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"Fatigue is not a disease" - Unger Responds, Advocates Launch Petition

Discussion in 'Phoenix Rising Articles' started by Mark, Jun 11, 2013.

  1. taniaaust1

    taniaaust1 Senior Member

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    Being well informed doesnt mean they are going to agree with you... everyone has their own ideas on how to best how things progress forward.
  2. taniaaust1

    taniaaust1 Senior Member

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    sorry I misread your post.. so have changed my now.. and yes I agree they always have known that ME is different to CFS.

    I cant talk to how they are now thou but 5-8 years back as they had on their website in the CFS part in 3 different places that ME was a different illness to CFS. (Ive no idea if there any any reference to this there still today anywhere.. with site changes in the CFS section, this reference slowly was removed and last time I saw it on their site, I could only find mention of them being different in one place and it was in a very overlooked area of the info. I know their site has changed more since then)

    I had back and forth communications over this with the CDC. I ended up emailing the CDC to clarify what was on their website and they confirmed they were different and that ME wasnt CFS. So I then emailed them back asking them for a definition of ME.. they didnt know and give me phone numbers and places I could contact to try to find out the answer to my question (which all ended up being dead ends as none of those knew how ME was defined either.. note not one person did say it was CFS). So i contacted the CDC back telling them I'd tried to follow up on the advice they gave me to find the answer to my question and at that point they offered to to ring me and we were going to talk about the ME situation with me.. unfortunately thou I was too ill to be talking on phones so had to drop our communications at that point. (I was trying to get other advocates to follow this all up at the time with the CDC but no one did).

    But yeah.. they did say they were different things both in email and by their website. If they still say that.. that is an area which advocacy groups need to hold them on and target sometime and go "why?? is there no ME defination then on your website?" (which was going to be my ploy when I was communicating with them in the past, once I got a definition for ME which they agreed on either from someone they refered me to themselves for it or from them).
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  3. Kina

    Kina Moderation Team Lead

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    taniaaust1 -- you see what the CDC had on their CFS page via the wayback machine.

    Go to http://archive.org/web/web.php and paste the following url into the search box -- www.cdc.gov/cfs/ (the http:// is already in the box), then click on 'take me back'. You will see that you can access pages right back to 2006 -- just click on any date that has a blue circle.

    It's a wonderful way to see what has been changed on websites :)

    Kina
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  4. Ember

    Ember Senior Member

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    You deny that this campaign suggests that its ends are supported by the authors of the ICC and in particular by Dr. Carruthers. Yet here's how Mary addresses patients, caregivers and advocates: “As Dr. Carruthers stated in the ME Internatiional Consensus Criteria (sic).... To that end, a group of patient organizations and advocates have submitted the letter at this link..." (emphasis added).
    When I've asked whether any medical or policy experts were consulted, I've been told that the individuals involved included “a few doctors,” but no policy experts:
    You write that, as a board member, you have obligations to serve the interests of ME, CFS and ME/CFS patients:
    As I've explained before, I'm not one with responsibilities to advocate for this patient population. And neither you nor Kina has given me any reason to believe that anything has changed since the expert opinion that I provided earlier was rejected. When I quote statements by the International Consensus Panel, you reject them as appeals to authority.

    You claim that the opportunity for consultation is over:
    You make no mention above of having consulted with medical experts:
    The opportunity for consultation lasted six months before the letter was sent. Three more weeks passed before the campaign was begun.
  5. Mark

    Mark Acting CEO

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    snowathlete: Great post, thanks for that. Worth a response in some detail I think...

    So can I, actually, even though I've been arguing one side on this thread. I think there are some valid issues there, but the practical question right now is whether to get behind this initiative or not. On balance I'd say there's much more good than bad in this, and while there's room for improvement in future, the most important thing to me is for as many people as possible to get behind a positive initiative, even if it doesn't give everything that everyone wants.


    Crucial point. The word 'consensus' is key for me: it implies a degree of flexibility and compromise. Getting lots of people together gives you the potential to achieve something. As a community, we sometimes spend far too much time focusing on the details that we don't like and not enough getting behind positive, though imperfect, projects. There's always something there to be found to criticize in anything; nothing's perfect. But we need a mass movement if we're going to apply pressure effectively, and a mass movement has to unite a lot of subtly different perspectives under one 'big tent'. I believe that realization is dawning on a lot of people in the ME/CFS world and we're all starting to work together a lot more effectively. It's very hard work to make that happen, but it is happening.


    Another crucial point. The landscape is always changing, and you build gradually on what came before. I'm personally not really expecting the details of the letter to all be implemented without further discussion, that doesn't seem likely to me no matter what you ask for, and even if it they were, it wouldn't be the end of the story or the end of campaigning. The point for me is to apply pressure and set out a clear vision of the direction you want to go. One way or another we have to get away from broad and useless case definitions and we need that as soon as possible, in order for that case definition to then evolve in a meaningful way. The CCC obviously isn't the final word, neither is the ICC. The point is to make progress rather than standing still; it's a process and a conversation, not something set in stone for all time.

    The pressure may seem more positive from where you're sitting them where I'm sitting, to be honest :D ; I haven't really learned about any problems that I wasn't already well aware of and trying to work on, what I need is ideas and solutions and time and help to implement them. But I honestly do agree with you that some of Ember's questions are quite appropriate, and it's right to ask them. I wouldn't have spent so much time trying to answer them if I didn't, and I think there are some points in there which need some work.

    Particularly in terms of how Phoenix Rising interacts with this whole process, that's the main thing that needs work, for me - there is a big and very important discussion to be had there and I believe we have the potential to contribute a lot in that area. I really don't want this thread to be about all that, because right now we want to focus on the petition and the campaign itself, rather than navel-gazing about how we make decisions as a community. But we honestly do want to have that discussion on how we can find a way for the community to engage with this work - honestly, the board doesn't want to have to make these kind of decisions on its own. The big problem there is that most of the work in these kind of initiatives just doesn't make much sense as open, public discussions. When you see letters signed by loads of prominent people and sent to newspapers, or governments, you don't see those letters being discussed and thrashed out in public before they're sent; most of the time that kind of process would undermine the whole effort. For impact, you sometimes need those things to be unveiled like a press release. Petitions are different; everyone can start them and everyone's free to sign up, or not. So part of the problem for PR is that we don't have elected representatives who can then work on advocacy efforts in confidence with a range of other groups. Other groups tend to work rather differently and they don't have public forums like ours for this stuff, so we're in a rather unusual position. We want to work with other groups, and our members have said they want us to do that, but the details do get complicated. We're still trying to figure out how all that might work.

    And the whole question of CCC vs ICC is a totally legitimate question. That wasn't a straightforward or immediate question, and there's a range of views on it. In fact, personally my first instinct was for the ICC, but I was persuaded by the argument that the CCC has the benefit of a longer history of being used in practice - both clinically and for research - and the ICC would need more research, validation and momentum to be a practical target for this particular campaign. In the end, it's not just my point of view though, it's what the broad consensus is. I think part of the problem here is that for some in our community it feels strange that the conclusions of more than 6 months work kind of appear from nowhere, and the discussions that we now suddenly begin are the same ones that have been going on behind the scenes for some time. That's strange for us, because as I say, we're unusual in having this forum model of membership (and no formal membership or subscription scheme, at least not yet); it's not so strange for the other groups involved. I'd like to think that if we'd discussed all this openly we'd have all reached a consensus that everybody can unite behind and there'd be no more arguments or dissent at this point - but realistically I rather doubt that would ever be the case. There are always people with opposing views who just aren't ever going to compromise; you can't please all the people all the time, as hard as you may try...

    I do think we've tried really hard to answer people's questions; I know I have and it's taken a lot out of me at a very busy time. Some of them have been really tough to answer, either because I didn't know all the answers on points of detail about the process, or because I've needed to check with others on what aspects were confidential or needed confirmation. It's also never easy to answer on behalf of a group, on behalf of a consensus process, and explain the rationale for decisions, especially when your individual answers are being taken as if they represent the opinion of the whole group, as if there were some simple and well-defined 'groupthink' opinion rather than the result of a process. And there's been CFSAC, and Invest in ME, and lots more besides going on at the same time, but people don't see all that other work and often want answers to their questions right away.

    So your analogy with Unger's response to the community is a good one, but I'd just add that medfeb and I are just individuals too, in the context of the advocacy group, and indeed Unger is an individual within her own context as well; none of us have the power to make everything the way we want it to be, and none of us can fully represent the opinions of everyone in the group, even if we're seen as speaking on behalf of the group.


    As above, that's not just up to me, but I do want that engagement and that chance for input as much as possible. If we'd had a better response to our appeal for people to join an advocacy group, we'd have set that up and those people would probably have been involved in this process, so in that sense there was an opportunity to be involved which wasn't taken up. We did join this particular process a bit late in the day, and it has never been a public discussion for the reasons I mentioned above. It is really hard to figure out how it ever could be, but believe me, we are all listening to the points made and trying to figure out a way to get that involvement. I will say one thing though: there has never been any barrier to people contacting me and offering to get involved in the work on this or on anything else. The people who do all this stuff are the people who have volunteered to do that work, and we do want lots more people to join the team and help out with that. Very few people seem to want to be involved at that level; they generally want to spend a few minutes making comments or suggestions but don't have the time and energy to think through all the ins and outs, but when you're spending 6 months discussing complex issues with a large number of other representatives, a degree of commitment is necessary to work through all those issues. But anyway, figuring out a way to canvas opinion without compromising embargoes and confidentiality, and how to give a clear route to engagement in this process for PR members, is very much on the agenda.


    Absolutely, and amen to that! If you want to work as part of a team, that's an essential requirement.
  6. alex3619

    alex3619 Senior Member

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    I have a question for Ember : who in your opinion are ME policy experts? I am not aware of any. One of our big issues is we have been focussing on the science, which after all is what will lead to a cure, but we have not been focussing much on politics. Any policy expert needs a really good grasp of politics for a start, including bureaucratic issues of the country they are in, and the technical and personal issues involved in ME. I am unaware that we have anyone who really fills that role. I think we will in time, but how that happens is by engaging in politics, not just technical issues involving goals and science.

    I do distinguish here beteen policy experts, expert scientists, expert doctors and expert patients. None of these categories are synonymous. Furthermore I am less than convinced that policy experts from HIV or MS activism can help us much, as these two issues are substantially different to ME advocacy.
  7. Ember

    Ember Senior Member

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    The letter to DHHS demands that the “key stakeholders ME patients and ME experts must be engaged in a full and open partnership to plan for and ensure implementation of this change.” Earlier I asked whether those frequently cited in the letter were even afforded the courtesy of reviewing it before it was sent.

    Mark originally wrote, "It is expected that as additional data is obtained, this definition will evolve. This must be done in partnership with the experts who developed the ME-ICC and the CCC."
  8. alex3619

    alex3619 Senior Member

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    Which does not answer my question. We have no policy experts. We have stakeholders, medical experts, scientific experts and expert patients. The way forward is to engage in the politics and learn. Expert policy arises from experience as much as knowledge. Politics is also not science - its often irrational. Many of us struggle with this. I fully expect we will make mistakes. We (the ME community and advocates) have made a lot of mistakes in the past, and have failed to grasp the historical forces arrayed against us. We will learn though, and over time we will improve. There is no fast way to do this.

    Reason and evidence often fail, have often failed, and will continue to fail. They can support good politics, and in my view make for superior politics and policy, but do not typically enhance change by themselves. If they did then the evidence would clearly have prevented the creation of the category CFS and all of the CBT/GET approaches to treat both CFS and ME. Ramsay himself was aware of the issues that led to the current disaster, something I did not know till last week, and I am still trying to get the documentation that discusses this. When I do I will probably blog on this.

    The engagement of ME experts and patients in debate and formulation of strategy is a necessary step, but is not going to produce rapid change. CFSAC has been a toothless tiger, which I think has led some to question why we bother, but this misses the point. CFSAC and similar activities engage our activists, doctors and researchers and we learn. This learning has been slow, yes, but we still learn. Global advocacy is starting to merge. Strategy is being formulated. We will make mistakes, but this is not a game we can quit, and in time we will see change.
  9. Ember

    Ember Senior Member

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    Of course it answers your question because you asked me my opinion! For any workshop on case definitions, the cry has gone up for ME experts to be involved. This initiative involves issues of disability benefits, etc., so I asked specifically about policy experts too. As Mary wrote, "We do recognize that there are huge policy issues to be dealt with."
  10. Mark

    Mark Acting CEO

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    The extract you're referring to in full:


    To me, that extract in no way suggests or implies that Dr Carruthers supports or has signed the initiative, nor does it mislead the reader into assuming that he agrees with everything in the letter. It says that the letter is submitted in pursuit of the objective that Carruthers (et al, if you like) stated: "ME research using patients who actually have ME", and that is true.

    If you read something else into that extract, I can't help you any further. Anyone else can read the above extract and make up their own minds as to whether there is anything improper or 'intellectually dishonest' in it. I don't, you apparently do, I don't see what more there is to say on this. There's a limit to how much time I can spend dancing on the head of this particular pin with you, and I think we're pretty much there.


    And as the extract also states, patients and experts must be fully engaged in the planning and execution of this transition.


    And at the end of the day, that's why you weren't consulted during the planning and preparation of this initiative. If you had taken on such responsibilities, you almost certainly would have been.


    By the expert opinion you provided, I presume you mean the extract(s) from the ICC that you quoted? Two reasons why they didn't change anything: firstly, everybody involved has already (I expect) read the ICC at some point during the last 6 months of discussion; secondly, the letter has already been sent to the DHHS a month ago having been approved by 9 organizations and 26 advocates. If you're hoping that we will all now reconvene, change the letter, approve it, sign it, and re-send it stating the ICC instead of the CCC, because of the quote(s) from the ICC that you've provided, then you're setting yourself up for disappointment. If there's a realistic and achievable change that you'd like to see, then please be specific on what that is.

    I said earlier on the other thread (to paraphrase myself) that all your arguments as to why we should use the ICC ultimately boil down to saying that we should do so because the ICC says that we should do so - adding that they are, in your words, 'the experts'. Much as I love the ICC, I don't think the ICC authors are the only experts in the subject, but even if they were, your argument is still simply an appeal to authority. And even if one accepted that argument, it's still not relevant to the issue which drove the choice of the CCC for the letter, which is that the CCC is generally considered, by consensus of those who signed the letter, to be a more achievable and realistic goal in the context of this campaign because the CCC is more established and has already been used extensively both in research and clinical settings.

    Yes, the opportunity for consultation on the contents of the letter which was sent to the DHHS a month ago is well and truly over. Public discussion and consultation about a range of other matters related to this campaign has clearly only just begun.

    The named and unnamed doctors we've mentioned clearly don't classify as medical experts in your definition, even though you don't know who all of them are. But I think I've said all I have to say about who was consulted during the drafting of the letter.


    I've addressed some issues around the consultation process in some of my posts above, particularly the reply to Snowathlete. There is no opportunity to change the past here. There may be opportunities to evolve and improve the consultation model in future, and all practical ideas about how to do that, which address the issues I've mentioned above, will be welcome.

    By campaign, I guess you mean the petition that was set up when patients here and elsewhere asked for a way to show their support for the letter. In which case, yes I guess it did take about 3 weeks for that to be set up.
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  11. Mark

    Mark Acting CEO

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    I don't think it was me who wrote that, it looks like a quote from either the letter or the FAQ. When you quote sources, could you give some reference for them please, it gets very difficult to check the context of what you're referring to otherwise. If you quote from a forum post, there's an arrow in the quote that lets you jump to the original, confirm that the quote is accurate, and see the context for it.
  12. Mark

    Mark Acting CEO

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    I'm darned if I can see how your post in #67 answers Alex's question in #66. I'm still in the dark, after reading that post, as to who, in your opinion, are ME policy experts?
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  13. Valentijn

    Valentijn Activity Level: 3

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    The stance of people incapable of compromise is probably one reason it didn't happen. Another would be that they were probably tight on time by the time PR got involved.

    Opening a project to public comment can completely kill the entire project when bickering like this results.

    If we do end up with a proper committee for this sort of thing, and forum members are representing the view of the entire forum, I would not be upset if there were people on that committee with view points who differed from my own. But under no circumstances could such a committee accomplish anything useful if there's one or more members so fixated on having things done their own way.
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  14. Sasha

    Sasha Fine, thank you

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    I'm coming to this discussion very late and don't have time to post much. But, I think we need to look at the big picture now to make our individual decisions about whether to sign the petition. Questions have been raised about the process by which CCC was favoured over ICC and I hope that the advocates will be looking at those questions about process and taking them into account when planning their next campaign. In particular, if there's an issue likely to be contentious - such as ICC vs CCC - it would be a good idea to address that in the call for public support, when it's released.

    It's a new thing for us to have these joint advocacy actions and it's a crucial and potentially very powerful new development - but, being a new one, it's going to take a while to learn the best way to engage the whole community's support. I think we should be supporting our advocates through this process.

    So, big picture:

    • Our lives are damaged every day the official name of our disease is 'chronic fatigue syndrome'.
    • There isn't much difference between the ICC and the CCC: the former is an evolution of the latter.
    • The ICC is relatively new and untested and its widespread adoption would probably also be contentious.
    • The CCC is a huge improvement on the defintion that the CDC has been using - by a million miles.
    • No advocacy initiative will ever be perfect. Ever.
    • The petition has already been launched. To stop now, swap out the CCC for the ICC and relaunch it 'because we didn't consult everybody and some other people thought differently' would be political suicide, not just for this initiative but quite possibly for any future initiative that our advocates care to launch. Our community would be a mockery.
    • The failure of this petition would help the CDC to forever dismiss calls for change both on the name, and their appalling criteria.
    Our advocates are finally, after years, coming together and beginning to launch these powerful actions which have paid off so spectacularly in the past year. Let's support them. None of their intitiatives will be perfect in our eyes. Not one. But if an initiative will improve our lives, we should support it.

    I've signed the petition.
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  15. Ember

    Ember Senior Member

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    We live by different standards, Mark. I call that dancing.
    No, that's not what I meant. My example didn't involve you.
    Out of curiosity, what ME experts do you imagine bringing to the table?
    Here's the link to the statement of yours that I quoted.
    By policy experts, I meant medical experts experienced in writing case definitions or alternatively personnel experienced in administering benefits policies. I wasn't trying to be definitive.
  16. Ember

    Ember Senior Member

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    I agree. I wouldn't even consider joining an advocacy committee that didn't take its role in consulting with experts and recipients as fundamental to its effectiveness.
  17. Ember

    Ember Senior Member

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    That's the judgement that we're being asked to make. Will this initiative improve patients' lives? We disagree in our assessment.
  18. Valentijn

    Valentijn Activity Level: 3

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    Your stance isn't one of "we should consult so-and-so" - we heard that already. It's coming across very much as "I think things should be done a very specific way, and I will argue until I'm blue in the face and everyone else gives up."

    I respect your views, but when you endlessly repeat them and refuse to accept reality, then you are creating a problem where there doesn't need to be one. Regardless of what is ideal, our first requirement is to pursue goals which are achievable. CCC is much more achievable than ICC at this point in time, and it is HUGE progress compared the Fukuda and Oxford definitions.

    When you criticize advocates at great length because they went with the less-ideal and more-realistic option, you are discouraging any progress whatsoever. You're shutting down constructive discourse by attacking any attempt that isn't perfect. When you do this, it is far more harmful to us than helpful.

    In your case, where you are so unwilling to compromise and accept advocacy efforts which do not meet your exacting standards, the only solution is to engage separately in your own advocacy. Perhaps there are others with a similar hardline stance who have exactly the same views as you, and working with them might be possible. But your all-or-nothing approach is not going to be compatible with moderate and realistic advocacy - you'll probably be happier if you disengage with such advocacy, and it would probably create far fewer headaches and unpleasantness for the rest of us.
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  19. golden

    golden Senior Member

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    Can I ask,

    What are the differences between the CCC and ICC criteria?

    why dont people feel the ICC criteria is achieavable ? (or appropriate)
  20. Sasha

    Sasha Fine, thank you

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    I'm surprised. I thought you were arguing for the ICC over the CCC in the petition, not for the status quo.

    Are you saying, then, that you'd prefer the disease to continue to be called CFS rather than ME and that you'd prefer the CDC to continue using their current, vague criteria rather than adopting the CCC? Because that's all that's on the table. That's the initiative that has the chance to improve patients' lives.

    I thought your basic point was that you would prefer the petition to call for the adoption of the ICC rather than the CCC but I can't see where you want your arguments to now lead in practice. Do you really want this group of advocates to now announce a re-consultation with an even wider group, announce the suspension of the current petition (as they'd have to) and then, even if the ICC comes out on top, launch a new petition asking for the ICC rather than the CCC? What credibility would such a petition have in the eyes of the CDC? What credibility would our community have? What about all the patients now arguing for the CCC because they see it more realistic? What credibility would any of our advocates be left with for any future advocacy action after such a shambles?.

    I see the pursuance of your position as disastrous. It's one thing to wish that things had been different but another to persist in trying to change them after the fact when that would have damaging consequences.
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