benefits and risks of antidepressants, sleeping

Chronic fatigue syndrome (CFS) has been a mystery illness for far too long. The condition is also known as myalgic encephalomyelitis (ME) or systemic exertion intolerance disease (SEID). Whatever you call it, this is one challenging condition. And until this week there has been no clear sense of how to test or diagnose ME/CFS. That may be about to change.

A New Study Sheds Light on Chronic Fatigue Syndrome:

Pro-inflammatory proteins in the blood are linked to chronic fatigue syndrome. This may be welcome news to the roughly one million people in the U.S. who suffer from ME/CFS. This condition is characterized by overwhelming exhaustion. Even a little physical or mental activity can set patients back for days. Rest does not relieve the flu-like symptoms.

Brain fog is another common complaint. Trying to concentrate, balance a checkbook or read a newspaper can be incredibly challenging. Other symptoms may include enlarged lymph nodes, muscle pain, joint discomfort, digestive tract distress, muscle pain and headache. Many people report sleep problems and can not get a decent night’s rest.

ME/CFS can manifest itself out of the blue, though many people report that it is preceded by an infection or a flu-like illness. They just never recover. Sometimes an accident seems to trigger the condition.

Doubting Doctors Need to Pay Attention:

Many health professionals have found chronic fatigue syndrome difficult to treat. That’s because there have been no clear causes and no definitive tests for the syndrome. As a result, some physicians perceive chronic fatigue syndrome more as a psychological condition than a clear-cut disease.

Many health professionals perceive patients with ME/CFS as complainers or whiners. That’s because their symptoms are nonspecific and hard to treat. The condition has been demeaned by the name “yuppie flu.”

But now a group of scientists at Stanford have discovered specific changes in 17 cytokines. These are molecules that the immune system uses for signaling.

A study found distinctive patterns of these cytokines among 192 people with chronic fatigue syndrome compared to blood levels of these compounds in 392 healthy individuals (PNAS, online July 31, 2017).

Several of the cytokines are linked to inflammation. The new test should help doctors make a diagnosis and may help drug companies develop a treatment.

Stories About Chronic Fatigue Syndrome:

Jill responded to an interview we conducted on our syndicated radio show:

“CFS is a more devastating illness than it is possible to conceive, even for me, after 21 years of ‘living’ with it.

“I had polio when I was 3, in 1955. As a small child, I dragged around on crutches with braces that weighed more than I did. When that got tedious, I learned to break my braces so I could use my manual wheelchair. When my shoulders, wrists, and arm muscles gave out from overuse, I switched to a power chair. A disability of this magnitude is not the biggest disaster that every happened, but it is inconvenient.

“I got CFS (sudden onset: went to bed fine, woke up sick) in 1987. CFS, unlike polio, stopped me dead in my tracks. It took my legal career, my most loved scuba diving hobby, even my ability to read. Without employment, I couldn’t afford to stay where I was. I lost my home, my friends, and my community.

“The misery of these losses did not begin to compare to the misery of the physical and cognitive pain and suffering this illness caused.

“If I were told I would have to be reborn for 1,000 more life times with either polio or with CFS, it would not take me 1/2 of 1 nanosecond to know that I would choose polio.”

HSF also responded to our interview:

“Thank you for bringing attention to this debilitating disease. My 23-year-old daughter has been struggling with this for two years and I have watched her life literally being slowly taken away from her. She can no longer work and has given up hope of every having any kind of normal life. There are so many facets to this disease and the more that people are aware, the more focus and attention it will bring to it. Thank you for devoting time on your show to this.”

Lila is not atypical:

“I am 73 and so tired I can barely get through a day! I get up and within half an hour I am ready to lie down again. My doctor says my blood work is OK.”

Perhaps the new research will allow physicians to test for cytokine abnormalities, in which case blood work may not be OK.

M.D. has a hard time showering:

“I have Chronic Fatigue Syndrome and fibromyalgia. Showers are exhausting, especially the thorough drying process. I have devised a way using multiple towels wrapped at various levels. I know I sound a little whacko. One around me, one wrapped around me below the breast. It is hard to convey the level of sheer exhaustion… often a shower must be geared up for and then an activity I must rest from.”

Christine has also had a hard time with chronic fatigue syndrome:

“I’ve suffered for two years after I was given steroid medication for 9 weeks. Once I stopped it, I developed the worst fatigue: seizing up of muscles, severe pain in my muscles, brain fog, dizziness, slurred speech, paralysis, breathing difficulties, and I couldn’t stand up due to severe dizziness.

“I have had six hospital visits and seen 40 different doctors and specialists. Many said things like ‘you’re just depressed,’ ‘you’re psychosomatic’ or ‘Oh, you have chronic fatigue syndrome, I can’t help you.’  They just plain rudely took my money and gave me nothing in return.”

Share your own ME/CFS story in the comment section below. Has anything helped you overcome this condition?

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  1. Greeley
    Reply

    I’m a retired neuropsychiatrist and am grateful for this article. In my research, CFS is identical to the 19th century medical condition “neurasthenia” and is a direct result of adrenal fatigue. James Wilson wrote a wonderful little self-help book by that name in 2001, which I recommended to all my CFS patients, with good results. I struggle with it myself, although retirement and moving to a small Midwestern town has greatly relieved my own stress and helped preserve adrenal function. Cortisol is the master adaptive hormone from the adrenals and controls energy release. When stressful living has exhausted our adrenals, we develop autoimmune diseases and CFS. Using Dr. Wislson’s self-help book can help anyone rebuild our adrenals. I’ve done it! No kick-back here either! Correlation is not causation and when our adrenals can no longer produce adequate immune suppressing cortisol, our immune system becomes over-active. All immune biomarkers are elevated with adrenal fatigue and low cortisol levels.

  2. Katty
    California
    Reply

    I began having severe fatigue about 8 years ago. I have asked my doctor dozens of times to help me with this. I have lost many jobs, lost my home, lost my lifestyle, and have been a blink away from homeless several times because I can’t keep a job more than a few months because either I call off due to exhaustion or I can’t keep up with productivity. Finally, a doctor prescribed me stimulants. This hasn’t been without problems too, but at least I can work. I can’t do much else though. I work and sleep. I have had to give up gardening and any social life. My home is not as clean as I would like it and sometimes this has been very embarrassing. Worst of all….no one understands!!!!! I am thought of as weak and a family problem.

  3. Barbara K
    Reply

    OMG THIS IS IT ‘ THERE IS A NAME FOR THIS AND I’M NOT ALL I DON’T HAVE TO SECOND GUESS MY STRUGGLE ANYMORE??
    “I’M IN COMPLETE SHOCK ” I THOUGHT OF EVERY MEDICAL ILLNESS I KNEW OF AND MADE MYSELF SETTLE WITH ” it’s gotta be DEPRESSION!! I refused to go back to my Dr because all that depression medication makes me cry and never stop.

    I’m done being wrongly diagnosed just rt I be sent off crying all the time ‘ .. I can’t focus ‘ Its too tiring I’m Exhausted I feel like I need days of straight sleep , for days on end ‘
    I hurt or badly and the medication that helped my Pain this DR cut back my dose and strength. He was saying to me he can not believe that in 4 years time I was on all that medication `Unless of course I was a cancer patient.

    ‘ I told him to test ME NOW `OH PLEASE ..&.. DO NOT RULE OUT CANCER . IF IT CAN HURT LIKE I HURT ‘ AND BE CONSTANTLY, WHOOPED LIKE AS IF I’M HAVING “THE FOREVER FLU ” PHYSICALLY & MENTALLY EXHAUSTED. ENERGY IS GONE / DRAINED WHEN I AWAKE IN THE AM.. THATS RIGHT ‘ I SAY TEST AWAY’ THIS IS NOT NORMAL ‘ &

    A DIAGNOSIS I NEED.. .. SO as I am TYPING YOU ALL this right Now ‘ theres an order for blood work next to me . I am going tomorrow morning ‘ he’s checking everything he could in a blood test.. This article has saved my life ‘ without quality of life ‘ it’s not worth feeling so badly..
    Thank you ..

  4. Denise
    Perth Western Australia
    Reply

    Yes I totally agree with they hypothesis that fatigue is caused by inflammation. I have the evidence that supports this hypothesis from cytokine panels I ordered during recent debilitating episodes.

    I have found that the CRP (c-reactive protein) test conducted by allopathic medical practitioners and hospitals does reflect the inflammation occurring when I have done cytokine panels at the same time. I have a seriies of these cytokine panels before hyperbaric oxygen chamber treatments, at 50 hrs which shows a wash out of cytokines from the HBOT and then at 75 hrs and 100 hrs. HBOT significantly decreased my fatigue and related sypmtoms including pain and brain fog and inflammation is reflected in my cyctokine panel results. However HBOT does not address the cause of the inflammation (in my case inflammation is cause from the gut permeability, SIBO and exposure to mold). But in my opinion it is a far more effective tool at stemming inflammation than anti-inflammatories. I have these results should anyone be interested in seeing my cytokine panels and CRP results.

  5. S
    NC
    Reply

    Have any of you been on statin drugs? I found most all these symptoms appeared after one and one half years on statins. I took myself off statins and many of symptoms are slowly improving. My former exercise program, swimming, is still difficult but my goal is to be able to swim again.

  6. Jeanette
    Reply

    I do enjoy peoples pharmacy. The topics are very interesting and informative.
    I have suffered from CFS/ME for about 20 years. I am lucky to have an osteopath who specialises and keeps me as stable as possible.
    Im very interested in this new blood test but as I live in the UK I doubt very much whether I will be able to take advantage of it.
    Best wishes to all in the US who may benefit from a this new test which proves that the illness is real and debilitating.

  7. PattyPR
    Reply

    I have had CFS and Fibromyalgia (plus other non-life threatening but debilitating and/or very wearing conditions) for some time, but was only properly diagnosed in the last decade. Having done some research recently via Goolge, and using trusted sites like Mayo Clininc and similar, I have discovered that I have all of the symptoms of Lyme disease.

    I remembered I went to girl scout camp (North of Houston) for a few days when I was somewhere between 12 and 14, and saw a dark raised tiny spot for a few days on my upper leg, a few inches below the top, and finally realized back then it was a tick and removed it. It was dark, rounded and tiny, and as a kid, I had just thought I suddenly had a new mole. That was about 50 years ago.

    I was recently doing research concerning my husband’s Arkansas cousin who said she became ill every time she ate beef, pork, lamb, but could eat fish and chicken. I found the info about alphagal, an allergery to mammalian meats, developed from a protein injected during tick bites. Two tick bites with different sets of serious consequences for two different people?

    I can no longer work after being struck twice in the legs by the same vehicle as I was a pedestrian in a crosswalk in 2001. I was already in serious pain and exhausted all the time, having difficulty staying asleep all night. When I was young, I had hay fever, but that went away later, unless I get heavy household dust exposure. After the auto accident, I developed multiple contact and food allergies over time. My life seems to be a cascading series of inflammatory issues, with even more significant pain 24/7.

    I dread the day I am told I can no longer take Hydrocodone (with the furor over the current trend of those who are abusing it). It is the only way I can get out of bed and function at all. So far, other drugs do not work, or I am allergic. I have become allergic to sulphites in the last two years. It is used to preserve many medications, especially antibiotics. I am prone to infections, despite being careful with hygiene. Allergies are so bad I cannot walk out in the grass because if a blade touches me, it’s constant itching.

    Mosquito bites swell and are very painful. cCigger bites give me chills if scratched even once. I was an avid outdoors person but can no longer hike, fish, camp, or even stroll through a park. I must rely on an outdoor scooter to go anywhere on my two acres, but seldom go outside except to get in the car to go to any one of multiple doctors.

    I was in the hospital recently for an abdominal abcess (multiple past hernia surgeries) and noticed I was reacting to cholohexidine. After eight weeks of wearing a PICC line, it had to be removed due to a severe localized reaction when itching began spread all over the body.

    I hope some day that gene therapy or stem cell treatment can help all these conditions. I hope more doctors learn to accept that CFS and Lyme are real conditions and far more widespread that orginally thought, and the fact that not everything can be taught in medical school. There are still discoveries to be made.

  8. David
    Vancouver, WA
    Reply

    There are many triggers to ME/CFS, one of the most common being the Epstein barr virus, which is why ME/CFS often strikes young people in their teens and early twenties.
    It’s also very common for Statins to trigger CFS but not necessarily the encephalomyelitis part. Encephalomyelitis infers inflammation of the brain and spinal column but many believe as I do that you can have CFS without encephalomyelitis.

    For me, I got CFS from being on a low dose statin (10mg Lipitor) for one week – that’s right – only one week! After one week, I developed neuropathy of my toes and so I stopped Lipitor but things continued to get worse. Within two weeks, I started to get fatigued from just light exercise and within a month, I could no longer ride my bike and I would wake up tired every day and with a flu like sickness that never went away. It’s been a year now and I am only now slowly, very slowly, getting better.

    I just wanted to tell everyone that CFS is a very common side effect of taking statins and is another excellent reason to look for any alternative to taking them. Until you have suffered from CFS, you just have no idea how terrible your quality of life can get. There were times, I really didn’t want to go on living.

  9. G
    Reply

    Really?! Are you so ignorant about all the thousands of research articles showing ME /CFS is a seriously debilitating physical disease. You all have some reading to do.

  10. Lynda
    WA State
    Reply

    Here we go again. The Stanford Study was overseen or at least ok’d by the same researchers who haven’t moved forward with ME/CFS research since the Incline Village outbreak in CA in the mid 1980’s. I suggest people read PLAGUE, by Judy Mikovits to get another take on CFS and Autism – amazing book.

    I’ve had ME/CFS since 1951, when living near the Hanford WA Nuclear plant, and when they were continually letting Iodine 151 off into the air to see what would happen to people, as were other agencies, one in Livermore, CA and other parts of the country as part of the Manhattan Project. PLAGUE will shed light on this devastating disease and explain why nothing has been found to be the cause, and I believe there are a few, not just one.

    Suggestion to people who are flat down in bed, is to listen to your body, and don’t accept meds Drs. who order Gapabentin, Lyrica and Cymbalta for the pain of Fibro. They’re serious anti-depressants and anti-convulsion meds and make people for the most part feel as though they have Alzheimer’s, or worse. There is no present cure, and likely won’t be any time soon. It’s a world-wide medical issue that needs tending to, but big business, politicians and greedy individuals have all but stopped true research, while we suffer the consequences. Nobody has the “magic bullet” at present, and my heart goes out to those who suffer from this most debilitating disease, and please don’t let Drs. discourage you when they say ME/CFS doesn’t exist and are rude.

    The NIH and CDC all acknowledged its existence, but state there is no cure, so find another Dr. who will believe that you have it. Patients should be tested for diseases such as Lyme’s to eliminate it, as well as parasites, and bacteria, although it’s difficult to get an order or permission from insurance companies to have these tests.

  11. Donna
    Connecticut
    Reply

    My unrelenting 17 yr chronic fatigue was undiagnosed Lyme Disease and the tick borne infections of Bartonella and Babesios. Once I went to a Lyme Literate physician (LLMD) and he did a proper Lyme test, and other supporting blood tests I was officially diagnosed with the Tick Borne Infections.

    Finding the cause helped me immensely emotionally. Treatment helped physically. More info is in the downloadable green Lyme Basic Booklet at http://www.lymepa.org

    Wishing all better health.

  12. Helen S.
    sC
    Reply

    It is a real a debilitating condition. The pain, weakness, lack of stamina, fatigue, orthostatic intolerance and post exertional malaise make life very difficult. After 28 years it has not become easier.

    Currently I am working my way through recurrent breast cancer and the ME prevents me having any meaningful treatment because it is too invasive for the ME body. I am therefore faced with radical breast surgery. Doctors give it very cursory attention and seem to absolutely nothing about how it affects individuals’ lives. Living in hope for a cure but I suspect not in my lifetime at age 72.

    • Barbara K
      Florida
      Reply

      Ignorance ‘ IS THE WRONG CHOICE OF WORDS ‘ FOR ME MY DR NEVER MENTIONED THIS ME / CFS TO ME . TO KNOW EXACTLY WHAT IT IS !! & THERE FOR WHAT IT IS TO RESEARCH. WHY ARE YOU BEING SO VERY HARSH. I TAKE THAT BACK ‘ YOU HAVE TO BE LIVING WITH THIS YOURSELF, AS I AM ALWAYS SHORT WITH OTHERS MYSELF *

    • Jan
      France
      Reply

      Those of us living in Europe struggle with all the acronyms used on this site. US sites seem to be loaded with ‘quick fixes’ but this site, trying to de-mystify the pharma industry, is useful. I like it as it gives me additional research refs into what the medical profession is up to. US medicine is a convoluted system, mystifying most of the time as to who and what to believe.

      One site I’ve come back to time and time again is useful, especially for those who chronic fatigue, ME, thyroid, cancer etc. it’s a no-nonsense site hosted by a doctor. See Sarah Myhill.com

      From her, I use her knowledge to weed out the PR rubbish and pseudo-scientific analysis that you have to buy for ‘only $49.95’. This is a sensible site.

      But mostly, the US diet is a huge problem, the food chain and the corruption within it. It is sad for those of us in Europe to see, from the food that’s grown, to the water that’s drunk.

  13. Pam
    Reply

    In March of 1997, I came down with a severe chest cold. I was scheduled for
    a vaginal hysterectomy the first week of April.

    After the surgery, I was not the same person. Recovery from the operation went fine; no
    issues then or now. However, I firmly believe whatever virus I got kicked off the CFS/Fibro.

    Was formally diagnosed in the Rheumatology Department of Cleveland Clinic. Back then, not
    much was known about these two debilitating diseases. I have all the issues listed in any
    article on Fibromyalgia/CFS. For two years, was in deep depression because who I used to be was gone forever. I call it a “grieving process.”

    I have had to learn to be humble; accept what cannot be changed. However, Zyflamend, LUNA, Adrenal Support capsules, glutamine, magnesium help me function. Just know good days; bad days happen!

  14. Polly
    Wisconsin, USA
    Reply

    I had chronic fatigue syndrome for 7 years. I agree it is devastating. I could barely stand up, needed help with meals, grocery shopping, etc. I lost my job. A program that I found online (the Gupta Programme) enabled me to recover. The basic model of that program and a number of others, is that CFS is due to an over-active sympathetic nervous system, due to either acute or chronic stressors. The symptoms become a source of great anxiety, which in turn perpetuates the symptoms. I learned not to fear the symptoms, to reduce the stress-producing fearful thoughts, to visualize health instead of disaster, and to meditate. Gradually my strength came back (not without many ups and downs along the way). The cytokines and other markers are correlates, not causes. I would encourage anyone with this illness to believe they can get well. That is the first step.

  15. "Patrice"
    NC
    Reply

    I am pleased to see that The People’s Pharmacy is shedding light on recent research on ME/CFS! We who suffer from this devastating disease would prefer you always call it “ME/CFS” and not chronic fatigue syndrome, which belittles the illness. I believe the time has come to stop referring to the disease as a “mystery” illness. It is also time to stop repeating the stories about how some medical professionals say that it is not “real.”

    My ME/CFS began suddenly in January of 1992, the very day I sat down to begin studying for my licensing exam as a Ph.D.-level psychologist. My primary care doctor told me she believed it could be ME/CFS, and told me that after 6 months elapsed, she would send me to a specialist. That specialist confirmed what I had was indeed ME/CFS. So I was very fortunate to be able to avoid the lengthy doctor-shopping in search of what was wrong with me.

    My life journey since then has included stopping work as a relatively young person, missing out on family vacations, and dealing with people who say “Well, I’m tired too–maybe I have ME/CFS!” or “I see you are getting into a lazy lifestyle.” It has required cancelling, or never scheduling, many social plans. Fortunately, my family and my mate have been really supportive, and I have been blessed with friends who have the illness, too. Staying in touch with them by email relieves the terrible sense of isolation than can be a result of this illness.

    I hope that The People’s Pharmacy will continue to follow the research on ME/CFS and keep its readers well-informed!

  16. Charles
    S.C.
    Reply

    I have many of the same conditions mentioned here! Fatigue syndrome!
    I am also on Oxycodone for chronic pain. They oxycodone helps me to get going in the mornings but, like all pain meds, it only last a short time. Then the fatigue and pain are right back biting you in the butt again!

    Constant fatigue is one of the very worst things I have ever experienced! It not only drains your body of what little energy you have but it also drains your mind! You are worthless when both your body and mind are both fatigued! You are like a run-down flash light battery that cannot be recharged!

    This condition causes much depression and most spouses are of very little help to you! They are continually calling you Lazy, sorry, worthless and more!

    I had much rather be Lazy that a Bitch! That is for sure!

  17. Alan
    Georgia
    Reply

    I had CFS in 1980’s. That’s when I learned when a doctor has no idea what is wrong with a patient, they say it’s depression. They ask “Are you depressed?” I tell them I am and they ask why. I tell it’s because I have CFS. Cure this and I won’t be depressed.

    After six months my father found a doctor who was studying CFS. He asked how I slept. I told him I wake up every hour but fall right back to sleep. He prescribed sleeping pills. After a few weeks of great night sleeps, my body was able to fight it off and I no longer had CFS.

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