PANDORA letter to Wanda Jones

Nielk

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I got this e-mail from PANDORA.

We have been very disappointed in the lack of response from Sec. Kathleeen Sebelius to the following:
• Patient emails asking for cancelation of the Institute of Medicine (IoM) contract to create an ME/CFS definition consensus
• The letter from many experts asking the contract to be canceled
• The Chronic Fatigue Syndrome Committee (CFSAC) recommendations, request from patients and many experts that the Dept. of HHS endorse the 2003 CCC


Sec. Sebelius is very busy with the problems of the Affordable Care Act website. So, we contacted Dr. Wanda Jones, who is third in line under Sebelius and the former designated federal officer for the CFSAC. We told her that there needs to be proactive communication from the Dept. of Health and Human Services (HHS) instead of surprise announcements. We told her the FDA is being more transparent and communicating more, and it is going well for patients and for the agency.

We asked her to inform the patients on answers to the following questions:

1. Can the IoM contract be stopped? If not, why not?
2. Can the Dept. of HHS endorse the 2003 CCC as patients, many ME/CFS experts and the CFSAC want? If not, why not?
3. Why did the Dept. of HHS not follow the CFSAC recommendation to host a workshop of ME/CFS experts and instead contracted for the IoM to do a study?
4. Considering that the Gulf War illness treatment study came back with requiring only two symptoms for diagnosis and that the NICE Guidelines are one of the things considered in the ME/CFS IoM study, what guarantee do the patients and ME/CFS experts have that something more broad, and therefore more harmful, than Fukuda won't be the result?

Dr. Jones told us she will work with the current CFSAC designated federal officer, Dr. Nancy Lee, and put out a statement soon addressing these issues.

For more background information on this issue, see our statement on IoM request for nominations and ourposition on ME/CFS definitions.

Lori Chapo-Kroger, RN

President and CEO
 
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I'm so happy that PANDORA was able to reach out Dr. Jones and get a promise that these questions will be addressed! Every time I see embattled Sebelius on the news these days, I think that we will never get any answers from her now. Dr. Jones never ceases to please - she is a true role model for all government employees.
 
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Ecoclimber

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Pandora org came out with a letter. Do you see anything wrong with this letter beside undermining the advocacy groups? I do. Amateur advocacy at the worse. Cross-examination 101. Basic stuff, folks. You never asked questions on cross unless you know the answer. You just manged to boxed HHS in without any manuvering room. On redirect HHS will offer an intractable position as an answer. Why would anyone ask these type of questions? If you conducted some research, they have already responded to these questions in one form or another.

1. Can the IOM contract be stopped? If not, why not?
No, HHS has always honored its commitments to the IOM and there is no precedent that has been established to change that now.

2. Can the Dept. of HHS endorse the 2003 CCC as patients, many ME/CFS experts and the CFSAC want? If not, why not?
HHS and Secretary Sebelius have made it clear on a number of occasions that they will not accept the 2003 definition. It is not the role of HHS to develop patient criteria. The medical profession and the scientific community have made it known that the 2003 CCC criteria was too difficult and ambiguous to follow.


3. Why did the Dept. of HHS not follow the CFSAC recommendation to host a workshop of ME/CFS experts and instead contracted for the IoM to do a study?
We believe strongly that a panel of non-bias experts encompassing all major fields of science would be the correct solution

4. Considering that the Gulf War illness treatment study came back with requiring only two symptoms for diagnosis and that the NICE Guidelines are one of the things considered in the ME/CFS IoM study, what guarantee do the patients and ME/CFS experts have that something more broad, and therefore more harmful, than Fukuda won't be the result?
We are quite confident of IOM Panel’s expertise and knowledge and that the final result will be in the best interest of both the ME/CFS patient community and medical practitioners

Thanks Pandora for you lack of coordination with other patient advocates. An organiztion undermining the efforts of other patient advocate groups....throws up hands....

http://www.mecfsforums.com/index.php/topic,18148.0.html

Eco
 

justinreilly

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PANDORA is just being WEAK! They are tepid with their advocacy as usual. I don't think they are evil like CAA, but they are acting foolishly. They need to DEMAND not ask why or why not!
 

Bob

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PANDORA is just being WEAK! They are tepid with their advocacy as usual. I don't think they are evil like CAA, but they are acting foolishly. They need to DEMAND not ask why or why not!
Every one has a different advocacy style. And their approach seems to have achieved a result. I'm not yet aware of any one else getting such a response. But we don't know exactly what's going on behind the scenes. I don't agree that making requests and using other non-confrontational advocacy styles (e.g. presenting reasoned arguments) indicates weakness. There's room for all styles of advocacy and it's our combined efforts that will probably make the difference in the end.
 
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justinreilly

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Bob, we will NEVER get anywhere by making feeble requests of HHS. The past thirty years have shown they will only act appropriately if forced to. As Prof. Lipkin noted, we need to act like ACT UP. They got results fast by being out of order and theatrical, not this useless submission of questions. We already know that the contract can be cancelled, etc. All that's left is to force them to do it.

Unlike some people, I don't think PANDORA are all bad. Some of the things they have said have been good. But there's also bad and inadequate advocacy mixed in there. Their advocacy is INSUFFICIENT and when the stakes are this high, that is not good enough. They need to really step up to the plate like our 50 experts, etc have. And then go beyond those efforts since they are an advocacy org.
 
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