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Fatigue Journal Take 2

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

  1. alex3619

    alex3619 Senior Member

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    Hi Andrew, to be fair TB is a serious disease, so maybe it should be called "Caugh, Caugh and Caugh again". ;)

    I am aware of a journal called "Pain", which is why I made a point of saying that pain is semi-well-defined. Fatigue on the other hand is found in almost every disease and disorder known - it covers a huge spectrum of underlying physical problems - and not just depletion of energy stores or a build-up of lactic acid. You can find "Pain" here:
    http://www.painjournalonline.com/

    This month "Pain" has articles on catastrophizing and fear avoidance. These were two out of four articles on their promo sectoin - Issue Highlights. These are psychosocial issues though to be fair I have not read the papers. I am not sure if there is a paywall or it just requires registration. If this type of article is well reviewed prior to publication they could be very good - but if the same thing happens as I see in other journals then they are printing stuff I would give a failing grade to. Psychosocial research, and its variant (bio)psychosocial, need to be held to a high standard of excellence - much higher than the standard they are currently held to. If they massively increased the standards these researchers are held to, they could still be less than the standards most of biomedicine is held to.

    Bye, Alex
  2. taniaaust1

    taniaaust1 Senior Member

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    I doubt whether most of the ME/CFS papers published are going to use modern ME definition. That seems to be still a long way off.

    The past Journal of Chronic Fatigue Syndrome which wasnt a bad journal as it was unbiased... that didnt change the views of those psychs... psychs just tend to listen more so to others in their psych field. As the Journal of Chronic Fatigue Syndrome didnt change the psych views before.. I doubt it will work in that way and change psychs views now (esp with even worst title)..
    How are things different now to then to make things different this time?
  3. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    On May 20, 2009, Dr Enlander opened a discussion thread on Dan Moricoli's ME-CFS Community in response to the enquiries and comments he was receiving since circulating his brief announcement on May 12.

    No formal statement was issued clarifying the enquiries Dr Enlander was receiving though Dr Shepherd (named as one of the editorial board) posted a personal position statement that was placed in the public domain.

    The thread is still accessible, though now quite fragmented, since a number of contributors removed their posts while the thread was active or had their posts removed.

    At the beginning of the thread, Dan Moricoli had been supportive of the concept for the journal but as the thread develops reversed his position and posted that he no longer considered he could support a journal with the name "Fatigue." Ironically, those members who don't have a profile image uploaded against their names now display a default image of a button/badge with the slogan "This is not FATIGUE."

    It was unfortunate that having opened a platform presumably with the intention of generating public discussion that Dr Enlander chose, in his opening post, to frame legitimate expressions of concern around the lack of any consultation about the journal's name, the lack of a formal statement setting out the rationale for the choice of the name and the lack of a clear definition of the journal's scope, in terms of "attacking" those who comprised the editorial board and giving "more fodder for Wessely" and in a later post, making confrontational remarks about patients' levels of energy for engagement.

    I find it extraordinary that any individual or committee should launch a concept with no prior consultation with the project's constituency of interest using what would have been known to have been a controversial name and not anticipate public debate or enquiries about matters relating to the project that were absent from the announcement. It wasn't handled well.


    I have written to Dr Friedberg this morning and asked why the names of the editorial board of this new journal project have not been made public and when the make-up of the board will be released.

    Suzy
    Wildcat likes this.
  4. taniaaust1

    taniaaust1 Senior Member

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    That's exactly one of the things which got to me... I cant see how this journal can both be for studies of illnesses with fatigue.. while at the same time cater for all the different ME/CFS studies esp if they dont clearly advertise on the cover of it that it also covers all aspects of ME/CFS.

    This is going to confuse most ..both those who want to submit papers and those who may think about reading the journal too. They need to be very clear exactly what this journal is for and that clarity needs to be on the cover perferably with the name. What kind of medical journal dont make it clear with its name what it is catering for?

    There WILL BE a lot of assumption out there that this journal is just for fatigue studies rather then other kinds of ME/CFS studies too (how can it not have that affect?).. . and that assumption will end up causing more "fatigue" CFS studies to get published (so a biased slant towards those type of ME/CFS studies) and less of the other ME/CFS research and many researchers wont realise they can put ALL CFS studies in the journal.
    It will cause more research to be done on ME/CFS fatigue as suddenly we have a journal for that very thing.

    This journal is for behavioural things too.. etc.. so its not like they will block CBT studies, GET studies etc. All this journal is going to do is end up putting all those bad studies out there together to be more easily shown.

    Its all another form of biased ME/CFS brainwashing for both doctors, researchers etc. This journal will be a massive step backwards in things. We need clear ways going forward.. not ways in which are very muddied if we want to get out of the muddied past.
    silicon and Wildcat like this.
  5. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    It has a considerable editorial board and list of associate editors to call on:

    http://www.painjournalonline.com/edboard


    If the editorial board of this new journal is predominately skewed towards CFS, ME and FM researchers and clinicians on whom will the board be calling for review of submissions outside that area?
  6. taniaaust1

    taniaaust1 Senior Member

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    Umm that would be a better name for a journal and would get far more interest and allow publication for every other illness too.. Why dont they call it "The journal of Experiemental Medicine" if they need to make it so different illnesses publish in it and hence make it more read.
    ME/CFS is certainly a trip into experimental treatments!!!

    Is there an "Journal for Experimental Medicine" for publication of experimental treatments covering all illnesses, currently out there???.

    If not, seriously maybe this would be a far more suitable option without so much negativity biased and wont be placing biased onto the symptom of fatigue or any other individual ME/CFS symptom. This suggested journal name, carries least of a negative risk to us and only could have a postive outcome.

    Its probably pointless to be comparing the fatigue of our illness with the fatigue of other illnesses anyway.. that possibly may not pan out other clues anywhere in the near or medium term future.
    ................

    I ask that those who are currently putting the "fatigue" journal in place.. please do some brain storming as there are many different names it could be called, in which could attract public attention with more subscribers, but would also not at all possibly affect things in any kind of negative way at all. We could really do with a journal but we dont need one which could majorly backfire.
    silicon likes this.
  7. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    To use the analogy with a pain journal:

    A new journal is launching in 2013 that will invite submissions from researchers in the fields of

    pain in cancer, pain in RA, pain in MS, diabetic neuropathy, sports injury, trigeminal neuralgia, pain following amputations, herpes zoster, pain associated with somatoform disorder, migraine, cluster headache, pain in CFS and ME and all aspects of CFS/ME.
    taniaaust1 likes this.
  8. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    For those not aware, all three have publicly disclosed that they are patients.


    http://sb.cc.stonybrook.edu/happenings/sb_medicine/professor-receives-nih-grant-for-chronic-fatigue-syndrome/

    Professor Receives NIH Grant for CFS

    Fred Friedberg, Research Associate Professor and Clinical Psychologist in the Department of Psychiatry and Behavioral Science at Stony Brook University School of Medicine, through the State University of New York Research Foundation, received a $600,000 grant from the National Institutes of Health (NIH) to continue testing a home-based self management program for people with chronic fatigue and chronic fatigue syndrome (CFS).

    The NIH grant runs for two years, effective until the end of August 2013. In 2008 Friedberg, principal investigator, received an initial one-year $100,000 NIH grant to launch the home-based self management program for chronic fatigue and CFS patients, with the expectation of learning how to help patients more effectively manage their conditions.

    “There are no effective and established medical treatments for these illnesses, and the behavioral program is intended to help patients function and feel better,” said Friedberg, pointing out that the causes of chronic fatigue and CFS are still unknown.

    CFS remains a controversial illness. Yet, the NIH and Centers for Disease Control and Prevention have designated CFS as an important public health issue and recognize the need to better define, diagnose, and treat the illness. For more on CFS, see this CDC link.

    “Cognitive-behavioral treatment, a type of stress management training combined with low-level exercise, has shown promise to help people with CFS cope better and lessen illness severity,” said Friedberg. “This ongoing study tests a home-based version of cognitive-behavioral treatment that is based on a self-help model of illness management. We also want to see if this type of intervention saves health care costs, an important issue because of the ever increasing expenditures for health care.”

    The self-help program involves lifestyle change and stress reduction techniques, including graduated exercise, relaxation, pacing techniques, cognitive coping skills, low effort pleasant activities, and social support. All of the treatment components, individually and in combination, may help patients with CFS.

    Recruitment of additional patients, who must be fatigued for at least six months, is underway. The Department of Psychiatry and Behavioral Science will spearhead the analysis of the study’s entire findings.

    For individuals interested in the study and participating, please call Friedberg at (631) 632-8252.

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

    http://www.apa.org/convention09

    American Psychological Association 2009 Annual Convention, Toronto:

    Workshop Friday, August 7

    https://cyberstore1.apa.org/cyb/cli/casinterface1/ceworkshops/index.cfm?action=view&confday=3

    Back by popular demand

    #127: Chronic Fatigue Syndrome and Fibromyalgia: Theory, Assessment, and Treatment

    Course Level: Introductory

    Chronic fatigue syndrome (CFS) and fibromyalgia (FM) are controversial and
    poorly understood illnesses without clearly defined causes or well-established
    treatments. In this INTRODUCTORY workshop, participants will learn about
    (a) illness controversies and theories of causation; (b) practical methods of
    psychological, behavioral, and community assessment; and (c) effective,
    individualized treatment strategies. Using our mind/body approach, consisting of
    cognitive, behavioral, and experiential interventions, clinicians can offer
    realistic hope for substantial improvement to these patients.


    This workshop is designed to help you:

    1. Utilize basic knowledge about chronic fatigue syndrome (CFS) and fibromyalgia
    (FM);
    2. Describe theories of causation in CFS and FM;
    3. Assess and differentially diagnose CFS/FM, depression, and anxiety disorder
    in the clinical setting;
    4. Describe through experiential exercises how to recognize and provide feedback
    to a client with a CFS or FM presentation;
    5. Assess the interactions between coping skills, activity management, and
    potential improvements in CFS and FM;
    6. Identify lifestyle and stress factors related to these illnesses in order to
    set up targets for clinical intervention; and
    7. Formulate a cognitive-behavioral improvement approach to the treatment of CFS
    and FM.

    Leader(s): Fred Friedberg, PhD, Stony Brook University, Stony Brook, NY;
    Leonard A. Jason, PhD, DePaul University, Chicago, IL

    Enrollment Limit: 40
    CE Credits: 7
    Time: 8a-3:50p

    Member Non-Member
    Advance $210.00 $245.00
    Regular $245.00 $315.00

    Topic Area(s): 32 Health Psychology/Behavioral Medicine, 8
    Clinical/Counseling/Consulting
  9. floydguy

    floydguy Senior Member

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    “There are no effective and established medical treatments for these illnesses, and the behavioral program is intended to help patients function and feel better,” said Friedberg, pointing out that the causes of chronic fatigue and CFS are still unknown.

    First of all, I think Dr. Klimas a few others would disagree with this. Her perspective at least with me is that function can be improved through medical treatments. And I would tend to agree.

    Secondly, as has been discussed here before there is no evidence that CBT and pacing has any effect either.

    “Cognitive-behavioral treatment, a type of stress management training combined with low-level exercise, has shown promise to help people with CFS cope better and lessen illness severity,” said Friedberg. “This ongoing study tests a home-based version of cognitive-behavioral treatment that is based on a self-help model of illness management. We also want to see if this type of intervention saves health care costs, an important issue because of the ever increasing expenditures for health care.”

    Again how do we know this effective? Why should the Feds pay for this? They should just pay Dan Moricoli $5000 to prepare his yoga video and put it on YouTube.

    Personally, I'd be better off if the NIH provided a cooking class to assist me in food selection and preparation.

    Sorry I think Fred Friedberg is doing Business Development for himself and Stony Brook.
  10. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Earlier today, I responded briefly to the email I had received from Dr Friedberg a few days prior to release of the announcement.

    As I haven't asked permission to repost Dr Friedberg's response in full, I shall paraphrase.

    In my response to Dr Friedberg, I asked why the names of the editorial board have not been published and when the make-up of the editorial board is planned to be released.

    Dr Friedberg has stated that negative reaction to the new journal was anticipated and that he did not wish those on the editorial board to be placed at the receiving end of negative reaction; that he wished to give the editorial board members time to decide whether they wished to remain on the board given the negative reaction that is now coming out; that the editorial board will be posted in the journal when it is launched and that he is undecided whether he will release the names before then.

    Dr Friedberg clarified that in answer to my blog post that Dr Derek Enlander was not involved in developing the journal.
  11. alex3619

    alex3619 Senior Member

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    What is different is that papers the psychs will read will be in the journal. The Journal of CFS did not have a lot of psych papers, so they would never read it. It was also not widely distributed or indexed. The new journal is designed to appeal to a wider readership and be more accessible. I just hope its open access.

    Bye, Alex
  12. CBS

    CBS Senior Member

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    As many others have already pointed out, the mistakes being made by the IACFS/ME are that this disease is not simply characterized by fatigue any more than many other diseases. Secondly, why keep stigmatizing us with the "behavioral" label. The behavioral thing seems almost compulsive. They know how damaging it is yet they just can not help themselves.

    If it isn't too late, I'd like to propose an alternative name for the journal "Sick." It's a lot more accurate and far less likely to be co-opted by the psych crowd. AND, it still leaves plenty of room for submissions covering other serious illnesses such as MS, cancer, etc. In fact, I can't think of a single serious disease that would be excluded.
    silicon likes this.
  13. beaker

    beaker CFS/ME 1986

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    If a "negative reaction to the new journal was anticipated" ( reaction is coming from the community they are suppose to be serving) and they can't stand behind their decisions and take the criticism AND they are being given a chance to back out due to said criticism, shouldn't that tell them something ????
    Hello ?
    Even the sad state of my brain can clue in on that. I do not feel sorry for them taking some heat. It's nothing, NOTHING compared to what patients have endured from the medical community, media , etc... with the "F word"

    Here is a quote I pulled out of an article I found on Prohealth
    Dr. David S. Bell, MD - Dedicated to the Plight of Chronic Fatigue Syndrome Patients Since 1985
    ok this is about CFS . But it is because of the "F word"
    The point I am trying to make is I bet I could do a search and find a similar quote from most of the me/cfs specialists.
    and therefore some of the editors. what happened ?
    ( eta: I did not mean to imply that Bell is on the board. I have no idea. I was just trying to say that those on the board should of known better. )

    Yes I am feeling cranky about this, and very undiplomatic. Pain can do that, along with all the other many symptoms I have, of which fatigue is only one. It feels like we are going backwards.
  14. Andrew

    Andrew Senior Member

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    The name does make a difference, depending on the use of the word "fatigue." See below:

    J Health Soc Policy. 2004;18(1):43-55.

    Chronic Fatigue Syndrome versus Chronic Neuroendocrineimmune Dysfunction Syndrome: Differential Attributions

    Abstract
    Since 1988, when the term chronic fatigue syndrome (CFS) was coined, considerable discussion has occurred about stigma associated with this diagnostic term. In particular, patients with CFS have felt that this term trivializes the serious nature of this disorder. A Name Change Work group, appointed by the CFS Coordinating Committee, developed an umbrella term chronic neuroendocrineimmune dysfunction syndrome (CNDS), and proposed that there would be sub-types under this term, one being CFS. The present study examined attributions of this new umbrella term when compared with CFS. Nurses and physician assistants (PAs) were presented a case study of a patient with symptoms of CFS. They were told that the patient either had “chronic fatigue syndrome”, “chronic neuroendocrineimmune dysfunction syndrome”, or “chronic neuroendocrineimmune dysfunction syndrome , which had formerly been called chronic fatigue syndrome”. The different terms led to different attributions, with PA respondents rating the “CNDS” label as more severe. Results suggest that a more medical sounding term (CNDS) may lead to attributions that this syndrome is a more serious, disabling illness. The policy implications of these findings are discussed.
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  15. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    beaker, in 2009 I posted a number of commentaries on the Dr Enlander journal concept on my ME agenda Wordpress site, including this compilation of quotes from Greg Crowhurst by clinicians and researchers on the "F word" which includes a quote from Dr Bell:

    http://meagenda.wordpress.com/2009/...-literature-on-me-and-fatigue-greg-crowhurst/

    What Fatigue?
    A few quotes from the literature on ME and fatigue.

    [...]

    Dr David Bell M.D (1995) describes the word “fatigue” as: “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.” (Bell, David S MD 1995, The Doctor’s Guide to Chronic Fatigue Syndrome, Perseus Books, Massachusetts)

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

    Shortly after Dr Enlander announced his proposed journal and its six person editorial board, he disclosed that Dr David Bell had also agreed to join the editorial board of the journal "Fatigue."

    Suzy
  16. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Dr Shepherd, a member of the editorial board for the proposed 2009 journal, said at the time, that he knew very little about the scope of the journal and sought to distance himself from the choice of name; he also invited suggestions for alternative names although he was not the Editor and it was not clear whether in calling for alternative names he was acting on behalf of the board or on behalf of himself.

    You can read what he had to say towards the bottom of this post here:

    http://meagenda.wordpress.com/2009/05/16/new-journal-fatigue-whats-in-a-name/
  17. Andrew

    Andrew Senior Member

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    They cite complaints from different groups as a reason to avoid other names, yet they pick a name that offends the most groups. So what's the logic, to be fair by offending as many people as possible???
    taniaaust1, beaker and floydguy like this.
  18. alex3619

    alex3619 Senior Member

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    Myalgic encephalomyelitis was resoundingly put down to hysteria in the early 1970s, though I forget the name of the paper, though I think it was on the Royal Free Hospital epidemic. The psychologizers don't care about names, they will still make their claims. Its good to use accurate terminology to avoid confusion, hence the use of the word "fatigue" should be very careful, but it is only a step along the way, its not nearly enough.

    Most docs have been taught in medical school about psychosomatic illnesses including conversion disorder and hysteria. The psychologizers took neurasthenia, a neurological condition, and made it psychosomatic in the late nineteenth century. They did the same for ME around 1970 or so - it became a discredited psych diagnosis to most docs. Then they did it for CFS. Wessely resurrected the neurasthenia debate as a psych diagnosis, ignoring the early work of Beard. The labels are a distraction, the nonsense they are using the labels for is the real issue. I still think this is all Freudian nonsense, even though Freud learned some of it from the neurologist Charcot.

    The biopsychosocial movement has been railroaded by psychosomatic medicine. It presents itself as a fair and balanced approach, it uses words that sound fair and balanced, but its actual implementation is anything but. Its full on psych with minimal bio- and -social trappings. They also vacilate on what they mean by so many things. Now they would probably argue thats because its an evolving science, and its changing to reflect current research.

    I am still not convinced any of psychosomatic medicine can be called science. I have sufficient evidence to think depression, anxiety and phobias are real. I do not have such evidence for purely psychosomatic disorders. I am coming to the conclusion that there is no such thing as a proven psychosomatic disorder when its defined as faulty cognition or emotions resulting in physical symptoms without physical cause. Its never been validated. There is much more solid evidence that ME is caused by viruses than by cognition, and yet the virologists show scientific prudence in what that claim. I wish the psychologizers would do the same - they practice experimental medicine, none of the underlying theory has been validated, it relies almost entirely on unsubstantiated rhetoric.

    When a medical practitioner doesn't have an answer, they should say "I don't know" or "I think nobody knows the answer". To assert they know what it is, or they can successfully cure it, or they must be right, is very likely an ethics violation - or should be if it isn't. I am slowly accumulating evidence to this effect. The way things are happening in the biomedical science though I think they will be thoroughly debunked before I am ready to publish.

    Bye, Alex
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  19. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    At the point at which the 2009 journal concept was announced, I didn't get the impression that the editor and his editorial board had engaged in very much discussion about the journal's aims and objectives. From the way that Dr Enlander kept adding more illnesses to the list it seemed as though policy were being formed on the hoof.

    Why had the initial announcement not set out the intention to include illnesses beyond the specific professional interests of Dr Enlander and his six editorial board members (cited as "CFS/ME, Lyme Disease and Fibromyalgia").

    Why try to defend the choice of name on the grounds that CFS groups would complain if the journal were called "ME" or that the immunologists would complain if it were called "CFIDS" if the scope of the journal was intended to encompass all of the following:

    "ME, CFS, CFIDS, Post Viral Fatigue, Post Polio Fatigue, Lyme Disease, Multiple Sclerosis, Erlichia, Babessiosis, rickettsial disease and "other illnesses where fatigue is present"

    (with the rider)

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


    A journal which was intended to include all the above plus (unspecified) "other illnesses where fatigue is present" would not in any case be well served with either the name "ME" or "CFIDS," so you can drive a coach and horses through that argument.

    "In making a diagnosis all of these must be considered." begs the question: were these additional specified and unspecified illnesses proposed to be included because they were differential diagnoses to ME, CFS, CFIDS or were they being included because the journal's remit was the study of fatigue across multiple illnesses, for which ME, CFS, CFIDS were one example.


    Which brings me back to the point I made earlier:

    if the objective of this new Fatigue journal is to provide a platform for papers and articles on fatigue across a wide range of illnesses, behavioral disorders, aging, sports medicine etc but is also

    "a journal that will be receptive to all scientific papers on CFS/ME"

    I don't see the logic there, either.
  20. Ember

    Ember Senior Member

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    This seems to me like part of a “fatigue backlash” that's been going on since the publication of the ME-ICC: “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.”

    Will the IACFS/ME next be removing its items under “Controversial Issues:”
    http://www.iacfsme.org/WhytheNameofAnIllnessisofImportance/tabid/100/Default.aspx;
    http://www.iacfsme.org/CFSNameChange/tabid/99/Default.aspx?

    I've wondered why the CAA has been posting Jenny's PEM articles now, indicating all the while that these posts were promised in 2010 and written before the end of 2011 (http://www.research1st.com/2012/05/24/pem-power-to-the-people/). It's been almost a year now, yet the IACFS/ME still hasn't managed to update its section on case definitions: http://www.iacfsme.org/CaseDefinitions/tabid/88/Default.aspx. (Its Primer, of course, reverts to the CCC.) Turf wars?

    The evening before the Iime Conference, “Norwegian journalist Jorgen Jelstad gave a quietly firm and inspiring talk about the importance of words in describing, depicting or characterizing this illness - 'Words Matter'” (http://cfspatientadvocate.blogspot.nl/2012/06/investinme-roundtable-discussion-may-30.html). That would make interesting reading.

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