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"The Bar Has Been Raised" - CFSAC Spring 2013, Day One

Discussion in 'Phoenix Rising Articles' started by Mark, May 27, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog

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  2. Nielk

    Nielk

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    Wow, Mark! This is amazing work. What a great overview of the meeting.

    While reading this, something struck me regarding Unger's CDC multi-cite studies. I would assume that the patients there were picked based on the CDC Fuduka? Yet, Unger seems to want to define the illness based on the response from these patients to the survey. She states that only 80% of them have PEM as a symptom. Therefore, she cannot recommend that PEM is a hallmark of the disease. If she is going to look at these patients to base her diagnostic criteria, she will come back with the same criteria that she is using for this study/survey. It's like we are going around in a circle. Come to think of it, this is a dilemma for anyone trying to find a definition of an illness. Who do you include in your study to come up with a definition. What comes first; the illness or the definition?
     
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  3. Nielk

    Nielk

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    To me, the comment that brought about a personal outburst at home while watching was this:

    She must be kidding, right? Why just stop at simplifying ME/CFS for clinicians? Why "scare" physicians with an complex illness like diabetes? Why confuse them by saying that this can effect every part of the body? Just tell them that the patient needs diet adjustment and CBT. If they get more ill or for that matter die, it is not our fault. They probably did not have diabetes as we define them.

    I'm sorry about being so sarcastic but, I take this so personally. Just the fact that Unger was able to make a comment like that, makes me realize how she really has no clue how severe this illness actually is!
     
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  4. Mark

    Mark Acting CEO

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    Thanks Nielk. It's much too long, I think, but I basically ran out of time to edit it down! I hope it's useful; I found it very interesting as I went through all my notes to review everything but I kind of feel a need to summarize the summary now...:rolleyes: I hope people find it useful to dip into the bits they're most interested in.

    I think Fukuda's the definition used but I'm not sure; the patients are provided by the various participating clinics so I guess they're also picked by the physicians...so it's not as simple as what definition was used, there's probably also an element of selection by the physicians...and that's probably always the case to an extent. I think that's pointed to by the CDC saying they're finding heterogeneity of the patient population both between the clinics and within the clinics.


    Unger did seem to be recognizing very much that this is a heterogeneous population, so I'm not sure that the aim here is to define 'the illness' - one illness - so much as to investigate and gather data on possible subgroups.

    The biggest worry, though, seems to be over whether they are gathering the most important detailed information, for example different types and severity of PEM or PENE, and whether they are gathering data on the response to exercise in the 'right' way (eg. response to exercise after two-day exercise test-retest). That was a big focus for the panel's questions and what they urged the CDC to do (Krafchick was brilliant on this I thought). The way it looks right now, the study will certainly gather masses of data and that should be very valuable, but the big questions are (1) is it missing out all the most important data - almost everything the 'outside' researchers have found to be significant so far? and (2) will that data ever become publicly available? (Belay said the CDC is going to analyze it all itself first, then maybe the long process of releasing it might happen - the biggest problem there is probably confidentiality of patient data).

    It did sound to me like they may well not even be doing any sub-grouping of conditions/definitions, at the end of it all, but instead thinking more about exploring ways to subgroup responses to different treatments. I don't think the study will be definitive on anything, anyway: Unger did say that it won't just be one study that resolves this...


    Yes, that's basically it I think, a massive 'chicken and egg' kind of problem. Not just a problem for this study but a problem with cracking it all open scientifically. I think you could argue - and the CDC way of looking at the science would perhaps do so - that the CCC and ICC are also doing the same thing: they'd perhaps say that their definition is circular too because they're studying populations that they have defined based on their experience of 'what ME is' but they only have their opinion/experience, not science, to back up that symptom-based picture. I personally think it's really dumb to throw away the experience-based hypothesis-generation part of science and imagine that the scientific exercise is purely data-based and evidence-based in the sense that all evidence must come from trials and everything else must be desregarded. To me, that's a chicken-and-egg philosophy that ignores half of the process: the creative hypothesis-generation phase that necessarily comes in before you decide exactly what you're going to study. But that seems to be the way the world is trying to think about pretty much everything these days.

    In the end, if things are going to move towards biomarkers and objective measures rather than symptom-based criteria, that does kind of imply that the symptom-based definitions are all ultimately a dead end really and the future is in applying treatments based on measurements that define populations that respond well to those treatments. So for example, if you could find a correlation on who responds well to Ampligen, you'd give Ampligen to those people, and the same for every other treatment, but you might not worry so much about what their diagnosis or label is or what criteria they fit. I think that's what Unger was talking about, anyway...not saying it's the right or wrong approach but that seems to be the difference between the way she and the CDC look at it all and the way the researchers who are calling for the CCC or ICC look at it.
     
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  5. Mark

    Mark Acting CEO

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    Yes indeed, I think that was one of the stand-out moments. It's not a new argument to me, at all - actually it seems to be the standard argument against the CCC - it's too complicated - and I've seen it before in the UK, I think in reviews/responses to publications and in arguments against using the CCC.

    The more disturbing part of it here, though, was the appearance that it wasn't just about hiding the complexity from physicians, but hiding the severity of some of the symptoms. It kind of went along with the thing about the photos trying to present a 'positive' image. It can almost be read like an admission that the CDC deliberately wants to hide the true nature and severity of ME...
     
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  6. Nielk

    Nielk

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    Exactly my point.
     
  7. Kina

    Kina Moderation Team Lead

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    Nielk -- I agree this is an amazing article. I don't find your comments sarcastic at all. What you did was make an excellent point with use of an analogy.

    I tried to watch CFSAC this year but just couldn't manage to follow anything -- I just couldn't process what was being said. So thanks for the great synopsis Mark.
     
  8. Sasha

    Sasha Fine, thank you

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    Great job, Mark - that must have taken a lot of doing!

    Yes, extraordinary statement by Unger - trying to protect clinicians from the complexity of a disease. Bizarre.

    Regarding the photos on CDC's website, I don't see anything sinister in that. I think it's pretty standard to use pictures of happy, smiling people on websites about serious disease. Look how delighted everyone is to be sick on the Cancer Research UK homepage and NHS Choices! Look, everyone, it's great being ill!

    The idea, presumably, is to give an upbeat message to someone who has just been diagnosed with a well-recognised disease with well-recognised treatments - there's no question that you're sick and no question that you're going to get the best possible treatment. 'Upbeat' is appropriate there, on the whole. Big difference for a disease that's trivialised or held in contempt and left untreated, though, and now that that point has been made to the CDC, it certainly will seem sinister if those images are allowed to remain.
     
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  9. Simon

    Simon

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    Thanks for a fine summary Mark, that must have been a mountain of work.

    Thought this was encouraging
     
  10. Valentijn

    Valentijn Activity Level: 3

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    Definitely the egg :D
     
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  11. medfeb

    medfeb Senior Member

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    Thanks so much for doing this, Mark. This is great to have
     
  12. Ember

    Ember Senior Member

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    Dr. Unger is talking in circles. She was supposed to be creating a case definition, and now she's saying that the treatment trials will guide the process. She knows that any application for a treatment trial needs to define its cohort upfront. That was supposed to be her job. So she's declaring defeat in her “data-driven” process.

    She questions now whether any one case definition will solve the problem. Expert opinion should lead her to believe that it may take at least two case definitions, an ME and a CFS case definition.

    Consensus criteria are scientific. So saying that experts “only have their opinion/experience, not science, to back up that symptom-based picture” isn't accurate. There's nothing unscientific about the observation and critical analysis of experts in the field. Instead of trying to recreate the wheel, Dr. Unger could be using recent case definitions to generate her numbers. That would be useful.
     
  13. Ember

    Ember Senior Member

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    Dr. Carruthers answers your question, Nielk, in last year's article on the ICC:
    He concludes more simply, “As Osler also said 'Listen to your patients. They are giving you the diagnosis'. Now we have the technology to confirm this directly for this complex disease—if we use it.”
     
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  14. snowathlete

    snowathlete

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    Thanks Mark for your hard work with this. It was really helpful to read a comprehensive summary of this. I havent read anything this detailed anywhere else, so thanks, cause it saved me watching two full days of videos!

    I think there are some really promising things here, and a number of people sound genuine about improving our plight.
    I particularly like the sound of Krafchick.

    Regarding the Fukuda and Oxford definitions on the CDC site, I liked Holderman's quote: "education with out of date information is really mis-educating doctors and that’s what frightens us." That was a good answer.

    I still find the photos disturbing. As Sasha points out, it is not unique to our illness, it happens in general in - sick people in society is undesirable, and there is an effort to play it down. I dont think its intentional by most, but it is by some IMO.
     
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  15. Andrew

    Andrew Senior Member

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    I don't know if I pointed this out before but...

    Unger said that they advise doctors that their 1994 criteria is not a clinical criteria, and so they need to not take it literally. This is not true. The toolkit says no such thing. Now, there is a place on their website where I found such a statement. And so Unger might say "well, if doctors want to know more it is there for them to read." I've seen this type of excuse from her before. But the fact is, when a doctor has his office manager print out this toolkit, and he is sitting there reading it, there is no reason for him to assume the CDC gave him a diagnostic guideline that is not meant for his use.

    I don't know who that man is who made the statement "that's what the science is" in response to their including the Oxford and Fukuda. I think you will remember this because Holderman accused him of playing word games. But I assume he is from the CDC, and this is no different than the game Unger plays. Certainly, it is science, but there is also a professional responsibility to differentiate whether it is relevant science. And they take no such responsibility.
     
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  16. lnester7

    lnester7 Seven

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  17. Mark

    Mark Acting CEO

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    While watching the meeting, Steve Krafchick seemed the star of the show for me. His comments and questions were mostly very short and to the point, but right on the money. Mary Ann Fletcher said a lot of good things too and also asked some very pertinent questions.

    When I went through day one for the article, though, I realized just how good Eileen Holderman's work was, not just within the committee (where I thought she made some very diplomatic and reasonable comments about the CDC in particular), but in what she revealed about her ongoing work with her CFSAC sub-committee. We never really get to hear about what goes on in the sub-committees, and it's always seemed strange to me that they don't give formal reports in writing and within the CFSAC meetings - if you think of a conventional meeting agenda you'd expect that to be standard. It did sound like Holderman has been leading on some fantastic work, particularly working with the CDC on improvements.


    I think this goes right the way across society. Think of the change in fashion for fundraising for development in Africa, for example - it's now best practice, in general, to present positive images of how your money is helping as opposed to presenting people as 'victims'; that sort of thing is now considered to demean or undermine the recipient of the aid - it even came to be seen as abusive, taking away the person's dignity. There was a change in mindset associated as well; getting away from a model that was susceptible to rich healthy people patronizing and insulting poor sick people, and more about encouraging self-reliance and restoring people's pride and dignity.

    When I was younger, it was normal to see some fairly horrific and disturbing pictures used in charitable advertising to shock and then to sell...it seems that went out of fashion though. I think that sanitisation process is appropriate in some contexts, but it seems hard to justify in this kind of medical context. The pictures described just sound flat-out wrong; they just seem to be presenting something completely different to the disease. From a modern advertising point of view, I guess everyone's looking for cute, feel-good images to sell their product, but how that ends up getting translated into showing pictures of healthy people yawning on a website supposed to educate about a disease, I don't really understand.
     
  18. Sing

    Sing Senior Member

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    My impression is that many think the CCC and ICC are based on knowledgable doctors' impressions of patients symptoms rather than scientific studies which back up this "anecdotal" type of clinical evidence. I hope to correct this impression by saying that both the CCC and ICC are all backed up by research papers. If you read the full version of these texts you will see all the references. Below is a link to the CCC on mefmaction.com This is the group in Canada which pulled together the international experts who worked together to come up with the CCC, then later the ICC.

    http://www.mefmaction.com/images/stories/Medical/ME-CFS-Consensus-Document.pdf

    I think there are undoubtedly additional studies which can back up the symptom list in this definition.
    Going back some years, I can remember Dr. Anthony Komaroff from Harvard Medical School saying that over 6,000 scientific studies had been published verifying the physical nature of this illness. He has been a cautious, conservative scientist too, befitting the standards of his academic institution, who does not venture beyond established data, so I expect that his list of studies would be acceptable to the higher ups in HHS. But building on this, the current centers where our most expert doctors are studying ME/CFS, would have lists of studies to cite too.
     
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  19. Ember

    Ember Senior Member

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    Thanks for the link to the CCC from the National ME/FM Action Network, Sing. Remember though that they had nothing to do with pulling together the International Consensus Panel for the ICC.

    Good places to start for gathering together other studies would be the ME-ICC (119 references) and the ME Primer (154 references). The "Response to 'A controversial consensus" is also well-documented (56 references). The links are inserted.
     
  20. Sing

    Sing Senior Member

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