1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
Discuss the article on the Forums.

Fatigue Journal Take 2

Discussion in 'Action Alerts and Advocacy' started by Dx Revision Watch, Jun 2, 2012.

  1. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,787
    Likes:
    487
    UK
    As I asked in May 2009, when Dr Enlander announced his concept for a Journal called "Fatigue", "Where was the consultation?"

    I was approached a few days ago by the organization and asked for my support and that any ideas and suggestions I might have to explain to patients and advocates how this new journal has the potential to advance the cause of CFS/ME would be welcomed.

    My position is that I cannot support the concept for this journal.


    [My highlighting]

    Journal website links:

    http://www.tandf.co.uk/journals/journal.asp?issn=2164-1846&linktype=1

    http://www.tandf.co.uk/journals/journal.asp?issn=2164-1846&linktype=44

    http://www.tandf.co.uk/journals/authors/rftg-article-types.pdf


    ---------------------------------------------------

    http://iacfsme.org/Portals/0/pdf/IACFSMEJournal_Letter_to_Membership_final.pdf

    New IACFS/ME Fatigue Journal

    Dear Members and Colleagues,

    On behalf of the board of directors of the International Association
    for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME), I
    have signed a contract with a major academic publisher
    (Routledge/Taylor and Frances) to launch a new subscription-based peer
    review journal titled: Fatigue: Biomedicine, Health and Behavior. This
    will be a quarterly publication with the inaugural issue scheduled for
    release in January, 2013. There are no publication fees for authors.

    CFS/ME and the New Journal

    The mission of the IACFS/ME is to promote, stimulate and coordinate
    the exchange of ideas related to CFS, ME, and fibromyalgia (FM)
    research, patient care and treatment. The board of directors believes
    that these challenging medical conditions will benefit from a journal
    that, while continuing to support research on CFS/ME and FM, also
    encourages thinking outside the box of a particular disease or
    condition.

    In support of this idea, major advances in biomedicine have more often
    evolved from broad cross-disciplinary collaborations in comparison to
    the efforts of a single research laboratory. One example: large scale
    collaborations produced the central sensitization model of pain in FM
    and other pain conditions -- which has led to new, more effective
    medications for pain.

    Consistent with this multidisciplinary approach, our new journal
    welcomes all fatigue-related research and clinical approaches to the
    treatment of this often debilitating symptom. Scientific papers on all
    aspects of CFS/ME are particularly encouraged and will be published in
    this new journal. We view side-by-side articles on CFS/ME and other
    fatiguing illnesses as facilitating comparisons and collaborative
    discussions that could generate innovative thinking and new directions
    in research.

    In addition to collaborations, the journal can better legitimize
    CFS/ME by demonstrating that the life-altering fatigue symptoms found
    in well-recognized illnesses such as cancer and MS are also a core
    feature of CFS/ME. Rather than trivialization of fatigue as a clinical
    entity, our journal intends to elevate the symptom of fatigue to an
    important research focus and medical concern. Secondly, by publishing
    a journal that encompasses a larger biomedical domain, fatigue
    researchers and practicing clinicians unfamiliar with CFS/ME and FM
    will have greater exposure to these understudied conditions in a high
    credibility publication: a scientific peer review journal.

    A Brief History

    Unfortunately, a CFS/ME-dedicated journal is no longer a viable
    enterprise. The Journal of Chronic Fatigue Syndrome (JCFS) folded in
    2008 in part because it attracted only 400 subscribers worldwide and
    was never indexed on Medline. (If permitted by the past publisher,
    electronic copies of JCFS will be made available on the IACFS/ME
    website.) Our new journal is intended to succeed based on its broad
    multidisciplinary focus, eventual Medline listing, and its backing by
    a major academic publisher.

    This new journal contract is the result of four years of proposals,
    conferences, and negotiations with a number of academic publishers.
    Gudrun Lange, PhD, a former board member and editor of the IACFS/ME
    Bulletin, played an important role in bringing about this new journal.
    The entire board of directors is to be commended for facilitating this
    new endeavor.

    The First Fatigue Journal

    Fatigue will be the first biomedical and behavioral journal focused on
    fatigue. We believe that high quality contributions in the area of
    fatigue are more likely to be submitted to a journal that clearly
    recognizes the importance of fatigue as a field of scientific study as
    well as a significant clinical concern. Not infrequently, submitted
    papers on fatigue (including CFS/ME) are not even sent out for review
    as editors often view fatigue as outside the purview of their
    journal’s mission. This is understandable given that no medical
    journal has a primary focus on fatigue.

    In a sense, this new publication will be a prominent vehicle to
    further advance fatigue as an important field of study. Given that
    fatigue focused peer review articles have increased almost 100% over
    the past decade (>1000 published papers in 2011 alone), we expect to
    attract some proportion of these papers to our journal. With the
    guidance of our publisher, we plan to apply for Medline indexing when
    acceptance is likely. The publisher will promote, market, and
    advertise the journal to medical libraries, conferences, and other
    professional events worldwide.

    Journal Aim and Content

    Our aim for the new journal is to address the symptom of fatigue in
    medical illnesses, behavioral disorders, and specific environmental
    conditions. These broadly conceived domains, all housed in one
    journal, are intended to advance interdisciplinary research on
    causation, pathophysiology, assessment, diagnosis, and treatment. The
    content that we seek includes original research papers, literature
    reviews, data-based theoretical papers, short reports, qualitative
    studies, case studies, conference reports, expert interactive
    commentary, and letters to the editor.

    The list of topics covered in Fatigue will encompass: fatigue in
    diseases including cancer, autoimmune diseases, CFS/ME, multiple
    sclerosis (MS), pain conditions, mood disorders, and circulatory
    diseases. In addition, specific issues involving fatigue in sleep,
    aging, exercise and sport, and occupations will be addressed. More
    generally, the journal will publish on the biology, physiology and
    psychosocial aspects of fatigue as well as diagnosis and treatment.

    We also welcome new topics such as clinical fatigue education in
    medical schools and public health policy with respect to fatigue.
    Ultimately, we plan to develop dedicated sections of the journal for
    specific research and clinical areas such as cancer and MS fatigue,
    CFS/ME, fatigue and sleep, fatigue and exercise, fatigue and aging,
    occupational fatigue and athletic /sports fatigue.

    Distinguished Editorial Board

    As an international journal, we have assembled a distinguished
    editorial board of fatigue scientists and clinicians from North
    America, Europe and Asia (Japan has its own professional fatigue
    society). The journal will be administered by the IACFS/ME through the
    journal editor (Friedberg), editorial board, and the editorial staff
    with an internet-based submission and review process. Our peer review
    will be a continuation of the procedures used in our current journal,
    Bulletin of the IACFS/ME, which will cease publication after a final
    issue this summer. All past issues of the Bulletin will continue to be
    available on the IACFS/ME website.

    Submissions Now Accepted

    We have begun accepting manuscript submissions for next year’s
    start-up issues. If you would like to be part of this new endeavor, we
    welcome your submission. The journal’s new website (under development)
    now contains author instructions and submission information:
    www.tandfonline.com/rftg

    With best regards,

    Fred

    Fred Friedberg, PhD
    President
    International Association for Chronic Fatigue Syndrome/Myalgic
    Encephalomyelitis (IACFS/ME)
    www.iacfsme.org

    Editor
    Fatigue: Biomedicine, Health and Behavior
    Journal website (under development): www.tandfonline.com/rftg
    Email: Fred.Friedberg@stonybrookmedicine.edu

    Research Associate Professor
    Putnam Hall/South Campus
    Stony Brook University
    Stony Brook, New York 11794-8790
    USA
    -------------------------
    Wildcat likes this.
  2. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,787
    Likes:
    487
    UK
    For those who aren't aware why the thread subject line is Fatigue Journal Take 2.

    (Note: I am unable to confirm whether Dr Enlander is a member of the editorial board for this IACFS/ME journal as the names of the members of its editorial board have not been disclosed.)

    On May 12, 2009, Dr Derek Enlander had circulated the following via JvR's HelpMECircle mailing list:

    -------------------------

    [From May 2009]

    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
    Fibromyalgia.

    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
    ------------------------------------------------------

    In a response from Dr Enlander published on Co-Cure, on May 13, 2009, to a request for clarification of the scope of the then proposed journal, Dr Enlander had written:

    “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 have focused on, at a time when the BMJ , New Scientist, Lancet and other journals proclaim the psychobabble theory.

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

  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,582
    Likes:
    5,361
    Albuquerque
    Hmmm! What's up? Is this a newly proposed version of the Journal that was to be edited by Dr. Enlander, or a different group all together. Wish they had made their editorial board public.

    Some of the things you highlighted could be very problematicc--of course including the name of the journal.

    Sushi
    WillowJ and Wildcat like this.
  4. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,787
    Likes:
    487
    UK
    Unknown, Sushi.

    When Dr Enlander announced his concept for a journal back in May 2009, I was given to understand from my sources that there was IACFS/ME backing (whether this was the case or not, I can't confirm). But Dr Enlander never issued a formal statement clarifying the scope of the then proposed journal or its editorial board's affiliations or financial backers.

    Nothing more was heard about it publicly that I am aware of beyond May 2009.

    I don't know why the names of the board members are not being disclosed either.

    It says in the PDF:

    "This new journal contract is the result of four years of proposals, conferences, and negotiations with a number of academic publishers."

    Evidently negotiations around this project predate Dr Enlander's brief announcement in May 2009 for a journal which was apparently looking to launch in 2010.

    Suzy
    Wildcat likes this.
  5. Esther12

    Esther12 Senior Member

    Messages:
    5,175
    Likes:
    5,162
    Almost anything related to research and CFS or fatigue could be quacky, or could be helpful. Maybe this journal would be good? It's impossible to say imo.
  6. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,847
    Likes:
    4,752
    Sth Australia
    Even with those well known to ME names ..if they are on board of directors, I still really hate the idea of a journal called "Fatigue" which will all know will be mostly focused on ME/CFS. And those well known to ME names (Cheney etc) wont be around forever, once they are gone what then? We could be left with this "fatigue" journal with no one in ME field running it.

    This will just help push the concept (to those who arent even reading it but just hear of it) that ME/CFS is all about fatigue.

    If there isnt enough need for a journal to focus solely on ME/CFS, cant they call this journal something else relevent which also can attract other illnesses too? eg "The Journal of Misunderstood Illnesses" or something along those lines. (lets include in it .. all little known illnesses.. maybe that would be an interest to doctors) or better still "The journal of Mystery Illnesses" (that is certainly relevent to quite a few illnesses) eg chronic lyme disease, MCS and so many other things.

    or How about "The journal of ME/CFS/FM and Orthostatic Intollerance Disorders" if they need to widen the range it covers. The it could cover POTS, NMH/orthostatic hypotension and orthostatic hypertension too along with other things like pure autonomic failure.

    Surely there are other things to call this journal other then "Fatigue". Cant they understand that is insulting to many of us due to having many doctors out there already who think our illness is just mostly about fatigue. It would just keep on maintaining that biased view out there towards fatigue over our other symptoms.

    Also more are would be getting diagnosed now with ME/CFS then ever before, due to we all are right in the age of the Internet now.. more people and doctors would be diagnosing since the days of the old Chronic Fatigue Syndrome Journal. So membership one would think, may be larger then it was previously.

    I beg any of those ME specialists who are thinking about this journal is a good idea.. to please please consider how giving more importance to "fatigue" may have negative impacts on us.. it already has too much impact on us over the other symptoms we suffer from as well. Already too much ME/CFS research goes into the "fatigue" side of this illness and not enough into other aspects of it. How's this journal going to help make the ME/CFS field more balanced in its science?

    Please call this journal something else, its insulting and outragous to use this name when there is already too much misconception out there publically that CFS is just fatigue. This journal with that name, isnt going to be accepted by much of the ME community and it just isnt going to be good for us.

    So many other illnesses do have fatigue in them.. but none of their orgs are stupid enough to suggest to have a journal for them called "fatigue"... why do this to us? esp when its such an insult to many of us due to the biased views already out there. Sure call our journal something which can also attract other illnesses too if need be, to make it more popular, but there are so many other things this could be called to do that. Things which would help ME/CFS be taken more seriously.

    I wonder how AIDS patients would respond if they didnt have a journal at all and their orgs wanted to do one for them called "Fatigue".
    Wildcat and beaker like this.
  7. biophile

    biophile Places I'd rather be.

    Messages:
    1,371
    Likes:
    4,297
    I'd rather wait to see how the new journal performs before judging it.

    As the IACFS/ME notification explains, it is basically this or nothing at all. It is unfortunate we cannot have a better name or a dedicated journal, but CFS papers (including ones the patient community finds useful) are already being routinely published in journals with names involving "psychosomatic", "behavioural", "psychology", "psychiatry", etc. I don't think a journal name involving the word "fatigue" could be much worse than the current situation, especially if the board for this new journal accepts ME/CFS as a real biomedical condition and wants to publish useful papers in that context.

    Yes, CFS places a misleading overemphasis on fatigue, which is an inadequate description in its current form. However, medical fatigue itself should be taken more seriously, this journal also has the potential to expand or improve the definition and give the weight back to "fatigue" which was taken from it by psychiatrists during the 1990's.

    If we abandoned everything that psychiatrists have tried to claim, we would also abandon the term ME which most other people in the UK seem to regard as little more than tiredness anyway. 26 international researchers have already endorsed the resurrection of ME in the 2011 ICC, but additional research would be required to restore mainstream weight.

    This new journal should offer an additional avenue for publication, keeping in mind that people like White, Wessely and Jones are peer-reviewers for other journals, putting a stranglehold over non-biopsychosocial papers.
    WillowJ, Camilla and Dolphin like this.
  8. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,787
    Likes:
    487
    UK
    Just to clarify:

    I have no information on the make-up of the editorial board of this newly announced journal. What I have posted is the list that was published by Dr Enlander in 2009.

    It isn't confirmed whether this is the same initiative or whether any of those on that editorial board are on the board of this newly announced journal.

    Suzy
  9. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,847
    Likes:
    4,752
    Sth Australia
    Maybe we'd be better off with nothing at all then this, just like we would of been better off if the term "chronic fatigue syndrome" didnt get created when ME was already out there.

    and what happens when that psych field gets their hands onto this journal and end up on its board at a future date (if im lucky, I may be still around in 20 years.. I can imagine something like that happening). What then.. this journal is "fatigue" they could make it so only articles about CFS and fatigue go into it and block all the rest of the ME/CFS studies... then what chance have we got at getting a good ME journal?
    The journal hasnt even got ME/CFS in its title if they are just calling it Fatigue.

    We need to be pushing for a good journal or wait for it.. jumping onto a bad one would further delay in the future something better.
    ME goes back way before the psychs got hold of it, so why would we want to abandon it.
    silicon likes this.
  10. alex3619

    alex3619 Senior Member

    Messages:
    7,017
    Likes:
    10,794
    Logan, Queensland, Australia
    I would argue that the psychs grabbed hold of ME about seventy years before the term ME was invented. They took the neurological disorder neurasthenia, which sounds almost identical to ME, and then changed its meaning to the point where it was a parody of the old diagnosis.They expanded and generalized the definition. Then in the early part of the last century most psychs saw the neurasthenia patients rediagnosed. The whole ME and CFS debate is neurasthenia all over again, a point I have been meaning to write a blog about.

    I am unsure about this journal. It has the potential to be an unmitigated disaster. On the other hand it could be a very smart strategic move. Its all about the details. For example if they restrict the publication of cognitive and behavioral papers on ME to those with a sound scientific basis then 95%+ of the type we usually see would be kept out. Furthermore, if a psychiatrist is reading on the use of CBT etc. in CFS, and it was a properly designed study, they might stop and look at the other half dozen papers which would put it in perspective - especially if all the biomedical papers use a modern ME definition. Gone would be the one sided message to the psych community because they do not read enough biomedical studies and are simply not aware of the science.

    Disaster or benefit, its too early to tell. It could go either way.

    Bye, Alex
    WillowJ and silicon like this.
  11. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,787
    Likes:
    487
    UK
    The PDF of the announcement says:

    "Scientific papers on all aspects of CFS/ME are particularly encouraged and will be published in this new journal."

    So is this a journal for the study of "fatigue" across a wide range of diseases, aging, sports medicine and behavioral disorders and for study of the "fatigue" aspect of CFS and ME or is this a journal for "all aspects of CFS/ME"?

    The editorial board doesn't seem to be able to make up its mind.

    And if its remit is unclear to us, it's going to be unclear to those who might potentially submit papers, who already have their own speciality journals to submit papers to, with established subscriber demographics; it will also be unclear to potential subscribers to the journal.

    I don't see how it would successfully provide a platform for studies of "fatigue" manifest across a wide range of diseases and behavioural disorders + "all aspects of CFS/ME" (presumably PEM, pain, cognitive impairment etc) and have credibility with potential submitters for publication outside the area of CFS and ME.

    Suzy
    Wildcat, taniaaust1 and beaker like this.
  12. Hope123

    Hope123 Senior Member

    Messages:
    1,141
    Likes:
    532
    Like biophile, my take on the use of the word "fatigue" is different. It's a very important symptom in medicine across a wide number of disorders and it doesn't get its due -- patients routinely rank it as one of their top symptoms that doesn't get addressed well. On the scientific side, my theory is that at least part of the flu-like exhaustion in ME/CFS is related to autoimmune fatigue -- i.e. caused by cytokines and inflammatory factors -- and we could benefit from research/ clinical insights on fatigue in cancer, MS, etc. and on the converse, some of those scientists might see ME/CFS studies and get interested in ME/CFS. (In fact, treatment of hepatitis C with immunomodulators produces symptoms similar to CFS; I don't think anyone has done it as it would be a tough study for the patients but who know if these folks might exhibit similar characteristics of PEM if exercised?) So, yes, ME/CFS is more than fatigue and other symptoms of it need to be investigated as thoroughly. However, if new journal includes articles covering other aspects of ME/CFS as well, that is more important to me than the title.

    Also, people here may not understand the importance of circulation and being Pubmed-indexed. Due to people's devotion and diligence on here and other ME/CFS sites, we get notice of articles from all types of resources/ journals about the illness. However, for the average busy scientist or clinician not devoted to this illness, they're not even going to notice the majority of these articles unless it is in a widely circulated or in a Pubmed-indexed journal that comes across their radar. I've often thought that the reason why we still get a lot of doubt among MDs and have a hard time recruiting people into this field is they don't see this literature. For the last 20 years, IACFS/ME has published first the Journal of CFS and then the Bulletin, both solely focused on ME/CFS, neither of which were Pubmed-indexed. To continue to do the same thing over and over and expect different results is, as Einstein said, the definition of insanity.

    Finally, word on the street is that scientists and physicians still do not have an easy time getting ME/CFS papers published in peer-reviewed journals, especially the top ones. They still face doubt and are held to a higher/ different standard than the average scientific paper. The XMRV fiasco did not help. More opportunities to publish are good.
    WillowJ, Dolphin and alex3619 like this.
  13. Andrew

    Andrew Senior Member

    Messages:
    1,960
    Likes:
    1,222
    Los Angeles, USA
    They could have named it any number of things. For example, we have the New England Journal of Medicine. It is not named after a symptom or an illness. It does not only report on medicine in New England.

    Their problem is they all met in a committee. They should have turned to patients to come up with names that were not symptom based and not CFS based, and not ME based, not system based, but allowed for this to work. Hundreds of minds working on a solution is better than 8 or 10, no matter how sick everyone is. I'm tired of the IACFSME not drawing on input from more people.
    Wildcat and taniaaust1 like this.
  14. floydguy

    floydguy Senior Member

    Messages:
    650
    Likes:
    238
    I think you're really being naive. This effort is being driven by psychologist whose recent work focuses on behavior management - ie $600K from NIH for CBT for CFS patients.

    In addition, I don't buy the concept of all PR is good PR. Publishing endless articles on "fatigue" based on ridiculous questionnaires won't help us (many of us anyway). If there is any integrity left in science "good" science based research will find it's way into main stream journals. I cannot fathom the "average" doc/researcher will take anything in "Fatigue Journal" seriously.

    I see this as the "Empire Strikes Back". It's mind boggling to me see this any other way.
    Wildcat and beaker like this.
  15. alex3619

    alex3619 Senior Member

    Messages:
    7,017
    Likes:
    10,794
    Logan, Queensland, Australia
    Its all about the editors and the review system. If this journal does a credible job of both it will work fine. If the deck is stacked with editors and reviewers of a particular type of bias, then the journal will publish very one sided papers. "Fatigue" itself is not an issue. "Biopsychosocial" and "psychosocial" aspects of fatigue could be depending on how they are handled. Pain is a very common symptom for us. If they called it "Pain" then we would have fewer complaints.

    I no longer regard names as the primary or even an important problem. Its not the names its the people who misuse the names - we could call it Bluck Disease and they would abuse it, we could make a journal called "NK Function" and they would abuse it - if the editors and reviewers don't hold them to the same standard of excellence as biomedical papers. Thats what the psychologizers do - they are even trying to subvert neurology. Everything they see is through psych-coloured glasses. I expect to see psych papers on PEM or PENE in time. They appear to have two strategies. Co-opt the name and use similar sounding terms with different meanings, broadening definitions until they fit a psych strategy is the first. The second is to totally ignore anything that contradicts them ... if they don't even mention it in papers then most psychs wont even know it exists as like most medical practitioners they are too busy. We see both things happening in the DSM-V, though in addition I suspect they like to change names when the old names are becoming tainted in the public or medical view.

    We need to stop them changing definitions, and call them to account when they use misleading or deceptive language. Too often this is subtle and busy people (or cogntively impaired people) miss it. I think a lot of docs do spot it but probably don't see it as their responsibility to fix it - SEP, Someone Elses Problem. SEP is the dysfunctional belief we need to fix - we need the medical community to recognize this is a major issue that is holding back medical research.

    I have been thinking a lot about medical ethics, though I have a lot of research still to do. I think most of this is and should be called for what it is: experimental medicine. While it is ethical to do this in an approved study provided they do not lie to patients about intent, it is unethical to practice it in common medical practice, and severely unethical (probably criminal) to force it on any patient. By "it" I mean things like CBT/GET based on the Dysfunctional Belief Model, though I suspect that most of psychosomatic medicine is similarly tainted.

    Bye, Alex
    WillowJ likes this.
  16. floydguy

    floydguy Senior Member

    Messages:
    650
    Likes:
    238
    Alex - I respect your thoughtful responses. However, I have to disagree with you about names to some extent. "Fatigue" AND "Pain" are almost entirely subjective terms based on self-assessments and absurd questionnaires. Do you really see any respectable cancer researcher submitting a study to "Fatigue" magazine? It's shocking to think that anybody in this community seriously thinks that "Fatigue" magazine has any chance of gaining widespread respectability.

    "Low NK Cell Activity" at least has the possibility of being based on some science based assessment - it can be scientifically measured. I agree though that "PEM" and "PENE" can be abused as well. I am not a fan of either of those terms.

    Language: I absolutely agree. I think one thing that we can do is hold people accountable to the language they use. One of the biggest surprises for me in this odyssey is how sloppy even respected people like Dr. Klimas can be with their terminology. We have to remove "fatigue", "PEM", "PENE", etc. from the dialogue. These are almost entirely meaningless terms that can mean almost anything.

    Personally, I think we should hammer the IACFS on this issue. Prior to Friedberg being President I had somewhat positive feelings. Now I seriously wonder what is going on there.
    Wildcat likes this.
  17. alex3619

    alex3619 Senior Member

    Messages:
    7,017
    Likes:
    10,794
    Logan, Queensland, Australia
    Hi floydguy, I do agree that we should abandon talking about fatigue as though it were a discrete real entity - fatigue is a syndrome and not all fatigue is equivalent, and sometimes the word fatigue is extremely misleading. Its just that the psychologizers wont care either way, and they are our primary problem - they are the people who continually spin our condition as psychogenic on the basis of zero objective evidence. In that context it is unclear what impact a journal called "Fatigue" will have - and I do agree that it could be a disaster, it all depends on how its managed. Based on past history in CFS and ME research, I don't have high hopes, but equally I cannot discount that a well managed journal might be beneficial.

    One thing that worries me is what happens if 90% of the papers submitted are about psychogenic theories? If most of it is quality biomedical research that will be fine, but if they are avalanched by psychogenic papers how will that handle it? That is an important issue that will determine to a large part the value of such a journal.

    I do think that traditional CBT based on improving patient management of their health can sometimes be useful for a subset of patients. Its the hype surrounding it that is doing the damage.

    On the other hand I think that if we understood more about fatigue states in MS and similar disorders it would benefit us as well. However it is not clear that a journal called "Fatigue" is necessary. Whereas pain has semi-defined mechanisms I think fatigue is so heterogenous that its problematic. I do wonder though if this is not a reason to have a journal focussing on it - maybe over time they can start to sort some of these issues out.

    As for immunological markers, I think the real change will arise when the current sets of markers are finally understood. It is highly likely this will lead to a diagnostic test, strongly implicate either autoimmunity or pathogens (or both) and end the reign of the psychologizers forever ... or until they redefine their "research" yet again.

    Bye, Alex
  18. Andrew

    Andrew Senior Member

    Messages:
    1,960
    Likes:
    1,222
    Los Angeles, USA
    Maybe the journal for TB should be called "Cough."
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,582
    Likes:
    5,361
    Albuquerque
    :rolleyes:
  20. Hope123

    Hope123 Senior Member

    Messages:
    1,141
    Likes:
    532
    No, I'm not being naive. As mentioned before, the devil (or God) is in the details. I try to look into the details of things before I make a conclusion and my perspective comes from not only the patient side but also as someone with clinical/ research/ publication experience. Just because someone is a psychologist doesn't make them an enemy -- Lenny Jason and Ellen Goudsmit are both psychologist who have done good work in this field as well as Eleanor Stein who is a psychiatrist. I would suggest people read Fred Friedberg's work or watch his presentation at NIH last year, if they are able, to get a better flavor of where he stands. He also has worked with the other aforementioned people.

    I do think that outside of ME/CFS, fatigue is being increasingly recognized, for the good, as an important serious symptom of many illnesses and even of certain situations, such as aging. (Another potential cross-over area; there is active research going on looking at inflammatory markers in the elderly and how that might contribute to fatigue.) And the researchers/ clinicians in these fields do get taken seriously; I had colleagues whose research focused on fatigue in aging. In any case, I can understand why people in the ME/CFS community are worried about the name and what will happen but at the same time, the views of the scientific/ medical community on fatigue and the way it is interpreted in areas outside of ME/CFS are different than the way fatigue has been viewed or used in ME/CFS. If we can get the fatigue and other symptoms of ME/CFS recognized in the way that fatigue has been recognized in other more established illnesses, that might actually be a win for us.

    [By the way, there is already a journal called Pain that is influential and published by the International Association for the Study of Pain.]
    WillowJ and Dolphin like this.

See more popular forum discussions.

Share This Page