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@Jenny @Wonko Robert Phair (The IDO Metabolic Trap researcher) posted on PR that he is interested to hear about sudden remission stories if you guys feel like sharing (His username is HTester) https://forums.phoenixrising.me/index.php?threads/the-ido-metabolic-trap-guy.62727/page-7#post-1027967

Dr. Emma Reinhold wrote the EDS toolkit for the RCGP's and I highly recommend folks read it with a thought on how can we do the same thing for ME! Things like this are really important as they can be very easily shown to your GP. https://www.rcgp.org.uk/eds I particularly like that it has a...

My two pennies worth. Suggestion : There needs to be two documents, one for GP's and one for specialists. There is no way a GP can navigate the complexity of ME and co-existing conditions without knowledge. The specialists job is to rule out other diseases, look for treatable co-existing or...

Not much right now but this made me chuckle - Follow the money!!! EDIT to add for those that can't see

Shoot. I cannot see them as I have an ad-blocker too, that I couldn't figure out how to turn off. Folks on Facebook can join the group by putting in a request at https://www.facebook.com/groups/421053998316485/?ref=group_header I hope people can follow that link if they want to participate in...

Thanks @Andy . That makes sense. I'd forgotten they were going to Australia 12-15th March, right before the NIH conference.

Fereshteh from Stanford Genome Technology group also hosts a closed Multi-Ohmics group on Facebook (need to request to join) where she is hosting two polls related to the multi-ohmics study Group : https://www.facebook.com/groups/421053998316485/?ref=group_header 1. If you are an ME/CFS patient...

Update 10th January 2019 Fereshteh Jahanbani still needs 4 HEALTHY boys aged between 14-18, LOCAL to SF Bay Area Facebook post from Nov 19th 2018 has full requirements

It does look an impressive speaker list. I hope they get a good attendance from NIH staffers I'm a bit surprised that the UK ME/CFS Biobank team are not on the list as they have received significant NIH funding 2013-2021 $500K+ a year...

@Trish. I remember reading a post recently where you were discussing tracking people at the moment they got ill. This video is about one such study. And this is the paper on it by Broderick et al. Cytokine expression profiles of immune imbalance in post-mononucleosis chronic fatigue (2012) Link...

I contacted Marilyn at OMF to let her know the concerns. This was her reply Yes. We have heard the concern loudly. I appreciate your reaching out trying to help. We are consulting and will be modifying the language. The challenge is for the winning poems being converted into a song and art work...

It sure would be nice if the NHS could do a search of records for ESR data for patients that have an ME/CFS diagnosis. But what I hear from folks in the UK is that the health records are a mess, and tests are not even available for review by patients. ESR patient data must be available somewhere...

This is Amit's response when asked about sharing the extra details in the first "Blood" abstract

Since there has been some brief talk of statins in this thread, and Stuart talked about them in the video, I felt I should mention that they may not be good for mitochondrial function. Link : Coenzyme Q10 and Statin-Induced Mitochondrial Dysfunction

I read both again. The first abstract from the conference has a lot of interesting information not covered in the full text paper e.g. low ESR and zeta potential to name a few. It seems as if the full text paper was limited to just "deformability" and the data to support that, but for the...

For those interested the late Norman Booth, one of the authors, commented on the paper here https://forums.phoenixrising.me/index.php?threads/mitochondrial-and-energy-metabolism-dysfunction-in-me-cfs-%E2%80%94-myhill-booth-and-mclaren-howard-papers.47488/page-4#post-785000

The paper states they used fresh blood, so that will severely limit them to volunteers who live close to the test lab, and available at a time the researchers and their equipment are available. Once the team comes up with an easier to use test that should open the door to many different types of...

Here is the meat and potatoes of the paper

I believe this is his bio, listed at Monash University, Melbourne. Not sure if he is still working due to ME/CFS. Link : https://research.monash.edu/en/persons/mark-guthridge ETA : He also has an ME-pedia entry Link : https://me-pedia.org/wiki/Mark_Guthridge

In August 2018 Michael on twitter said he was using free weekend fMRI scan time in addition to any private funding plus volunteer time.