Blog: How Do You Win a Rigged Game?

[slayadragon]

>Of all the problematic ways in which the CAA has acted toward patients throughout its history, this may be the most cynically manipulative move yet. Those “advocates” understand how much it costs people with this disease to attempt to act on their own behalf. They know how demoralized this community is after having its hopes of a cure ripped away from it. They know how hard it is for people who have lost so much of themselves to believe that anything that they might do could have a positive result.
>But the underlying truth here is that both the government and the CAA care tremendously about the opinions of patients. If the patient community as well as specialist physicians remain firmly opposed to this, it will make it very difficult for them to move forward.
>This is the reason that the CAA is putting so much effort into trying to manipulate patient opinions about the IOM study — because patient opinions matter. And that gives patients much more power than most of them realize.

>The other truth here is that even if the IOM committee ends up going through (which, despite what the CAA says, is by no means a sure thing at this point), the best way for patients to influence what happens on that committee is to fight against it every step of the way.
If patients agree that IOM has the power and cooperate with their efforts, then the committee will be able to say that they took patient wishes into consideration — while at the same time doing whatever they please.
>On the other hand, if patients continue to insist that the IOM is going to come up with an inappropriate definition and that we are going to be mad as hell about it when they do, IOM will be under much more pressure to include our experts on the committee and to not stray as far from the Canadian Consensus Criteria (CCC) in their recommendations.
http://paradigmchange.me/wp/?p=208

 

[Wayne]

Excellent write-up and historical perspective (from the last link). --- I signed the first petition, but didn't feel comfortable giving out so much personal information on the second (the one to Kathleen Sebelius). Any way to get around those requirements?

 

[slayadragon]

I've been told in the past on other petitions that it's fine to make up an address (e.g. 111 ME Street) if you don't feel comfortable sharing. No one is going to send out physical mail anyway.

 

[Nielk]

There is something you can do if you don't like or feel comfortable with what is happening with the HHS/IOM contract. Your action will make a difference. Every letter, e-mail, phone call, signing of petition matters. They all get read and there is power in quantity.

If you would like HHS to cancel the IOM contract, please take action. Please write to your representatives in congress HERE. You can sign the petition to stop the IOM contract HERE. The petition in support of the expert's letter is HERE.

 

[alex3619]

Even with many of our experts on the panel, if the criteria used are overly restrictive the game is still rigged.

How do you win a rigged game? Going with the metaphor: point out how they are cheating and protest, change the rules of the game, or find a new game and ignore theirs. Protesting the HHS/IOM deal is the first, looking to put our experts on the panel the second, and the third is what we do later. We make them irrelevant.

 

[aimossy]

wish we could just band together like glue globally, get money to good research, and find the damn answers ourselves by doing that and give them all the finger!!!! some of that is showing signs of happening obviously.
I have signed the petitions, been donating money and joining organisations.
I hope IOM have to take recent research into account, if they don't can you argue that down the line?
norway and lipkin stuff publishes soon how could they ignore research of this quality legally?
would this research sway their decision positively towards adopting the CCC or international criteria?
I hope that nominations for people you guys would approve of have been made through as many organisations as possible so nominations add up. Who accepts and decides on the nominations outcomes are there rules?
It all just seems to be happening so anyone had any ideas about slowing up their process or getting our feet in there to influence somehow over the next 18months.seeing as it is continuing. more research will be out even next year and evidence builds.
Think I read somewhere nominations by end of this week.

 

[Seven7]

Question I don't know much politics but can somebody explain something to me and maybe this will help me and other patients to understand better what is going on.

1) We requested the definition to be reviewed and the name to be changed, and that was a recommendation, is the issue that we didn't specify who we wanted to do this??? Do we look like crazy people asking the government to take these actions then we decide we don't want it done? Or is it the Issue that is this particular organization doing it.

2)If so, shouldn't we specify what we consider the people or organization better fit to do this instead of IOM.

Sorry for my ignorance in advance.

 

[alex3619]

Its not an issue with the IOM as an organization. Its an issue with the way the IOM does this. We already have an example with GWI/CMI. "Evidence-based" is becoming a buzzword, and simplistic uses of this philosophy railroad science, and leave it open to manipulation and distortion. Much of the "evidence-based" medicine is poor, particularly in anything which is vague or ill-defined, and that includes all of psychogenic medicine.

The IOM is the HHS goto organization for defining things. The problem is the IOM is ill-equipped to do this, and has in the past used methodology that will always result in bad judgement in situations this problematic. Yet they are committed to doing so. Its a very dogmatic approach. The motivation to using evidence-based decision making is a good one, and laudable, how this has been done in practice is however a travesty of reason and evidence. Its like using an out-of-date and badly written cookbook approach. Do this, then that, if you follow the procedures it will be OK, you will get a good result. When in reality what it gives is a highly distorted result.

In cases where things are really well defined then EBM (evidence based medicine) works really well I think. Yet as it moves to more and more poorly defined and unsound areas of medicine it fails. It doesn't handle ambiguity at all well, and well-constructed pseudoscience passes through without question.

The problem though is the IOM was set up to answer questions, to define solutions. So its the HHS goto organization. Trying to work around that is going to be difficult.

 

[Seven7]

Ok so now that we are in this mess, can we submit ORGANIZED evidence??? Maybe we can get all Dr Newton's work, All the 2 day exercise testing results, and the 1000s of immune published papers, If we outweigh the evidence that is already out there for the Psy people then we shouldn't be too bad. I think at this point we need to find a way what is the procedure to submit what they call evidence to be reviewed??

Maybe we can sub categorized it and submit evidence of exercise intolerance, Evidence of OI, evidence of Immunology....

Now that we are in, what can we do to mitigate I guess.

 

[alex3619]

Malcolm Hooper already did that, lnester7, though its something like four years out of date now. Has everyone read Magical Medicine? He warns of the kinds of things we are facing now too.

Oh, total personal plug, did you spot where he cited my advocacy?

Alex.

 

[Nielk]

Question I don't know much politics but can somebody explain something to me and maybe this will help me and other patients to understand better what is going on.

1) We requested the definition to be reviewed and the name to be changed, and that was a recommendation, is the issue that we didn't specify who we wanted to do this??? Do we look like crazy people asking the government to take these actions then we decide we don't want it done? Or is it the Issue that is this particular organization doing it.

2)If so, shouldn't we specify what we consider the people or organization better fit to do this instead of IOM.

Sorry for my ignorance in advance.

Hi Inester,

Good questions:

1) CFSAC produced the following recommendation on 10/12

that you will promptly convene (by 12/31/12 or as soon as possible thereafter) at least
one stakeholders’ (ME/CFS experts, patients, advocates) workshop in consultation with
CFSAC members to reach a consensus for a case definition useful for research, diagnosis
and treatment of ME/CFS beginning with the 2003 Canadian Consensus Definition for
discussion purposes. (10/12)

The recommendation asked for:

-at least one stakeholder's workshop (under CFSAC's umbrella)
-of experts, patients, advocates
-to reach a consensus case definition
-starting with the Canadian Consensus Definition

So CFSAC wanted is to put together a workshop with only ME/CFS stakeholders and starting with the CCC.

What HHS is doing with IOM

-spending one million dollars for IOM to redefine the disease
-a panel of a variety of specialties with a high emphasis to IOM current members
-to reach a clinical diagnostic criteria
-looking at a variety of definitions

These two are totally different approaches.

The outcome of the CFSAC recommendation would have resulted with a definition at least as relevant as CCC but better defined

The outcome of the IOM contract is highly unlikely that it would result with anything better than the CCC. It will most likely result in something vague like they are doing with GWI. There is a strong possibility that it will result in something even more vague than the FUDUKA.

There is also the very high possibility that if this is free to go on, there will be no stopping the damage. One of the results of this re-definition could impact the WHO coding of this disease. Depending on the results, there is the risk that it will be removed from Neurological and be put into "somatic illnesses".

The stakes are so high here.

2) Yes, it was very clear in CFSAC's recommendation. This should have been done under CFSAC's auspices with only experts, advocates and patients on the workshop panel.

 

[Seven7]

Now it make sense!!! this is the best explanation so far tx Nielk.

Ok knowing this then I agree that we should go back to the original recommendation. Is there a way to get the CFSAC's to support us??? We should stick to the original proposal. Or make sure that this recommendation still happens so we have a contingency plan to override the IOM if the results are ridiculous.

 

[Nielk]

Now it make sense!!! this is the best explanation so far tx Nielk.

Ok knowing this then I agree that we should go back to the original recommendation. Is there a way to get the CFSAC's to support us??? We should stick to the original proposal. Or make sure that this recommendation still happens so we have a contingency plan to override the IOM if the results are ridiculous.

The problem is that CFSAC is controlled by HHS. Because CFSAC is an advisory committee, they can only produce recommendations. They don't have the power to affect policy. The voting members have voted on the above recommendation which then goes to the Secretary of HHS to act upon it...or not.

No matter where I look, we seem to be at the mercy of HHS. Except that HHS has to answer to congress and the President. This is why patient advocates are asking us to write to our representatives in congress asking them to look into this. In this climate of sequestration, HHS is wasting a million dollars on an action that patients and their experts are fighting against. Does this make sense?