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Somewhat off topic @Jonathan Edwards but do you think there is a sub-group who have a B-cell autoimmune disease or do you think that those with a B-cell autoimmune disease "probably should not be diagnosed as ME"?

Sadly I have to agree @rvallee . There are estimated to be 2 million people in the EU with ME (500 million population prevalence approx 0.42%). As those on this site know; many people are house bound or bed bound (approx 25%). This is a totally inadequate response from the Commission.

Thanks @Sly Saint The reply from the Commission is disappointing --- let me tell you about the commercial (lactobacillus) probiotic the EU Commission has spent public money developing! It's not just your ordinary (lactobacillus) probiotic yogurt! As per a previous post "Indole propionate (a...

Basically Kynurenine surpresses the immune system; so low Kynurinine may mean more risk of autoimmunity. IDO1/2 convert trypotophan to Kynurinine. Yes the trap suggests that lowering intracellular tryptophan (using IDO1/2) means that you should return to normal. This suggests that polysulfides...

"Here is the 4 hrs video recording of the live streaming of events on 16th" Link courtesy of @Raghav on Phoenix Jarred Younger's presentation (by video link) at the recent Conferences in Sweden []. 2 hours 22 minutes to 3 hours (roughtly)

I wonder if there is a condition, in the NIH award, that they need to engage the public--- in the best traditions of a box ticking exercise -- here's the evidence (box ticked)!

This guy Professor -- has been praised by Cort Johnson for his superb communication skills. My impression was there wasn't much substance (e.g. new science) but it was interesting. Re gene activation --- I recall Wenzhong Xiao presenting data which showed that gene activation in ME most closely...

Yes, I had a very welcome email from Irina von Wiese. You have described the situation very well i.e. we're discovering people like Irina who are keen to work with us (people with ME/family members) to deliver EU funding for biomedical ME research. Unfortunately I also think you're also correct...

Here's a little more detail @strategist: The four main EUROMENE working groups: Epidemiology, Biomarkers, Socio-economic, Clinical, are due to make recommendations next February/March and EUROMENE will then lobby regarding these [https://mecfsconference.org.au/videos/eliana-lacerda/ - Time...

I agree with what @Andy has said i.e. basically the situation is an organised mess. I think part of the reason reflects Vicky Whittemore's statement at the Invest in ME Conference (2018?) i.e. the biomedical pathway hasn't been identified therefore there are no drug targets etc. So anything...

Eliana Lacerda, vice-chair, EUROMENE speaking at the EMERGE Conference in March (?) 2019. You can view the video online via the EMERGE website. I'm not clear what will be coming out (need to review video myself) potential biomarkers (potential diagnostics), incidence (roughly 2 million in EU)...

Yes we've seen exceptional in Europe - ME gets zero funding (2 million people have ME); Lyme gets 33.9 million euros in 10 years (1 million people have Lyme).

I'm hoping that we will see applications in the EU. E.g. EUROMENE is due to make recommendations in April 2020 regarding biomarkers. So possibly we'll see related applications regarding biomarkers which could be used for diagnosis (speculation). I assume that there is an element of no suitable...

Hi here's a standard letter, i.e. one used in connection with Evelien's petition. You'll find more online e.g. there's one on the ME Action webpage [and other places like the Emerege webpage ----https://emerge.org.au/talking-about-me/#.XZdmZGYUncs]. I'd do what you can now! Dear xxx, I...

Yes; please write to your MEP, & sign the petition, while you still can! Dr Vicky Whittemore (NIH) at Invest in ME Conference (2019): "advocacy groups --- that's what makes the difference - - when they [elected representatives] hear that, from people with the disease - - advocates --...

Just bear in mind that Lyme disease has received EUR 7.8 million for the development of a diagnostic test and EUR 25 million for the development of a Lyme vaccine (treatments) - Commission response to an oral parliamentary question: "Question six: let me highlight that there is indeed currently...

The petition has been left open by the PETI Committee and they expect the Commission (bit with budget -- Horizon 2020/Horizon Europe) to update the Committee. Here's an extract from the transcript provided by @Michiel Tack "Dolors Montserrat, chair of the Committee on Petitions: Thank you very...

yes - There's a "Guide to support the petition" link on this webpage https://www.meaction.net/2019/07/17/sign-a-petition-to-ask-the-eu-for-funding-for-biomedical-research/ ME Action are supporting the petition...

There's a "Guide to support the petition" link on this webpage https://www.meaction.net/2019/07/17/sign-a-petition-to-ask-the-eu-for-funding-for-biomedical-research/ ME Action are supporting the petition. I've told my local MEP that I doubt that this system meets EU equality legislation! A lot...

Yes you can still sign - I'm not sure when it will be closed, but if you wish to support it, I suggest that you sign it now.