Magazine.


systemic exertion intolerance disease

Early compaints by patients were labeled neurotic.

The U.S. Centers for Disease Control & Prevention (CDC) recognize CFS as a serious illness and launched a campaign in June 2006 to raise public and medical awareness about it.

SANTA FE, N.M. — TOO often, doctors don’t understand chronic fatigue syndrome. They don’t know how to diagnose it, and they frequently even believe that patients with the disease are just whining or suffering from psychological problems. This needs to change.

That was the message from the Institute of Medicine’s recent report on the illness, which proposed new criteria to diagnose it and recommended ditching the syndrome’s confusing and demeaning name. The proposed alternative: systemic exertion intolerance disease, or S.E.I.D.  (Source:


Those with chronic fatigue syndrome - now systemic exertion intolerance disease - vary in their immune systems

Study on Chronic Fatigue May Help With Diagnoses


The immune systems of people with chronic fatigue syndrome differ from those of healthy people, and patients with recent diagnoses can be distinguished from those who have had the condition for longer, researchers reported on Friday.

The findings do not have immediate clinical applications for patients, experts said. But the biomarkers discovered by the scientists may eventually form the basis of the first diagnostic test for the illness.

“A biomarker has been the goal for much of the research for the last 15 years, so it’s really excellent that they have found something they consider significant,” said Dr. Birgitta Evengard, a professor of clinical microbiology at Umea University in Sweden and an expert on the illness.

The findings still need to be replicated in other labs with other groups of patients, cautioned Dr. Evengard, who was not involved in the research.

The study was published online in a new open-access journal called Science Advances, just two weeks after the Institute of Medicine proposed a new name for the illness — “systemic exertion intolerance disease” — and new diagnostic criteria to better identify patients. The authors of a report put out by the institute described the illness as a biological disorder and said the central symptom was “post-exertional malaise,” a sustained relapse after minimal activity.

Chronic fatigue syndrome is also called myalgic encephalomyelitis, which means “muscle pain with brain and spinal cord inflammation,” and is often referred to as ME/CFS. An estimated one million Americans may have the condition, and some are homebound for years.

For the study, the research team — which included scientists from Columbia, Stanford and Harvard — tested the blood of 298 patients with the syndrome, and 348 healthy people who served as a control group, for 51 cytokines, substances that function as messengers for the immune system. When the team compared all the patients with all the healthy controls, they found no significant differences between the two groups.

But after dividing the patients into two cohorts — those who had been sick for less than three years and those who had been sick longer — they found sharp differences. And both sets of patients were different from healthy controls.

Patients who had been ill for less than three years had “a prominent activation” of cytokines that influence inflammation in the body compared with other study subjects, the scientists found. Those sick for longer than three years exhibited dampened cytokine activity, which the researchers interpreted as a possible sign of premature immune-system aging.

“There are biological markers that can be detected in the blood soon after the onset of the disease, and this has very important diagnostic implications,” said Dr. Mady Hornig, an associate professor of epidemiology at Columbia University and lead author of the new study.

Most cases of ME/CFS occur after an acute viral infection. Some researchers have speculated that the infection, or an environmental exposure or other trauma, sets off an immune response that increases cytokine production. The immune system, however, does not return to normal functioning once the threat has passed.

The underlying cause of the syndrome is unknown, and current treatments generally aim for symptom relief. Some medications already in use affect the cytokines that were shown to be active in patients, Dr. Hornig said. Those drugs would be obvious candidates to test in clinical trials, she said.

The research team plans to publish data later this year on changes in individual cytokine profiles over time, tracking more closely how they fluctuate with the reported severity of symptoms and other factors, Dr. Hornig said.

A version of this article appears in print on February 28, 2015, on page A12 of the New York edition with the headline: Study on Chronic Fatigue May Help With Diagnoses. 

Tips for Mental Fitness

MS and Depression: Tips for Mental Fitness
By R. Morgan Griffin
WebMD Feature
Reviewed by Arefa Cassoobhoy, MD, MPH

When you have MS, your emotions are in play. While having MS raises your chances of having depression, knowing that fact -- and being aware -- can help you try to prevent it and get treatment. Protect yourself with healthy habits.

Get moving. When it comes to MS treatment, exercise is a two-for-one. Being active improves MS symptoms -- like fatigue and bladder problems -- and improves your mood, says Rosalind Kalb, PhD, vice president of clinical care at the National Multiple Sclerosis Society. "It's essential," she says.

Many people with MS say they feel better after walking, swimming, and biking. Before working out, talk to your doctor about what kind of exercise is good for you.

Relax. Kicking back in front of the TV likely isn’t enough. Try to relaxconsciously -- set aside time for it.

"I think it’s especially hard for people, especially women, to be in the moment," says Cindy Richman, senior director at the Multiple Sclerosis Association of America. "Yoga, meditation, mindfulness, and other approaches can help with that." Taking breaks works too, she says. “Read a few lines of a poem. Write in a journal. Go smell the flowers in your garden."

Get backup. You still have all the responsibilities you had before you got MS, but now you may not have the energy to tackle them all. That leads to stress.

Talk to your family and friends. Ask for help -- whether it's grocery shopping, picking up the kids after school, or making dinner. Talk to the people in your life before you're already feeling overwhelmed.

Taking care of yourself -- and preserving your resources -- isn't selfish. Lowering stress is good for your mental health, and that's good for your family.

Tackle issues one at a time. It's easy to get overwhelmed, especially when you’re having a challenging day. Stay in control by focusing on specific issues, and come up with solutions one at a time.

What would make your mornings easier? What household tasks are the most and the least important? Prioritize. "One success builds your confidence, and that leads you to the next," Kalb says.

Get a coach. Therapists -- like psychologists, social workers, and counselors -- aren't just for people who are in the middle of a mental health crisis. They can also be life coaches, Kalb says. "Therapy is a way to help you sort out your priorities, to find solutions to what's challenging you at home or at work."

You might see a therapist for a while, take a break, and then come back if a new issue crops up, Kalb says.  

Treating Depression

If you think you might be depressed, don't rely on lifestyle changes alone.
Find the cause.  Your doctor can help you find out what triggered your depression. The causes can vary.  
It’s possible your depression has nothing to do with MS.
Having a chronic condition like MS can create stress, and that may bring on bouts of depression. But research has found people with severe MS symptoms are not necessarily more likely to be depressed than people with mild symptoms.
Sometimes medication can play a role.  The steroids and other medications used to treat MS may trigger or worsen depression.
The MS itself can also affect certain areas of the brain that relate to mood. 
Once you understand what led to your depression, you can get the right treatment.
Build a team. To treat depression, you'll do best with a team of people supporting you.  
A psychiatrist can determine if medication would help you. Don’t expect an immediate change. Finding the right drug and dose for you can take some time.
Don’t stop therapy. While drugs can relieve symptoms, Kalb says, therapy can help with specific problems that might be contributing to your depression. 
Depression is not something you need to hide. Identify friends and family that you feel comfortable talking with about how you’re feeling.  Their support can really help. Your MS specialist can also be your ally.
Whatever you do, Kalb says, don't accept that depression will be a constant part of your life.
"They say, 'Well of course you're depressed, you have MS.' That's not true at all. Depression is never normal for anyone, including people with MS."
Get help. Don't settle. "It's not enough for treatment to make you feel a little bit better," Kalb says. "Treat your depression until it's gone."

MS and Your Brain

MS: Live and Thrive

MS and Your Brain

You can keep your memory sharp with some easy tips and tricks -- from old-fashioned sticky notes to high-tech gadgets.

Tools to Help You Remember

Digital recorder. Carry one with you. When you need to remember a name, phone number, or date, record a note to yourself. Write down the info or type it into your computer when you get home.

Cell phone camera. Use it to snap a photo of new people, places, and things. Email the pictures to yourself with a note so you'll remember them later.

Calendar. Use the one on your computer or cell phone to keep track of your schedule. Set it to send you reminders a few days or hours before a birthday, meeting, or other event.

If you're not a big fan of technology, write important dates on an old-fashioned paper calendar.

GPS system. Getonefor your car and put an app on your cell phone so you don't get lost. Type in the address you're going to and you'll get step-by-step directions by car or on foot.

Buy a pillbox. Use it to organize your daily medicine. Some have built-in alarms that alert you when it's time to take your medicine.

Tricks to Keep Organized

White board. Put one on your fridge or other area where you spend a lot of time. Write notes and to-do lists on it.

Post-it notes. They're a good way to jog your memory. Stick them around your house, office, and in your car.

Box or bin for everyday items. Place it in a central area, like the kitchen. Put in your car keys, glasses, and other things you often use. You can also set aside a folder for important papers.

Thursday, February 26, 2015

Jimmy Page's Chopin Prelude n.4

Published on Jul 29, 2012

Jimmy Page covers chopin in arms concert and use his violin bow in the end. 

ARMS CONCERT was a way that artists found to get money for the reseachs of some deseases. ARMS= Action into Research for Multiple Sclerosis.

This concert particulary was in Madison Square Garden, with Page, Clapton, Beck, and many other great artists.
I really do not own this music and this version, all rights reserved to Frédéric Chopin and Jimmy Page.
For those that does not believe its Page:

-When they played stairway, clapton shouted at the end, just listen CLAPTON WORDS:
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The ARMS Charity Concerts were a series of charitable rock concerts in support of Action into Research for Multiple Sclerosis in 1983.[1] The first (and initially planned to be the only) event took place at the Royal Albert Hall on September 20, 1983, with subsequent dates occurring in the United States, with slightly different lineups of musicians.

The idea for hosting the concert was envisaged by Ronnie Lane, ex-bassist for The Small Faces and The Faces, himself a casualty of multiple sclerosis. The concert was billed as The Ronnie Lane Appeal for ARMS and featured a star-studded line-up of British musicians, including Jimmy PageEric ClaptonJeff Beck,Steve WinwoodAndy Fairweather LowBill WymanKenney Jones and Charlie Watts. The concert was particularly notable in the fact that it was the first occasion on which Clapton, Beck and Page, each a former lead guitarist for The Yardbirds, had performed together on stage.

Monday, February 23, 2015

Depression and M.S.

Understanding Depression

And now a word about depression – which is very common in MS even without the stress of the holidays. Remember I said that grief is normal and healthy? Well, depression isn’t. Depression doesn’t ebb and flow like grief; it comes and stays like an unbearable blanket of painful emptiness. As much a part of the disease process in MS as it is a reaction to its challenges, depression is a symptom of MS that deserves prompt diagnosis and treatment.
If you find that your mood has tanked, leaving you feeling sad or irritable most of every day for a few weeks, accompanied by a loss of interest in things that used to engage you, changes in your sleep patterns and/or eating habits, or thoughts about hurting yourself or suicide, let your healthcare provider know about it. Depression is very treatable. Getting a grip on your mood will make life – and the holidays – feel much easier to manage.

Diagnosing & Treating Depression

So if the holiday blues are grabbing you more than the holiday spirit, don’t hesitate to get the help you need – from family, friends, or a qualified mental health professional. And if you’ve found some good strategies to manage – and enjoy – the holidays, please share them! You can also join the conversation about surviving the holidays here.

Rosalind Kalb, PhD

Rosalind Kalb, PhD is Vice President of Clinical Care at the National MS Society, developing and providing materials, tools, and consultation services for healthcare professionals. As a clinical psychologist in private practice, Dr. Kalb provided individual and family therapy for people living with MS for more than 25 years. She is the author of the National MS Society’s Knowledge is Power series for individuals newly diagnosed with MS and senior author of Multiple Sclerosis for Dummies.

Brain Healing

The Brain's Way of Healing: stories of remarkable recoveries and discoveries (LINK)

In his new book The Brain’s Way of Healing, Norman Doidge shows the astonishing advances of neuroplasticity being used to improve, and even cure, many prevalent brain problems previously thought to be incurable or irreversible. Doidge describes a series of remarkable recoveries using natural, non-invasive techniques: cases where sounds played into the ear successfully treat autism, learning disorders and attention deficit in children; gentle electrical stimulators tingling on the tongue are used to reverse symptoms of multiple sclerosis and Parkinson’s. Finally, he reveals simple methods proven to reduce the risk of dementia by 60%. Using moving human stories to present cutting-edge science, Doidge illustrates the principles that everyone can apply to improve their brain’s performance and health.



Thursday, February 19, 2015

Miracle Cures

Man Is Wolf to Man...from the Latin Homo homini lupus
If they aren't preying on people's insecurities or greed, try desperation. There is nothing like a hopeless situation to send a man scurrying around like a crazed rat. Easy prey for the Confidence Man.