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

    Yes. Our chiro trips are the one thing that gives some temporary relief. Chiro is amazingly gentle, but not local.
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    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    Same for my daughter. very tight neck. Tendons/ attachments can look / feel like bone at times.
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    Charity funding

    given the cost of insulin in US you can appreciate why it's not in their interests
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    Skin crawling/formication

    Has anyone found anything useful re the formication? This is currently a huge issue for my daughter - it is worse when sleep is poor and the catch 22 is she can't sleep if this is manifest, even if she does actually feel sleepy ( as opposed to exhausted). Looking back though diet and...
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    Efficacy of supplements

    For my daughter the following have impact Magnesium makes a significant difference . If not taken fatigue, pain, brain fog increase. CQ10 as ubiquinol Antioxidant My aunt is severely affected and had huge issues with heart palpitations, which significantly reduced after injecting magnesium...
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    Charity funding

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

    It is worth remembering that we exist in a somewhat parallel universe. The most iniquitous manifestation of the BPS worldview can be seen in @Binkie4 and @Graham ' s posts. The complexities of ME are not understood in a medical system which at best simplifies the condition and at worst denies...
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    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    This
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    Psychometric properties of the Cognitive and Behavioural Responses Questionnaire (CBRQ) in adolescents with CFS, 2019, Loades, Chalder et al

    Exactly this Fishing to reinforce an established narrative Compare with chronic illnesses...
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    Psychometric properties of the Cognitive and Behavioural Responses Questionnaire (CBRQ) in adolescents with CFS, 2019, Loades, Chalder et al

    One for those on NICE guidelines group to highlight.
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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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