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Thanks @wigglethemouse this is interesting I.e. an update. I don't have any Swedish; anyone here know if you can do text to speech and then Google translate? I may ask if there's a transcript.

I recall Ron talking about the difficulties sequencing HLA genes :; Stanford were working on special techniques for HLA genes. So if you have a standard genome sequence then I assume that the inference is that the data may not be reliable I.e. for HLA. We could of course ask someone from OMF. -...

While I know basically nothing about this I'm intrigued. Anyone got an update? For one there's always been the association with autoimmunity but B-cell autoimmunity faded after the the failed rituximab trial. The other thing is purely supposition. I recall a researcher saying that she felt...

I think I should have added that my point was that 2 million pounds is a lot of money to raise via public donations. Only 1 pound per person with ME in the EU but still difficult to fund raise - that's why we need public money.

What I'm going to write may be disputed but I think Vicky Whittemore is on our side in this debate. I.e. the side of more than 1 million people who have ME in the US - approx 25% bed bound or house bound. I do think there are rules when you change from being a patient advocate (which Vicky was...

https://mecfsresearchreview.me/2019/11/08/bold-plans-for-two-big-uk-biomedical-research-projects/ Looks like this genome-wide association study (GWAS) may get funded - cost approx. 2 million pounds sterling!

I largely agree with @rvallee The image of ME means that it doesn't get public funding to the extent of a "real" disease with the same impact (number of people affected and severity - disease burden). Also, we're not close enough to understanding the disease i.e. to get the pharmaceutical...

Are they linked to Jonas Bergquist (Uppsala)? Thanks

I think Ron Davis said that he and Maureen Hanson were discussing opportunities for researchers to pursue a career in ME; they both agreed that you couldn't recommend that a young researcher worked in this area - no funding! I think Maureen's student finished her PhD in Seahorse cellular energy...

Thanks. I think many of the EU research grants are multicentre. I assume the idea is that we get a list of research centres (and best practice centres) as evidence that there is actually capacity to do research in the EU. I know what you mean about formal centres -- there are none but there are...

Hi, I've been asked to “prepare a list of research and best practice center on ME in the EU ( Norway is included)". Obviously there's Jonas Bergquist Uppsala Sweden then there's ----Ideas--- Thanks

Alzheimer's https://www.healthrising.org/blog/2019/09/16/alzheimers-chronic-fatigue-fibromyalgia/? Lyme - http://simmaronresearch.com/2019/10/better-lyme-diagnostic-nih-strategic-plan/ A lot of money has been spent on a diagnostic test and it hasn't been delivered yet ---- post Lyme disease...

I have a peripheral involvement in Government policy [a devolved UK regional assembly - Northern Ireland]. I've watched a senior public official, requested to appear before a committee (comprised of elected representatives), being asked to look at funding X--. I think that generally helps to get...

Yes as you pointed out recently there's no strong evidence for B-cell autoimmunity (rituximab failure) and not much for T-cell autoimmunity. So that just leaves chronic viral infections and so far studies looking for virus's haven't been finding much (Ron Davis etc. however he's only really...

In a large organisation, US Government --- Congress --- there may be people with a family member with ME. If you take a sample of people involved in ME then you'll see a disproportionate number have a family member with ME. So those with some link to ME are one group who may help. Another may be...

Here's a quote from 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 -- telling them [elected representatives] what's needed is really...

Thanks @Snow Leopard "---mitochondrial fission as a normal adaptation to increased energetic demand. During submaximal exercise, physiological mitochondrial fragmentation results in enhanced, rather than impaired, mitochondrial function and is mediated, in part, by β1-adrenergic receptor...

You've made me laugh. I had an email from Bhupesh (there were a number of people in the correspondence - all more important) on 18th October "We are about to submit our manuscript on viral effects in ME/CFS". Hopefully that will be published fairly soon; however, your experience probably...

I wonder what you think of Bhupesh Prusty's findings re mitochondrial fragmentation. I.e. filter ME plasma and add it to healthy cells the levels of mitochondrial fragmentation are normal. Add the material which has been filtered out (roughly size of exosomes) to healthy cells and mitochondrial...

Thank you very much for your reply. Here's an extract from a recent response to an EU Parliamentary question on ME: "Horizon 2020 funds --- RTCure(4) project that aims at improving diagnostics and treatment of the rheumatic and other autoimmune diseases largely associated with fatigue and...