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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Article: CFS Hits Big Time "War on Mystery Disease" on Front Page Wall Street Journal

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 12, 2011.

  1. CBS

    CBS Senior Member

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    Agreed, even Suzanne Vernon said the original CDC study was designed (intentionally or otherwise) not to find XMRV.

    As Alter said to Gill, "You first have to decide that this is a disease worth studying."

    Rather, from some corners (eg. Stoye ". don't expect much more research into disease association") what we are getting is lip service to keep the angry "tenacious" mob at bay.

    I agree with Gracenote - not helpful. We've seen too many careless words (that perhaps conveyed more than the speaker intended to reveal?) over the last several weeks.
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  2. SOC

    SOC Moderator and Senior Member

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    I think the reconciliation depends upon a single word missing from your quotation. The truth is: "Good science takes time".

    I, with very little carpentry skill, could hammer together a "table" from plywood and 2x4s in a matter of minutes. The creation of a beautiful piece of furniture that most people would want in their living room takes much longer. Good work in most fields requires careful and thoughtful design, selection of quality supplies, careful attention to detail in the construction, strict quality control, and well planned and executed presentation and delivery. Rush and/or failure at any of these steps is likely to produce a lower-quality product.



    Good science takes time.
  3. Sing

    Sing Senior Member

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    I think these journalists who want to keep their jobs, like Marcus and Tuller, write in a manner which straddles the fence, so whichever side seems to be winning later on can't accuse them of being entirely on the wrong side. This is part of "on the one side....and on the other..." type of journalism which took over from an era I am probably only imagining in which getting at the facts and the truth was what mattered. To their credit (here I will do a little "on the one hand....and on the other...") Marcus and Tuller have followed this story for a while and gone farther into it, but it looks to me as if each of them follows a "cover your behind" approach. One of the ways this is done is to make the text complicated and run back and forth between sides, with incomplete facts and quotations. So afterwards, either side can find some reflection and sympathy towards their point of view. Hopefully, in this approach, no one is completely alienated and the journalist stays employed. This is my opinion, my "reading". What I would prefer is the closest possible adherence to the facts and an in-depth knowledge of this situation. Just like "good science", this form of "good journalism" would do a lot to advance the field of understanding--and so, to action.
  4. insearchof

    insearchof Senior Member

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    Sing you touch on a very important point......the need for good thorough science AND journalism. We should hold journalists to the same high standards we expect from science on this matter -if not more so...as we have seen in recent times how the media can skew scientiific research.

    Frankly, what is the good in spending lots of energy and raising serious funds for research, if that is going to be hijacked by poor, misleading or down right deceptive media reporting...which adversely colours public opinion and kills off political and scientific interest. One-sided reporting in an article (ie: without providing detail which would explain the response/behavior of the CFS community) -is misleading and paints us as being unreasonable and almost irrational. This not something IMHO that can be taken lightly in view of the CDC research that was recently published after their failure to find XMRV, which effectively said that we were all suffering from personality disorders!

    Journalistic codes of ethics in some countries deem misleading reporting as a breach of the code which would justify action being taken in the form of a complaint against the journalist responsible. Depending on complaints handling procedures of the professional bodies or media watch dogs that oversee these complaints, the paper can be ordered to correct damaging perceptions by publishing a more fair and accurate article.

    This is another advocacy tool that can and should be used where appropriate-especially as investigative journalistic pieces are few and far between and soundbite journalism is the norm -due to time and newspaper space being premium.
  5. Wayne

    Wayne Senior Member

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    From the WSJ article:

    I thought this was a good article. I think the above comments about the somewhat "seedy" scientific process surrounding XMRV are pretty revealing. I don't share the concern of some that it's not in our best interest to be seen as questioning the science or the "rate of science" regarding XMRV research. I don't necessarily believe the public is going to "side with scientists".

    Though most articles we've seen printed in mainstream media are not going to be exactly as we would prefer, my own overall impression is that ME/CFS is gaining credibility with each passing article, and with each passing day. I believe we're turning the corner, and it's unlikely we'll be going back. I say this as a long-term PWC, and can well remember a very long interval of time when only one or two articles per year might reference CFS in a slightly helpful manner. I just don't think we'll ever go back to those days; the cat's out of the bag.

    One hope I do have is that effective leadership will emerge to take advantage of the opportunities that may arise, and to be able to pivot nimbly as conditions warrant. I'm mostly referring here to the possibility that XMRV may not be shown to be causative. There are so many other avenues that can be pursued to argue for increased research funding if that turns out to be the case. I hope there are "talking points" being put together for multiple scenarios no matter what unfolds.

    Wayne
  6. currer

    currer Senior Member

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    Hi,
    I've just read through the newspaper article and comments and I want to make two points which have not been made.
    1. The assumption by many of the respondents that more research and money spent on ME will result in getting people back to work and ecomomically active again so that research will be to the benefit of society.
    That is not necessarily so. Most chronic diseases can be ameliorated by treatments but not cured.
    Parkinsons and MS patients for example are still sick even with currently available treatments.
    In this instance there may not be a motive for government or business to recognise ME/CFS as a real illness.
    It may find itself having to pay welfare benefits and honour health insurance agreements but still have a million sick people on its books that it has to recognise as sick but cannot cure and get back to work.

    2. The Lo/Alter paper has the following interesting political timeline;

    Lo/Alter paper sent for review 23 march 2010
    June 30th 2010 CDC and Alter paper withheld.
    July 1st 2010 CDC paper published.
    July 8th 2010 UK decision made to ban blood donation from CFS patients. (answer to parliamentary question)
    August 23rd 2010 Lo/Alter paper published.
    Nov 1st 2010 UK blood ban imposed.

    The furore over the non-appearance of the Lo/Alter paper was not just because it had been withheld for checking as suggested in the WSJ article but because while the paper was "disappeared" a number of governments revised their health policy on ME/CFS and imposed blood bans on CFS donations. As you can see the British government made its own decision well in advance of the publication of the Lo/ Alter research and then compounded the mistrust with which it is viewed by denying that the reason for the ban had anything to do with the paper's findings.
    It suggests that the results and implications of the Alter paper were secretly shared with interested governments so that their health policies could be in place before any embarassing revelation became public.
  7. insearchof

    insearchof Senior Member

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    Hi Curer,

    So in a nut shell ..because there is no guarantee of a cure or hope for sufficient improvement that might see people return to the workforce, then there is no point in allocating funds to try for such outcomes? I don't quite understand this because as you point out there is no cure for MS, and yet it is heavily funded.

    There are people with this illness who are XMRV+ and who have responded to preliminary treatments to such an extent that they have indeed, been able to return to the workforce. So the early indicators suggest, that what the respondents have proposed is much more than a hypothetical assumption. Accordingly, calls for more $ for research and clinical trials on the basis of a return to work and lessening the economic burden on the state, do not seem misplaced at all, but are, to my way of thinking a logical step forward.
  8. currer

    currer Senior Member

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    Indeed they are a logical step forward. But that does not mean that there will not be some loosers in the process who may not like your logic.
    As ME/CFS is so common the initial economic cost of recognising it will be high, even if down the line there may be some gains IF people can be treated and got back to work.
    This is a cost to the state in addition to the cost of all the other chronic illesses it recognises at present - a new cost.
    One health insurance company has stated that CFS claims are already its' second most expensive category.
  9. insearchof

    insearchof Senior Member

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    Curer, I am not so sure that initial costs of recognizing it will be high ie: testing blood supply - as the blood working group moved quickly by using existing HIV tech and resources to make the quick advances to date. Regarding the fear that this may present to insurers....well I doubt that they will treat XMRV any differently to HIV...the test will still be one relating to the degree a person is incapacitated by the illness, and from what I have been told, insurers do not regard HIV as a permanent impairment for insurance disability purposes.

    Social infrastructure in place for persons with HIV might need expansion to accommodate services for XMRV, but they won't be starting from scratch. Certainly, given estimates of persons that might be possibly infected, this will require substantial economic funding from governments. However, make no mistake about the current interest and influence that big pharma will play in all of this and the huge profits they stand to make from medications. Should the economic impact be overwhelmingly burdensome, then it might force new ideas about social responsibility for health care ie: % of XMRV profits from XMRV big pharma drugs going towards offsetting some costs. With an aging population all ready placing the health systems around the world under pressure, not to mention illnesses associated from unhealthy living - radical pressures might require radical new approaches.
  10. currer

    currer Senior Member

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    I agree with you.
    What I find so problematic at the moment is the lack of vision in our current crop of politicians. We are facing radically new challenges of which CFS/XMRV is only one. I do not think they are capable of new approaches. So I suppose in the short term I an cynical. But I do believe eventually there will have to be different political solutions found. I just wonder haw long it will take. There is no sign our present cash strapped governments want any further challenges to shake them up.
  11. markmc20001

    markmc20001 Guest

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    While at the park yesterday, somehow the topic of news came up with a guy I had just met at the picnic. I mentioned I didn't necessarily trust the news media. He immediately turned red and responded "tell me about it, I'm a scientific reporter". Not sure of his words from here but basically said something to the effect. "I can't tell the story exactly how I feel or I will loose my job." "I work for the editor". I asked for specifics and he wouldn't go into further detail. I don't think he wasn't currently working.
  12. insearchof

    insearchof Senior Member

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    Hi Markmc,

    Interesting, but not surprising. My initial comments on this article suggested Editorial control. it is also why I suggested that advocacy efforts target journalists - which would affect the editors and newspapers directly. See post #25.
  13. markmc20001

    markmc20001 Guest

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    I was actually responding after reading your comment, but didn't quote. still early here. :)
  14. Sing

    Sing Senior Member

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    Wayne, I agree with you that "the cat is out of the bag", our disease is being noticed, is getting more coverage, and some of it is accurate and helpful. Like Insearchof and Markmc20001, I hope we will work towards good journalism, as well as good science!
  15. floydguy

    floydguy Senior Member

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    Yes, but the bad science jeopardizes funding and commitment to the good science. The point is that those folks who are doing the two week studies and declaring nothing to see here this is a waste of time are risking the efforts of the good science. I am also wondering why real scientists don't stand up and slam the two week study people as bad scientists. What's up with that?
  16. Hope123

    Hope123 Senior Member

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    I suggest people e-mail Ms. Marcus articles or links (or post on the site) about what they would like her to consider writing about. People's personal stories are OK but what would make more of an impact would be concrete specific evidence of how ME/CFS has been viewed by the government, universities, etc. to support WHY patients have acted the way they do.

    I'd also suggest if you do write her, the articles and links be "impersonal" and preferably not from a site that could be viewed as "biased." E.g. don't just write about the misappropriations scandal with the CDC, send her the link from the Washington Post reporting on it so she can see for herself. Show, don't tell. I've haven't sent this particular point yet so if someone wants to do it, go ahead. Take a "just the facts, ma'am approach."

    On a larger scale, I don't usually read the WSJ but some might want to consider the readership and target their responses appropriately. For example, WSJ likely has many business readers so they might not be as interested in personal stories but pharma might be interested in developing meds for $$$ or lawyers may be interested in litigation. Some people have written negative comments about the insurance industry, which, while they are true, might not be attractive to WSJ editors, advertisers, etc. Think about who benefits or profits from this illness and try to attract them.

    I usually read the NYT so I know that paper seems more interested in fighting corporate corruption, political scandal, personal stories than perhaps the WSJ.

    I don't think media or businesses should be viewed as "allies" or "friends" although some might turn out to be in the long run. Media will praise or trash things/ people as appropriate to gain viewers/ readers/ advertisers. Businesses will do what needs to be done to generate a profit. The key is figuring out how to align our interests with their interests.
  17. Wayne

    Wayne Senior Member

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    Hi Floydguy,

    Couldn't agree with you more. In the same vein, I've wondered why responsible members of the psychiatric profession have not taken a firm stance against the psychologization of ME/CFS that's been going on for the past 25-30 years. Why are they sitting on their hands while a travesty of this magnitude is taking place?
  18. currer

    currer Senior Member

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    I have wondered that too, Wayne. Given the potential for abuse thet exists in psychiatry (and historic examples of abuse of patient groups, sometimes with a political motive) I would have thought that psychiatrists would be aware of the need to police themselves.
  19. Wayne

    Wayne Senior Member

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    Good points Hope. I was wondering if Ms. Marcus has written about the recent spinal fluid analysis findings. (Anybody know?) Her articles seem to center around XMRV, but it would be nice to see certain elements of the "bigger picture" injected into them as well. My biggest concern is that interest in ME/CFS will drop considerably if XMRV doesn't prove to be causal, and that doesn't need to be the case.

    Wayne
  20. floydguy

    floydguy Senior Member

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    Wayne, I agree. Certainly XMRV is important but it shouldn't be the only thing that's discussed. It would be nice if we could get more topics out there.

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