New Journal named "Fatigue"

Discussion in 'Fibromyalgia Main Forum' started by Khalyal, May 15, 2009.

  1. Khalyal

    Khalyal New Member

    May 12 was ME/CFS International Awareness Day. Many of us participated in efforts to educate our loved ones, the medical community, and ourselves about our disease, Chronic Fatigue Syndrome. One of the major positions of the cause was to promote the disease as the neurological illness that it is, after over 20 years of stigmatization because of that one word…Fatigue.

    In the midst of this day of campaigning for fair treatment and, for many, a fair name, the following announcement was made across cyberspace:

    “A new Journal FATIGUE will debut early 2010.
    The Editor is Derek Enlander MD, a physician who is
    on the faculty of Mount Sinai Medical School in New
    York. He is active in the treatment of CFS/ME,
    Lyme's Disease and Fibromyalgia

    The Editorial board includes the leading physicians
    and researchers in CFS/ME, Lyme's Disease, and

    The CFS/ME researchers include in alphabetical order:

    Dharam Ablashi , USA,
    Paul Cheney, USA,
    Kenny de Meirleir, Belgium,
    Derek Enlander, USA .
    Jonathan Kerr, UK ,
    Charles Shepherd, UK”

    Reaction to the name of the journal, “Fatigue”, was outrage in many sectors of the CFS community. The history of the word “fatigue” in this huge population of desperately ill people carries connotations far above and beyond the word itself.

    When Drs. Dan Peterson and Paul Cheney experienced the outbreak of devastating illness amongst their patients in Incline Village…the very outbreak that prompted the CDC’s involvement, fatigue was one of the many symptoms that patients complained of, but certainly not the major complaint. What people were suffering more closely resembled a neurological partial paralysis rather than fatigue. But when Straus’ pet chronic EBV theories were dashed by the Tahoe study results, the name Chronic Fatigue Syndrome was slapped onto the cohort as a supposed “working name” until the etiology of the disease could actually be determined.

    Since that time, the CDC has driven the disease into the psychological sector, using the word “fatigue” as its wedge. Chronic Fatigue Syndrome has since become a catchall category, and described as a somatoform disorder, an “Allostatic Stress Load” problem, an inability to display proper sickness behavior, and a socio-economic phenomenon.

    When the announcement regarding the new journal called “Fatigue” was made on the very day that we set aside to promote awareness and to dispel the myths surrounding Chronic Fatigue Syndrome, reaction among the community was immediate and angry. It felt like a slap in the face.

    One poster on a research message board described her anger as succinctly as I’ve seen. She noted that we might as well take Myalgic Encephalomyelitis and put it on a plate marked F48.0 (The World Health Organization’s mental health/somatoform disorders category) and hand it over immediately to Wessely, White, Sharpe, Creed, Chalder, et al. She signed off “Blind with anger”.

    I found myself spitting angry as well. There are people on that editorial board who should absolutely know better than to put their names to anything labeled “Fatigue”, a word that is so blatantly caustic, so vile to an entire community.

    In response to the internet anger, Dr. Derek Enlander put the following message on the internet on May 14th:

    “The Journal FATIGUE is not ONLY pointed to ME, CFS, CFIDS but to Post Viral Fatigue, Post Polio Fatigue, Lyme's Disease, Multiple Sclerosis, Erlichia, Babessiosis,
    rickettsial disease and other illnesses where fatigue is present.

    "In making a diagnosis all of these must be considered.

    "If we called the journal M.E. then the CFS group would complain, if we called it CFIDS the immunologists would complain, these politics are mind consuming.

    "So relax and read a journal that bridges Fatigue in various disease states, we all will learn.

    "The Editorial board includes some of the best minds who believe that ME/CFS/CFIDS is a physical disease, a matter of prime importance that you should focus on, at a time when the BMJ, New Scientist, Lancet and other journals proclaim the psychobabble theory.

    "David Bell MD a preeminent physician and researcher in CFS/ ME and Chairman of a US Government CFS Committee has joined the editorial committee of the new journal FATIGUE

    "Derek Enlander M.D., M.R.C.S., L.R.C.P.”

    Following this announcement, a post was made (on an advocacy board) by another somewhat prominent ME advocate, indicating that this person (the advocate) was ashamed of the ME/CFS community for expressing such outrage at doctors who have dedicated their lives to seeking solutions for this unbearable illness, and that we should overlook the name and enjoy the publication.

    Perhaps. But I cannot help but think that over the 20 something year history of CFS, there have been too many times already that we have been told “it’s just a name”, or to “relax, it’s no big deal”, and we have done so, only to be gently herded and promptly allocated to the mental illness dustbin. What amazes me to the point of galvanized anger, is that the doctors on the board of this journal KNOW that.

    And, I am not buying into Dr. Endlander’s reasoning for naming the Journal “Fatigue”.
    Not one of the diseases mentioned, not one of the sufferers of ANY of these diseases, appreciates the use of the word “fatigue” as a category for his or her illness. Across the board, the “fatigue” label is one that all of us have been able to unify against, at least in theory if not in action.

    One last point. Naming this journal "Fatigue" would be a critical, if not mortal, blow to the FAIR NAME movement. With such respected experts attaching their names to the word "Fatigue", any chance of divorcing ourselves from the stigma that a 20-plus year association with the word "Fatigue" has caused us, will evaporate.
    [This Message was Edited on 05/16/2009]
  2. spacee

    spacee Member

    And have watched the push for a new name fail over and over and over. And over.

    Perhaps, just perhaps, since it addresses all these illnesses, someone can come up with a reason.
    Can only hope.

    Cheney has been a against the word fatigue stating that fatigue was a symptom in many illnesses and then listed what was the "real" issue of our illness. My brain is so fogged right now, can't remember what the list was.

    I, for one, will give it a chance.

    Thanks for posting about this journal.

  3. Pippi1313

    Pippi1313 New Member

    When are these morons gonna realize that WORDS MEAN THINGS. They convey an image & an attitude. Geez! This is akin to referring to a tumor as a boo-boo!

    It's obvious to me... This is exactly how they want society to view CFS patients!!!

    (Rolling my eyes & saying "DUH"!!!)
  4. TeaBisqit

    TeaBisqit Member

    Can you imagine if during the civil rights movement, someone had told all of black america and the world that they were going to have a journal named the N word? After these people fought and fought for basic human rights and then someone comes along and says, we understand your suffering and we are giving you this journal named......N. Seriously, that's how I feel about this.

    We have struggled and suffered and fought for a name change. Anything other than Fatigue. It doesn't have to be fully accurate. It just has to give us the dignity and respect we deserve. At least the term Myalgic Encephalomyelitis sounds more real and respectable. People don't have to understand it or even really be able to pronounce it. They would at least take it seriously. We wouldn't have everyone and their greatgrandmother's all claiming they get "tired" too. By not divorcing us from the Fatigue name, they are deliberately keeping us in the dark ages. And they are deliberately perpetuating the horrible misconception that this disease is just a disease of being tired. It sets us right back about twenty five years or so. And it keeps us there.
  5. LindaJones

    LindaJones New Member

    thanks for posting
    I think this sounds very good
    I think these medical conditions need to be paid attention to by physicians who are interested in them and are educated about them
  6. cfsgeorge

    cfsgeorge New Member

    I'm surprised that the contributing authors like cheney would accept this? Not much credibility to both the medical communtiy, public, nor the patients IMO. You thought the name "chronic fatigue syndrome journal" was bad, but this one takes the TMZ cake. They should have named it EXHAUSTION if they want to go that route although i much prefer "journal of ME" or "neuroimmunoendrocrine" who is the idiot that named it? the editor?

    Hopefully, they don't rename the fibromyalgia journal to "PAIN"? lol.
  7. luckyman

    luckyman New Member

    Why not just rename the fibromyalgia journal as "FEELINGS"? lol.
  8. cfsgeorge

    cfsgeorge New Member

    Now that the journal of chronic fatigue syndrome is no more, they decide to start another CFS journal called "Fatigue". Seriously, how lame is this? Let's find out the genius that gave the go ahead for this journal name.

    What would happen if the journal of fibromyalgia ever folded? >>>>>"Feelings" hahah LOL!
  9. luckyman

    luckyman New Member

    A simple change that would still maintain the original name, but not have negative connotations could be something like "Beyond Fatigue". It would still maintain the identity of the magazine, yet is not condescending and does not trivialize any of the diseases. Anyone want to start a letter writing campaign? Anyone have an address?
    [This Message was Edited on 05/18/2009]
  10. skeptik2

    skeptik2 Member

    (Sound of cash register)

    They know this name will get millions of subscribers; maybe even doctors.


    Demeaning, demeaning, demeaning.

    If they say the "fatigue" of CFS is caused by a life-changing, life-threatening, possibly cancer-causing illness, I may recant.

  11. aftermath

    aftermath New Member

    Fatigue is one of the #1 complaints of HEALTHY people when they visit a physician.

    Thus, when they hear about this illness, they think we are just a bunch of whiners and cry babies.

    They don't know what it's like to take 3 months off, sleep 12 hours every day and still wake exhausted.

    Absolutely STUPID!
  12. luckyman

    luckyman New Member

    It is insane, and it's time to help make a change. Give me an address and I'll be glad to write. Phone number that we can call? Who publishes this magazine?
  13. Khalyal

    Khalyal New Member

    Is in charge of this project. A simple google search will get you to his website and contact information.

    I would also recommend letting your feelings known to the CFIDS Association, as they don't seem to understand that this is an advocacy point.

  14. Khalyal

    Khalyal New Member

    “The term ‘fatigue’ and ‘chronic fatigue’ never existed in this entity until it was put into [the name] in 1988…The whole concept of fatigue has warped our understanding of this illness.”
    Byron Hyde, M.D., The Nightingale Research Foundation, Ottawa, Canada

    "A very inappropriate term for what patients experience. It’s not really fatigue at all, which is defined as a normal recovery state from exertion and that is precisely what does NOT happen in this illness. They may say they’re fatigued, but what’s really restricting their activity may be pain, tremulousness or weakness - a sense that they are on the verge of collapse. That is not fatigue as we commonly think of it."
    Dr. David Bell, 1995

    “This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterization.”
    Laura Hillenbrand, Bestselling author of Seabiscuit

    “Patients are united in their dislike of the term ‘fatigue’.”
    Thomas Hennessy, Jr., RESCIND, Inc.

    "The disabling weakness and exhaustion a patient with ME / ICD-CFS experiences is so profound that “fatigue ” is probably an insult."
    Cuozzo J., Chronic Fatigue, JAMA 1989:261:5:697

    "One thing that we all seem to agree on is that the word "fatigue " needs to be removed from the name of the illness we call "chronic fatigue syndrome." Just tell somebody that you have chronic fatigue syndrome, and the first retort is, "Oh I have that too, I'm just so tired."

    The term 'chronic fatigue', while descriptive of the most common symptom of this illness is so vague and banal that it seems derisive and derogatory. The fatigue of this illness is so much more than 'just tiredness '.

    In fact there is no word in the English lexicon that describes the lack of stamina, the paucity of energy, the absolute malaise and turpitude that accompanies this illness."
    Dr. Charles Lapp, board member of the American Association of Chronic Fatigue syndrome (AACFS) and member of a federal HHS CFS advisory committee: As cited in: Jill McLaughlin , Information on Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS)

    "This has led to the trivialization of the illness as little more than a manageable, unexplained fatigue state (rather than the prominent more specific—and debilitating—neurological features of ME, and the misperception that it may be treatable by little more than counseling, OTC medications, antidepressants and lifestyle changes."
    -- Jill McLaughlin, Information on Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) --
  15. outofstep

    outofstep Member

    Excellent point.

    It seems to me that there is a split in the CFS research community between viral-induced CFS, the kind that appeared in the 80s, and "Chronic Fatigue" which is a mixed bag. This journal will obviously be for the latter. I can easily see the CDC's research fitting nicely into this journal. But I don't see how any of the WP's would-or Montoya's/Lerner's/ Chia's. I predict that as soon as the WP or any of the viral researchers come(s) up with anything substantive that they will change the name to differentiate it from all of these other illnesses.

    ps-this is what the CFIDS Association had to say about it-and they don't sound happy:

    "The CFIDS Association of America at 9:26pm May 17
    There are apparently two new journals called "Fatigue" that are being created with different editorial boards. The CFIDS Association is not involved with either effort and encourages its funded investigators to publish in high impact peer reviewed journals with wide distribution so that data about the biological abnormalities found in CFS patients reach the largest scientific/clinical audience possible."

    "The CFIDS Association of America at 12:45pm May 18
    A journal (or worse, two) called "Fatigue" intended as a primary home for studies about CFS will not advance understanding of the complexity and severity of CFS as a multifactorial condition that affects every body system. The two editorial boards forming may have different intentions (such as exploring the symptom of fatigue as it manifests in many medical conditions like MS and cancer), but neither has consulted with the CFIDS Association about its specific plans."
    [This Message was Edited on 05/19/2009]
  16. cfsgeorge

    cfsgeorge New Member

    No wonder why the name change never happened. It's obvious that the doctors and researchers in this field could care less about the name. It wouldn't benefit them in any way. It would only appease CFS patients to get a proper name to a devastating disease.
  17. TeaBisqit

    TeaBisqit Member

    Fatigue is a completely inaccurate word. What I have today is total energy cell depletion. And there is no place to pull the energy from. This is the hardest thing to explain to people who don't have our illness. They think we can still "push it". There is nothing to push from. There is no energy reserve. I usually use the car out of gas analogy on them, but even then, they ignore me. If a car is out of gas, you can't make it go. It is going to sit there until you put some gas back into it. And that is how our cells are. There is no energy in them. Except we can't go jog over to a gas station and fill up a spare tank and make energy. It doesn't work. We have to wait until our body somehow puts a small amount back in again.

    I spend my days rationing my energy. I always have to weigh what I can do in a day. I have to make decisions on tiny things people take for granted. Every little thing, I have to look at and ask myself if I have the energy to do it because if I do that, then I can't do something else. That goes way beyond the term fatigue.

    People hear the word fatigue and they think of getting a good night's sleep and then the next day they are fine. They have no clue what it's like to feel like you never had sleep.
  18. outofstep

    outofstep Member

    I hope that you write something for the CFSAC meeting-or just send them this post. Your analogy is great.

  19. Pansygirl

    Pansygirl New Member

    You put into words what I have been thinking. You explain it much better than I would have , my darn fibro mind is so confused today.

    I need to remember the car out of gas analogy .

    I'm not sure what they should change it to but I do think possibly
    they should give those of us who have this a chance to pick the title
    and then I think we would be getting somewhere.

  20. skeptik2

    skeptik2 Member

    I don't want to pick the name for our disease: I want research to find it!

    The CDC does not do research; they throw garbage into their minds, and expel the same thing. They will never be the ones to find the proper name; the W.H.O. already has...Myalgic Encephalomyelitis!

    All those involved in these "Fatigue" journals had better get a grip; many of them make money off of patients with real M.E., and their livelihoods could be cut off real fast.

    Let's hope they "see the light"!