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.

FDA

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

Sources
Institute of Medicine IOM
HHS
CFIDS
Research 1st
Phoenix Rising
CDC
Phoenix Rising
NIH

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.

    Reply
  2. 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.

    Respectfully,
    Justin Reilly, esq.

    Reply
  3. 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.

    Reply
    • elsvh   February 8, 2014 at 7:28 am

      Yes, totally agree with Ali too!

      Reply
  4. 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.

    Respectfully,
    Justin Reilly, esq.

    Reply
  5. 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!

    Reply
    • 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.

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

      Thank you Penny.

      Reply
    • 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 name-us.org (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: http://thoughtsaboutme.com/. And then there is the much criticised IOM report on GWI (http://books.nap.edu/openbook.php?record_id=13539).

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

      Reply
  6. elsvh   February 7, 2014 at 2:38 am

    “Head (CAA) said the task of those involved in this new research would be hampered by the limited available research”

    If she’s talking about ME AND CFS, there are – despite huge lack of funding by governments – about 4000 articles out there.
    Not enough? Well, there is a group of researchers and clinicians who specilalize in ME and CFS and together they’ve seen and treated +50.000 patients.
    What more can she want, I ask myself.

    “Right now, she said, there were no “uniformly-accepted clinical diagnostic criteria” ”

    Strange … these same 50 researchers wrote – unprecedented – a unanimous letter to ask HHS to use of the Canadian Consensus Criteria (CCC) and aknowledge them offically.

    “Even the FDA has recognized … 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”

    What does this mean?!
    The “core” as in low Natural Killer cell counts AND function?
    The “core” as in Post Exertional Malaise (PEM) provable by a double CPET test combined with bloodworks on cytokines, lactic acid build up, MRI scans of the brain?
    The “core” as in strange lesions in the brain similar to those seen in MS patients?
    The “core” as in inflammation of the spinal cord (see autopsy report of Sophia Mirza)?
    The “core” as in the many many deaths of patients due to mainly heartfailure and cancer?
    The “core” as in the diminished life spand? Diminished by 20yrs compared to control groups?
    The “core” as in loads of viral and bacterial presence in this group of patients?

    But then she said … “look at decrease in specific functioning” … which makes me think they only want to conider patients not being able to exercise (due to mitochondrial problems and PEM, not due to unwillingness, which was proved over and over already.

    I’m under the impression the scenario for this HHS-IOM-P2P-CAA has already been written. They know which direction they’re going and we patients know it too.

    Disregarding the very very vauable research that has been done up till now, disregarding the promising research that’s going on at the moment, disregarding the researchers and clinicians in this process, is like investigating the electrics in your home without consulting an electrician. It won’t lead to anything thorough or good.

    And since so many lifes are depending on this process this is an unexeptable way of dealing with this disease with any disease in fact.

    Can you imagine this happening to cancer patients? To Alzhemer patients? To MS patients? No you can’t.

    Why does it feel we’re in a Western movie or in a movie about slaves before they were set free? They can do whatever they want and nobody is holding them accountabe because their “sales pitch” is very convincing and very reasonable to people who know next to nothing about this disease.

    Everybody is falling into their trap and sad to say, you did too Penny.

    Reply
  7. Jane Q. Citizen   February 6, 2014 at 3:34 pm

    Why is this website blocking comments from people on MECFSForums? And why is this website not allowing mention of the Petition to Stop HHS IOM Contract to Define Myalgic Encephalomyelitis, which has more than 5000 signatures? https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/

    Reply
  8. Ali Short   February 6, 2014 at 3:28 pm

    There is so much misinformation in this article I hardly know where to begin. It starts with saying the disease is controversial. I would have thought this would be a warning sign to any writer, indicating that this is not an easy topic, and that it requires careful research.

    It goes on to say that US health and medical bodies intend to find the cause of the disease, to identify accurate diagnosis and effective treatment. This is inaccurate, and I would like to know the source of this piece of misinformation. It definitely is not on the IOM website. Such a statement is also incredible, given the fact that the researchers and clinicians have only started to scratch the surface when it comes to identifying possible causes, tests and treatments, despite decades of acquired expertise and knowledge between them. But a panel of mostly non-experts will?

    The F-word! CFS, or rather M.E. is not characterized by extreme tiredness. It’s hallmark symptom is post-exertional malaise: an increase of symptoms after (any!) activity that can last for days, weeks, or even months and years. For some patients this means they cannot even go to the bathroom without paying for it.

    Fatigue is too common a symptom, and the disease involves almost all body systems: endocrine, cardiovascular, gastro-intestinal, immune, autonomic, etc. CFS is a misnomer. And severely disliked by patients. It would have been nice to mention that. CFS is a wastebasket diagnosis. It’s like calling any disease that has coughing as a symptom Chronic Cough Syndrome. Meaningless, belittling, and vague. Is it any wonder there are so many question marks surrounding this disease? The CDC is responsible for that, when they relabeled M.E. with this absurd name, opening the doors to misunderstanding, ridicule and the pernicious influence of the psychiatric lobby, and the consequent lack of interest and funding. Yet, no mention of that in the article.

    This article makes it sound as if the government is taking an active interest in this disease. And it does, only not in a constructive way. For 30 years the CDC, NIH and HHS have been very active obstructing research, misappropriating funds, obfuscating the issues, and misinforming patients, doctors and the public. Patients and their medical experts have begged the agencies to take them seriously for decades, asked for good diagnostic criteria to be adopted, and appropriate research to be funded, but their pleas have fallen on deaf ears.

    And now, when fifty world-renowned experts in this disease have agreed on the Canadian Consensus Criteria (CCC), the government officials choose to ignore them and decided that the IOM should come up with a new definition. Never mind that the IOM doesn’t have the expertise, and doesn’t know anything about the history or pitfalls when studying this complex disease. This attitude is exemplary of the way M.E. has been mishandled over the years. No one in his right mind would think it a good idea for non-experts to come up with a definition for any other disease, like diabetes, lupus, or Alzheimer’s. Moreover, the IOM has done a terrible job redefining Gulf War Illness. Is it any wonder that so many patients worldwide are very, very worried about this ‘initiative’? Again, the article fails to mention any of this.

    As for Dr. Beth Unger, the scientist heading the CDC multi-site study, she has said that it would not use two-day cardiopulmonary exercise testing (CPET) even though the research shows that it produces evidence of post-exertional malaise, metabolic dysfunction, and is one of the most promising diagnostic markers for ME/cfs. Not including this greatly diminishes any value this study could have, and it is an excellent example of how the responsible agencies intentionally choose not to do good science. Collecting “all the necessary” is not possible without this important research, and any development of educational materials is meaningless.

    We can’t count on government help to solve the mystery that is M.E. They created it. And until they finally step aside and start supporting the scientists and patients, the cause and suitable treatment will not found for a long time.

    Reply
  9. Joe Citizen   February 6, 2014 at 3:04 pm

    It appears that mine as well as comments by at least one other person are being censored. Shameful.

    Please read Ed’s comments about this attempt to silence PWME (people with ME).

    http://thoughtsaboutme.com/2014/01/24/comments-to-the-iom-by-edward-burmeister/

    Reply
  10. Keith   February 6, 2014 at 2:01 pm

    I’m sorry but as a CFS patient and advocate for 27 years I have to say this article is a mashed up piece of inaccurate information. President Obama has done nothing for CFS and ME patients. He said he would look into the situation but never did.
    There is no Illness named CFIDS. An organization that falsely represents patients and makes a lot of income for themselves off sick patients calls themselves that but they don’t represent the wants and needs of most patients.
    I could go on and on but basically the IOM contract is an attempt to bury a very serious disease and define it out of existence by the government like the IOM did with Gulf War Illness already. Most CFS experts have signed a letter supporting a definition that is already in existence continue to be used for CFS. The government and the IOM are ignoring the experts and will waste a million dollars to define CFS and ME patients into a dust bin. Oh, and only 4 million gets spent on CFS research!

    Reply
  11. BJ Johnson   February 6, 2014 at 12:25 pm

    Penny Swift needs to retract this article. Interview Dr. Richard Horowitz and then maybe you can write an article worth reading. Co-infections are so very important. After 40 years I have finally found an Infectious Disease doctor that is uncovering underlying problems that have added to all the wierd symptoms we all suffer from. She is now working to help with those. A long journey ahead. Most importantly, she was willing to listen and dig into my symptoms and not just say as most doctors do, “Oh, all your labs are fine, you are not sick!” All the while, yes I am sick, you just have not found what is wrong yet! Do your homework before writing junk!

    Reply
  12. Georgia DeFreeze   February 6, 2014 at 10:00 am

    After many years of fatigue, pain, etc, I have just been diagnosed with CFS and Fibromyalgia. My Dr’s (RA and Primary Care) have stated that there is nothing to help with the fatigue and loss of energy. I am taking Lyrica and Cymbalta, but they do not help with the malaise. What can I do besides the usual recommendation of: get plenty of sleep, break down routine into small parts, etc, etc? I’m so exhausted by this disease!

    Reply
  13. Polly   February 6, 2014 at 9:07 am

    Penny, Your paltry, insipid attempt to write about a topic, with which you apparently know nothing and didn’t attempt to learn anything, is an insulting slap in the face to those who suffer from this highly disabling and heinous illness. Read about the latest privately funded research; then reread your article and tell me it’s not antiquated. Would you like a do-over? Maybe you could add the patient’s perspective, too?

    Consider your sources. The government mouthpieces spewing their abhorrent and erroneous propaganda are the very people you turned to for “facts.” This article is misleading because you chose individuals who are heavily invested ($$$) to prolong the “mystery” aspect of this disease. You may fool some of the people . . . and perpetuate myths while you are at it, but it won’t fly with this patient community.

    .

    Reply
  14. Libby Boone   February 5, 2014 at 10:46 pm

    Penny, I hope you will take us on board. I agree with the previous comments, and it would be so helpful if you took us into account.

    Many have spoken of their anger, and if you were in our shoes, you might be angry too.

    Thank you.

    Reply
  15. John Buettner   February 5, 2014 at 10:37 pm

    Penny,

    The IoM will do to sufferers of ME/CFS the same that they did to Gulf War veterans that have been with suffering from Gulf War Illness for 20 years. The following link is to testimony made to the the Veterans’ Affairs Subcommittee on Oversight and Investigations regarding “Gulf War: What Kind of Care are Veterans Receiving 20 Years Later?” This link includes commentary by Danny, an MD who has ME.

    https://www.facebook.com/notes/danny-ze-dog/witness-testimony-of-mr-anthony-hardie-gulf-war-veteran/665905520125622

    The Gulf War Veterans deserve so much more.

    Reply
    • justinreilly   February 6, 2014 at 6:22 am

      John,

      I agree entirely with your comment! IoM has a long history of publishing egregiously inaccurate misinformation about both GWI and ME and I of course would be shocked if they don’t do it again.

      (fwiw, to quibble, I do not think Danny ZeDog is an MD; please correct me and accept by apology if I am mistaken; regardless, he is an extraordinarily intelligent man, learned and experienced in science and know more about ME than maybe a couple of dozen MDs on the planet, so maybe my attempt at a correction here is irrelevant!)

      Reply
      • John Buettner   February 6, 2014 at 11:02 am

        justinreilly,

        Yes you may be right. Danny ZeDog might not be an MD, but yes, he is a very intelligent man.

        Penny,

        I hope you take the time to read Anthony Hardie’s Congressional testimony. It will surely open your eyes. Afterwards I hope you take it a step further and speak to Mr. Hardie. The Gulf War veterans harmed by the actions of the IOM desperately need a voice.

        Reply
  16. John Buettner   February 5, 2014 at 10:18 pm

    Penny,

    Who did you interview to get this story? It’s riddled with speculations presented as fact and complete fallacies. E.g.: when did Obama “elevate the priority of CFS”? If you look, the closest thing you will find is a letter from Obama that summarizes the research that has been done recently and what is currently ongoing. All there is is talk-around and political posturing, but nowhere is there a commitment to elevate anything.

    This article seriously detracts from your credibility.

    Here is a link to “the letter”:
    http://phoenixrising.me/wp-content/uploads/President-Obama-Letter-on-CFS.pdf

    Reply
  17. lolly mcdermott   February 5, 2014 at 10:10 pm

    Penny, the new definition will be “bodily distress syndrome” or “chronic multisystem illness” (the new name for Gulf War Syndrome). The treatments will be antidepressants, cognitive behavioral therapy, and graded exercise therapy. It is disingenuous of you to report otherwise. The tragedy is that Chronic Fatigue Syndrome in the US was used to define a group of patients who suffer from severe acute-onset immune dysfunction, including quantifiable bacterial and viral infections. There are currently no FDA-approved treatments for the viruses common to CFS; chronic Epstein-Barr and HHV-6. The IOM’s definition will ensure that these patients do not get appropriate care, and will instead be forced into therapies that are detrimental to their health. You are only supporting those entities that wish to disappear this illness for good.

    Reply
  18. Ess   February 5, 2014 at 7:50 pm

    On the surface –my, doesn’t this sound like all these efforts ‘line up’ in such a genuine help for ME/CFS sufferers. HOWEVER, this is a glazed-over surface coverage purporting the latter. The IOM contract on behalf of the HHS is a political sham and set-up and is NOT for the good of the patients–the IOM committee have stringent parameters ‘set up’ for them to REdefine ME/CFS–therefore, the redefinition of ME/CFS will FIT into the predeterminined REdefinition WANTED and CRAFTED by the HHS–for insurance and bugetary purposes. The LIES and POLITICS and COVER-UPS that abound over the past 30 years of HIDING the truth of ME/CFS is a GLOBAL ATROCITY — DISabling and DEStroying the lives of previously active contributing citizens and members of society–including the world’s children–making it even MORE DISGRACEFUL. To date there is a count of 17 million ME/CFS sufferers globally–and spreading/counting. Trust me when we say–YOU do NOT want to be landed with this horrid life-stealing illness of ME/CFS.

    The DEFINITION for ME/CFS is already known–and 50 of the world’s leading ME/CFS Experts and Researchers have written to HHS telling them so and stating the need to adopt the CCC–and abandon the UNnecssary and potentially harmful IOM contract. HOWEVER, HHS has completely ignored the information by the experts.

    Keep asking questions as to WHY . . . ??!!!!!

    Indeed, the ME/CFS Experts and Researchers are nigh on the cusp of biomarkers for ME/CFS–YET, knowing this, and at the same time–HHS SECRETLY slams in this IOM contract to go back to OLD OUTDATED DOCUMENTED MISleading MISinformation to REdefine ME/CFS.

    There are many many many questions to be asked as to what is and has been going on BEHIND the SCENES all these years re ME/CFS. I daresay, this all borders on crimes against humanity!!!

    I do NOT believe that ‘any of this’ is what President Obama had in mind in looking into ME/CFS; just as I am sure that he has NO idea as to the truth of the ‘back-door-politics’ debacle surrounding ME/CFS.

    We need the TRUTH and JUSTICE for p/w ME/CFS—NOW!!! Thirty years of DECEPTION needs to END!!! We are fighting for our very lives and the lives of YOU and YOUR/OUR children NOW and in generations to come . . .

    Reply
  19. kristin   February 5, 2014 at 7:43 pm

    This kind of reporting just irrates me. I was diagnosed with CFS & Epstein Barr syndrome decades ago. Half of my Drs. agreed other half said no such thing. But what about treatment. So many patients end up with fibryamalgia, depressive disorder and other diagnosis related to it. Myself included. So many tests & medication trials & still no definitive answer or treatment. Nothing new.

    Reply
  20. Paul Watton   February 5, 2014 at 7:41 pm

    As a long-term ME sufferer I would normally welcome an article such as this one, but unfortunately it is so ill-informed and littered with inaccuracies that it is actually unhelpful.
    There is much more that is known about this illness than your article would have us believe. Please do your homework properly before parroting the propaganda put out by the vested interest groups such as the CAA, CDC, HHS and others. There are a multitude of biomarkers which researchers are in the process of refining and many treatments which can help to ease the suffering of patients, but which aren’t yet being made available to cash strapped victims.
    There is already a workable case definition (the Canadian Consensus Criteria -which could be further refined), without the need for reinventing the wheel. The IoM contract is thus a waste of time and money and is not what the Chronic Fatigue Syndrome Advisory Committee recommended should be done.
    Please look beyond the nonsense peddled by those who’s interests are served by perpetuating the status quo,. Talk to the long-suffering patients. Many of us know far more than the medical profession and are fully well aware that we are being sold down the river by false advocates who purport to represent us. They don’t.

    Reply
  21. Justice 4 ME   February 5, 2014 at 7:08 pm

    M.E. expert Dr. Enlander’s comments to the IOM read by Jay Spero:

    Dr. Enlander’s Comments to the IOM January 2014

    I was honored and pleased to have been asked to sign what has become known as the ‘Experts’ Letter,’ where several dozen colleagues have expressed opposition to possibly altering or redefining the criteria of M.E. & C.F.S. by virtue of the pending IOM contract. If it was the case that there was opposition to the existing Canadian Consensus Criteria, then open discussion about these criteria would be more useful than closed door redefinition by a panel where the majority are not known to be familiar with the disease, Myalgic Encephalomyelitis.

    At present, the Canadian Consensus Criteria are used by a majority of experts who diagnose and treat this disease; they adhere to the concepts defined by Dr. Melvin Ramsay, who helped pioneer research in this disease, in contemporary clinical settings. Were discussion and debate even necessary, one million dollars could still have been saved–a not insignificant percentage of NIH research funding dollars in this area. Given the paucity of funds allowed for research and study of what we know as Chronic Fatigue Syndrome, it seems, with all due respect, to be a shameful waste of money.

    Open discussion on the IOM method of approach has not been made available; we can only hold out hope that the result is closer to one of the more strictly defined criteria. However, given all we have seen recently, marvelously chronicled by several patient-bloggers (notably, Jeannette Burmeister, Jen Spotila, and Erica Verrillo), it seems inevitable that any preference given to the “Evidence Base,” may produce a set of loose criteria. In this area, where the ‘evidence’ has long been grossly distorted, and to date has produced a flawed, inaccurate model of this very serious physical disease, such criteria may well describe other conditions or disease models that are, simply put, not the disease described by Ramsay.

    A group of us are forming the “Academy of M.E. & C.F.S. Physicians,” composed of experienced clinicians and researchers familiar with the disease, M.E., and related conditions. The Academy will be an Independent resource for government, corporate and private groups to derive information relating to the latest research, diagnostic methods and treatment approaches. Training of young physicians in this area will be of prime importance.

    Dictatorial direction will continue to do a grave disservice to a long-suffering patient community. My patients deserve better, as does anyone suffering from this horrible disease, and I must register my protest at this sadly unnecessary contract.

    Derek Enlander, M.D.
    New York M.E. and C.F.S. Center
    860 Fifth Avenue, New York 10065
    (212) 794-2000

    Reply
  22. Justice for ME   February 5, 2014 at 6:53 pm

    Penny,

    You interviewed the wrong people for this article.
    And
    you didn’t do your research.

    You need to withdraw this article otherwise you will be just as non-credible as
    the as the people where you got the information.

    Even the National Enquirer does a better job because they got sued at one time.

    Many angry patients will be posting here as soon as they read your article.

    Reply
  23. Kathryn Stephens   February 5, 2014 at 6:05 pm

    Penny, where did you get this statement:

    “Results of the research will be revealed in 2015, including cause, and developments made in clinical care options and drug development for treatment.”

    Reply
    • John Buettner   February 6, 2014 at 11:40 am

      Yes, Penny, where did you get this information?

      I ask because I have not seen this in any publicly available documents which leads me to believe that you are party to information that is being withheld from public scrutiny.

      Reply
  24. Penny Swift   February 5, 2014 at 1:43 pm

    I believe that they are considering it, and at least some of the parties appear to be accepting this.

    Reply
    • Kathryn Stephens   February 6, 2014 at 6:23 pm

      “You believe”? Is this factual reporting? What parties? Give thorough answers, please. Thank you.

      Reply
  25. Phyllis Griffiths   February 5, 2014 at 12:49 pm

    If they chose to accept the well known and globally accepted “Canadian Consensus” concerning the diagnostic and treatment criteria of ME – Myalgic Encephalomyelitis – instead of deciding that they have to start from scratch and do it all over again then maybe this would be a positive measure. Instead it looks like just another cover up attempt. The people who are suffering and dying from this complex and well documented disorder deserve better.

    Reply

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