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    (ME/CFS): Investigating care practices pointed out to disparities in diagnosis and treatment across European Union - Strand, Nacul (EUROMENE) 2019

    Entirely reasonable. Currently others are making arrangements for a meeting with the EU Commission (bit responsible for allocating budget priorities); specifically the bit that determines priorities for Research - Horizon Europe - Director-General Jean-Eric Paquet. EUROMENE will nominate one...
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    (ME/CFS): Investigating care practices pointed out to disparities in diagnosis and treatment across European Union - Strand, Nacul (EUROMENE) 2019

    There's already a thread for the EU Petition here https://www.s4me.info/threads/eu-petition-opportunity-to-lobby-for-funding-for-me-research.10363/page-6#post-215132 We need to brief the EU Commission, specifically the part that deals with Horizon Europe --- so stuff that would impress the...
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    (ME/CFS): Investigating care practices pointed out to disparities in diagnosis and treatment across European Union - Strand, Nacul (EUROMENE) 2019

    Sounds reasonable - how do you suggest that "we help shape it -- tell them what we want"?
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    (ME/CFS): Investigating care practices pointed out to disparities in diagnosis and treatment across European Union - Strand, Nacul (EUROMENE) 2019

    Reasonable summary @rvallee in my view. @Jonathan Edwards had an insightful take on EUROMENE. Jonathan's point was that EUROMENE was a broad church ---. He praised (rightly from my limited knowledge) Derek Pheby who I think had the original idea of setting EUROMENE up (I think Derek's retired...
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    (ME/CFS): Investigating care practices pointed out to disparities in diagnosis and treatment across European Union - Strand, Nacul (EUROMENE) 2019

    The EUROMENE biomarker group includes Jonas Bergquist (OMF - Uppsala Sweden) and Carmen Scheibenbogen Charité Berlin. However, some of this is concerning @Michiel Tack @Andy Particularly if the views which prevail don't come from biomarker group etc. @EspeMor one thing that comes to mind is...
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    (ME/CFS): Investigating care practices pointed out to disparities in diagnosis and treatment across European Union - Strand, Nacul (EUROMENE) 2019

    Interesting thanks - I may try to get a look at this --- Bulgaria (EU Commissioner for research/Horizon Europe - Gabriel's country)?
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    Circulating levels of GDF15 in patients with myalgic encephalomyelitis/chronic fatigue syndrome, 2019, Melvin, Lacerda, Nacul et al

    I've heard that severe ME looks (metabolically) different from moderate.
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    Circulating levels of GDF15 in patients with myalgic encephalomyelitis/chronic fatigue syndrome, 2019, Melvin, Lacerda, Nacul et al

    There's been a lot of talk of matching activity level between test group (ME) and control group - MS has been suggested as a control group. @Jonathan Edwards thoughts on using MS as a control group i.e. in ME studies? Thanks in advance!
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    Identification of actin network proteins, talin-1 and filamin-A, in circulating extracellular vesicles as blood biomarkers...ME/CFS 2019, Eguchi et al

    @duncan I noticed something online re intracellular calcium regulation and actin - around when I posted my previous comment. So I Googled for a few seconds just now and found this "A Tripartite Interaction Among the Calcium Channel α1- and β-Subunits and F-Actin Increases the Readily Releasable...
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    Identification of actin network proteins, talin-1 and filamin-A, in circulating extracellular vesicles as blood biomarkers...ME/CFS 2019, Eguchi et al

    Very interesting; exosomes are my latest big hope! So the pattern of activity in people with ME is different (activity levels lower) so some changes can be due to that! I think Maureen Hanson presented data (OMF - September this year?) showing the number of the smallest EVs (exosomes) was...
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    Oxford: MitOX Conference 2020, online, 3-4th Dec 2020

    Thanks for bringing this to my attention @Andy - I'll try to make a point to view it.
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    Identification of actin network proteins, talin-1 and filamin-A, in circulating extracellular vesicles as blood biomarkers...ME/CFS 2019, Eguchi et al

    I think the approach suggested by @Jonathan Edwards and @Adrian is interesting. I.e. if you examine the contents of the exosomes then this may provide insight into the disease mechanism. E.g. there's some information here which indicates that the exosomes may contain actin - possible insight...
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    Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from CFS, 2011, Schutzer et al.

    Agreed i.e. I'd forgotten that this was a cerebro spinal fluid study. However, my point is that you may need to look at the contents of exosomes (using this technique - mass spectrometry proteomics) in order to understand what is going on in this disease. This may explain why Whitney Defoe's (+...
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    Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from CFS, 2011, Schutzer et al.

    It might turn out that this was an example of the right technique (protein analysis) applied to the wrong samples - i.e. plasma rather than exosomes...
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    Identification of actin network proteins, talin-1 and filamin-A, in circulating extracellular vesicles as blood biomarkers...ME/CFS 2019, Eguchi et al

    I think the calcium channelopathy theory was badly dented by Wenzhong Xiao at the OMF Stanford Conference a few years ago - there was no supporting evidence from the genetic work. I.e. people with ME were no more likely to have genetic problems, linked to calcium channelopathy, than healthy...
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    Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from CFS, 2011, Schutzer et al.

    Wild speculation here! Possibly the genome wide association study (GWAS) Chris Pointing is hoping to carry out would help with this type of study. I.e. identify target genes (which produce proteins?) and pathways. Then repeat this type of protein study i.e. focused on a limited number of...
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    Alzheimer's Trial: Lessons From a Failed Drug — What the pragmatic trial of minocycline can teach us

    Cort Johnson did an article re the lack of progress in Alzheimers: https://www.healthrising.org/blog/2019/09/16/alzheimers-chronic-fatigue-fibromyalgia/ Here's an extract "study found that some people who had never come down with dementia had plaque-filled brains" i.e. it looks like research has...
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