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!
A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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. floydguy

    floydguy Senior Member

    Messages:
    650
    Likes:
    238
    FYI - Fred Friedberg's View from his website:

    My View

    Improvement and Mind-Body Illness

    I view fibromyalgia and CFS/ME as mind-body illnesses that have both medical and behavioral aspects. I do not view these conditions as totally medical or totally psychological, but rather as a combination of the two.

    In general (but not always), the lifestyle and stress reduction treatments recommended here are more effective over time than medications for these conditions. I certainly do not rule out more effective medical treatments, as the research progresses, but we do not have them now.

    So individuals with these conditions need not “wait” for medical science to improve their lives. They can learn to self-manage their illnesses in a very effective way with the techniques described in my book and taught in my sessions and workshops.

    Fred Friedberg, PhD

    I think I'll "wait" Fred. I wonder if he is delusional and believes he is actually helping or just laughs as he extracts money from the government and desperate patients.
     
  2. Dolphin

    Dolphin Senior Member

    Messages:
    6,870
    Likes:
    6,162
    For those that don't know, so is Fred Friedberg.
     
    taniaaust1 likes this.
  3. floydguy

    floydguy Senior Member

    Messages:
    650
    Likes:
    238
    Who diagnosed him? Under what criteria? Does that give him carte blanche to make stuff up which suits his business model? When crackpots come to this site and announces they have cured themselves of ME/CFS through a 5 step program they rightfully get hammered. When a PhD does the same thing, it's okay?

    Apparently Fred has a book you can buy so you too can have boundless energy and get on with your life.
     
  4. Dolphin

    Dolphin Senior Member

    Messages:
    6,870
    Likes:
    6,162
    The people behind the journal might have predicted problems and still gone ahead with as they couldn't think of a better solution.

    ---
    Personally, I think it is useful to have a journal that will take papers on somewhat arcane issues relating to ME or CFS. The Journal of CFS did this. For example, Ellen Goudsmit had an article published on editorial bias in the BMJ. The Bulletin of the IACFS/ME did likewise when the Journal of CFS folded.

    I know a patient with various degrees who currently is having trouble finding an outlet for a paper they have written. Money is also an issue for him: submission fees can be over $1000 for open access journals. This new journal will be free.

    I have learned over the last nearly two decades (since being diagnosed) that in the medical world, statements/evidence/data don't have a lot of status unless they are published somewhere. So if you want to have a letter published in the BMJ, Lancet, etc. challenging dodgy studies, you need to quote published papers. Similarly, NICE and other evidence-based reviews concentrate on the published literature. So I think having such a journal that publishes papers on arcane topics relating to ME or CFS is important. And, given the Bulletin of the IACFS/ME didn't seem to be getting enough submissions to be viable, and perhaps because of the low volume of papers, might have struggled to get a PubMed listing, it seems something likely had to be done to broaden what would be published in such a journal.
     
  5. Esther12

    Esther12 Senior Member

    Messages:
    5,386
    Likes:
    5,894
    I'd tend to assume that a not very good journal related to CFS could still be better than nothing.

    And it's possible that the new journal will be brilliant!

    Three years ago, I'd have not understood opposition to this proposed journal at all. Since then, I've come to see that giving people the benefit of the doubt, or just hoping for the best seems to go less well with CFS than with other areas of life!

    Didn't Friedberg do something critical of PACE? It's not like he's one of the quacks claiming that PACE showed a recovery rate of 30-40% for CBT. At this point I don't think it's sensible to believe that CFS/ME is a mind-body problem, and immunological problem, a psychiatric problem or a neurological problem... there's just not good enough evidence for any of them, and it seems really unlikely to me that any of the criteria for CFS will be the result of any one of those categories.

    It would be good to have an outlet for even-handed discussion and debate about the matters that surround CFS though, and perhaps this journal could be that.
     
  6. Dolphin

    Dolphin Senior Member

    Messages:
    6,870
    Likes:
    6,162
    Yes, here is what he said:
    http://iacfsme.org/PACETrial/tabid/450/Default.aspx

    IACFS/ME Statement on the PACE Trial:The Issue of Illness "Reversal"
    February 24, 2011
    The much publicized UK-based PACE trial (Lancet, Feb. 18th; http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext) reported positive outcomes for patients with CFS/ME who were treated with cognitive-behavior therapy (CBT) or graded exercise therapy (GET) in comparison to a standard medical care condition or an adaptive pacing condition. The adaptive pacing condition was intended to help patients adjust their activity levels according to their available energy (based on envelope theory). The findings were similar to previous CBT and GET studies in CFS. This trial was unique in incorporating a pacing condition and recruiting a very large sample. That said, we have concerns about how the trial was reported.
    We certainly support any effective treatment for CFS/ME, medical or behavioral. Behavioral interventions are helpful for a number of major medical conditions (cardiovascular disease, diabetes).
    Illness “Reversal” and Behavioral Intervention
    The most fundamental concern we have is focused on the type of causal model that was linked to the CBT and GET conditions in this study. The model, based on the application of cognitive-behavioral and physical conditioning principles, predicts that properly designed behavioral or exercise interventions will “reverse” the CFS illness. Not improve symptoms/functioning or provide better management, but “reverse” the illness. This term implies that the illness can be cured (or something close to it) with behavioral techniques.
    If one assumes such a direct correspondence between behavioral treatment and curative outcomes, then the illness is by implication a psychiatric condition. Once this assumption is made, then research efforts to assemble a biomedical model of CFS are more likely to be delegitimized. And the public’s perception of the illness as simply being tired is again reinforced. Perhaps this is the most unfortunate aspect of the PACE trial: The omission of any reference to the medical complexity of this illness.
    Furthermore, when one compares the study goal of illness “reversal” to the reported outcomes, the support for such reversal is modest at best: 30% of GET and CBT patients achieved normative physical functioning-- but the 30% figure was in comparison to 15% who achieved such normative function in the standard medical care control condition.
    Thus a more accurate statement of this finding would be: An additional15% of patients in the CBT and GET conditions achieved normal functioning in comparison to standard medical care. The critical standard of clinical significance is that a therapy results in restoration of normal function. But their own data do not support reversal outcomes above and beyond standard medical care for the vast majority of their subjects in the CBT and GET conditions.
    Question of CFS/ME Diagnosis
    In addition, the 15% advantage over standard care for patients in CBT and GET can be further questioned given that at least 1/3 of all patients did not meet the strict international criteria for CFS (Table 1 in study)—the diagnostic protocol most often used in published studies. Strict criteria for CFS are linked to poor prognosis and conversely, subjects who don’t meet strict criteria for CFS have better outcomes. So the PACE trial folded in a significant number of subjects who do not have CFS according to standard criteria. Again this dilutes the significance of their findings as it makes it more difficult to generalize to the population of people who do have CFS.
    To put behavioral approaches in context—they can be quite helpful, but they hardly meet the standard of clinical significance that would elevate them to curative interventions. If this had been made clear in the study, it would have provoked far less controversy and debate.
    Media Mis-reports
    Finally, the media message from this study has often been: “Exercise is good; Rest is bad.” Although the PACE trial authors did not issue such a statement, I think there is some responsibility to explain to the media that this type of recommendation is simplistic and potentially harmful for patients with CFS/ME. Activity and exercise recommendations must be based on a thorough evaluation and a sensitive individualized approach, not the broad brush that has become the take home message of this study.
    Fred Friedberg, PhD
    President IACFS/ME
    ------
     
  7. floydguy

    floydguy Senior Member

    Messages:
    650
    Likes:
    238
    However, going back to the original point: Who was the rocket scientist who came up with "Fatigue" as the rallying call? Something along the lines of a reference to "Neuro-Immune" would be a lot more appropriate and less of a stick in the eye. I would think that this would be taken somewhat more seriously and might attract studies from MS, Autism, Lyme, etc.

    That's what happens when you "broaden" the appeal; you make it so irrelevant it means nothing, which is the playground of snake oil salesmen. Perhaps we should invite some astrologers to submit some studies on fatigue?

    I like the idea of "Sick". That should be broad enough to attract plenty of papers.
     
    taniaaust1, beaker and Wildcat like this.
  8. alex3619

    alex3619 Senior Member

    Messages:
    7,710
    Likes:
    12,577
    Logan, Queensland, Australia
    Hi Floydguy, I would vote for Neuro-Immune as a name if it were offered. Bye, Alex
     
  9. taniaaust1

    taniaaust1

    Messages:
    8,265
    Likes:
    5,221
    Sth Australia
    i have another good name which would of been far preferable .. "Journal of Chronic Disease". Its complete bullshit that they would need to call a journal for us "Fatigue"
     
  10. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,694
    Likes:
    10,153
    Amersfoort, Netherlands
    I'm more of favor of calling it "Chronic". Then we could giggle about the double meaning :)
     
    biophile likes this.
  11. Ember

    Ember Senior Member

    Messages:
    1,753
    Likes:
    1,861
    Unfortunately, we won't likely be offered “Neuro-Immune” or “Complex Chronic Diseases.” Unlike the ICC panel, who opted for a more restrictive case definition in order to to further the science, the IACFS/ME has opted for a less restrictive symptom definition to increase the numbers. You'd almost think they'd taken their inspiration from the CDC:
    It's an umbrella approach, with a promise of subcategories later: “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.”

    Since we patients have already suffered through paradigm wars visited on us by the Wessely School and others, we might also need a dedicated section for battle fatigue.
     
    taniaaust1 and Wildcat like this.
  12. Don Quichotte

    Don Quichotte Don Quichotte

    Messages:
    97
    Likes:
    190
    The answer is definitely-yes. If it is a good journal with a high impact factor.

    Fatigue is an important symptom which for many years was ridiculed and not taken seriously by the medical community. It is very poorly understood, ,very easily ignored and very easily attributable to non-physiological factors.

    In general the broader the focus of the journal the more likely it is to have a high impact and submissions from good research groups.
    Giving place for different view points and controversies only makes it more credible. It also creates a true platform for the exchange of ideas and learning from each other.
     
  13. floydguy

    floydguy Senior Member

    Messages:
    650
    Likes:
    238
    If "Fatigue" Journal was being spearheaded by respected Cancer, MS, ME and other researchers then I might have a slightly different perspective. However, at the moment it appears to be driven by a psychologist specializing in mind/body illnesses who believes CBT is an important therapy in improving "fatigue". The platform that is being established is an exchange between those who either don't want to deal with fatiguing illnesses or want to profit from them with quackery.
     
    irwinsturtle, taniaaust1 and Wildcat like this.
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    I understand the rationale for a fatigue journal. However, on balance, I think it's a bad move. It drains scarce resources of IACFSME away from ME toward fatigue. It also seems to me that Fred Friedberg has lately sold out to an extent, having gotten major funding from NIH for his study of mental health tx for "CFS". He said something complementary about Dr. Unger lately in a news article.

    If they do this, they really need to make clear in the journal that fatigue and "CFS" are not synonymous. I don't think they will do a good job of this. In this letter, Friedberg conflates the two. He mentions "papers on fatigue (including CFS/ME)." Need it really be pointed out to the president of IACFSME at this stage that ME is not a subset of fatigue? Probably just sloppy drafting on his part, but being punctilious in not conflating fatigue and ME is principle #1 in advancing the science and knowledge of ME.
     
    irwinsturtle, taniaaust1 and Wildcat like this.
  15. gregf

    gregf Senior Member

    Messages:
    137
    Likes:
    36
    Sydney Australia
    The one thing that has done the most damage over the years is the word "fatigue".

    No one with our disease, ME, should have anything to do with a journal called "Fatigue".

    And that is besides the point that it is full of psycho-social yellow flags.

    If AIDS had been called Chronic Homosexual syndrome would the AIDS activists in the
    1980s, been considering sympathy with a magazine with such a name and attitude.

    Any one of us using the word fatigue is not part of the solution, but part of the problem.
     
    taniaaust1 and Wildcat like this.
  16. Ember

    Ember Senior Member

    Messages:
    1,753
    Likes:
    1,861
    This quotation, published by IiME, may be of interest to you:
    Please let me know if you find the translation from the book (EMEA: www.euro-me.org).
     
  17. Ember

    Ember Senior Member

    Messages:
    1,753
    Likes:
    1,861
    New journal aims to address fatigue in medical illnesses and specific environmental conditions

    Published on February 27, 2013 at 12:08 AM
     
  18. taniaaust1

    taniaaust1

    Messages:
    8,265
    Likes:
    5,221
    Sth Australia
    I cant remember if ive asked this before or not..but does this so called journal of ours (set up for CFS) also there for our other biomedical studies as well (not involving fatigue) and able to publish those too?

    Sad if the only medical journal easily accessable for most researchers is one called "fatigue".
     
  19. Ember

    Ember Senior Member

    Messages:
    1,753
    Likes:
    1,861
    Fred Friedberg writes (below), “We will also accept papers on chronic fatigue syndrome (CFS/ME), fibromyalgia, and related illnesses."

    Fatigue: Biomedicine, Health & Behavior

    Volume 1, Issue 1-2, 2013

    [​IMG]
    Welcome to our inaugural issue!
     
  20. Guido den Broeder

    Guido den Broeder *****

    Messages:
    278
    Likes:
    180
    Rotterdam, The Netherlands
    When the Journal of CFS stopped, I discussed the potential of a Journal of ME with Elsevier. They didn't think it was impossible.
     
    WillowJ likes this.

See more popular forum discussions.

Share This Page