1. Patients launch a $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!
The Fable known as The PACE Trial
Graham, Janelle and Bob, have once again excelled themselves with their latest take on the 'poisoned apple' that was the PACE Trial...
Discuss the article on the Forums.

Lancet editorial: Chronic fatigue syndrome: going viral? (avail. online Sept 16)

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Rrrr, Sep 16, 2010.

  1. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    That was rather jarring, I agree, and its difficult to explain in the context of the overall article. They could have meant that "CFS" is not A disease. They basically said so just above that - stating that it is heterogeneous collection of different disorders - so it is not 'A Disease' (but they did throw physical in there). Or they could have meant just what they said.....the article really did seem like it was written by a couple of people trying to come to terms with their different ideas about CFS.
  2. leela

    leela Slow But Hopeful

    Messages:
    2,368
    Likes:
    2,695
    Couchland, USA
    So it does, indeed...but thank you for steering the general attention back to the positive qualities of the article. I think as a collective, we have been so abused for so long by both the medical and journalistic communities, we can be a little overly sensitive....
  3. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    505
    Los Angeles, CA
    I thought it was a perfectly reasonable, innocuous, mild kind of summation of the research - although very Brit-centric in that it gave much more weight to the Scottish study of the children than to the two positive US studies about XMRV/MLVs - until you get to the last paragraph.

    The last paragraph was such a shocking twist because it so completely ignored/negated all that had gone before in the editorial. I expected the last paragraph to say something like "Much remains unclear and unconfirmed, etc etc." Which would have been a perfectly fair thing to say.

    But the two statements that poison the entire editorial, to me, are:

    "There is a general consensus that CFS is a heterogeneous family of disorders, and it seems most likely that these disorders arise from a constellation of pathophysiological causes...CFS is still far from being a well-defined entity." There is no such "general consensus." This statement is deliberately constructed to broaden and blur the concept of "CFS" far beyond anything resembling a meaningful clinical entity, even far beyond the confusion engendered by the Oxford criteria or the empirical definition. This kind of statement strikes me as a "divide and conquer" tactic on the part of those who want to cling to the psychosocial explanation; hoping that, even if *some* CFS patients wind up having a well-defined disease with a distinct pathogenic cause, there will still be a lot of people left in the wastebasket who deserve to be there because their disease is still vague, ill-defined, heterogeneous...and nobody need be called to account for having left them there all these years.

    The other statement, the really offensive and unforgivable one, is "The results in the Archives of Paediatrics and Adolescent Medicine received great media attention. But they do not prove that CFS is a physical disease." This is nonsense on the face of it. I can easily tell that this whole last paragraph is the result of a strong desire to salvage the "psychosocial" hypothesis from the wreckage; they could have least been more honest about their intentions by saying "these results do not prove that *all* CFS is a physical disease." But the way it reads now makes no sense at all. And it's a hell of a shock to arrive at the last paragraph, after the preceding paragraphs about new evidence and new discoveries, and find that we're still supposed to be back at Square One, arguing whether CFS is "all in our heads." If objective findings of "oxidative stress and white blood cell apoptosis" aren't "physical," what the heck are they?

    If were responsible for copyediting this editorial, I would queried the hell out of that last paragraph. It goes beyond hypocrisy into the utterly nonsensical.
  4. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    I think this response is pretty 'lazy' actually. You mention the two problematic parts of the piece and ignore anything that's positive - hardly a rigorous response to the piece.

    I can show you several ways that this piece is not an attempt to build a psychogenic model of CFS; we could start off the lead paragraph that set the tone for the piece

    cite the evenhanded way they treated the XMRV results

    and go on to
    I don't think that's a code for 'psychogenic illness'...

    For sure the article has its problems but I, for one, would have never expected Lancet to be suggesting that adolescent ME/CFS is caused by a viral infection! If you can fit that into your purely psychogenic interpretation of the editorial go right ahead but I cannot. :)

    Actually researchers DO need to prove that an illness is a physical disease - rather than a collection of diseases. That's why the search for biomarkers has gone on for so long and continues.
  5. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    505
    Los Angeles, CA
    It's a problem of plain English. If they had meant "this collection of diseases need to be better characterized," that is what they should have said. If they had meant "These results do not prove that CFS is a single clinical entity," that is what they should have said.

    To question whether CFS is a physical disease means, simply enough, that you are are questioning whether CFS is a physical disease. No reading between the lines necessary. I can read between the lines to make my best guess about *why* the last paragraph of the editorial is illogical, but it's not necessary to know anything at all about the politics, history, or the disease itself to read the plain English of the editorial and see that it contradicts itself.
  6. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    I'm afraid I have to disagree with this as well. The general consensus in my opinion is that CFS is a probably a group of heterogeneous disorders (subsets) and it has been for a long time. Researchers and patients have talked for years about the need to find the subsets in this disorder. Once that happens then the patient community will be split up and it will be split up into those with a physiological explanation for their disorder and those who do not have that; that is the nature of biomarkers not the result of a psychosocial conspiracy. Those people left over should have a better chance of figuring out what's wrong with them since they won't have the others in their group to obscure their results.

    That is what we want isn't it? To define groups of people with similar illnesses so that researchers can actually find out what's wrong with them. The psychogenic group actually has an opposite aim than that; they say they are all the same kind of patients and therefore there's no need to study them further and break them up into subsets.
  7. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    Yes but you can also read the rest of the piece and easily glean out other interpretations about the editors intent. Since the article is rather muddled it depends on what you want to focus on; this editorial as possibly the emergence of a new kind of thinking in Lancet or more of the same.
  8. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    There is room for any number of interpretations in this piece. I would argue that there are enough viewpoints presented in this piece to conclude that Lancet itself is unclear how to interpret ME/CFS - according to what they wrote it could be; a virally caused illness, it could be a collection of illnesses caused by different pathophysiological problems, not a physical disease (whatever that means) or a disorder with psychosocial and pathophysiological components.

    They aren't saying the results are not physical - they are talking about a single physical disease entity. Just because you have physical findings does not mean that you've found a 'physical disease'. This is particularly true with oxidative stress because it is common; if you throw people with diabetes or Parkinson's disease or any number of other chronic illnesses into a group you will find that they all have increased rates of oxidative stress - but that doesn't mean that you can say that group has "ABC' disease. That group does not have the "ABC' disease; they have a bunch of other diseases all of which have high rates of oxidative stress.

    That is the conundrum facing CFS researchers; do they have 'CFS' or do they have a bunch of disorders masquerading as CFS because the research community has not dug deep enough into CFS to determine what they are?
  9. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    I didn't think I was being lazy in my response - I just didn't want to waste any more of my energy on this garbage Editorial than was necessary. However I appreciate that you have taken the time to disagree with individual points so it would be impolite of me not to reply.
    Good. I like it!

    Actually there are no identifiable subsets that have been substantiated by the research community; if their were we would have two different disorders.....maybe XMRV will be the first.
    I think you're very suspicious! Doesn't these disorders imply subsets??? Isn't what we think occurs in ME/CFS?

    L
    It may be that the infection was terminated! The Dubbo studies looked at four different infections and found that, so far as they could tell, the infection was terminated - they couldn't find evidence of it afterwards. They also found very high rates of cytokines early in the disease process. None of that means that CFS is caused by psychological problems....but it is important that that is what the research shows to date. Now, maybe XMRV is there in the wings to bollix things up. Or maybe the herpesviruses step in for some reason. Or maybe that cytokine blast dysregulates immune system function... Or maybe the Dubbo studies missed a central nervous infection...its a wild world! Lots of opportunities out there if we can get the research.


    I would not base anything on that little slip up! My goodness - I would say focus on the fact that they believe research into CFS should get 'high priority'.

    What?

    What?

    Indeed. I guess we have a difference of opinion. I'm sure we would both be delighted if my more positive interpretation turns out to be more accurate ;) Time will tell.
  10. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    505
    Los Angeles, CA
    Well, I gave my professional opinion about why the writing was bad and self-contradictory: I do think the editors of a prominent medical journal should be held to a much higher standard than this muddled, condescending mess. Cort, I believe you're giving them **way** too much benefit of the doubt, and reading into the editorial a much more sophisticated understanding of the complexities of the science than I think is actually present. The editorial could have been a lot worse, but it was bad enough.
  11. Wayne

    Wayne Senior Member

    Messages:
    2,179
    Likes:
    1,243
    Ashland, Oregon
    Hey Cort,

    I agree with you on both of these counts. It did seem to me Lancet was trying to present a new way of looking at ME/CFS. But they also couldn't seem to let go of the long-held belief systems associating ME/CFS with psychological disorders.

    You refer to the article as muddled, which I think is a fairly kind way of putting it. Where I come from, it's more accurately referred to as "talking out of both sides of your mouth." There just seems to be an "undercurrent" in this article I'm not at all comfortable with, and which keeps me from giving them the benefit of the doubt.

    Even if we accept the more benign adjective of "muddled", that is still way short of what I would consider a reasonable bar to meet when publishing in a medical journal. Clear thinking, writing and articulating should be mandatory, so there's no room for misunderstanding.

    It seems to me they may be making (by necessity) a begrudging course correction on ME/CFS. Given the long history of how ME/CFS has been viewed within our modern medical culture, I suspect in some ways it's a painful and clumsy process for them; hence the muddled article.

    Best, Wayne
  12. Dolphin

    Dolphin Senior Member

    Messages:
    6,472
    Likes:
    4,754
    Link to Lancet editorial from 1996

    Link to Lancet editorial from 1996: http://www.lymediseaseaction.org.uk/news/lancet_96.htm

    Note: there was one error which spoiled things a little: the Task Force report was from 1994 - 1984 (12 years earlier) would have been a bit like ancient history.

    Since 1996, it's mainly been annoying coverage in the Lancet so I'm inclined to think this piece was better than not having. I haven't read this whole thread but GET and CBT based on GET are (seen as) the evidence-based treatments for this condition and virtually everything else is seen as speculative by the establishment. It's not that hard to have better coverage than that.
  13. Dolphin

    Dolphin Senior Member

    Messages:
    6,472
    Likes:
    4,754
  14. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    505
    Los Angeles, CA
    OH NO, COMIC SANS!!!! My eyes hurt. I can't read that.
  15. Dolphin

    Dolphin Senior Member

    Messages:
    6,472
    Likes:
    4,754
    Compared 2010 editorial with last piece - a review from 2006 (link to free full text)

    This review came in after the Goudsmit et al piece on editorial bias in the Lancet but would surely have added weight to the argument:

    Free full text at:
    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0601D&L=CO-CURE&P=R3906&I=-3
  16. Dolphin

    Dolphin Senior Member

    Messages:
    6,472
    Likes:
    4,754
    For anyone who has this problem: one could always copy and paste it and then change the font.
  17. leela

    leela Slow But Hopeful

    Messages:
    2,368
    Likes:
    2,695
    Couchland, USA
    :tear: Evening now made.

    Edit: I took this purely as a comment on typographical esthetics. I so did not mean to laugh
    if your eyes really hurt!!
  18. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    505
    Los Angeles, CA
    Ha! Actually when I'm severely PEM'ed my eyes *do* hurt...but I was mainly snarking about the use of the ultimate credibility-killer font. (And I do find it unreadable for blocks of text.)
  19. anciendaze

    anciendaze Senior Member

    Messages:
    833
    Likes:
    780
    While some comments in this topic have gone over the top, as usually happens in on-line discussions, I remain somewhat incensed by this passage.
    This is simply a comment in support of poor diagnosis based on the Oxford definition. Nobody at The Lancet seems to have noticed that the much-maligned diagnosticians across the Atlantic, who were said to have created an imaginary disease, were able to predict the presence of a virus with much higher accuracy than typical diagnoses of a different problematic illness like MS, or even a well-known mental illness like schizophrenia.

    Yes, CFS, as currently defined in the UK, is simply a grab bag. No, that is not where funded studies should be directed, which is precisely what they propose. When what you have been doing for the past so many years has utterly failed, you should try something else. As long as you have a hold on a thread of a lead, you follow that thread until the whole problem unravels. Not one thing in that editorial appears to specifically support the kind of research which upsets apple carts. With this kind of leadership, you could see another 20 years of analyzing things before taking action.

    It is true this is progress, compared to past pronouncements. The ship is changing course, ever so slowly. Nothing irreversible has yet been done. Not one thing in that editorial suggests the need for changes in anything but funding. The U.K. medical establishment has considered the possibility of physical disease repeatedly, and each time neatly disposed of the problem without undue bother, or concern over remaining anomalies. They seem prepared to do so again.

    This is a sly piece of writing which won't upset anyone who really counts, like the MRC. Nothing has been proved. Questions remain. We've been through the virus business with EBV, and nothing came of it. There are so many factors we may never sort this out.

    The only people denied smug complacency are those with new results, or illness. The flimsy basis of existing theories and treatments goes politely unnoticed.
  20. xrayspex

    xrayspex Senior Member

    Messages:
    659
    Likes:
    70
    u.s.a.
    KFG
    I will sign off on that letter and I will do it with my focking credentials behind it

    (not that I'm in the medical field but am a social worker, I am sick of the games too, ready for stand down)

See more popular forum discussions.

Share This Page