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Dr Nath's intra-mural study at NIH is currently recruiting

Discussion in 'Active Clinical Studies' started by Kati, Dec 9, 2016.

  1. Silencio

    Silencio Senior Member

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    Just to note... Neuropsychological testing can actually be a really good measure of brain fog, memory problems, information processing speed, auditory attention etc. It tends to go along with a psych assessment so that any impairments can be put in context of your premorbid estimates, and overall picture. I also would hope that whatever a psychiatric inventory is might act as a final place to identify people with other psych issues, and choose candidates who are ME patients without comorbidities that might muddy the waters.

    As for dietician.. perhaps it's to also get a picture of people dietary habits and what they may or may not have tried. Since diet seems to help a lot of people, seems reasonable.
     
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  2. duncan

    duncan Senior Member

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    Actually, not so much. It often fails to capture weaknesses.Also, testers can spin results - take premorbid estimates: They are often given in the context of a 90% confidence level. Do you know what a joke a 90% confidence level is?

    Again, I am going to have to disagree. This is supposedly an exploration into what ME/CFS is, not what food groups may have anecdotally benefited or failed some.
     
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  3. Silencio

    Silencio Senior Member

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    I am only a sample set of one, but I've had it done 3 times, by 3 different psychologists in two different countries. Each time it was very useful.

    I think if you view their efforts cynically, then sure, these tests could be used against us. But if not, then they (including the dietary side) help gather a complete picture of a patient.

    Not sure about the occupational therapy bit tho!
     
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  4. duncan

    duncan Senior Member

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    I've endured them more times than that. I do agree that they CAN be useful. It's their accuracy that can be suspect at times.

    I strive to view their efforts in the way they are reported. Any apparent cynicism on my part primarily is an offshoot of the NIH's actions. The occupational therapy thing is a case in point. As is Wallitt. As is Gill. As is Snow. As is...well, you get the picture.​
     
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  5. Silencio

    Silencio Senior Member

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    Yes, I will say the third test I did, the accuracy seemed off on a couple of measures, so I'm sure you're right there. Overall it was still usable for me. I'm sorry to hear you've sat through them more than 3 times.

    I see your point about Gill.. he looks uninformed. But he doesn't look maliciously actively against us in the way Wallitt would have appeared to be.

    Snow.. didn't know about this person. @Old Bones seems to have done some digging in another thread and found him good.. are there other concerns?
     
  6. Hutan

    Hutan Senior Member

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    It's a matter of trust.

    The NIH knows patients are very wary of more patient blaming and findings that suggest that if people just stopped focusing on their symptoms and instead slept better, ate better, exercised more, they could be well. They know that much of the community has problems with a number of the NIH staff who have made statements along those lines.

    So I really don't understand why they would put those distrusted NIH staff in direct contact with ME trial participants.

    I have been examined by several doctors who, it turned out, don't believe there is a biomedical cause for ME/CFS. Without exception, they were poor listeners and did not accurately record what I was telling them. For example, recurrent constant cold sores since April was recorded as a single cold sore in April - leading the reader of the notes to assume I was making a big deal about things everyone experiences. When my abdomen was palpated and I said that it was sore in one spot, the doctor said 'that all seems fine' and wrote that the physical examination was unremarkable. Everything I said was filtered through their prejudices.

    Furthermore, when it was clear to me, either by the person's reputation or their expressed attitude, that they viewed me as some inferior hypervigilant exaggerator, I was less forthcoming about my symptoms and probably came across as more withdrawn, more angry, more depressed, more anxious and less sociable than I would with a less judgemental person. I have a letter where it says that I 'had flat affect' when actually I was exhausted from the long time sitting in the waiting room and was politely containing my rage at the patronising attitude of the doctor.

    I therefore think it is very likely that the quality of the data recorded during this NIH screening process will be affected by the choice of the NIH personnel.

    And yes, I get that this is only a screening process, but I don't believe that data collected in the interviews will just be thrown in the bin once the participants are selected. Of course it will be used in subsequent analyses.

    Remember that Walitt believes Shorter has something of so much value to say to the NIH that he arranged for him to travel from Canada to give a talk. I thought we were assured that Walitt would simply be organising the admin for this trial, ensuring patients got to the various data collection locations. Instead we find that he has a big part to play in interpreting and recording patient's symptoms.

    Why on earth, if you were trying to run an investigation into ME that will be both useful and accepted as useful by the ME community, would you not choose staff for the face-to-face data collection who don't have a record of publicly denigrating ME patients?
     
    Last edited: Mar 22, 2017
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  7. viggster

    viggster Senior Member

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    At the risk of inflaming the conversation here, I am not sure I have seen any evidence that Dr. Walitt publicly denigrated ME patients. (Please point me to such a statement if it exists.) Ed Shorter has done that, and I strongly disagreed with the decision to invite him to NIH. I plan to ask about that when I'm there.
     
  8. Hutan

    Hutan Senior Member

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    Yes, we have been over this ground before (as to what Walitt believes).

    To a large extent, as I tried to point out, what Walitt actually believed/ believes is irrelevant. The fact that so many people now distrust him has consequences for the accurate collection of data from patients who know of his reputation and for the later acceptance of any findings from the NIH studies by the ME community. And that is why it is so strange that the NIH would put Walitt in the influential role of subjective data collection.

    But, there is certainly much evidence for Walitt's belittling, patronising, pat on the head, 'yes, of course, your symptoms are real to you' attitude. See for example the quotes here
    https://thoughtsaboutme.com/2016/02...e-perception-mecfs-as-normal-life-experience/
     
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  9. duncan

    duncan Senior Member

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    I would advise against cutting hairs.
     
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  10. viggster

    viggster Senior Member

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    Yes, I understand why many patients here don't appreciate his comments. But that whole post is about a talk he gave about fibromyalgia.
     
  11. duncan

    duncan Senior Member

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    Cool. Screw those fibro nut jobs.
     
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  12. Hutan

    Hutan Senior Member

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    From his statements in the public domain, it is clear that he sees fibromyalgia and chronic fatigue syndrome as essentially the same psychosomatic problem (along with hysteria and neurasthenia). The individual presentation is, according to him, due to the cultural norms of the time and individual circumstances. (Pretty much the same sort of thinking as Shorter).

    http://me-pedia.org/wiki/Brian_Walitt

    According to Walitt, @viggster, you have a perceptual illness, just as much as someone with fibromyalgia.

    Thanks for planning to ask him about the Shorter invitation when you see him. And for volunteering for the study.
     
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  13. Valentijn

    Valentijn Senior Member

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    There are 6 team members who clearly hold psychosomatic beliefs about physical symptoms. They're summarized in this post, along with links to some of their offending research or other resources.

    Walitt (along with Saligan) has explicitly stated that CFS is psychosomatic:
    And he has a long record of saying awful things about Fibromyalgia, as well as shamelessly spinning the results of the poor methodology he employs. Why should we trust him or the other psychobabblers to do the right thing with psychiatric questionnaires?
     
    Last edited: Mar 23, 2017
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  14. geraldt52

    geraldt52 Senior Member

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    So, @viggster, do you suppose that Wallit invited Shorter to speak because he vehemently disagrees with him, and finds the things Shorter says to be repulsive?

    Or is it more likely that he agrees with every word Shorter says, wanted that information presented, and just didn't have the balls to do it himself, given the current climate at NIH?[/QUOTE]
     
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  15. viggster

    viggster Senior Member

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    [/QUOTE]
    You seem to know the answer to your own question so I'm not sure why you're asking me.
     
  16. Knockknock

    Knockknock

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    To me all this canadian consensus, cdc creterian all is just thesame thing, canadian goverment still believe And pushing the phsycological ilogic theory on me/ cfs, candian and us( nih) are very close to each other, they would of accepted long time ago thesame way that Us goverment did...
    this is why i dont believe in any of them.
    If they are so despered to solve me/cfs, they would of put 100-200 million on the budget , they would of approved research much easier with out so much obstacles, and would of assable a real team of Me experts and not this None sense team, that have been calling us crazy people for decades.
     
  17. RYO

    RYO Senior Member

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    I would encourage those on this thread to view the SolveCFS webinar interview with Dr. Avindra Nath regarding the intramural study at NIH. Dr. Nath gives the example of concerns of bias in the early days of HIV research. I agree with him that a well designed study will limit the impact of bias of investigators. In the end, who can purport any investigator is truly not biased. Given the nature of this intramural study which is not a hypothesis driven study but a study designed to explore data patterns, I suspect the substance of this study will come from the extensive data derived and analyzed from his mass spectrometer lab. Dr. Nath is highly regarded for his work in analyzing CSF samples and studies of neuroimmunology. The basic question he is trying to answer is why post infectious ME/CFS patients never return to their baseline health.

    I personally put less emphasis on the functional MRI studies and transcranial magnetic brain stimulation. I am not sure what interesting data will come from the metabolic chamber.

    The neuropsych assessments, sleep study and evaluation from internal medicine team (Dr Gill, Dr. Friedman, and Stacie Solin) is to make sure that study makes best efforts to rule out other confounding conditions. It is not an effort to characterize ME/CFS as a psychosomatic disorder.

    The purpose of evaluation by occupational therapists is an attempt to measure the impact of ME/CFS on activities of daily living. It is the estimation of the "human cost" of ME/CFS.

    I am very grateful that someone of Dr. Nath's caliber is the principal investigator for this study. The biggest challenge for the the ME/CFS community to further attract top clinicians and scientists.
     
    Last edited: Apr 3, 2017
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  18. viggster

    viggster Senior Member

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    I'm guessing you mean 'cerebrospinal fluid' here not 'CFS'.
     
  19. RYO

    RYO Senior Member

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    Thanks. I corrected the error.
     
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  20. Diwi9

    Diwi9 Senior Member

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    I watched Dr. Nath's youtube presentation (video). Three things came across to me:

    1. Dr. Nath has designed a rigorous study in the hopes of finding biological markers and ME/CFS phenotypes. The entire study is based on the acute onset subset.

    2. Dr. Nath is not particularly interested in ME/CFS, but he is dedicated to having a successful study and is willing to adapt the study if findings pop-up. He has resources available that will allow for serious exploration of findings.

    3. Dr. Nath is weary of the ME/CFS patient community, as are other researchers within the NIH.

    My third point is the sticky one and my take is that they feel criticized before they have even started and it does not create much sympathy within the research community for us. I do not blame the ME/CFS community at all, as I understand exactly how and why we've developed the reputation we have as a patient cohort. However, I think we have to give this group the opportunity to do a good study with our support. This is an opportunity for us to redefine our relationship with the broader research community too and get more researchers interested in us. As scientists, they want findings...that is their pot of gold...and based on the design, resources, and recent studies, they are going to find things. My hope is that this study will be the strike that lights the match.
     

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