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  1. InitialConditions

    Receiving medical records in the UK - what is included?

    This is so frustrating. There is literally no standardization. At my surgery when I lived in Reading last year I had blood test results on the online portal (which was Evergreen Life), without asking for access to my medical record. Now I've asked for it and I have absolutely no blood test...
  2. InitialConditions

    Receiving medical records in the UK - what is included?

    To those UK folks who have obtained their medical records: What was included in your records? I have been given access via Patient Access - one of the four portals that the NHS now uses. I have essentially been given documents - mostly scans of correspondence between my GP and consultants /...
  3. InitialConditions

    US ME/CFS Clinician Coalition: Guideline - Diagnosing and Treating ME/CFS, 2019, and new website 2020

    Despite not being in the US, this is the sort of handout I'd take to my doctor. Clear, short, and to the point.
  4. InitialConditions

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    Have S4ME submitted a response to such a request before? And if so are these documents available to view?
  5. InitialConditions

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    ok well there'a a suggestion from me. I can't even remember the details of the survey and report but I assume you know what I am refering to! EDIT: It was from Forward ME
  6. InitialConditions

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    RE Point 2, What about the survey results that were analysed by Oxford Brookes researchers? Can this be submitted?
  7. InitialConditions

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    I assume S4ME make a submission to these types of requests. Can someone briefly outline how this works?
  8. InitialConditions

    ME Research UK: Role of Sirt1/NOS axis in vascular and immune homeostasis: a missing piece in the ME/CFS puzzle?

    Most academic research projects have a timeline of roughly three years, with results expected in the third year. This is of course variable.
  9. InitialConditions

    Dr Byron Hyde - Canada

    I couldn't have put it better myself. With Hyde, it was an obsession with brain scans and enteroviruses.
  10. InitialConditions

    Dr Byron Hyde - Canada

    Doesn't sound good. Grateful for some of his work, but he sounds like Canada's Myhill. Lots of grandiose claims about the disease and its etiology/pathology, lots of annecdotal evidence, a steady stream of desperate patients...
  11. InitialConditions

    Drug given to enhance MRI images under scrutiny over side-effects

    I was worried about this with the last MRI I had, about a year ago. Don't think it had any effect, but the 'rush' feeling when the liquid is injected is quite bizzare.
  12. InitialConditions

    Finally, I’ve found what caused my brain fog, chronic fatigue, depression and aching joints...an insect bite! - James Delingpole

    He's absolutely all over the show...just for a change. Just found this article from the Spectator (sorry...) where he claims the Perrin Technique is causing him to have weird mental symptoms. In it he confuses lymphatic massage for limbic massage - and thus uses this to explain the change in...
  13. InitialConditions

    Food intolerance testing (York Test)

    It's a blood test - they measure different IgG antibodies (https://www.yorktest.com/what-is-igg/) to a range of different types of food and drink ingredients. There were around 100 different items on my test. It seems this part is where the science is not clear / settled. But there have been a...
  14. InitialConditions

    Food intolerance testing (York Test)

    Has anyone ever done a food intolerance test offered by compaines such as York Test? I never really knew what to make of these tests. I'm a skeptic, but I actually went ahead with one about years ago, costing me a couple of hundred pound. I got a list of about 6 foods showing a strong...
  15. InitialConditions

    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    I hope this isn't just left as it is now. This sort of discrepancy does occur quite a lot in science. And to the outsider it can seem frustrating because one naturally asssumes that one party is correct and the other is wrong. Sometimes, it's not that simple - especially when it comes down to...
  16. InitialConditions

    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    exactly. you'd likely have to have a dependency of processing time on patient illness severity.
  17. InitialConditions

    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    Do we know if any patients have submitted samples for the Myhill test and they've come back as 'healthy'?
  18. InitialConditions

    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    There is a response from Myhill and edit [McLaren-Howard] on Myhill's site. I don't have the link this very minute.
  19. InitialConditions

    Researchers propose deep trawl of DNA to help uncover the causes of ME/CFS (Simon McG blog)

    The question is still 'Is' rather than 'When is', but if funded my guess would be from 2021 onwards, for perhaps three years.
  20. InitialConditions

    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    that's what i'm getting at. i don't see how you would end up at this result!
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