Discussion in 'Phoenix Rising Articles' started by Mark, Jun 14, 2013.
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So it sounds like drama regarding threats and such was related to the CDC or whoever essentially ignoring and interfering with the committee's previous decision to work on adopting the CCC as the new CDC definition?
Why is there such a lack of leadership within the US government. ME/CFS is a special case, it is the one that has slipped through the cracks, but yet everyone pretends like this isn't a problem, in fact they still seem to think that everything can continue as it is now. Or at least that is what their actions show.
I think there's a few factors interacting with each other.
One is that Americans are not entitled to health care. So ME/CFS isn't a special case to the extent that sick people (generally poor due to not being able to work) have no expectation of any health care at all. I expect this will change somewhat with Obamacare being fully implemented soon, when all people who can are required to pay for health insurance. Once people are required to pay, they'll feel more justified in making demands.
The other issue is that (perhaps partly due to the government not being expected to take care of patients) there has been no real attack of ME/CFS patients in the US such as you see in the UK media on a regular basis. Basically Americans don't really care about ME/CFS patients being expensive or difficult to treat, because their tax dollars aren't going toward it. Hence there's no easy financial wedge to drive in between patients and the public.
A third issue might be that the political issues surrounding ME/CFS are less known of in the US, even among patients. They get the Fukuda definition, which isn't as obviously full of crap as Oxford, and GET and CBT are way less common in the US, hence it's possible that patients aren't being abused badly enough for many of them to bother finding out what the problems are with the available definitions and treatments. Also things like sectioning basically never happen in the US, even with obvious and harmful mental illness (hey, that's what jails are for), so there probably aren't any recent instances of institutional abuse of ME patients.
So basically lower expectations and less verbal/social or physical abuse
From what I see here in the US, there is no real issue of abuse. No one is being "forced" inot treatments like GET and/or CBT. The problem is more an issues of ignorance. Very few doctors here are familiar with CFS. Most think that it's not a real disease - just more like a symptom. Even if one is wealthy here, unless you live near one of the handful of CFS experts in the country, you don't have much of a chance for treatment.
Thank mark for this detailed article on the second day of the CFSAC meeting. Your hard work is appreciated.
While reading this article this quote came to mind:
It seems to me, besides some exceptions, like Holderman, Kraftchick and Fletcher, that this committee is committed to the status quo and that is where their comfort levels lie.
Any call for real change is rebuked by them. They have been dealing with the issue of CFS for how many years now and now they decide to study and look over the literature?
I don't know what happened really behind the scene with Eileen and others being threatened but, I don't take this lightly. I am not sure as a patient what i can do about this.
They are holding on to their antiquated criteria with dear life and seem to take offense if anyone tries to move them in a positive direction.
It was really upsetting to see what happened with Eileen. I hope it's being looked into - I can't imagine it's not, after that.
Thanks Mark for a really informative, and intriguing article!
It sounds like it took a lot of courage from Eileen Holderman to speak up and probably came at a personal cost to her. I know how these sorts of things happen and how incredibly difficult it can be to get recognition of stuff like this and get things corrected. Good for her though, it shows character.
We don't really know at this point what the details of the underlying tensions were, so I think it's important not to jump to any conclusions, but the issue you refer to about the NIH's workshop (not CDC) appears to have been one of the main bones of contention at the heart of this drama. One thing seems clear to me: it does seem that there had been some extremely robust exchanges 'off-stage'.
It seemed to me that the committee danced around this issue over the recommendation for a workshop towards a definition based on the CCC, in relation to the NIH's workshop, several times without ever quite clarifying what to me seems to be the key fact. For me, the key may be the prioritized recommendations list itself. If the recommendation for a case definition workshop has been marked as 'completed' in some way, that would be key. A couple of times it seemed to be hinted that this may be the case, but we still haven't seen that list so we just don't know. So for me, it will be crucial to scrutinize that list and compare with the original full list (spreadsheet) and see exactly what has been considered 'accepted' or 'completed', or what's been dropped or disappeared from the wording. When it's eventually posted on the CFSAC website, that is...
However it's important to stress that we have no real basis, other than the issues that were argued about around this exchange, for knowing what precisely was the issue at stake in the alleged threats to 3 committee members. We don't know what form those threats took, or what provoked them. One clue - and I stress that this is speculation and circumstantial evidence really - is the way that Susan Maier responded after Holderman and Fletcher spoke out. That seems to me to suggest a connection, perhaps that an argument between those protagonists lay behind this issue, and that would suggest that it may indeed be the argument over the NIH workshop and recommendation for a case definition workshop. Holderman's comment about the NIH 'hijacking' the recommendation being 'wrong' seems like it could be key. Maier seemed to be saying, however, that the work that led up to that workshop being approved was in process some time before CFSAC made its recommendation, so that might not be an accurate description of what happened. What makes the link is that the response to the CFSAC recommendation made mention that the NIH workshop was underway (but also mentioned this wasn't what was actually asked for) as well as other steps that the department was 'actively pursuing'.
One point in my analysis is to note that in all of the department's responses they have not done what was asked for precisely, but across the CDC, FDA and NIH I think it's possible to see the responses as a kind of translation of what was asked for into the language and standard methods of the department. Without making any comment on whether that's acceptable or not, I do think it's an important pattern for advocates to recognize and take note of. For example, a request for recognition of the different subgroups and recognition of the CCC appears to translate into a CDC study to determine whether that is really true or not. One can understand the mentality that says we are not going to accept that as fact but will study it to determine whether it is. I don't think we should be one-sided in our criticism of that modus operandi; of course we don't like it but if it's a fact of life then it's something we need to work with, and work around. So, for example, calls for specific types of study, specific details that should be included in the CDC study (eg exercise challenge), accompanied by research citations, might be more on target with the kind of thing that fits into the way the CDC work. Of course, that may not solve anything: they may just respond that they don't trust that exercise challenge research either and want to do a study to see whether that's valid before incorporating it, or something like that...but then again, when you narrow it down like that it's a bit hard to see how they could refute that including a test of that theory within the context of the multi-site study would be as good a way as any to verify or refute it. And equally obviously, it would be important to specify some fairly precise details of what the test protocol for that should include, so that they can't just test it in the wrong way and say 'that's what you asked for'.
But anyway, I've gone off at a bit of a tangent there perhaps...coming back to the allegations of intimidation, another point that I find intriguing is that the priority recommendations were passed without opposition, and indeed Fletcher proposed the motion to do so. It was only after that motion was passed and everything had been resolved that the argument bubbled to the surface. It seems strange to me that if there was such strong dissent about the recommendations themselves, that the dissenters should then vote to approve them. That may suggest that the recommendations were not the issue. Alternatively it may suggest that the 3 members may have felt obliged to vote for that motion under threat of losing their place on the committee. Again, this is just speculation, and again, being able to see the recommendations would make a big difference.
One final oddity, Dr Peterson at IiME made a comment that the CFSAC had just voted to postpone the definition question for another 2 years. Since there had been no vote on that specific question, and the only relevant vote seemed to be the unanimous vote to approve the prioritized recommendations list, this seemed odd to me, but for sure Dr Peterson is well clued in to what went on and didn't say this lightly, so it seems to suggest to me that the prioritized list, or some other behind the scenes CFSAC vote, may have somehow accepted (or not pushed) the response on the call for a case definition workshop. Now, we know from the comments of Krafchick, Holderman and Fletcher that they would not have supported a dropping of the call for the case definition workshop: they argued for the adoption of the CCC. Yet there was no actual vote on this during the meeting.
What all of this suggests to me is that there were other discussions and maybe votes 'off-stage' on these matters. One pattern that may make sense is that the details of the recommendations - or other motions that people wanted to propose - were discussed off-stage, so that everyone knew which way the votes would fall, and those details were perhaps bundled up into the priority recommendations. Then, ultimately, the committee have the choice to approve or vote against those recommendations as a block. In that scenario, it's often the case that although you don't like all the details that were thrashed out earlier, you've accepted defeat on those issues and approve the package because overall it's more important to get the package and you don't want to scupper that package and end up with no priority list at all. This way of looking at things seems consistent with Marshall's opening comments about the committee operating by consensus, and saying that this doesn't mean a 5-4 vote, it means that in such cases further discussion is necessary. Those comments seem consistent with a model that says we work together until we get something we all agree to vote on, and then come to the public committee and all our votes are unanimous...because unanimous votes will look stronger.
I stress again, all speculation and that's just the way I see the pattern seeming to hint at, but it really may be nothing to do with the prioritized list at all. End of the day though, it does look to me like a lot of the key arguments happened off-stage and they key point for me is that I can't figure out what went on and what the argument was about. If this is supposed to be a public committee and the main conduit for patients to make representations to the authorities, that doesn't seem a very good state of affairs to say the least. So: I think it's important to get some clarifications about all this, and in particular as Holderman is the only patient rep on the committee, if she feels threatened and intimidated that's a very serious issue that we should all be concerned about. I think we now need to pursue that, and also we need to keep a very close eye on those prioritized recommendations.
Quite so, they are very clearly not treating it as a special case in the way they respond to it, they are using their standard mechanisms to process the situation, and there is nobody grabbing the situation and saying we need to look at this one in a different way. I don't find that too surprising, but I do think that the reason it is such a problem comes back to the original CFS definition.
In a lot of systematic processes, it can be the case that they are very rational and sensible and logical, but if you feed in something totally garbage or make a crucial mistake of the wrong kind, you can then never undo that mistake using your existing ways of working because it all becomes circular and you have no way to step outside it. In our case, the original CFS definition was never established using the evidence-based standards that are now being applied. It's in the system now, but it should have never got into the system if you were applying the standards that exist now. So the CCC can't be accepted, perhaps, because it needs a certain standard of evidence according to current practice - but this disregards the fact that the definition currently in use never had to jump over those same hurdles.
And when you then have a process to scientifically investigate that whole question, you have to start from the original definition, so the flaw is still there as a basis for what you then do. (Worryingly, in investigating the question of whether there are subgroups, and whether the Fukuda definition is wrong, or missing the point, the CDC are now excluding the severely ill, the housebound and bedbound, which is obviously a major danger - although at least they have publicly recognized that and say they're looking at ways to address it). So the whole thing can become circular and a trap you can't get out of using your existing perfectly good system. Its like the garbage in garbage out problem that's so common nowadays: the system is perfectly logical but the data that's fed into it is so flawed that the outputs are flawed and the outputs then feed into justifying the policy and the system itself, and the type of data you collect next time round, so round and round we go, missing the point that is obvious to those on the ground, again and again...
That's a very good summary of what lies behind the key differences between the UK and US situation IMO. One other thing I'd add is history. I noted when Dr Peterson presented his potted history of ME/CFS at IiME, he began in the 1980s and Lake Tahoe, and thus with CFS. I think in the UK a similar history might be inclined to start in 1955 at Royal Free Hospital in London and thus with ME, making reference to 1934 as well. I know my history would always start there, and I often wonder if that may also be key to differences between US and UK perspectives.
Thanks Nielk, you're welcome. I know it's very long and a lot to wade through; a shorter summary would be useful too and I hope I have time to do something like that as well, but I hope these longer articles will serve as a useful reference in the long term.
Watch this space...
During the meeting itself, Krafchick and Fletcher stood out for me as stars in what they said and how professionally and clearly they said it - Krafchick asked some superb questions - and I also thought that all the new organization reps gave strong performances.
When I came to writing up my notes, however, Holderman really stood out as a star performer. Her description of her sub-committee's work, and her work with the CDC on modifying their website, were particularly impressive. (I had no idea about the work of that sub-committee and again it seems there is masses going on off-stage at CFSAC which hasn't been highlighted in the meetings: I think it's important that reports from sub-committees to the full committee should be standard in the interests of transparency and efficient process, and I honestly think they should cut out the presentations on issues like medical insurance and focus on committee business and debate). Since she clearly has strong views at the other end of the spectrum to the CDC, I was especially impressed that she has been able to work constructively with them and gain concessions, and she was very good in recognizing positive changes even if they are small ones, which I think is a hallmark of an effective operator in these kind of situations. This kind of situation is extraordinarily stressful. One is always having to bite one's tongue and refrain from getting angry, and work with what is there to move things forward; it's very hard to maintain that diplomacy and it requires great commitment. I think that ongoing stress may have been one factor behind what happened at the end of the meeting and it's important that the patient community support Eileen Holderman in this situation.
If research funding was rationally allocated, they'd target fatigue in general and spend 300-500 million per year on the research of all cases of medicalised fatigue.
I don't mind these expanded definitions so long as they actually deal with the problem properly.
You also mentioned Peterson had mentioned 2 years before any definitive verdict about a change might take place. Sound reasonable - if they were started from scratch i.e. from now. Of course they aren't and this was the crux of the frustration.
With research coming out weekly that could be said to have an influence on criteria the target is not fixed. All the criteria are dependent on opinion and interpretations and Dr X saying 'I think....'. No biomarker has revealed itself that would make their task so much easier.
But yeah I wouldn't be surprised if at the conclusion of all of this effort - if there is ever a conclusion - the CDC recommend a formal study with the aim of arriving at a consensus criteria of their own.
n.b. Thought you were having a break. Go eat some lava bread or something and unplug the technology
That's a very interesting point - maybe certain proposals need to be accompanied by a review of the relevant literature in order to have the best chance of going through. Perhaps a roster of names of our key clinicians behind it. Perhaps we could have a panel of 20 clincians to pre-screen and vouch for CFSAC proposals so that again, those proposals have backing. Something has to be done to make proposals something that can be acted on rather than be seen as a stimulus for CDC to start researching it from scratch. They should be called out on that tendency - it may be so much of their mindset that they're not aware of it.
I am very appreciative of Mark's report and analysis, which could indeed be very important as things continue. Our keeping a strict, careful eye on the ball--the purposes, participants and dynamics--recording it, discussing it, and bringing it to bear in future interactions--creates a kind of intelligent feedback which can influence what takes place.
Valentijn's analysis too, comparing what happens in the US to Great Britain, was enlightening to me also.
I think this is an important point we, as patients invested in this info, need to insist upon.
I've worked on a number of national and international committees of this sort, although in a different context. The full committee commonly meets once annually and all the work is done by subcommittees during the rest of the year. The purpose of the annual meeting is to report results of the subcommittee work and vote on those issues that require full committee approval to take forward -- anything official that will come out of the committee. This is fairly common practice.
Discussion of major issues should not be taking place at once-a-year meetings. Research/background and problem-solving should be done year around and that information reported so that the committee can make informed votes.
IMO, the CFSAC is extremely poorly run. Forward progress is painfully slow because a large part of the committee only pays attention once a year, so any little thing can shut down a decision until the following year. Vast amounts of time is wasted asking and answering basic questions that should have been handled long before the main committee meeting.
The heart of properly run national/international committees are the working subcommittees. If you want to have a strong influence on a particular subcommittee topic, you get yourself on the subcommittee and do the necessary work. You don't ignore the issue for a year, ask uninformed questions, and then expect to have a major influence on policy in that area.
If this committee were properly run, the head of the committee would be encouraging the voting members to establish working subcommittees with responsibilities including periodic reports to the committee (and in this case the public as well). The head of the committee should be making sure the subcommittee members are doing the research, discussion, and plan formulation necessary to make reasonable progress. If they're not, ,the committee should boot any members not doing their job off the subcommittee.
I don't see the person in charge of this committee managing it at all. It looks to me more like this committee serves as an item to pad the resume for certain of the members, especially those who should be actively managing the committee, but are not.
End of rant.
Bottom line: We need to start insisting on better committee management, and functioning and transparent subcommittees in CFSAC so that things actually happen in more than a geological time frame.
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