Commenting on IDSA Lyme guidelines, part 3. Take our survey
IDSA panel members have no mechanism for learning which outcomes are most important to patients. Help enlighten them by taking this survey.
As we have discussed in Part One and Part Two of this blog, there are certain requirements the IDSA is supposed to fulfill in its Lyme guidelines revision process.
For one thing, panel members should take into account outcomes that are important to patients. However, as currently constituted, the IDSA Lyme panel has no mechanism for finding out what those outcomes might be. (The panel’s lone “patient representative” hasn’t had Lyme, knows nothing about it, and in no way “represents” the Lyme community. Furthermore, doctors who treat chronic Lyme patients have also been shut out of the process.)
Therefore, LymeDisease.org is taking the questions directly to the patients in a survey. The results will be strong evidence of what is important to patients. We will share this information with the IDSA Lyme panel, as well as journalists, legislators, health policy makers, and the public at large.
You can answer this survey on behalf of yourself, your spouse, or your child by providing answers as though you were that person. But please only submit one survey regarding any one person. (For example, do NOT answer on behalf of your child and have your child answer as well.) To avoid duplicates, only one response is permitted per computer.
Click here to take the survey.
- March 28, 2015 at 3:42 pm
The IDSA’s first step in this process was to choose a panel that excludes anyone affected by the disease. I think it is obvious that the panel needs to hear from a patient representative, known to the Lyme community and affected by Lyme as a patient or caregiver especially of late-stage Lyme which I can tell you from my daughter’s situation is horrific. Obviously there should also be a member from that maligned group, the physicians, that with great risk to their reputations and livelihoods, treat Lyme disease.
Anything else will be a costly snow job from the organization which has no credibility now with patients and families SUFFERRING from this horrible affliction, and produce will produce poor guidelines due to willful exclusion o pertinent participants
To try to give treatment guidelines at all for Lyme is a joke when the disease itself is so poorly understood due to insufficient research-the research the panel will be surveying. Until sufficient research is done, doctors on the front lines will be engaging in the practice of medicine, doing their own research, and meeting with their own peers.
- April 1, 2015 at 12:45 am
Please include physicians from both sides of the isle and Chronic Lyme patients in your discussions. Please change the inaccurate guidelines and include information to guide PCPs about Lyme disease and co-infections which are spreading like wild fire. Please allow doctors to treat patients as long as necessary when they don’t recover after one month of antibiotics, which is often insufficient according to John Hopkins hospital. Our insurance should pay for treatment–that is why we pay to have insurance. It is outrageous Lyme disease patients have to spend out of pocket money for treatment while paying for high premiums to have medical insurance.
The current state of affairs punishes the sick patients, misdiagnose them for years with psych disorders and neurological disorders, while they continue to get sicker and sicker. In the mean time, the tests are false negative, which happen more often than not. Please include the new research from major hospitals and universities in your discussions in order to maintain integrity and establish unbiased, science based guidelines. It is now all up to you how you want your names and careers to go down in history.
- April 6, 2015 at 5:55 pm
this was really hard to do. I listed that having lyme made me have a “conflict of interest”. I want to get well. I spoke from my heart after I tried to make comments about the panel make up. Thanks for the help, I could never have done this alone, and at least we can say we tried. Now I am going to bed and rest and take care of myself. Tomorrow I will continue to tell people to prevent lyme, and ways to keep themselves and families as safe as they can.
- April 7, 2015 at 2:45 pm
We are a couple in our late 70s and 80s, trying to live off limited savings, with numerous health problems. Our daughter has had persistent Lyme disease for over 10 years but was not diagnosed until about two years ago, after being rejected by a number of MDs (some of whom boasted they were IDSA members and therefore believed she could not have Lyme disease). Others implied she was depressed or malingering. Her Medicare insurance provides little financial support to her because MDs cannot treat Lyme adequately and she must turn to other physicians, the funding for which comes from our dwindling savings. Hashimoto’s attack on her thyroid brought new agonies to her as it does to so many Lyme victims. She swings from a few days of feeling well to long periods of utter pain and inability to get out of bed. She feels she is on a downward spiral that will end in an early death. We feel helpless in this unacceptable situation in which the medical profession stands idly by and does nothing, in stark contrast to the oath of “Do No Harm.”
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