Please Don't Let it Die

Have you been paying attention to the U.S. Congress lately? Noticed that since the passage of the Affordable Care Act, they've not done anything noteworthy that would create progress on any major problem? The reason: gridlock.

What causes gridlock in Congress? Two groups that won't budge on their position, even in the slightest, so that an agreement, a compromise, can be reached. Those are called "hardliners." Illegal immigration reform is a primary example. G.W. Bush tried it; Obama; even McCain tried it.

According to Wikipedia, the last time Congress made any change to immigration law was in 1986. Let's see, that's 29 years ago. They tried in 2005 with a reform bill passing the House, and in 2006 with a reform bill that passed the Senate. So why didn't it get signed? The two bills were different and the committees could not come to an agreement. It died in Congress, particularly in Congressional committees. No progress. Status quo. Problems continue. No action for 29 years.

So, Obama comes in and says he's going to do some reforms without Congress, because they can't agree and can't act. They can't produce anything because they are unwilling to compromise, a whole bunch of hardliners. They debate and do power plays to force their position or prevent their opposers from winning. It's win or lose, not how can we work it out. So, neither has enough power to force their position on the opposition, so nothing changes.

It's not about immigration
You might think my motivation for writing this is a concern over immigration. It's not. I am concerned that "hardliners" on the name and criteria debate will cause the IoM report to die, leaving us with a status quo for another ten years.

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. Let's see if the IoM process turned out as bad as expected.
  • The fear was that ME/CFS ignorant (no experience with the disease) would be making decisions. But the majority, 8 out of 15 on the committee, were ME/CFS experts or patients.
  • The fear was that they would not recognize PEM as the primary identifying symptom. But they made PEM a requirement in the criteria.
  • The fear was that they would give too much credence to the PACE studies. Yet they said there is no conclusion that GET and CBT are effective treatments.
But that's not enough for hardliners. Only Canadian Consensus or ME-ICC will do. The US government, through the IoM, has come closer to what we want than what we have now: Fukuda. But are we going to reject it still? So, will we try to destroy it, leaving us in gridlock, in status quo? Because we know the US government, especially now, is not going to just endorse a criteria 12 years old (doesn't include recent research) and not endorsed by an independent committee of experts who used the literature evidence as their guide. Are we going to try to push what we want through power plays, which means even if they did accept what we want it won't be accepted as scientific by medical professionals? In that case, we still lose.

Are we, including other experts, going to insist on our pet amendment and criticize the name or criteria and try to block it if it doesn't have our amendment? By what scientific (and expensive and time-consuming) process would an amendment be made so it has credibility for being evidence based and not popularity or politically based?

And if we end up stalemated without any negotiations or openness to work with the US government health agencies, we may find the US government just acts anyway, without including us. They hold the power. Do we want them to just ignore us and our experts?

I see some parts of the name and criteria I think ought to be changed. But I am not so arrogant enough to say I know better than those disease experts and patients who served on the IoM committee. I have the highest respect for these loyal and knowledgeable doctors and researchers. And even if I had served on the committee, might I have made a compromise because causing a stalemate on the committee or putting in a dissenting opinion would have done harm to the good of the whole?

Pat Fero said we can't let the perfect be the enemy of the good. Progress can only happen when there is compromise when working on a committee, whether it be in politics or science.

A lot is at stake
I say it is time to act on this opportunity for progress. It may not come again if we don't do something. What's the chances that the government will spend any more money to solve the name or criteria problems if IoM report is rejected due to popular demand? Just imagine someone suggesting it within the government. "Remember the SEID failure" they will hear. $1 million that didn't produce any changes. Can't you hear them now: "You can't solve this because disease experts and patients will not be happy with the evidence; they will only be happy if they get their way based on their opinions. They don't respect the scientific process we use for all other diseases." Don't give them the satisfaction, I say.

And don't kid yourself. Publishing more papers with a criteria in medical journals will just fill space in the journal unless it has the credibility of a large medical professional organization of certified and trained experts or the IoM. There would be no structure for educating doctors on it or disseminating it to all doctors. No one but large medical professional organizations or the government can do that. Has the CCC revised or ME-ICC, published in journals, made a difference in main street medicine? No.

I know the stakes are high. And it feels like it will be a long-lasting situation. So we want it perfect. But did you know that it used to be common for a bill to be passed in Congress and then another bill passed later that makes changes? Why can't this be the case here? The IoM committee recommended a review of it all again in five years. I know it's been so long since the government has done anything, it's hard to believe they will keep this as an ongoing process. But what's the alternative?

The American College of Rheumatology and the American Academy of Neurologists and the American Medical Association are not going to step in and save us from the CFS label or Fukuda and Oxford if the IoM report dies due to criticism. And the IACFS/ME lacks the muscle or clout for many reasons, one being that they are not certified or trained experts in the disease.

I say we use all our force to make the US government hire the dissemination czar the IoM recommends and educate the doctors with those biological abnormalities mentioned in the IoM physician's guide. Tell doctors about PEM and why our bodies can't tolerate exertion. And push for them to dedicate more money to researching this disease. Then call for them to convene the experts, in the IoM framework if needed for credibility, and have it all reviewed within five years.

I'd hate for debate and disagreement to give the US government an excuse to do nothing. How long then before they try again? Decades?

I'm worried
This concern actually made me anxious a few days ago. Will this opportunity pass, leaving us in gridlock more decades?

But I gradually saw more and more people saying (social media) that the IoM report recommendations should be accepted. There for a few weeks, I was concerned that what seemed to be the only voice speaking publicly, expert and patient criticism, might lead us to nothing since I don't imagine the US government will spend money on this issue any time soon, if this effort didn't produce change. I just don't want to end up with that dadblasted name for my disease while experts and patients insist and government won't budge.

What can you do? let it be known in a public way if you think the IoM report recommendations should be acted on, not because they are perfect or because it's what you think is ideal. But do it because it is the only workable option for progress in the name, criteria and physician education that we have at this time.

We have two realistic choices: The US government accepts and does what the IoM report recommends, or we stay in the continuous debate and gridlock for years. There is no will, and now no money behind the CCC or ME-ICC becoming the one promoted by the US government. Did 50 experts signing a letter make that happen? No, it's not going to happen.

So if you want progress, speak publicly, especially to CFSAC members, and tell them the same thing many people have said they want Congress to do: stop the gridlock, be willing to compromise for the sake of some progress and act.

Well, I was going to say something about the coding issue, but my blogs are too long. So I'll save it for another blogpost.

Comments

  1. I absolutely and totally agree, Tina. We MUST put the differences behind us and work together before we lose the best opportunity we have had since I became ill nearly 40 years ago!

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  2. Such a passionate article Tina, however there is no compromise possible over the truth of ME, which is most fully expressed in Severe ME -given that SEID does not include Severe ME, it cannot be said to represent ME, it could even lead to an ongoing denial of the horrific symptoms, the unspeakable suffering. We have always insisted on the ICC, not the CCC Criteria as a starting point -but even they do not include paralysis, in our experience a key component of Severe ME. I totally support what you say about speaking out, not enough are.

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