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    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    Given that there has already been one death it shows how desperate things can be.
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    "Body Reprogramming: Patient guide for recovery using the Hyland model"

    Sadly it seems to conform to the idea that if you can speak in parenthesis, you must know stuff and it must be true.
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    The Canadian Chronic Pain Task force report

    From Harvard health https://www.health.harvard.edu/blog/im-in-pain-so-why-is-my-doctor-suggesting-a-psychologist-2019081417450?utm_source=delivra&utm_medium=email&utm_campaign=BF20190819-Pain&utm_id=1500931&dlv-ga-memberid=75073874&dlv-emuid=c25654bc-2874-4f03-aa78-bcc45594ca41&dlv-mlid=1500931
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    Trial By Error: The School Absence Study, Revisited (Crawley/SMILE)

    This
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    The People’s Trial: your chance to be a scientist in a fun online trial - 6 Aug 2019

    Someone should
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    Everything you always wanted to know about non-cytolytic enterovirus but were too afraid to ask

    The terrible tale of Amy Brown https://www.healthrising.org/blog/2017/05/23/doctors-hyde-amy-browns-m-e-enterovirus-story/
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    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    Both labs should process samples from the same patients at the same time. Had this been done ( as suggested) then the picture may be clearer. Get them in the same place doing the same thing with the same samples. No arguments after that.
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    UK Independent: 'The NHS is underprepared for a no-deal Brexit – and I am one of the thousands that might die as a result', 2019

    Note that this is from April, however I doubt that the situation has been addressed. My MP is a cancer surgeon and has been highlighting the issue of supply with radio isotopes for the past 2 years,( which cannot be stockpiled due to the half life ). She was assured by the government earluer...
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    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    The ATP profiles test was based on an existing test used in labs , but which was not available clinically. Do we know how this predessessor differs?
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    ME Association magazine summer 2019

    This
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    A general thread on the PACE trial!

    FINE data may have been available by then? They would therefore not have needed to see unblinded data.
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    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    It is a couple of years since I read the papers, but from what I recall ( correct if wrong), there was also the identification of potential subgroups related to ox phos mechanisms. My daughter fell into one of these, where ATP was being chucked out of the cell faster than it could be...
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    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    0.35 and 0.11 scores
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    More PACE trial data released

    visualising the combination of uniform and customer interface skills ! lol
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    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    when we did the tests, blood had to be at Biolab for 9am the next morning, with a recommendation that blood be drawn in the previous afternoon to minimise timeframe. It was a We good bloods drawn at 4.10pm and was in the post at 4.30pm. There is, I believe, a viability test done re blood quality...
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    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    My aunt is severe, stuck in bed, no support. GP clueless and not interested - she has already been told that there is nothing they can do despite having symptoms of comorbidities. Basically abandoned, like many others. The ATP profiles test was useful in showing a level of debilitation. From...
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    Prevalence of functional somatic syndromes and bodily distress syndrome in the Danish population: the DanFunD study, 2019, Petersen et al

    redefinition as a career promoting move....?
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    Benign Paroxysmal Positional Vertigo (BPPV)

    interesting that it is associated with the elderly - my daughter is a teenager and this sounds familiar. Recent optician visit compared her optic nerve photo ( loss of definition around edge of nerve ) to being something more associated with those 40+ years old. I wonder if any other " elderly"...
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    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    Both my aunt and daughter had these tests. The results both correlated to level of disability. Findings re low glutathione, B3, sodases tie into other research. Others whom I have known had the same experience which does suggest that further exploration may be warranted.
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    Audio distraction: podcasts, audio books, radio on demand

    Our library has a good audio book and ebooks online range. They use a couple of apps for access. ( press reader is one) I didn't t know much about it previously as have not really used library since kids were small. Great for when you can't physically get to library. They also have a 4...
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