A self-management study for Chronic Fatigue Syndrome, or CFS, that is receiving a grant of approximately $600,000 from the National Institute of Health is lead by Dr. Fred Friedberg, who is a research associate professor in the Applied Behavioral Medicine Research Institute at Stony Brook University.
The project, titled “Efficacy of Home-Based Self-Management for Chronic Fatigue”, focuses on establishing a cost effective program in which patients with CFS can apply individualized, ability-based treatments to help themselves feel and function better.
Chronic Fatigue Syndrome is a medically unexplained illness. Dr. Friedberg said in an interview that this means “We’re not really sure what causes it, and there is no definitive test for it.” However, there is consensus about several of its symptoms, such as six months of persistent fatigue not alleviated by sleep or exercise, headaches, flu-like symptoms and post-exertional malaise.
According to Dr. Friedberg this last symptom, meaning prolonged and/or delayed exhaustion after performing an activity, has been under-emphasized in the past, and may, in fact, be one of the illness’ defining characteristics.
Besides the substantial physical limitations caused by the illness, which may lead to the inability to hold a job, another frustration of patients with CFS is the skepticism of family, friends and doctors alike. “People are often treated dismissively by doctors, and so there is little help available to them.”
Dr. Friedberg clarifies that patients suffering from these symptoms often do not “look sick.” They may have their lab tests come back normal, resulting in doctors telling them that they are healthy. “If the doctor says you’re OK, everyone believes that you’re OK.”
Additionally, patients with CFS are often told by others that a simple change in diet, or attitude will reverse the symptoms. These types of advice are rarely helpful.
The tendency to disbelieve or blame the patient for his or her suffering is one of the reasons why Dr. Friedberg’s study is so important now. The fact that the program is purely self-management sets it apart from other related studies. Based on a recent survey of CFS patients, it was clear that a large number desired this kind of self-applicable treatment.
“People who are home-bound usually have their own schedule,” Dr. Friedberg noted, “They don’t want to try something that may flare their symptoms.”
This is where the convenience of a home-based treatment is helpful.
Some of the treatments in the program are “active relaxation, to help with managing stress and symptom relief, pacing activities to keep patients from doing too much or too little, and low-level activities, which may include leisurely walks of 30 seconds to five minutes.”
The idea is to begin at a level that will not exacerbate the symptoms and gradually move on to higher levels of activity. Dr. Friedberg believes that this process the will help “to develop a tolerance of activity.”
If the the program is successful, he hopes to make the treatment more available to doctors and insurance companies, who might cover the program.
Dr. Friedberg welcomes anybody who wishes to contact him about his study; he can be reached at 631-632-8252.
Marcela Maxfield
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Dr. Fred Friedberg sounds very well intentioned and in tune with some of the problems those of us with ME/CFS have faced over the last 30 plus years. I’m sure it would be helpful to new patients to have guidance on how to live with this debilitating illness beyond what patients like myself (I’ve have been sick for 25 years) share with them.
The implication of Dr. Friedberg’s comments on developing a “tolerance of activity” addresses not the disease but only the deconditioning that can be a result of inactivity. In my opinion, the best way to address the deconditioning is to cure the patient of the disease in the first place.
I’m sorry, Dr. Friedberg, but you may hear from other sufferers that your “tolerance of activity” sounds like the idea from the UK of “graded exercise” which has been roundly rejected by patients who have tried it. Personally, I have tried graded exercise many times including under the supervision of physical therapists to no avail. (It may work for people with normal fatigue or depression or deconditioning for other reasons who may have been grouped in our cohort by mistake.) But it doesn’t work for those of us with ME/CFS.
Please don’t be put off by frustrated angry patients if this is brought up to you. Please see behind these messages the pain and suffering of people like me who’ve lost our lives to an illness that was ridiculed and ignored. Hopefully some of the patients you work with who actually have ME/CFS will inspire you to be a desperately needed advocate for finding a diagnostic test, treatment and a cure for the children and young people who are being cut down by this illness today.
It’s a cruel irony that we can’t Act Up like AIDS advocates did because we are too exhausted and ill to get out of bed! Please help us!
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Ester,
I couldn’t have said it better! I would only add that sometimes I want to scream but guess what… I’m too tired to do that. (I’ve been sick for 10 years)
I know first hand of how people look an treat you.. becoming ill in 1990 with three small children was really hard… Always sick, unable to function was the least of the words to say…
But today I still have CFIDS, but am able to do some and enjoy my grandchildren after adding Seaweed in a bottle… LIMU has nutrient Fucoidan with over 900 research studies on pubmed.gov; in it are Fucose with over 9000 studies and sulfated polysaccarides with over 5000; so people suffering with many conditions are getting help toward a better life with a food without side effects and healing propertities to help the whole body! http://thelimucompany.com/products has more info and fucoidan facts right on the web… I will always have this condition an some others, but have a part of life back I never expected with my grandchildren..
As a twenty-five year sufferer of CFS I can tell you the only way you will get any relief from this horrible illness is to start treating it like an autoimmune illness like lupus, which is what CFS is; an immune system in overdrive. Calm the immune system with medications that suppress the immune response and the symptoms of the illness will lessen. Exercise will only exacerbate the symptoms of CFS because exercise stimulates the immune response, which is exactly what you don’t want to do to a CFS sufferer.
I look at CFS as an autoimmune/neuroimmune disease. I try to explain to people that I am not sick in the conventional way that people think of illness. That my body is actually over-performing which can make you feel just as bad as one that is under-performing.
Is it an infection or a reaction? Is it is an infection that your body can’t defeat and you become weak and frail, or is your body over-reacting to everything; sending out an immune response that is too strong causing inflammation, irritable bowel, pain, flu-like symptoms etc.? A strong immune response can make you feel just as bad as a weak immune response; they are totally opposite problems, but produce the same symptoms. People who are experiencing an over-response of the immune system feel just as sick (eg autoimmune diseases, allergies/anaphylaxis), but don’t look as sick because their problem is not caused by a suppressed, poor-functioning immune system (eg cancer, diabetes etc), but one that is performing too well. In a ironic kind of way, people with CFS are actually too healthy.
May I draw this Drs attention to the UKs waste of moneys in this field – the Fine & PACE trials. The latter had at best a modest effect on some of those well enough to participate. The former on hou sebound patients found:
” For patients with CFS/ME in primary care, pragmatic rehabilitation delivered by trained nurse therapists improves fatigue in the short term compared with unconstrained GP treatment as usual, but the effect is small and not statistically significant at one year follow-up”
It’s nothing new what he proposes, certainly not needed and there’s already an abundance of literature for patients on this.
What patients don’t have is effective treatment. What patients with this serious debilitating disease do need is biomedical research. Quit wasting scarce resources. NIH get serious. How about looking at the new possibly groundbreaking Norwegian research & funding urgently needed clinical trials with rituximab.
The Light Gene Expression Studies demonstates that however similar the fatigue and pain may look in CFS, FM, depression and healthy controls, something very different is going on beneath the surface in CFS patients. Exercise reduced fatigue and pain levels in healthy controls, those suffering from depression and FM patients, but exercise had an entirely different effect on ME/CFS patients. This suggested that FM and depression, for all its surface similarities to ME/CFS, is at least in part, a very different disorder.
http://forums.phoenixrising.me/content.php?446-Light-on-ME-CFS-I-Bad-Reception-A-Key-to-ME-CFS-Uncovered-The-Light-Gene-Expression-Studies
I was diagnosed in 4/1994 in Kansas City Missouri, by Dr. Joseph Brewer, who is now an international specialist in the field of CFS. He is always on top of the newest research, for example, the now seen role of the Mitochondria.
Who else out there is working on this newest aspect???????
~Peace~
This grant can better spend on real biomedical research. I have ME and this kind of therapie is not effective.
Always, go at your own pace and not at the pace someone else considers normal. Doing what others consider normal may have contributed to your development of CFS; leaving you depleted. We were not all meant to be long distance runners and there have always been people in the world that (biologically) have had to sit-back in order to re-charge their batteries; something that is not understood by the 70% of extroverts who make up most of this fact-paced world we live in today. I think we should make them all sit still and meditate and no talking allowed for about a week or two. I wonder how well the extroverts of the world would respond to this treatment?
The main problem is nobody is directly dying from CFS. There are definitely many people who do end up dying from something else later on, but not right away. When AIDS came about, the fact that so may were dying and the thought that this virus could wipe out the population prompted millions and millions of dollars that was donated. An intense research project all over the world started and with in 5 to 10 years, they figured out how to combat the virus. Now since we CFS sufferers do not die right away and look OK from the outside, it is not a major priority. I myself believe that what ever caused my CFS also disrupted my blood brain barrier which in turn gives me extreme issues with my brain. I whole heartedly believe that if I do not figure out how to stop this disruption and how to kill off what ever is causing my CFS, I will eventually end up with a named disease like MS, Alzheimers, etc. Then ultimately I will die from that disease. So if the doctors and researchers that are out there can see that CFS will ultimately lead to increased risk of death from other diseases, then they might understand that this “syndrome” should be regarded as high as AIDS did when it came about. I agree that this money should not be used to show me how to deal with my symptoms but instead how to stop them. Someone out there has to talk to us, the CFS sufferers and see what we want. That study he did saying that this is what we wanted had to be bogus because I never heard any of us say we don’t want our lives back the way they were before we got sick.
Michael: You are right when you say many people with CFS do end up dying from something else, but it is ultimately CFS that caused their deaths. I have had two friends die who had CFS, one from a sudden unexplained heart attack at the age of forty, no underlying causes, probably caused by an inflammatory response from her own immune system and another who could no longer take the horror of this illness and she took her own life at the age of forty-three. It’s so sad that we have all been ignored for so long!
Perhaps it would help if more people, especially medical doctors and researchers, were made aware of the fact that people with ME/CFS are much more disabled than people with AIDS for which there is treatment. In 2009, Dr. Nancy Klimas, a clinician and researcher at the University of Miami, was quoted in the New York Times. Half of her patients have AIDS and the other half have ME/CFS. To paraphrase, she said that she would rather have AIDS than ME/CFS because her ME/CFS are much sicker than her AIDS patients. It was a shocking thing to say but hasn’t received enough coverage. It would be helpful if we all pass this opinion on so more people become aware of how debilitated we are. There is more than one kind of death, and our “living deaths” often take our families down with us.