Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Lyrica Gene Expression ME/CFS Study in Utah Looking for Participants

Discussion in 'General ME/CFS News' started by Cort, Jun 20, 2012.

  1. Cort

    Cort Phoenix Rising Founder

    Patients will get some interesting gene expression results...and this study will further the Lights work on gene expression in ME/CFS and FM....they hope to interest a drug company in a product should their findings hold up.

    Alan Light wrote
    "we are looking for a small number of patients with FMS or FMS with CFS who live in the Salt Lake area who would like to try out Lyrica as a possible aid for their condition. Cindy Bateman's clinic will do careful screening and will titrate the patients up and down on Lyrica or Placebo, and we will do the exercise testing and blood draws here at the University of Utah Medical Center. We can provide the patients with their data (both the gene expression profiles for CFS and FMS that we have previously published, as well as data on 25 more genes we are currently testing, and provide a small amount of compensation for their time.

    If they are interested, the contact #s are: Andrea White- 801-573-5387, or Dr. Bateman’s clinical research team at 801-532-8311. In either case tell them to mention that they are interested in the Lyrica study.
     
  2. ukxmrv

    ukxmrv Senior Member

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    I'd love to do this but I am not near Utah. Lyrica rally did help me with pain but at the same time I got this overhyped feeling that made me crash with PEM and also increased sinus infections. Would have been great to know more about what was going on.

    I'd wonder though if they are studying "ME/CFS" as the text says "CFS" and "FMS". Also why would they want to mix FM and CFS/FM unless they wanted to compare the two and see if a different profile? When I reported back the side effects to my Rheumatologist he didn't seem to understand the PEM bad reaction so maybe if the two different groups were compared and were different this would explain it to him?
     
  3. CBS

    CBS Senior Member

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    Hi ukxmrv,

    I got in touch with Dr. Light concerning your questions on the Dx criteria (ME versus CFS) as well as the general experience of patients with FM and Lyrica. I think you'll be impressed with the design and the interesting findings if his gene expression work and FM. See below.

    Shane
     
  4. Calathea

    Calathea Senior Member

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    Please be careful with taking anti-epileptics such as Lyrica. Not only can they have nasty side-effects, but they can also cause horrendous withdrawal. It took me about six months to recover from coming off gabapentin, and my sleep still isn't back to where it was before I started. That was with a taper done under the supervision of my GP, too.
     
  5. CBS

    CBS Senior Member

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    Here is a copy of my e-mail to Dr. Light. I paraphrased the question about diagnostic criteria. After his response, I have provided information about some of their more recent work on genetic expression and FM, CFS and MS.




    Many (most? all?) of the studies done by Drs. Alan and Kathy Light compare genetic expression between several patient groups including CFS (typically Fukuda et al., 1994, most recently Fukuda and Reeves, 2005), CFS with fibro (also meets American College of Rheumatology (ACR) criteria for fibro), fibromyalgia alone (American College of Rheumatology (ACR) criteria) and multiple sclerosis. As you can see, this most recent study goes well beyond the Fukuda and CDC definitions to require that patients meet the CC Dx criteria and will collect information that will allow the identification of those patients who meet the ICC (Dr. Bateman is a co-author of the ICC).

    The Lights (and the rest of their research group) are identifying some very interesting differences between patient groups. They have found reliable distinctions between FM patients and all other groups at baseline. It is clear that they are still digging deeper in order identify subgroups (their papers have mostly relied upon changes from baseline levels of the expressed genes - you serve as your own baseline). Recently, Kathy Light was recently awarded a $1 million dollar NIH grant to study CFS. This Lyrica study appears to be separate from the NIH study.

    I hope that this helped to answer some of your questions. My very sincere thanks to Alan Light for his thorough and informative response.
     
  6. ukxmrv

    ukxmrv Senior Member

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    Shane, this was so kind of you.

    Thanks to you and to Dr Light!

    It will be really interesting to see what the results are. Lyrica helped with the tender point pain and if I didn't have the ME PEM and these sinus infections would have been a major breakthrough for me. The distictions should be very interesting.
     

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