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    Jen Brea: My ME is in remission

    Cool. Interesting. Weird. I don't know that it should be looked at as M.E. micking CCI or so. I suspect it's more nuanced than that. What it looks like is that sometimes issues of the spine (chiari, cci, stenosis) trigger a pathway of symptoms that presents as M.E. Because they definitely don't...
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    Paradox of diagnosis The positive effects and limitations of diagnosis in ME/CFS and fibromyalgia (Nojima, 2019)

    Just reading the first 2 paragraphs, seems very confused and leans heavily on BPS thought without much critical thinking. It even conflates mus with malingering. Hot garbage.
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    NIH: Accelerating Research on ME/CFS meeting, 4th and 5th April 2019

    I know this probably makes no sense scientifically, but whenever I read about tgf-b being high it makes me think there is a post-inflammation immune response to a infection that never got properly turned off. Could MR1 mistakenly direct MAIT cells to non-infectious riboflavin producing bacteria...
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    Update from Ron Davis April 2019 Interview with BenH

    I'm very interested in the nanoneedle, but my concern is the cellular dysfunction is further downstream. 2 people found no benefit with copaxone on PR, 1 or 2 found no benefit with suramin. So it might not be the drug screener we all hoped it would be. Of course knowing what wacks the cells...
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    Orthostatic intolerance

    This is a pretty interesting topic. I get the feeling OI is sort of peripheral and I think it's fair to say we don't quite know what's causing the OI. Is there any evidence it simply isn't low blood volume? What worried me from Systrom's talk is he said boluses of saline alleviated the preload...
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    NIH: Accelerating Research on ME/CFS meeting, 4th and 5th April 2019

    I'll try to post some positive things from the conference to keep myself afloat here. As always, correct me if I got something wrong. Not so many rare diseases after all; 90%+ of the patients were ruled out on the phone, most of those over not fitting the criteria. Most of the others were ruled...
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    Orthostatic intolerance

    So I'm not the only one who feels like garbage lying down? Spine can never get comfortable, I wake up like I got hit by a truck.
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    NIH: Accelerating Research on ME/CFS meeting, 4th and 5th April 2019

    : ( It does feel like it's always tidbits.
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    NIH: Accelerating Research on ME/CFS meeting, 4th and 5th April 2019

    I only watched his as well. It was a very good presentation. One question I had, because it was hard to follow and now I'm going off my (poor) memory was his diagnosis process - it seemed like for someone to qualify for me/cfs they had to have the preload failure and then these patients were...
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    Anyone with ankylosing spondylytis ?

    Pelvis X-Ray or Spine X-ray?
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    NIH Request For Information: Soliciting Input on How Best to Advance ME/CFS research

    I'm writing one, but I'll be lucky to finish by the 14th. It takes a lot of energy.
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    Anyone with ankylosing spondylytis ?

    By all accounts it's very hard to dx.
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    OMF Funds ME/CFS Collaborative Research Center at Uppsala

    I've been meaning to ask - have there been any metabolic studies of cerebral spinal fluid yet? I remember hearing about one, I think but I can't remember.
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    Australia’s Health Minister Greg Hunt announces $3m for medical research

    They actually have done a lot of neuro imaging stuff (Barnden) and are at least looking at a variety of angles. They are also ready to talk to the newspapers about how bad the illness/that it's real etc.. So they have definitely done some good.
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    USA: National Institutes of Health (NIH) intramural ME/CFS study

    This is very intersting, and it must be somethign Nath addresses, imo, before the study has concluded. Because that could honestly be 5 years from now. It is of immediate need and value to know rare diseases that commonly present as ME/CFS and - I'm assuming - disclosing this information won't...
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    "Plunging Grant Application Rates Test NIH’s Commitment to Chronic Fatigue Syndrome (ME/CFS)"

    I read the HR piece. I actually thought this might be a possible outcome. 1) Big time grant recipients (Lipkin, Hanson) got long term grants and are probably working on them and not applying annually. 2) Early 2000 grants were not of high quality. I remember a lot of them were still about the...
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    ME/CFS International Research Symposium, March 2019, Australia

    Dissappointed about the clonal expansion, but watching this McGregor talk is actually really interesting. Seems like he's clearly understanding about how to study this illness and finding sub-groups that the metabolomic results clearly seperate. The glucose sub-groups look really interesting as...
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    Invisibilia: For Some Teens With Debilitating Pain, The Treatment Is More Pain

    Looking through the comments, I don't see too much un-reasonable criticism. The study looks awful. It's uncontrolled and restricts a key term that jacks up response bias. Multiple treatments at once. The 92% having 0 pain after 2-weeks is a huge red flag for the diagnosis/admission part. No...
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    Cochrane ME/CFS GET review temporarily withdrawn

    Yup, it says to me "it shouldn't be used to inform health care decision making but we will find a way to keep the core concepts by rewording the conclusion." I mean it sounds like they are saying we won't review it properly, but we will find a way to make the treatments fit, probably by...
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    Long Term Follow up of Young People With Chronic Fatigue Syndrome Attending a Pediatric Outpatient Service, 2019, Rowe

    Both groups look like they have improved, but the recovered group looks like they average a little above a 9 and the unrecovered looks like they average around a 6.5. That's a pretty big difference.
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