"Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds," read the headline in the February 17, 2011 edition of The New York Times. Within a few days Chronic Fatigue Syndrome (CFS) ranked third on Yahoo's 'Trending Now' list. For the misinformed reader it's likely these headlines translated that CFS is all in your head.
Until now, I've told no one except a small inner-circle of family that my mysterious breakdown in health, vitality, and cognition that started the night of May 5, 2007 was not due to an exotic virus I picked up in the Congo while on assignment for National Geographic. The truth? I'm actually a textbook case of someone with CFS, a syndrome I sniffed at until it happened to me. For the sufferer CFS means a total health breakdown, like a plane that inexplicably begins tearing itself apart mid-flight. Together, all the various dysfunctions associated with it leave the patient in a state of health more debilitating than chronic obstructive pulmonary disease, heart disease, or multiple sclerosis.
There is no known cause for CFS, and most terrifying from where I sit, no cure.
I've now decided to come out of the closest -- so to speak -- because it's ultimately self-defeating living a lie. Plus, someone has to start owning this syndrome in public. The more people who fess up to having it -- and there are many more who have it than let on -- the better off we all will be in the end.
When you have CFS one of the greatest battles you fight are the ignorant smirks and expressed disbelief of those who think it's all in your head; that is, those that don't live with you and live the truth of CFS everyday. Negativity and doubt amount to an energy drain you can ill afford. It's the reason I have refused up until now to identify myself as a person with CFS.
That which medicine can't explain we tend to label psychosomatic and blame the patient, a cruel phenomenon all too familiar to those who've had MS, rheumatoid arthritis, and lupus, and a myriad of other ailments in decades past.
And this brings me back to the latest round of articles and speculation about CFS in the news. It was all triggered by a rigorous study exploring treatment options for CFS in Britain published in the prestigious medical journal, The Lancet. At first glance the headlines suggested CFS is best treated with psychotherapy -- a not so subtle conclusion that it's all a psychological condition. Upon closer inspection, however, the study itself says no such thing. It states quite openly that CFS, or Myalgic Encephalomyelitis (M.E.) as it is called in the U.K., is a syndrome of various debilitating physical dysfunctions. The thrust of the article is that CFS is best treated by a combination of medicinal intervention, exercise, and Cognitive Behavioral Therapy (CBT). CBT is intended to help the patient deal with the ugly reality that they will never get better, that they are forever changed, and that the old you is gone and the new 'CFS you' needs to be embraced. The theory is from this acceptance and surrender peace will be your reward.
And therein is the rub. I have no problem with CBT as part of overall treatment for CFS. I'm still fighting to get better and am not yet ready to surrender to a life where I spend 20 hours a day horizontal, lack the physical energy to sleep with my wife, and hold my new baby girl for more than a minute. But I have actively sought out CBT treatments, and all other forms of psychotherapy. Anything to help is my motto, from exotic herbs to the couch. And this openness to CBT is one I'm sure is shared by many with CFS.
The problem is good luck finding a psychiatrist or therapist who has ever worked with someone with CFS, or even knows the symptom profile. I've seen four therapists to find an outlet for my frustrations. Instead, I have found each time a good-natured, well-intended professional who -- when I tell them my textbook symptoms of CFS -- only shake their heads and say, I never heard of that. It must be awful. Thereafter I spend my money and more importantly my precious energy stores educating them on CFS while they in turn struggle to fit me into a paradigm of psychological dysfunction. In the end the only help I've ever received from a therapist, or non-CFS specialist doctor for that matter, was to seek one who has a loved one who suffers from CFS. It seems in this era only they know the devastating truth and take you at your word that you're sick, not sick in the head, which for me is the best therapy I know of right now.
Anyway - we miss your commentary and I left a contact method in one of your earlier responses where I asked that you contact me - so look back at some of your earlier response and perhaps we can do something more in this area.
Thanks again for your whirlwind of comments - hopefully it didn't set you back a bunch!
Thanks for coming forward and letting people know. I have heard that there are several well known people in the film industry with it, but they are terrified that they would lose work. Most people who have CFS are actually very driven and talented people - certainly not the type to seek sympathy.
Talking to someone about the life you had just doesn't exist anymore - is not a bad thing. I've done it and after educating the psychotherapist we became friends and she had much more benefit of the sessions than I.
Having a family member in college and one in high school, loving my job, never sick, and suddenly becoming stricken with this disease takes a huge adjustment. Talking with someone - other than family who typically have been talked out, or friends that seem to be disappearing by the week, becomes old quick for both yourself and those that you're communicating with. So an outside source isn't a negative thing.
Unless of course if this psychotherapist thinks like many docs that it's "all in your head" than by all means run away because they don't have a clue.
The specific carbohydrate diet is pretty stringent. If that doesn't work, maybe check into food allergies.
Best to you. Thanks for bringing attention to this malady.
BTW, I tested positive for Enterovirus .. this is the only "evidence" of what I have... Dr. Chia of Torrance California...I wonder why he is not mentioned more as a researcher at the forefront of CFS research....he's found 86% of CFS/FMS/LYMES patients with Enterovirus...this seems significant to me.
Love to All
Our Reward is in Heaven!!!
That's the reason Laura Hillebrand isn't a big advocate. It's certainly not that she wouldn't love to - but I believe once she finished her book she couldn't even go on a book tour with the success of the movie and all.
I personally don't know how she did it as I've thought of the book route and even have one pretty much laid out - but that's a project I've not really done much with in about 5 years. It's a simple choice I had to make of do I want to exhaust all my energy doing this or do I want to take some of my time to appreciate a bit of the world around me - things I didn't lose along the way. You know the whole take the time to smell the roses saying.
Choices are very limited you learn the deeper and longer you're into the disease - at least my thinking is that way. I'm now in a place where I can enjoy Mother Nature from my patio - at least when the sun isn't beating on it. Who knows maybe I'll just take my laptop out there and when it warms up again. Thanks for your enthusiasm
John please be judicious in your "giving" as we really don't need you to wipe yourself out and disappear on us. That invisible line that we at times "overlook" is real and so shockingly devastating. Only those of us that have experienced taking a few steps over that line and ended up months later wondering where all that time went really understand those consequences. So my friend let caution be your guide and stay within your limits. But thanks again!
This is how the UK press was able to report so irresponsibly on PACE trial results. So called experts from Science Media Centre feeding them lies. It's truly shocking and sinister.
This is the first step to a treatment, if not a cure.
CFS/FM/ME has ruined the lives of countless people for too long and it's time for the snickering to stop.
The trial investigators did not use objective outcome measures apart from a six minute walking test in which patients in the CBT arm were able to walk an extra 21 metres in 6 minutes (354m) compared to baseline [1] - a distance well below that of healthy elderly subjects (631m) [2]. The clinical benefit is insignificant in relation to the trials cost.
It would be more consistent if the researchers had adhered to their initial intention of using actigraphy at the end as well as the beginning of the trial [3] to see if patients traded their other daily activities for exercise. The hypocrisy of the researchers is demonstrated by their comments [4] especially as patients chosen for the trial had to be well enough to attend clinics.
Of the 3158 patients screened for eligibility for the trial from secondary fatigue clinics 1011 did not meet the inclusion criteria, the Oxford criteria [2]. These criteria exclude those with neurological signs and symptoms so by definition this trial had nothing to do with myalgic encephalomyelitis (ME) as classified by WHO [5].
Thanks for giving all of us an opportunity to say "me too"! I also can remember the precise day I became ill, a November Sunday in 1997. My quality of life after 13 years is reasonably high, but it is becoming difficult to manage with a fixed income based on my salary level 13 years ago. And I am fortunate to have disability pension benefits and reasonably-priced health insurance - many are financially devastated. For many years, major disability carriers made life a living hell for those trying to gain benefits for a permanent disability.
I have great hope for those like you who have become ill more recently. The scientific community now seems more focused on finding answers, and as people like you push for answers, the chances for the rest of us to benefit from new discoveries and therapies increases as well.
This illness is still misunderstood, and the personal toll on patients as a result of that misunderstanding is still too high. It is encouraging that over the last five years I have found an increasing awareness of our devastating illness in the general public.
Life can still be good, just different. But I still pray for a cure!
As hard as it is financially, emotionally, and physically, I think the hardest part is feeling that you can't be there for people when they need you. My folks are in their 80s with failing health and, although I am their primary caretaker and still do a lot considering my CFS, I can only do so much before I have to crash for days. I want to be their rock through all of the bad times but my body won't let me.
To all the people who don't believe that what we are dealing with is real, I say, "Try being me for one week and then we'll talk."
I have suffered from CFS for 20 years & fibromyalgia for about 10, so I can intimately relate to your story. I was working a high-profile job in NYC, and one day just couldn't get out of bed. I experienced everyCFS symptom and spent about 6 weeks in bed. I finally returned to work, hiding the fact that I felt sick, and was able to fake it on and off for years. I would go to work and come home and get in bed. I basically became a recluse because I didn’t have any energy left for friends. It finally got so bad that I had to go on disability.
I realized how much stress I was causing myself by hiding my illness. I decided I no longer was going to identify myself by my illness, and it wasn’t going to control every aspect of my life. I had missed out on all the fun of my 30’s, but being bitter wouldn’t change the past. I also decided to leave NYC’s toxic environment and move to the west coast. I love the outdoors, so I started walking. I learned not to overdo it on days that I was feeling better to avoid a relapse. Also focusing on something other than myself is a good idea. I’ve rescued 2 dogs, and having to walk motivates me to take care of myself. I’m also constantly experimenting with different foods, supplements and medications because my body’s needs change all the time.