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Gizmodo Article:The Battle to Finally Understand Chronic Fatigue Syndrome

Discussion in 'General ME/CFS News' started by lnester7, Nov 10, 2015.

  1. lnester7

    lnester7 Seven

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  2. SOC

    SOC

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    Unfortunately, this is a badly structured quotation of Mary Dimmock. While she did preface this with "To someone not familiar with it..." she seems to be saying patients are irrational and their objections show it if they're not careful.

    It's especially unfortunate when immediately followed by this paragraph
    Is Mary Dimmock here? Does someone have contact with her? If she hasn't read how she's been quoted, she might want to.

    This article starts out fine, but then appears to want to "balance" the argument by repeating BPS anti-patient propaganda. I think it reads rather oddly, giving a very mixed and inconsistent view of patients -- it's almost reads like @ljason is the only sane patient among us. ;)
     
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  3. Sasha

    Sasha Fine, thank you

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    I don't have the right sign-ins.

    Would someone (one person) like to post this:

    Thank you for your article. I’m sure no scientist would want to confuse harassment with the legitimate criticism of poor science.

    In the PACE trial, which you mention, claims that patients recovered after receiving psychological or exercise therapies were based on ludicrously low thresholds - for example, the recovery threshold for physical function was similar to that of the average for patients with Class II congestive heart failure.

    The petition calling for the retraction of these claims in The Lancet and Psychological Medicine has over 9,000 signatures in less than two weeks and has a target of 10,000.

    http://my.meaction.net/petitions/pace-trial-needs-review-now

    The brief, clear background pages to the petition make grim but fascinating reading. Scientists, especially, will be horrified.

    Emeritus Professor Jonathan Edwards of University College London has called PACE “valueless”.

    I urge readers to sign the petition.
     
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  4. lnester7

    lnester7 Seven

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    @Sasha I posted twice and they only posted one so if somebody can help Sasha Please!!!!

    Please keep it nice and make sure to keep them in our side, this must be the most read Blog ever. So tones of potential here. I ask the editor to consider an article on what is MECFS.
     
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  5. worldbackwards

    worldbackwards A unique snowflake

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    I don't think she's doing that and I'm not sure that what she says isn't fair comment. To someone who is on the outside, who doesn't know how a patient became ill, how they reacted to it, how supposedly "theraputic" behaviour made things worse, etc, they are unlikely to understand what is at stake here.

    Often, it is articulated in a way that presupposes this understanding, because it is such an intensive part of our lives that it's difficult to imagine that people can't see it for how it is. When faced with Oxford University, NICE, Kings College and the rest, an angry response to this, whilst entirely justified given both the political context and people's personal experiences of doctors, treatments and the way their illness responds, just looks like an angry rant in the face of the "reasonable" establishment, who have both power on their side and the fact that it isn't their life, and as such have less of a need to get worked up.

    The need for things to be "carefully articulated" is important. Perceptions matter here, regardless of the truth, and I think we need to remember that. Our enemies certainly do which is why they never forget to give the old "mental illness stigma" chestnut yet another run. The point to be stressed is not it's stigma that is the problem (we get that anyway), but it's utter valuelessness in terms of helping treatment, management and understanding.
     
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  6. medfeb

    medfeb Senior Member

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    Thank you for calling this to my attention.

    I agree that this is an awful framing of the conversation we had and also the quote is bad, especially in the context of the following paragraph. My point was that patients' appropriate objections to the focus on psychological treatment ala PACE is used as "evidence" that patients are irrational and anti-psychiatric. Not that patients are irrational but that patients are claimed to be as a way of delegitimatizing them.

    I also agree with your comments about the "balance" - in the end, its a muddle.

    Edit:
    Just noticed this is a second site. the original is on Mosaic which doesn't allow quotes. But Gizmodo does. I will comment there. Again thanks.
     
  7. lnester7

    lnester7 Seven

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    You have to log in I used my google account so it was just a click to register very fast and easy, This will be possible one of the most important publications for us, However it goes is a big deal how it is received.
     
  8. Sasha

    Sasha Fine, thank you

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    You might want to contact the journalist so that the article can be corrected - not everyone is going to read your comment.
     
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  9. mfairma

    mfairma Senior Member

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    This is a rather poor article and conflates a number of important issues, such as failing to give any real context on the definitional issues, equating statements about the heterogeneity of CFS with statements about the heterogeneity of ME, and underplaying the deep flaws of PACE, among others. Further, that she does not mention that PACE allowed patients to potentially leave the trial sicker than they entered and still be classed as recovered, but then goes on to paint the very same actors responsible for that trial and similar research as engaging in the disease in good faith is laughable. But, I won't go into a deeper analysis, because the flaws are obvious and the journalist seems to have arrived at her conclusions.

    I did, however, want to call out one little section that left me incredulous. The author accepts that Esther Crawley wants good faith debate about the disease, but doesn't question whether it is reasonable for her to equate FOIA requests with abuse or for her to attempt to circumscribe the nature of debate to exclude anything that might be described as an attack. It takes an astounding amount of credulity to reconcile such contradictory statements.

    “'You can question or debate, but no coordinated attacks.'” Who gets to define what is an attack and what is not? When you are being criticized, it is always going to feel like an attack, to one degree or another, but that does not necessarily make those attacks demonstrative of bad faith. If being criticized gives you the nuclear option to shut down all further debate, then where does debate even begin?

    When patients are portrayed as abusive of the rights of free speech for criticizing a disease model that they believe has no basis in reality or attempting to gain information about a deeply flawed study, most reasonable people, I would hope, would question whether the person doing the portrayal was attempting to shut down debate.
     
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  10. Sasha

    Sasha Fine, thank you

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    @charles shepherd, there are some things being attributed to Professor Holgate in that article that, in the context in which they are presented, raise some concerns.

    But as we've seen, Mary Dimmock has had her own comment placed out of context in the article to mean the opposite of what she was trying to say.

    Perhaps you will let Professor Holgate know about the article and let him know about the impression it gives. If it doesn't represent his views, he might like to take some rapid action.
     
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  11. medfeb

    medfeb Senior Member

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    Here's my comment on Gizmodo:
    I was quoted as saying that the “the total objection to anything psychological... shows how irrational patients are - and that’s used against them.” The context of this quote and the quote itself do not convey the point that I was making in my interview.

    For thirty years, patients’ appropriate objections to the focus on psychological treatment ala PACE is used as “evidence” that patients are irrational and anti-psychiatric. I did not say that patients are irrational but that patients are claimed to be irrational and anti-psychiatric as a way of delegitimatizing them.

    My point would more accurately be: “Patients’ objection to psychological approaches to their disease has been twisted to make it appear that they are irrational, and that has been used against them.”​

    I will also contact the author as well.
     
  12. Bob

    Bob

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    @medfeb, I knew exactly what you meant in the article, but I agree that your quote hasn't been framed well. I get the feeling most of the quotes have had their context twisted somewhat in order to add intrigue to the story.
     
  13. Bob

    Bob

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    I found this article interesting and I thought it was written well in many ways, esp in terms of journalistic style. The journalist has obviously done quite a bit of research. And I thought it helpful in places. But it's complex and contradictory, so I can't work out what I would think if I was a casual reader. Perhaps it's better to be written about, even if not entirely accurately, than ignored? It certainly raises lots of issues. And it seems to eventually come down on the side of ME being a biomedical illness that needs much more biomedical research.
     
    Last edited: Nov 10, 2015
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  14. Bob

    Bob

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    I've been struck by this article, and others, that we're not getting the message out that the latest PACE publication demonstrated that patients are right about CBT and GET. i.e. that CBT/GET have no sustained or long-term therapeutic value. I think we need to start shouting about this, because it changes everything in our favour. i.e. we are portrayed as idiots because we complain about the only "evidence-based" treatment on offer, and yet the evidence now validates patients' opinions because it has shown that CBT/GET have no sustained therapeutic value.
     
    Last edited: Nov 10, 2015
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  15. worldbackwards

    worldbackwards A unique snowflake

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    Yeah, I'd much rather see this kind of article, problematic "balance" and all, than the Isabel Hardman one with it's clear "know your place" line
    This seems to be a testimony to the standard of the researchers' chutzaph, I think. No one can really contemplate how savagely they've spun their results so they just ignore it.
     
    Last edited: Nov 10, 2015
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  16. Bob

    Bob

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    One thing I was struck by, reading this article, is that, as a casual reader, I think I would have thought "if all the patients are saying that these treatments are inappropriate and they don't want them, then why are the treatments being forced upon them? If the patients don't want the treatment then the treatment isn't sustainable!" It seems like an obvious conclusion to make, based on the article. And the question arose: "why aren't researchers collaborating with patients to find a treatment that they want, instead of forcing a treatment they don't want on them?" So I thought the article was positive in that respect.
     
  17. Yogi

    Yogi Senior Member

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    http://mosaicscience.com/chronic-fatigue-syndrome-me

    This is the other article from another thread. Given all the comments are on here perhaps if it could be put at the first post. Mosaic Science is from Wellcome Trust (the biggest medical research charity in the world). Therefore it is important that the wrong impression is not left on readers especially as scientists will be reading this.

    Virgina Gewin has done alot of research but it is very mixed article. She might be a good journo to have on side.

    Probably not best for everyone to tweet her but a good articulate and considered letter to her might be good from our advocates or someone from PR.

    www.virginiagewin.com/

    http://mosaicscience.com/about-mosaic
     
  18. Denise

    Denise Senior Member

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    In May 2015 Virginia Gewin published this article:
    http://www.nature.com/naturejobs/science/articles/10.1038/nj7553-551a
    so she has some prior experience with people with this disease.

    I also trust Mary Dimmock, Lenny Jason and Jennie Spotila to be in touch with her and express whatever concerns they have about how things came across.
    Perhaps they could pass along concerns so that Ms. Gewin is not overloaded.
     
  19. JayS

    JayS Senior Member

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    Could've been titled 'The Battle To Finally Understand Death Threats sent to CFS Researchers'.

    Sorry. No sale for me. Good interview with Lenny Jason, sure. But Mary Dimmock knows what's at stake and how this game is played as well as anybody, so I find it hard to trust that her quote wasn't framed that way for a particular reason. Poor Esther Crawley won't have anyone reading this know the first thing about the Lightning Process--and I wonder what experts in child abuse of the non-violent variety would think of having sick children doing something like that.

    Considering that we haven't heard anything more about 'death threats' since the initial rash of stories more than 4 years ago this aspect of the story takes up a heck of a lot of space, all things considered.
     
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  20. mfairma

    mfairma Senior Member

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    Perhaps I'm biased, but I feel loosely along those lines myself. I woke up this morning, saw those ridiculous quotes, and, thought, "my mom said that?"
     
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