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    Thread for all minutes of the UK CFS/ME Research Collaborative [CMRC] Executive Board Meetings

    Will PM
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    David Tuller: Trial By Error: FITNET-NHS Recruitment Ad Promotes ''Recovery''

    I have concerns re recruitment. Gps presenting info like this to families for direct recruitment to trial ( how many gps can diagnose accurately?) Families not knowing that they did not have to participate. @Tilly may have more knowledge.
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    David Tuller: Trial By Error: FITNET-NHS Recruitment Ad Promotes ''Recovery''

    From Twitter tonight
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    Jen Brea: My ME is in remission

    I am so happy for @JenB and @Jeff_w . It must be a marvellous feeling, yet difficult to reconcile emotionally. I hope that your remissions continue. ME to me seems to be a common end state; given the variety of triggers, and gradual onset, there will be subsets, or indeed it may in future be...
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    Understanding the Lightning Process Approach to CFS/ME; a Review of the Disease Process and the Approach

    Pretty much guaranteed. Start of an exit strategy no doubt
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    Understanding the Lightning Process Approach to CFS/ME; a Review of the Disease Process and the Approach

    Pretty much unicorn land on all fronts here in UK just now, so perhaps only to be expected. As soundbites are all that matters in MSM and politics, you can perhaps see where the chants of LP would fit right in. Add the all enveloping grey fuzz of plausible ( to others) deniability and...
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    MS - ancient viral DNA and inflammatory immune response

    Interesting bit if research via Twitter tonight. Relevant to ME ? https://www.pasteur.fr/en/research-journal/news/discovery-mechanism-responsible-chronic-inflammation-patients-suffering-multiple-sclerosis?hootPostID=81f61df8a3de6b440bfd9a65a34a12ef
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    Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

    I would agree that this route would be preferred. However how much time is reasonable for those required to act to act? The trial is being touted worldwide as evidence of efficacy of LP, affecting children in countries without social healthcare systems as well as providing a pyramid selling...
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    Keto and genetic diseases

    This came up on my youtube feed. It may be interesting. One if the suggestion s is that the change in diet may be more effective in paediatric patients . I know that it has been used for many years for epilepsy and does make a difference for many ( but not necessarily all) I don' t know much...
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    RCPCH conference 2019 abstract: When symptoms dictate a young person’s life..., Gamper et al.

    Because these are not acknowledged, particularly with HPV, therefore it must be something else. FII /safeguarding for this is not uncommon here.
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    Resting-state functional connectivity, cognition, and fatigue in response to cognitive exertion: a novel study in adolescents with CFS (2019) Josev

    Perhaps tangentially supporting the glucose problem. If your glucose energy production system is screwed, would lack of starting energy not be a given ?
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    Building an evidence base for management of severe ME (including sleep management)

    Just as there is a distinct difference between fatigue and fatiguability, the nuance of which esacpes almost every doctor we have seen
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    RCPCH conference 2019 abstract: When chronic fatigue syndrome leads to mutism, Moeda et al

    Whilst other research shows ...
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    RCPCH conference 2019 abstract: Tea and cake: an opportunity for young people and their parents/guardians to eat cake and share ideas, Bashton et al

    Have these folks not heard of carbs and glycolysis?
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    ME/CFS contributions at Royal College of Paediatrics and Child Health conference, May 2019

    She must have been a good teacher.
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    RCPCH conference 2019 abstract: When chronic fatigue syndrome leads to mutism, Moeda et al

    I do wonder about choice in an asymmetric power situation. Many kids agree to things to either " please" the authority figure, or in the hope it makes them/ the situation go away. If you are in an intensive therapy environment , ( do you have parents/ advocates?) , how much control do you...
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    RCPCH conference 2019 abstract: When chronic fatigue syndrome leads to mutism, Moeda et al

    When professionals still do not understand PEM, what chance do kids and their parents stand? It' s the same crass supposition that " fatigue" is the most important aspect- that somehow cognitive function is not an intrinsic part of an energy envelope :banghead:
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    ME/CFS contributions at Royal College of Paediatrics and Child Health conference, May 2019

    Mmm. Cake and chat. Becoming cynical but would this not fit very nicely within the service provision tender criteria currently extended for NICE?
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    RCPCH conference 2019 abstract: Characteristics of a patient population attending a specialist outpatient service for CFS, McCourt et al

    Given that this age group has a better prognosis for recovery , without intervention, ( does this ever get allowed for as a variable ?) seems that more trees have been killed in vain ( To put it diplomatically) .
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    Blog: The PACE Trial: How a Debate Over Science Empowered a Whole Community [Carolyn Wilshire/ME Association]

    No. A lot of parents commenting and separate post re PACE and DWP benefits denials. I' ll watch tonight and see if there is a mention / reference.
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