Discussion in 'General ME/CFS News' started by Mindy Kitei, Oct 27, 2012.
The CDC and Wessely have been lumpers, not splitters.
Your preference may not sit well with either ME patients who don't want to be lumped in with CFS or with CFS patients who don't what to be labelled with chronic fatigue. In any case, the lead here is coming from the scientific community, not from the patients.
(By the way, I'm not in the UK.)
I know, but I think they could and would use the strategy I described. They say all kinds of nonsense and change their position and no one, other than patients and the good clinicians, seem to notice. At any given time, they will do whatever causes the most confusion and makes us seem crazy.
sorry, where are you, can I ask?
Also, sorry, I think I was being unclear, I ended up not supporting the recommendation that the coalition made to include CFS in ME/CFS. I advocated what I said about throwing out the name "CFS" entirely and just having ME and ICF. I thought the coalition proposal was fine in most other respects.
From Myalgic encephalomyelitis: International Consensus Criteria.
In other words, Chronic Fatigue Syndrome is a term that was mistakenly assigned to ME patients. And the truth is, the CFS label did not exist until the government assigned it to an outbreak of ME in Lake Tahoe. It did not exist before this to describe a another illness. It was invented to be applied to these people. Calling this a separate illness gives validity to an invalid definition. It needs to be replaced, not embraced. And the plan is to begin by using the term " myalgic encephalomyelitis/chronic fatigue syndrome" to get people used to the term. Also, validating CFS as superset of ME makes things worse, because it would categorized ME as a fatigue illness.
What I would like to see the DHHS do is admit that naming it CFS was a mistake, and admit that these sick people (and others like them) have ME. Admit that CFS never existed as it is described, because it was actually ME that was misnamed and misdescribed. But I'm not holding my breath
I can't agree with you that the Coalition's position is fine in most other respects, Justin. The Coalition takes the position that ME and CFS are the same. They're not. Fukuda-defined CFS, for example, is not the same as ICC-defined ME. The Coalition argues further that the ICC supports its position that ME and CFS are the same. It doesn't. The ICP makes its opposing position abundantly clear:
The ICP panel invites researchers to remove ME patients who satisfy the ICC from the “broader or other criteria for CFS or its hybrids” and to validate ME and CFS. The process would be one of progressively removing subsets from CFS:
The process of validation might lead to the outcome that you suggest. CFS might ultimately be emptied. But the scientific community, not patient groups, must make that determination. If I understand the advice arising from the FDA's webinar for patient advocacy, arguing against our experts in the scientific community isn't likely to be a winning strategy.
I think that the coalitions position was a good political one in the political situation at the time. However, things are moving fast. I don't think its sound under current conditions, particularly with the people who wrote the ICC coming out and making a stand. One of the reasons that the idea of ME/CFS was sound was that, at the time, very few of the researchers would make a stand and say ME and ICF and CFS are different in a clear unambiguous way. It was their opinion I think, but they were being conservative in expressing it. Without our researchers making a stand, our claims looked vacant.They have now done so, clearly disambiguating ME from ICF from CFS. Hence the politics has moved on.
The science is however not up to us, as Ember points out. Ultimately the labels will be chosen by researchers and the medical community. We can make a case, but it will only be superficial. It is what is discovered by the researchers that will drive the diagnostic labels. We now have multiple pathogenic processes and potential diagnostic biomarkers being looked at. Tick tock, its only a matter of time before we see something result, or am I being too optimistic? I don't think I am too optimistic, because I do understand that science can be slow, particularly when funding is so tight. "Only a matter of time" could still be years more than I am happy with.
The Coalition is saying ME and CFS are the same illness. It is not saying that all the definitions people have come up with are the same. The fact that there are a bunch of lousy definitions out there doesn't change the way sick people feel.
The Patient Clinic Leaflet that encouraged patients to become PACE Trial participants states: “Medical authorities are not certain that CFS is exactly the same illness as ME, but until scientific evidence shows that they are different they have decided to treat CFS and ME as if they are one illness (http://pacetrial.org/trialinfo.html).”
“If you wish to converse with me,” said Voltaire, “define your terms.”
The ICC defines my terms. So if you wish to converse with me, read the ICC.
The International Consensus Criteria define ME. The ICC document concludes: “Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.”
The International Consensus Primer similarly separates ME from CFS, adding:
Wrong. Here's what the ICC says:
Please don't quote out of context, Andrew. Read the whole paragraph, including the explanation that the ICC is an ME definition: “The scope of this paper is limited to criteria of ME and their application.” Then read the whole ICC document, including the conclusion. Then read the ICP.
The context is the ICC. That's why I posted a link.
The International Consensus Panel has gone out of its way to clarify the ICC, especially in responding to Drs van der Meer and Lloyd, who write, "Although it is a widely held view that ‘a better name is needed’ , it is unfortunate that the authors propose to revert to the term ‘myalgic encephalomyelitis’ (ME), abolishing CFS:”
You have taken that out of context. The article goes on to state that he is referring to definitions, not the actual illness. He points out the problems with the Reeves and Oxford Criteria. No place does he say these identify an actual illness. In fact, he points out that Reeves doesn't require any physical illness. He also takes issue with Fukuda for not requiring post exertion exacerbation. In contrast, he affirms the Canadian Consensus Criteria. Anyone who actually reads this will see that it joins ME and CFS together. And by this I mean the illness, not every bad definition that's out there.
By what definition of CFS are you claiming that ME and CFS are being joined together here? Surely this statement by the International Consensus Panel separates ME from CFS by virtually any CFS definition:
I was referring to to the Canadian Consensus Criteria. It is titled "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:
Clinical Working Case Definition, Diagnostic and Treatment Protocols."
He is distinguishing the definitions and pointing out what is lacking in some of them. And as I pointed out before, he affirms the Canadian Criteria, which joins ME and CFS.
The International Consensus Panel separates ME from both CFS and ME/CFS. The “Response to ‘A controversial consensus’; By the International Consensus Panel” advises:
The International Consensus Panel again separates ME from both CFS and ME/CFS in the ICP:
First, you are not quoting the ICC, and second, no place does it legitimize Chronic Fatigue Syndrome as a separate illness. As I pointed out before, they are criticizing most (but not all) of the definitions associated with Chronic Fatigue Syndrome, except for the ICC and Canadian. As I demonstrated before, the Canadian joins CFS and ME and as I demonstrated before, the ICC says it should replace the CFS term. It does not say CFS is a correct term to be embraced. It does not legitimize that term. And no place in any of this does it say that the sick people who were diagnosed with CFS are to be cast aside, just because of all the lousy definitions that were used.
And btw, for those who might be getting confused watching this circular discussion, it is very dangerous to keep saying ME is a subset of CFS. To do so promotes the idea that it is a fatigue illness. There are many illnesses with fatigue, such as cancer, but we don't classify them under Chronic Fatigue Syndrome.
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