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NPR Covers the Controversy Over the Definition Effort

slayadragon

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Please consider commenting on the article (or at least marking the comments that you like with the "Up" arrow).

This will be helpful in getting additional coverage in other media and also in influencing the coverage (so that they are less likely to duplicate issues that are heavily criticized).

Thanks much for your help in this!
 
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Wonderful to get some national news attention! And ditto to adding comments. You do have to join or use another account such as google but it is worth it to bring emphasis and personal experience to the readership. I asked my family members to comment also.
 
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Do we invite the press to this events??? Is there a formal process to say hey we are doing a demonstration or there is an important meeting full of controversy??? I am curious if we do it and they don't come to cover it, or they don't cover it because we do not have anything in place to cover this events/???
 
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I was posting a response to a particular comment on the NPR article, only to get an error message that said the comment I was responding to had been removed by a moderator. Here are snipped-shots, before Big Brother sent it down the memory hole ( - sorry I didn't cut-and-paste as well):

npr censorship i.JPG npr censorship ii.JPG
 
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I just saw a very well-written comment which included specific references to problems with IOM's GWI texts' research, etc.* And then it too was gone. (This is a different comment from the one I mentioned above.) :devil:

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*Edit II: See post #20 below.
 
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Firestormm

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I don't think there is much chance of it being 'renamed' Encephalomyelitis. But we were having this debate on t'other thread: ff. http://forums.phoenixrising.me/inde...-27th-1-pm-starting.27859/page-12#post-425349 And have done so countless times in the past.

I did like the picture though. Very apt.

I also wonder at the claim for CPET made throughout the presentations. Can't help but feel that if this had taken place 2 years ago - 'advocates' - would have been demanding 'XMRV' was the way to proceed.

I'm not sure we ever really learn. Still, as Bob said in his article this morning - http://phoenixrising.me/?p=22889&preview_id=22889 - the CDC Multi-site would be a great opportunity to test the small-scale results from Snell. I see he's in the UK next month promoting this research - which does make me a little uneasy. I don't know - well I do - we seem to want to cling to supposedly great results before they have been properly worked through.

Did you all see that the RCT on Primary Biliary Cirrhosis (PBC) funded by MRC/NIHR in UK, completed at the end of last year (2013) for Rituximab. Primarily aimed at addressing fatigue: http://forums.phoenixrising.me/inde...-fatigue-in-autoimmune-pbc.27905/#post-425885 If only we could establish similar autoimmune problems. But maybe in going straight to treatment in trials we'll see something definitive established.

Lots to be excited about I think, and caution is a hard thing to adopt when desperate for answers, but I do think that now the IOM study is under way - I can't see it being stopped - I hope for a good outcome.

NICE when they did their review of definitions did not have $1m to spend and it was by all accounts cursory. I think the worst that can be expected from IOM is a NICE definition - and the best is that perhaps they will more clearly say that a diagnosis cannot occur without PEM being present.

Of course even at this stage of the game, we are only playing with definitions. The entire field could change if something more concrete stands up to replication.
 
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alex3619

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The CPET findings are not like any other findings we have had. This is venerable old school technology, going back to the 40's. Its Gold Standard technology. The results have been found in a huge number of patients, and some doctors now use it clinically. Betsy Keller is (hopefully) publishing her replication soon.

This is not some cutting edge technology. Its about as robust as any medical technology there is. That is why the results are so important.

Other research relies on trying to find a gnat, on a needle, in a haystack, on a farm, somewhere in some country on Earth. That is what it is like to try to find some cytokines, or viral RNA or DNA, when the copy number is miniscule. It can fail. Its subject to false results.

I do not think CPET is in the same category. I don't think we can call it diagnostic as yet, but I think it has (and this is not published, its my current interpretation) close to 100% specificity, and over 95% sensitivity, though I might be interpreting this wrong. In any case the results look far more reliable than most tests doctors rely on. I am concerned though that other diseases may show the same pattern, I don't think the testing has been wide enough. If this is so, its still a test for disability/function in ME, and possibly for PEM.
 

Hope123

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I don't comment on NPR much so don't know their process. But sometimes media sources will delete particularly incendiary comments (not the replies but the original comment that incited it) and the replies attached to it are deleted so the replies aren't taken out of context. On the other side, on some sites, the posters delete their own comments and the replies go away with it.

But yes, ask NPR.
 

Andrew

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My reply was to the article. Here's what I wrote:

Patients and experts have very good reason to be distrustful of the HHS entering into a contract with the IOM. The IOM is the same group that produced the guide called Gulf War and Health: Treatment for Chronic Multisymptom Illness. This is the same guide that has been the subject of congressional hearings and numerous complaints from veteran groups.

As it happens, this guide also contains a section on chronic fatigue syndrome (because some veterans with GWS also suffer from this). I traced the sources in the guide's bibliography for CFS treatment options. Much of it is not evidence based. For example, they recommend graded exercise, and to support this, they reference three web pages that cite no research.The IOM also references two journal articles. Neither of them study whether exercise helps people with CFS, and one doesn't even mention CFS.

I was not surprised that the IOM did such a bad job. It is typical of how government efforts have treated ME/CFS patients for decades. For example, for years patients complained that the CDC is misrepresenting ME/CFS on their website, only to be ignored. But recently the Chronic Fatigue Advisory Committee (CFSAC) reviewed the website. They said that parts of information were cherry-picked and presented bias as fact. You can see these statements and others beginning on page 16 of the minutes at this link on the HHS website (and that was only part of the first report of an ongoing review). http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac_min-11092011.pdf.

But I am not bringing the CDC into this as an extra topic. The IOM referenced the CDC website in their treatment section for ME/CFS. This includes the doctor toolkit that the CFSAC said should be completely removed from the site. You can see the recommendation here: http://www.hhs.gov/advcomcfs/recommendations/06132012.html

There are major flaws in IOM process and quality control, but they decline to correct them. For example, their quality review board cannot compel the panel to correct mistakes or oversights. It can only suggest they do. The IOM justification is to preserve panel independence. The word "independence" sounds nice, but the result is no real quality control. And so if the panel decides to use biased web pages instead of science-based evidence, the IOM review board cannot stop this. Also, there is no opportunity for patients or outside experts to review the proposed final draft to catch mistakes there. The IOM defends this by saying their policy prevents interference. But the result their method is clear. The lack of real checks and balances allowed low-quality work to be published as an authoritative resource, and it is now guiding the care of seriously ill patients.

Considering the gross incompetence the IOM demonstrated in the past, and its complete lack of experience with criteria development, HHS should not have entered into any contract with them. And they could cancel the contract now if they chose to, because government contracts provide for this. But they refuse to do this.

So patients have every right to be very concerned. Not just with this, but about many other things regarding this contract.