Chronic Fatigue Syndrome Mystery Cause and Treatment

chronic fatigue syndromeThe unsolved mystery of one of the most misunderstood and controversial illnesses, chronic fatigue syndrome (CFS), is to be probed by US health and medical bodies. Their aim is find the cause of the disease suffered by more than a million Americans; and to identify accurate diagnosis and effective treatment that will help them get well again.

The Centers for Disease Control and Prevention (CDC) verifies there is no known cause for CFS and myalgic encephalomyelitis (ME), a similar, but possibly different disease. Because of the many mysteries encompassing CFS and ME, there are also no quick or accurate ways to diagnose the conditions. Additionally, these afflictions are considered by many to be untreatable.

Chronic fatigue syndrome is typically characterized by extreme tiredness (or fatigue) that doesn’t abate after rest, and can be aggravated by either mental or physical activity. But it has a number of other symptoms as well including, ironically, an inability to sleep well. The condition also typically starts with symptoms that are similar to influenza, which is why several decades ago it was often termed “yuppie flu.”

Like fibromyalgia sufferers, CFS and ME patients are often accused of psychological issues. Many have to see multiple doctors before their condition is diagnosed, and according to research, more than 60 percent of them wait for more than a year for a positive CFS diagnosis. Furthermore, those participating in research studies report that there is a dire lack of understanding within the medical community. Many of them have experienced a total “lack of knowledge and empathy” from physicians, while others have faced “hostility.”

New Initiative to Diagnose ME and CFS

Last week the Institute of Medicine (IOM) launched an initiative to develop “clinical diagnostic criteria” for ME and CFS. This followed more than two years of work by the Department of Health and Human Sciences (HHS) following an instruction by President Obama that the HHS and National Institutes of Health (NIH) should elevate the priority of CFS, a recognized health crisis affecting more than 1 million Americans.

According to Dr. Nancy C. Lee, HHS Deputy Assistant Secretary for Health and federal officer for the CFS Advisory Committee (CFSAC), it is particularly important that their findings and recommendations reach people in the health care profession who have patients that have not yet been diagnosed. This, she said, would include both primary health care providers and specialty groups, because it was essential for them to “know about this serious condition.” It was also vital for all CFS/ME patients to have access to health care providers who were able to “at least suspect the diagnosis.”

This is a desperate situation for so many, and my hope is that this study will be a major step in improving the clinical care and lives of these patients.

Dr. Nancy C. Lee

Conditions to be studied would be ME, CFA, as well as Neuroendocrine Immune Disorder, Chronic Fatigue and Immune Dysfunction Syndrome, and others, she announced. While they might be “distinct disease entities,” there was also a possibility that these illnesses were “part of spectrum.”

Dr. Lee outlined the four primary tasks to be undertaken in the study, the first of which would focus on important signs and symptoms that would enable doctors and health care givers to diagnose ME and CFS. They would also develop criteria that would assist clinicians. The terminology used to describe ME and CFS is highly controversial, and so reassessing this would the third task, she said, adding that she agreed the title CFS is harmful to patients. Lastly, there would be “an outreach strategy” that would define the illness to health professionals nationwide.

In general, the IOM is to tackle clinical diagnostics that will overcome the long-established mystery of the disease. The NIH will look at definitions, and consider whether the current names, chronic fatigue syndrome and myalgic encephalomyelitis, need to be changed. A number of agencies that are involved with the CFSAC are co-sponsoring the venture with the HHS Office on Women’s Health. Results of the research will be revealed in 2015, including cause, and developments made in clinical care options and drug development for treatment.

Research to Solve the Mysteries of ME and CFS Launched

Participating in the first public meeting of the IOM’s new committee on January 27, President and CEO of The CFIDS Association of America, Carol Head said her organization, which funds research, was dedicated to the development of “safe and effective treatments” for ME and CFS. Using the acronym for chronic fatigue immune dysfunction syndrome (CFIDS), the organization’s mission was to ensure that these linked diseases were understood, diagnosable and genuinely treatable.

Head said the task of those involved in this new research would be hampered by the limited available research. Right now, she said, there were no “uniformly-accepted clinical diagnostic criteria” and so there was very slow progress getting to grips with the illness. Even the FDA has recognized that when it comes to ME and CFS, researchers are only just beginning to understand the core of the disease. So they needed to “go back to core” and look for signs, symptoms, and any evident decreases there may be in specific functioning of those suffering from the disease.

When there is confusion, lack of consensus and no progress, go back to core.


Earlier this month the CFIDS Association carried out a survey that involved 256 people, 88 percent of whom had been diagnosed with CFS/ME or post-infective fatigue (PIF). Most had waited “a desperately long time” for a diagnosis. They found that 12 percent had waited for ten years; 21 percent for five to ten years; 36 percent for one to five years; and only 32 percent stating it took a year or less to be diagnosed.

Most of the patients said they had been to more than four doctors in their struggle to get a diagnosis. Not only was this demoralizing, said Head, but it cost money and implied that time and quality of life had been lost. The reality was that the longer a diagnosis takes, the worse the condition becomes and the harder it is to treat.

This implies time lost, quality of life lost, demoralization and precious dollars spent.

Carol Head

CFS/ME Clinical Assessment

The CDC started its own “multi-site clinical assessment” of CFS and ME two years ago. The aim of this study is to compare CFS and ME patients to see if they are suffering from the same disease or not. New definitions for the diseases are not an objective.

Dr. Beth Unger, the scientist heading the study, said in a recent interview that they hoped to develop “diagnostic criteria” for these diseases. The mystery of “post-exertional malaise,” also known as “post-exertional neuroimmune exhaustion,” is an important symptom they hope to be able to measure. The first stage of their study involved getting data from patients that related to symptoms including fatigue, sleep patterns, pain, and general ability (or non-ability) to function. They also collected information from these participants relating to medical history, details of their illness, laboratory tests undertaken, family history, infections, immunizations and so on.

The second stage of their study was launched last November and now they are measuring “wakening cortisol response” from saliva they have collected. Blood from participants would also be used for “a small biorepository of DNA and RNA” that they hope to use to replicate findings they get from other groups. According to Dr. Unger, the methodology they were using for the study was evolving and younger patients would now be included, as would healthy people for comparison.

Once all the necessary data has been collected, Dr. Unger said the program would focus on the development of educational materials for health care workers, to help them recognize and treat chronic fatigue syndrome and ME. Ultimately once the mystery is solved, the cause and suitable treatment should be found.

By Penny Swift

Institute of Medicine IOM
Research 1st
Phoenix Rising
Phoenix Rising

36 Responses to "Chronic Fatigue Syndrome Mystery Cause and Treatment"

  1. Karen Jaime   February 12, 2014 at 3:38 pm

    Wow Penny, It seems this article has gotten many people really hot under the collar! I might as well throw in my two cents. I have been in an Alcohol recovery program for almost 5 years. An observation that has struck me as odd is that I know several women in the program that are suffering with many Auto Immune diseases such as MS, CFS, Fibromyalgia and Peripheral Neuropathy. I am wondering if a toxic metabolic syndrome from alcohol addiction or some environmental exposure can create these new conditions? I had a low emission exposure of CO from a gas fireplace insert over a 2 year period and got very ill. My Drs. first diagnosed me with the flu, vomiting, diarrhea and headaches. I experienced many of the symptoms of the diseases above as well.! I now tell my community the importance of checking your gas appliances yearly to make sure they are in good working order. The alarming thing is that I had a CO detector that never sounded off! The Drs. Told me , you have something that Dr’s just scratch their heads over”! I was tested for EVERYTHING from the shoot to the poop. I even had a bone marrow biopsy and was under the care of a hematologist/ oncologist. I saw every “ologist” on the planet, no cancer was detected . I had to be
    care-vaced to a trauma center and received six blood transfusion. The body only holds 7 units. There were no answers as to why my body was attacking itself, mainly my red cells? The Hematology Specialist started me on 100 mg. of prednisone a day. Almost enough to kill you, but it saved my life. The weaning off was just as bad. The drug was horrible and created a mild stroke. I started drinking because I was coming out of my skin with anxiety, the shakes and pounding heart, due to the medication. Alcohol calmed me down (anesthetized me) to the point of being able to tolerate the prednisone. They didn’t want to give me too much clonazapam because of becoming addicted. I was on 2-4 mg. a day and that didn’t help! This went on for two years before I discovered the leak in my home by the Gas Company. With all plethora of specialists I saw not one of them had me tested for CO poisoning! A red blood count that drops to 4 without any bleeding indicates CO! Of course I didn’t know this, I’m not a Dr. How could they all miss this?
    Back to the topic. When you are exposed to large amount of “poison” whether it be alcohol, environmental mercury, asbestos, lead, etc. or even a drug like prednisone (steroids) over a long period of time of course your body is going to eventually start to react. I really believe in doing my research now and being proactive with diagnosis and treatments, especially drugs! I believe this might be the missing link, not a mental disorder. I was extremely depressed because I was sick and no one knew what was wrong. If you have been sick for a long time with some mysterious ailment of course YOU GET DEPRESSED!!! If anyone one out there reads this, PLEASE check your environment or any toxins you may have ingested over a long period. It could be a pesticide exposure that your ultra sensitive to? Something is being overlooked that is right under their nose.
    Many blessings Karen J.

  2. John Buettner   February 9, 2014 at 10:36 am

    Please read Penny’s follow up article.

  3. justinreilly   February 9, 2014 at 10:04 am

    Dear Moderators,

    I posted three comments about four days ago. One went up immediately. Can you please post the other two. I spent a good amount of time on one of them. Thanks for your consideration.

    Justin Reilly, esq.

  4. justinreilly   February 7, 2014 at 9:36 pm

    I agree 100% with Ali Short’s excellent comment! The federal government has consistently shown it is only interested in burying patients and the science.

    • elsvh   February 8, 2014 at 7:28 am

      Yes, totally agree with Ali too!

  5. justinreilly   February 7, 2014 at 9:31 pm

    Dear Moderators,

    I posted three comments about two days ago or so. One went up immediately. Can you please post the other two. I spent a good amount of time on one of them. Thanks for your consideration.

    Justin Reilly, esq.

  6. Penny Swift   February 7, 2014 at 4:12 am

    The article is a report about what the US government is doing. It has nothing whatsoever to do with my personal opinions. It is also not for me to define terms these organizations have used, or to comment on them, or even assess them. However, given substantial information about the background and current events during the past 24 hours, I am following up with an article from “your” perspective. Watch this space!

    • elsvh   February 7, 2014 at 4:36 am

      That would be TRUE journalism Penny!

      I’m glad you picked up the information provided here by many patients and you’re willing to do something with that information.
      This would be a first … a journalist actually listening to the comments made by patients … It says a lot about you as a person.

      And we know that your personal opinion and your article aren’t the same.
      You fell into the trap of listening to what people see as “credible sources” … if only they all knew what’s really going on like we do.

      Our comments are a consequence of decades of medical and social negect and worse. We simply won’t take it anymore. Sick as we are, we are fighting this time all the way. This whole HHS-IOM-P2P process can potentially harm us like never before.
      Just like it harmed the Gulf War Veterans with GWI;

      We’re watching like hawks and fighting like lions with every ounce of energy left in us.

      A balanced, well-informed piece of journalism is all we want.
      You can read more about the facts here: “Thoughts about ME”.
      It’s a very very good starting point to fathom what’s really going on.

      Thank you for listening and taking us seriously.

    • Libby Boone   February 7, 2014 at 10:37 am

      Thank you Penny.

    • Ali Short   February 7, 2014 at 1:32 pm

      You have set yourself quite the task! You may have noticed that this is a very complicated topic. The politics are as complex as the disease itself. You will have to educate on the definition issues, the history of (US) government involvement and neglect, the science, the influence of psychiatry.

      A good place to start would be (definitions). Osler’s Web is an excellent book on the politics that surround M.E. (by Hillary Johnson). Another must-read is Authors of our own Misfortune by Angela Kennedy. This blog gives great information on the current redefinition controversy: And then there is the much criticised IOM report on GWI (

      I am sure a speak for the majority of patients when I say we would rather have no reporting than misreporting.

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