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What Should Phoenix Rising Tell the IOM Committee?

Roy S

former DC ME/CFS lobbyist
Messages
1,376
Location
Illinois, USA

@alex3619 -- I just found this term in case you don't know it. I think it's especially effective with ME patients who have severe mental stamina problems and cognitive problems.
http://rationalwiki.org/wiki/Gish_Gallop

On (a): This is ignoring the political process. Any claim this is purely scientific, should you be implying such, is unfounded, its an empty claim. We need to make a political comment, what we don't need to do is have it dominate the presentation.

On (b): While conspiracy theories are common, its a mistake to miscontrue reasoned analysis as conspiracy theory. The problems exist, and can be demonstrated to exist, its the reasons behind those problems that give rise to speculations of conspiracy.

On (1): Why are they misguided? It can be argued that they are politically naive, and it can also be argued that they were misguided before by not speaking out till recently. The entire scientific and medical communities are typically not very politically minded in my view, and its problematic the same cannot be said for some in psychogenic medicine.

On (2): "there can be no expertise in an undefinable medical condition." ?????? What the? This is a serious logical error or misleading. Its a category mistake. One can argue that any definition of a unexplained putative disorder such as CFS or ME is flawed, and that no such disease group exists. One cannot rationally argue that the patients and their problems do not exist. Our experts have expertise in dealing with maybe hundreds of thousands of patients. That cannot be dismissed, though the extend of the validity of such expertise can be questioned. Yet they are the most experienced ... who else are we going to trust? That doesn't mean we shouldn't be skeptical of their claims. Reasoned skepticism is valuable. Unreasoned dogmatic skepticism is too common though, and oxymoronic.

On (3): On the basis of what evidence? It started as a consensus definition, however since then it has been used, tested and compared in multiple studies. That is what separates it from the ICC, and hence why the 50 experts prefer it in my view - its not only more politically acceptable, its been more thoroughly tested and applied in the real world.

On (4): Empty emotional rhetoric. Its an appeal to shame, not reason. Its using emotional rhetoric to silence debate.

On (5): "The IOM is the most significant administrative opportunity afforded M.E/CFS patients in 20 years, failure to engage with it fully, bespeaks monumental cowardice or pathological obstinacy." [My underlining, my bolding]

Its an opportunity all right, but an opportunity for what? That is the question. It is primarily an opportunity for the administration, that I agree with. What kind of an opportunity is it for us? The whole issue also ignores a really big problem. We have input on a very small percentage of the material used in the process. We have no input on the process itself, which is highly flawed, and increasingly debated within medicine.

Cowardice or obstinacy? Are these the only alternatives? Is emotional and manipulative rhetoric appropriate? Where is the rational basis for such a claim? This runs afoul of multiple fallacies in one sentence. Its using emotional manipulation not reason. Its creating an artificial dichotomy ... where for example is the option for a reasoned political analysis and response? Its creating an artificial argument construct, one that does not reflect reality, and then arguing based on it.