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Neither would be options for me, I'm afraid, though perhaps others could do that.

Hi Espe - any thoughts for those of us who aren't well enough to meet with our MPs in person or on the phone and who don't use social media such as FB, Twitter, etc.? Have you considered a template email that those of us in that position could send, for instance?

Thanks for doing that - yes, you've done it right and can see your listing here: https://www.s4me.info/calendar/

Do you want to add that to the calendar, @MeSci?

My bad! Thanks (and thanks to Dr Hanson).

She doesn't say he was wrong, though. I assume she thinks so because of what she's said elsewhere but it's not explicit in this tweet.

This to me is the interesting bit: https://www.healthrising.org/blog/2018/10/10/cdc-roundtable-multisite-klimas-reset-chronic-fatigue-syndrome/ Dr. Klimas’ team has gathered an amazing amount of data on what happens during and after ME/CFS patients’ Achilles heel – exercise. Measuring ME/CFS...

It seems to be a very widespread part of the culture in that part of academia/research that deals with medicine, which is a huge shame because that silence impacts on the wellbeing of patients. It's the very opposite of what universities are supposed to be for, and so disappointing.

Unfortunately, it's knowledgeable scientists keeping a low profile that allow this stuff to go unchallenged in academia, with resulting harm to patients.

RAMSAY 2018: MEET PROF. VINCENT LOMBARDI, PHDOCTOBER 9, 2018 “Characterization of Janus kinase (JAK) activation profiles in ME/CFS subgroups” A project summary as written by Prof. Vincent Lombardi, PhD: Several investigators have reported that ME/CFS is characterized by a dysregulation of...

Wasn't this what MEGA was going to be doing? Won't they need a shedload of patients?

I've broken this up for ease of reading. If you want to copy it into your post, @Tom Kindlon, I'll delete mine. “Whole genome sequencing and analysis of ME/CFS” A project summary as written by Dr. Liz Worthey, PhD: We propose to utilize whole genome sequencing (WGS) combined with cutting edge...

Three Brits! Broken up for ease of reading: Janet Lord, PhD, Professor of Immunology, University of Birmingham, and Chair of Immunology. Dr. Lord directs the Institute of Inflammation and Ageing and the MRC-Arthritis Research UK Centre for Musculoskeletal Ageing Research. Dr. Lord brings...

Did you sign into the original livestream, @Andy? I did, and can see the video now.

But shouldn't everyone know that they're being randomised? I don't think he's talking about hiding that aspect. People would still need to give consent.

Always a bit worrying to see AfME on these things, given that they basically don't seem to understand ME/CFS. Without knowing the content, it's hard to know how pleased to be about this, though the presence of Dr Shepherd is somewhat reassuring.

I know Ben Goldacre hasn't exactly covered himself in glory in relation to PACE but he does nevertheless say some interesting things. At the beginning of this talk he presents an interesting proposal about how to get a cheap and easy randomised trial across general practice whenever there is...

Something interesting on Cort's blog about Younger's work which I don't remember Younger mentioning (but that could just be my poor memory): Because he was also able to apply his new technology to traumatic brain injury (TBI) and rheumatoid arthritis patients, we now know another startling...

Minutes of the 1 May 2018 Forward ME meeting say: Matters arising Science Media Centre (item 3, minutes of 28 Marchmeeting). The Chairman announced she had received no response to her letter to their Chief Executive. She requested the help of members in the form of anything we get to know...

Also from the minutes: Nina also read out a letter she had received from Dr Jonathan Leech of the RCGP. In it he said he had read the transcript of the Westminster Hall debate and was very concerned about the treatment of ME/CFS patients reported by MPs. He had noted her concern about the...