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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NIH: Post-exertional Malaise Research Opportunity (info via Workwell Foundation)

Discussion in 'General ME/CFS News' started by aimossy, Oct 4, 2016.

  1. aimossy

    aimossy Senior Member

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    Via Workwell Foundation:

    Research & Latest News
    [​IMG]

    Post-exertional Malaise Research Opportunity

    Dr. Mark VanNess and I recently visited the National Institutes of Health (NIH) to present our findings on cardiopulmonary exercise testing (CPET) and the importance of the symptom of post-exertional malaise to the NIH ME/CFS Special Interest Group. It was an encouraging trip that resulted in Dr. Brian Walitt, lead investigator of the ME/CFS Intramural Study, extending an invitation to Workwell Foundation to help recruit patients for a focus group on post-exertional malaise. If you are a person diagnosed with ME/CFS and have post-exertional malaise, please consider enrolling in this study. Those of you who have undergone the 2 day CPET and have had an abnormal recovery response know how important it is to identify and characterize the symptom of post-exertional malaise. If you are willing to share your experience with post-exertional malaise, please contact Ms. Barbara Stussman at: Focus Group Recruitment letter. Together, let’s reach out to NIH and help them understand post-exertional malaise.

    With kind regards,

    Staci R. Stevens

    http://www.workwellfoundation.org/research-and-latest-news/
     
    Last edited: Oct 4, 2016
    Little Bluestem, Jan, actup and 19 others like this.
  2. Valentijn

    Valentijn Senior Member

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    Looks like Walitt isn't going anywhere :meh: So Hallett and his team are probably still involved as well, meaning dodgy MRI interpretations comparing ME to functional disorders or depression are pretty much a certainty.

    I'm very disappointed with the NIH. Researchers who explicitly state that a disease is psychosomatic should not be responsible for any aspect of biomedical research into that disease, pending complete retraction and disavowal of their prior statements.
     
    Jan, pibee, actup and 8 others like this.
  3. Sushi

    Sushi Senior Member Albuquerque

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    From the Focus Group Recuitment letter:
     
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  4. Woolie

    Woolie Senior Member

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    Obviously, everyone has to make their own decision here. But I do think there are some real concerns. Its not just the particular investigators involved, its also the idea of a focus group. This might indicate you are not only going to be asked to describe your PEM, you are going to have to elaborate on your feelings before, during and after etc. Stuff that could be used to construct a psychosocial narrative.

    Any volunteer would need to go in with their eyes open, and refuse to be drawn into certain topics, lest your input be misused. Make sure you stick to describing the physical (and if relevant, cognitive) symptoms of PEM, compare them to your pre-illness experience of overexertion. Don't venture into feelings, don't be drawn into a discussion about the role of "stress" in PEM (they might be pressing for information about psychosocial triggers), don't discuss your personal relationships, goals, desires or fears. It would also be unwise to refer to discussions here or with other CFS patents in general, lest that info be used to suggest CFS is a social construction (we know Wallitt is fond of this idea). In fact, stay away from your beliefs about your illness altogether, just state the facts.

    Its horrible to be so wary, but we have all learnt this the hard way. Hope I'll be proven wrong, and it will be a genuine examination of the PEM experience.
     
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  5. Susanna D

    Susanna D

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    Is this true??

    They are going to do a study about ME/CFS and don't know what PEM is?
    It is the most important feature of ME/CFS. A key symptom needed for the diagnose according to the Fukuda-, CCC- and ICC-criteria.

    Of course ALL people in the study with ME/CFS should have PEM as a symptom, or they will study the wrong people. What a waste of money and time that would be!

    This makes me so disapointed to read.
     
    Last edited: Oct 5, 2016
    pibee, Izola, Nielk and 1 other person like this.
  6. Hutan

    Hutan Senior Member

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    They are consulting (non-housebound) PWME and appear to have good intent. I think that is progress. :).
     
  7. BurnA

    BurnA Senior Member

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    I think this is a positive.
    It seems like they are engaiging with experts ( Workwell ) and patients to learn more about PEM.

    I think it would be worse if they didn't do this.
     
  8. Susanna D

    Susanna D

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    It's great that they engage experts!

    Sorry for my foggy brain. To me it sounded like they were recruiting CFS-patients that not necessarily have PEM to the intramural study. And only thanks to this visit they would now make sure to also recruit some with PEM..

    I guess this focus group is a parallell thing. Very good that they take a close look at PEM/PENE. Thanks to Staci Stevens and Workwell Foundation!
     
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  9. viggster

    viggster Senior Member

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  10. A.B.

    A.B. Senior Member

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    I think this is actually a good sign. They are acknowleding that they need to learn about PEM and are consulting some real experts. This is responsible behaviour that creates trust.
     
  11. Woolie

    Woolie Senior Member

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    This person has certainly gone through a very dramatic change in perspective - pretty much as soon as he smelt the money. I do not have any confidence in this statement.

    But the rest is very reassuring!
     
    John Mac, Solstice, TiredSam and 3 others like this.
  12. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    There's no indication of choosing housebound or non-housebound PWME. The recruitment letter states:
     
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  13. dreampop

    dreampop Senior Member

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    This is good stuff.

    @Valentijn I, too, have reservations about Wallit - I read the whole comments and his study and imo that's enough for him to be let go. There were so many implicit problems in the comments. That being said, if he's going to stay, I do think its reasonable to be concerned how he might try to find BPS stuff that isn't there.
     
  14. Hutan

    Hutan Senior Member

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    That's great. I had assumed it would be a face to face focus group.
     
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  15. Nielk

    Nielk

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    That is the problem with not using ME experts in a study of ME patients.

    How can you compare the experience of an ME expert with decades of experience treating thousands of patients to a focus group of five anonymous patients on the phone?
     
  16. BurnA

    BurnA Senior Member

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    What do you mean ? The patients for the main NIH study are selected by experts, this focus group is presumably for NIH staff to learn more about PEM from patients. They will then use this information to develop an interview tool for assessing PEM.
     
    Never Give Up and worldbackwards like this.
  17. Nielk

    Nielk

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    Jennie Spotila blogged about additional information about the NIH intramural study here -
    http://occupyme.net/2016/10/06/quick-nih-updates/

    She links to a consent form for participants in the study - http://mecfs.ctss.nih.gov/16-N-0058.1.CFS Informed consent.pdf

    It is not clear that these patients will be chosen by ME expert clinicians.

    The form states what the inclusions and exclusions for patient participation are for the study whether ME, Lyme or normal groups.

    For ME patients, it states that six months of fatigue needs to be present following an infection and there must be a presence of PEM.
     
  18. Nielk

    Nielk

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    I'm not sure I understand your question. If the patients are selected by ME experts, why is there a need to develop an interview tool?
     
    Solstice likes this.
  19. Denise

    Denise Senior Member

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    Fwiw - from the NIH clinical study FAQs
    "7. How are the enrolled participants being evaluated for ME/CFS?
    The study team will provide information from the initial study visit for ME/CFS participants to the adjudication committee. The adjudication committee will then review the data and medical records to determine if the participant with ME/CFS can proceed to the exercise stress visit.

    8. Why is there an adjudication committee that determines which ME/CFS patients are eligible to participate in the exercise stress visit?
    An adjudication process ensures fairness and uniformity in the selection process.

    9. Who are members of the adjudication committee?
    Committee members are recognized experts in ME/CFS. The initial members include: Lucinda Bateman, Andy Kogolnik, Tony Komaroff, Benjamin Natelson, and Daniel Peterson. The chair of the adjudication panel is the Principal Investigator, Dr. Avindra Nath (http://irp.nih.gov/pi/avindra-nath)."
     
  20. Nielk

    Nielk

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    The adjudication team will review who can take part in the second part of the study - the exercise stress testing.

    This team is not for the process of deciding who to include in the initial part of the study?
     

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