For the past 11 years, the IDSA has refused to include patients (as well as researchers and physicians who are not like-minded) on its Lyme guidelines panels. The group has also fought against patient representation on federal and state advisory boards. On March 9th, they announced a new guideline development process. This time, they have included a patient representative. Why the sudden change? And, more to the point, should patients rejoice or weep? . . .
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The IDSA is accepting public comments about their guideline review process until April 9th. Patients can use the IDSA comment form to express their concerns and outrage regarding the lack of any credible patient representation.
Public Comment Period for IDSA/AAN/ACR Lyme Disease Guideline Project Plan
The full Project Plan and link to the data collection mechanism can be found below. Note: When submitting comments, do not include medical information about yourself or another person.
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
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I filled it out. If lymedisease.org had the resources to contact her, they should either release her name so we can speak to her or they should discuss her possibly stepping down.
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I understand they know who the woman is. I agree with Droid - we should ask her to step down and put a real patient in her place.
Posts: 13116 | From San Francisco | Registered: May 2006
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Lymedisease.org has stated that they did not include the Consumer Representative's name in the article, because their primary issue is with the IDSA. It is the IDSA that choose her for the panel and it is the IDSA that has the power to remove or replace her. The Consumer Rep.'s name isn't secret, it is on the IDSA project plan.
There are other serious concerns with the IDSA process such as the inclusion of many of the former IDSA guidelines panelists including those with known conflicts of interest, the exclusion of both scientists and physicians with a broader perspective towards chronic Lyme disease, as well as the biased wording of many of the scientific questions proposed by the IDSA.
More information about these additional concerns should be forthcoming from patient advocacy groups. Submitting scientific evidence and analysis to the IDSA is also appropriate.
This is an absolutely critical time for patients to make their voices heard. Patient advocacy groups are considering a number of possible actions at this time.
Submitting patient concerns to the IDSA is one way to let them know that the Lyme community is well aware of and is demanding changes to the ethical breaches and violations of the Institute of Medicine Guidelines Standards for Trustworthy Guidelines in their Lyme disease review process
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Breaking up the post for easier reading for many here -
droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
This is the response I received from the Admin on the comment section.
Robin, I saw you posted as well.
I have to question the validity of this. I understand the problem isn't with the woman but if she is going to represent us, we have to let her know what she is representing.
They are also editing and deleting comments at the bottom.
The downside is way too damaging to not talk to her "because it would be viewed as harassment"
I can only question lymedisease.org in this case. We've pleaded with the IDSA for years. They don't care. If this woman is going to be an ambassador of sorts, we should know who she is.
The whole point of this panel is transparency. It even has that word in the title.
She must step down or at least be able to be communicated with.
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