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» LymeNet Flash » Questions and Discussion » Medical Questions » Chronic Lyme disease patients sought for study in RI

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Author Topic: Chronic Lyme disease patients sought for study in RI
TerryK
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I ran across this so thought I would post in case anyone is interested. I know nothing as to the authenticity of the study.

The fact that they actually call it "Chronic Lyme" instead of Post lyme is probably significant. Read the doctor comments at the end.


http://newsblog.projo.com/2009/03/chronic-lyme-di.html
Chronic Lyme disease patients sought for study
5:24 PM Mon, Mar 23, 2009

Maria Armental Email

SMITHFIELD, R.I. -- People 18 and older who suffer with chronic Lyme disease are being sought to participate in a study that will gauge the effectiveness of cognitive behavioral psychotherapy (CBT) in reducing their distress and increasing their quality of life.

The study -- called Project PILS (Psychotherapy Intervention for Lyme Sufferers) -- offers 10 sessions of CBT to Lyme disease sufferers.

"Lyme disease is a complicated, confusing, and distressing illness, and one of the most rapidly growing infectious diseases in the country," said Joseph Trunzo, Ph.D., associate professor of applied psychology at Bryant University and a licensed clinical psychologist, who designed and leads the study.

"Our goal is to examine whether CBT -- which has been highly effective in helping people cope with depression, anxiety, and other symptoms of chronic illness -- is appropriate treatment for chronic Lyme sufferers."

The study is cosponsored by Bryant University and Providence Psychology Services. For more information about the study or to inquire about becoming a study participant, contact Trunzo at (401) 273-3322 , ext. 2.

CORRECTION: A previous headline characterized the study incorrectly.

Bryant University cognitive behavioral psychotherapy Joseph Trunzo Lyme disease medical research Project PILS Providence Psychology Services Psychotherapy Intervention for Lyme Sufferers Smithfield


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Comments
Denise D Cordes said:
I have no doubt that psychological techniques can help us cope with chronic illness. But before I get therapy for coping resources, I will spend my limited resources on physical therapy, manual muscle therapy, antibiotics, and herbs to GET cured so I do not have to cope.

If and when I am told that there is no hope for me to be cured, then I will seek psychological help - both therapy sessions and medication. In the interim, I will do whatever my LLMD suggests including medicines, exercise, herbs, pain medications, etc. Coping suggests there is nothing more that can be done and I am not there yet.

Link | March 23, 2009 9:12 PM
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Dr. Joseph Trunzo said:
As the principal investigator of this study, I want to clarify it is NOT a medical study. It's a study of a psychological intervention that may help people suffering from chronic lyme disease. It works in conjuction with your medical treatment and obtaining proper medical care is a necessary criterion for taking part in the study.

Thank you.
JJT

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Keebler
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THIS is not a good thing. It's out to show that lyme is all in the head.

Would they treat a broken leg with just thought therapy ? A ruptured appendix? Meningitis? TB?


I hope NO ONE signs up for this.

While it is true that cognitive therapy can help tremendously with any of life's situations, this is just part of the campaign to prove that lyme is all in the head.

Add to that the fact that those in the study who won't feel better will have to lie to say "yes, that helps" or they will look like they are even more determined to be sick.

Oy, Vey !

And to call patients "Lyme sufferers" seems like they don't really want them called "patients" anymore. The term "sufferer" coming from a group that says how we frame our language seems out of balance. "Survivors" would have been the better word.


I don't know why a study is needed? We all know that counseling can help. That is no secret. But to put it in this setting is of concern.

The doctor writes back that this is for patients who are getting treatment. But how many lyme patients really have access to proper treatment ? And in 10 weeks time, considering how long and rough treatment is, it seems like a very short amount of time to come to conclusions from a study like this.


That is is called "Psychotherapy Intervention for Lyme Sufferers" rather than "support," "coaching" or "training" makes me wonder. Intervention?

Is "intervention" what they would call counseling for cancer or for TB?

---

The question is:

"Our goal is to examine whether CBT -- which has been highly effective in helping people cope with depression, anxiety, and other symptoms of chronic illness -- is appropriate treatment for chronic Lyme sufferers."

--


Well, you don't need a study for that. Of course, counseling and training in self-talk, etc. is helpful for anyone dealing with any chronic illness as long as it's complementary to medical treatment. That's pretty much a no-brainer.


What's the real point of the study? What is the headline they want to write? Will the IDSA then capture that to further prevent medical treatment to lyme patients?


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ugagal
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I agree 100% with what Keebler has said! I'm sick of hearing how Lyme patients (and survivors) are constantly being sent to psychiatrists and psychologists for help.
Do they honestly believe that talk therapy is going to kill the bacteria?

I also find this study to be nothing more that a back door attempt at labeling Lyme patients as people in need of mental health services.

Anyone could benefit from CBT! I've got a good idea...why don't we conduct a study to see how the IDSA ducks could benefit from talk therapy!!!
(As long as Lyme patients could be the therapists)

--------------------
My comments on this site are not intended to be taken as medical advice as I'm not a physician.

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TerryK
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He's involved with ILADS and was listed as faculty at last years ILADS conference so I think he's OK.
http://tinyurl.com/dzad4s

Probably a good idea to ask your LLMD though or check with ILADS to ask if he is a member.

Edited to add:
I think they are trying to see if this will be a helpful tool for chronic lyme patients. I really don't think they want to use it as a vehicle to say it's all in our head and that treatment for the bacteria is not necessary.

Terry

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Keebler
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Terry,

Thanks for your additional comments and research. AND I'm glad to see that he has some connection with ILADS.

I may have over reacted due to the approaches that IDSA employs.

But, it is rather puzzling as to why a fancy study is needed. Of course, this kind of support and training helps as an adjunct. Why is a study like this needed?


Just do it. Just offer it as part of the total protocol.


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ugagal
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Regardless of the intent, I still feel strongly that studies such as this play into the hands of the IDSA.

Seems to me that since we all already know the answer as to whether or not CBT could help Lyme patients, the research money and time could be put to much better use. Just my opinion.

--------------------
My comments on this site are not intended to be taken as medical advice as I'm not a physician.

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TerryK
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I completly understand your response Keebler. I think it pays to be cautious. We don't need anyone trying to say that our illness is all in our head.

I did follow some of the links on the blog where the notice is posted and one of them goes to ALDF. That is not a good sign. That said, it is not the doctor's site so perhaps he doesn't even know they are using the ALDF to explain lyme disease. Heck as far as the ALDF is concerned, there is no such thing as chronic lyme.

It might be a way to get some free therapy that would be helpful but not if the motives are anything like you are concerned about keebler. Best to proceed with caution.

Terry

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TerryK
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You posted while I was posing ugagal. My thoughts are that the more tools we have to help ourselves the better as long as getting those tools are not damaging to our cause.

I don't know that I agree that these type of studies play into the hands of the IDSA but I suppose there is always that possibility. I'd have to know a lot more before I could say that categorically though.

I don't know much about this type of therapy or if we can conclude without more information if it would be helpful or not for lyme patients.

I understand your concerns though.

Terry
I'm not a doctor

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Tracy9
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It's a good thing when it proves that it doesn't work. Can't prove that until they do the study.

--------------------
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Keebler
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But if the patients say "didn't work" they will then be labeled malingers. These are subjective findings. Patients are not usually held in high regard with subjective results.


Somehow, the results will need to quantified and I wonder how that will be interpreted.


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cottonbrain
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ME/CFIDS sufferers already know that CBT doesn't work. Hope nobody gets sucked into this.
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Keebler
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See already, we have to figure out what "works" means.

I found that CBT helped me tremendously just as a person putting some things into perspective, but it did nothing to help symptoms from a devastating disease.


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