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"Please Don't Let it Die" by Tina Tidmore

Ember

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Tina writes, “So we didn't like the IoM process. But that is the recognized, scientific process the US government uses. Our disease won't be respected if we say our disease needs a pass on the way scientific conclusions are reached.” But the IOM itself has no credentials when it comes to writing clinical diagnostic criteria.
 
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Sasha

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Tina writes, “So we didn't like the IoM process. But that is the recognized, scientific process the US government uses. Our disease won't be respected if we say our disease needs a pass on the way scientific conclusions are reached.” But the IOM has no expertise in writing diagnostic criteria.
And yet the IOM were hired to do the job by the Department of Health and Human Services (HHS), the National Institutes of Health, the Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention, the Food and Drug Administration, and the Social Security Administration.

Saying that the IOM have no expertise in writing criteria when they've been hired by these decision-makers is useless. We have to face reality. These organisations have trusted the IOM to do this and they've spent $1m on it. They're not going to turn round now and say, 'It has just been pointed out to us that the IOM have no expertise in writing diagnostic criteria. We accept that that is the wrong way to reach scientific conclusions and now we'll do what a faction of patients want, even though we've rejected ME/CCC for a decade.'

You may not agree with what has happened but it has happened. This is real. We must now make the best of our position or seriously risk getting stuck with the appalling, existing CFS/Fukuda.
 

Dolphin

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You may not agree with what has happened but it has happened. This is real. We must now make the best of our position or seriously risk getting stuck with the appalling, existing CFS/Fukuda.
Also, the CDC is still coming out with papers using the empiric criteria (Reeves et al., 2005) which they say are just an operationalization of the Fukuda criteria (this is literally true, but it is a rubbish operationalization). We could hope the CDC won't use the empiric criteria (Reeves et al., 2005) with new studies, but can't be sure.
 

A.B.

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@Ember what makes you think that adopting the CCC / ICC is a realistic goal? The 50 experts letter didn't do it. What else could? A lobbyist perhaps? Writing more letters?

I'm not trying to be inflammatory. I just don't understand how people who oppose the IOM report envision the process of getting to their goal.
 

Ember

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I'm not trying to be inflammatory.
That's a refreshing comment in a climate where some choose to characterize those they oppose as "hardliners." The IOM Committee has yet to clarify the relationship between their proposed SEID criteria and the ICC.
 

CBS

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Tina writes, “So we didn't like the IoM process. But that is the recognized, scientific process the US government uses. Our disease won't be respected if we say our disease needs a pass on the way scientific conclusions are reached.” But the IOM itself has no credentials when it comes to writing clinical diagnostic criteria.
I strongly agree. AT BEST, the IOM report is a literature review and an opinion piece written by a group that is passionate about ME/CFS but that has little to no training in creating valid diagnostic criteria. The IOM committee overreached on the name, the diagnostic criteria while failing to ask for a specific amount of money to be used for specific research goals.

As for the defense that it must be good because they spent a $1 million on the project, that makes no sense to me and I don't see it (we must have been robbed). For that kind of money they could have hired a PR firm if this was simply a re-branding effort. If we had intended it to be substantive, they should have hired scientists with real research experience and an actuarial firm.

As for the dismissive "hardliner" label directed at anyone who fails to show an adequate degree of gratitude, keep those fingers in your ears and don't come complaining to me when you're still in the same place years from now.
 

Ember

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Saying that the IOM have no expertise in writing criteria when they've been hired by these decision-makers is useless. We have to face reality....This is real.
Which had evidence and a rational argument to back it up.
Evidence and rationale argument can be presented just as well without suggesting that others are out of touch with reality.
 

Sasha

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As for the defense that it must be good because they spent a $1 million on the project, that makes no sense to me
You're not referring to my point here, are you?

These organisations have trusted the IOM to do this and they've spent $1m on it. They're not going to turn round now and say, 'It has just been pointed out to us that the IOM have no expertise in writing diagnostic criteria. We accept that that is the wrong way to reach scientific conclusions and now we'll do what a faction of patients want, even though we've rejected ME/CCC for a decade.'
Because I wasn't saying the report must be good because they spent $1m on it. I was saying that all those organisations aren't now going to ditch a report they spent $1m on, just because some patients are saying (as they did even before the committee started work) that the committee weren't qualified.
 

Sasha

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Evidence and rationale argument can be presented just as well without suggesting that others are out of touch with reality.
Fair enough, my apologies. So you said:

Tina writes, “So we didn't like the IoM process. But that is the recognized, scientific process the US government uses. Our disease won't be respected if we say our disease needs a pass on the way scientific conclusions are reached.” But the IOM itself has no credentials when it comes to writing clinical diagnostic criteria.
What was the relevance of your statement to Tina's argument? What real-world consequence arises from your opinion that the IOM has no credentials when it comes to writing clinical diagnostic criteria? Do you think that all those organisations that spent $1m on this will now change their view about the IOM's credentials for writing this report?
 

Ember

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What was the relevance of your statement to Tina's argument? What real-world consequence arises from your opinion that the IOM has no credentials when it comes to writing clinical diagnostic criteria?
Tina claims, "Our disease won't be respected if we say our disease needs a pass on the way scientific conclusions are reached.” But patients needn't be intimidated in that way.
 

Sasha

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Tina claims, "Our disease won't be respected if we say our disease needs a pass on the way scientific conclusions are reached.” But patients needn't be intimidated in that way.
I'm afraid I don't see any connection at all between what you're saying and what Tina said, or any relation to my second question.

Let's turn to my third question, then:

But the IOM itself has no credentials when it comes to writing clinical diagnostic criteria.
Sasha said:
Do you think that all those organisations that spent $1m on this will now change their view about the IOM's credentials for writing this report?
 

CBS

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You're not referring to my point here, are you?



Because I wasn't saying the report must be good because they spent $1m on it. I was saying that all those organizations aren't now going to ditch a report they spent $1m on, just because some patients are saying (as they did even before the committee started work) that the committee weren't qualified.
No, I wasn't referring to anything you wrote. I was responding to the strawman that Tina built out of the fear that the hardliners would undermine an otherwise solid process and that ME/CFS would never be given any money for a name or a diagnostic criteria again (not that I would mourn the loss if the outcome was as unscientific as the IOM process). Lots of scary hypotheticals in Tina's piece, (kind of felt like I was pregnant and trying to make my way through the loving throngs outside the Planned Parenthood clinic).

Fluge and Mella are going to have a lot more to do with motivating the HHS than the IOM report ever will. When a biomarker or a treatment that suggests an underlying pathology is found, I'm pretty sure that all of these irrational funding beliefs ("shhh- we'll get the money but only if we behave") will dissipate.
 

Sasha

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No, I wasn't referring to anything you wrote.
Thanks! Good to know.

I was responding to the strawman that Tina built out of the fear that the hardliners would undermine an otherwise solid process
That wasn't my reading of what she said - I don't recall her being a fan of the process, just her saying that that was the process that we'd had.

Lots of scary hypotheticals in Tina's piece
I'm afraid I agree with her. There are only three basic options: SEID/IOM, CFS/Fukuda, ME/CCC/ICC. If SEID/IOM is rejected, that leaves CFS/Fukuda and ME/CCC/ICC. These organisations have been rejecting patients' pleas for ME/CCC for over a decade. Why would they accept those pleas now? After ignoring the 50-clinicians letter and spending $1m on the IOM report? Much more face-saving and easier for them to stick with CFS/Fukuda if they're going to reject the report.

I'm pretty sure that all of these irrational funding beliefs ("shhh- we'll get the money but only if we behave") will dissipate.
I only saw one person say that. I don't think it's a general view. I don't think most of us think we'll get money only if we behave. Rather, we need to take action and apply pressure. The IOM report gives us a chance to apply that pressure.
 

Nielk

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@Sasha said
Do you think that all those organisations that spent $1m on this will now change their view about the IOM's credentials for writing this report?
How do you think grassroot movements for change start? By asking for things that they know will be accepted? Then there is no need ever for demonstrations. Do you think that the AIDS movement would have accomplished anything if they had given up from the start because the government was not going to change?

Dr, Lee stated that the government is not in the business of creating criteria for disease. Tina stated that this is usual in the US. The fact is that the US, unlike the UK has a privatized medicine. All criteria for disease are created by the private medical experts - not the government.

This was totally unprecedented in the US that the government sponsored a contract with the IOM to create criteria. This is dangerous not just for our case, but this will be a precedent for the ability of the US government to highjack any disease and state: "we don't like your criteria, we will create our own criteria instead". This is not right and should never have happened.

The fact that it did happen, does not mean we need to accept it. Should the freedom fighters not have fought for freedom from slavery because the government already legalized it. Should they have not protested against it?

Should women not have fought for their rights to vote because it was already decided that they could not vote?

Where is the logic in accepting things that we feel are unfair just because the government made a wrong decision?
 
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Sasha

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Do you think that all those organisations that spent $1m on this will now change their view about the IOM's credentials for writing this report?
How do you think grassroot movements for change start? By asking for things that they know will be accepted? Then there is no need ever for demonstrations. Do you think that the AIDA movement would have accomplished anything if they had given up from the start because the government was not going to change?
Not all grassroots movements are successful. It's important to be strategic and to recognise where gains are likely and where they're not, and - importantly - to recognise the risks if you push for a particular thing if you fail. In this case, the risk of failure is to return to a very damaging status quo.

Do you think that all those organisations that spent $1m on this will now change their view about the IOM's credentials for writing this report?