data

NIH's MapMECFS newsletter stated that the clinical data and biospecimens from CDC's Multi-Site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM) study are now available on mapMECFS and searchMECFS. But it requires a request as below, not just an account, to access...

Hi all, its appears a German Dr, Dr Habets who is an Oncologist, is undertaking a trial (or just randomly treating its very hard to tell) with Rituximab in Long COVID and Me/cfs patients who test positive for GCPR aabs via bioassay (ie not ELISA). Its REALLY hard to fully understand what is...

Abstract Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating disease which involves multiple body systems (e.g., immune, nervous, digestive, circulatory) and research domains (e.g., immunology, metabolomics, the gut microbiome, genomics, neurology). Despite...

Moved from this thread It was suggested yesterday that this Member of the House of Lords local to me is joining Forward ME? She has been asking pertinent questions.... Baroness Scott of Needham Market Liberal Democrat To ask Her Majesty's Government why Chronic Fatigue Syndrome (CFS)...

PEM has become a mandatory symptom in many CFS guidelines, so I would expect that there is plenty of data of monitored patients during the malaise/fatigue interval because this is when the disease's mechanism of action is amplified and certain biomarkers should stick out and be clearer. Maybe...

I'm sure we must already have discussed this, but I've not found the thread/discussion so thought that I'd risk to problem of a re-post (sorry mods). https://www.whatdotheyknow.com/request/cfs_fine_what_story_does_the_obj_2#incoming-1026066 Woolie's summary of FINE: As Woolie says, they did...

I pursued this after the failure of PLOSONE to make the researchers hand over the data in compliance with the journal policy. The researchers relied on the REC. See Expression of Concern and Response here: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0177037 I asked the...

I first applied back in 2016. I went through review and then a complaint to the ICO and then all through last year I was in the process of an appeal to the FTT. The ICO switched right at the end to support me and QMUL settled, promising to send me the data, 'if they could'. Today I have just...

KCL also claimed that it doesn't hold the data in terms of the FOIA. The ICO upheld the KCL decision, so I appealed to the FTT. In the course of the appeal, the ICO switched sides. The FTT has affirmed that KCL does hold the data. It now has until the end of the month to provide them or argue...

EA/2018/ 0142 John Peters v the ICO and University of Bristol. The First Tier Tribunal finds for the Appellant. And orders the release of the SMILE trial data. Unanimous decision. Date: 11 March 2019 Promulgated: 12 March 2019 Decision here...

My aim on this thread is to share the results of my digging into this question over the last couple of days. I have found several papers with very different figures and will post them in a series of posts here. The 52% claim: The UK document, Guidance for commissioners of services for people...

@dave30th Just watched BBC Newsnight piece on the Lancet apparently knowing about flawed data in one of their publications leading to death in medical practice. Norman Lamb MP has written to the Lancet and claims to be confused by their lack of action despite the publishers of the paper...

In response to the Expression of Concern, the Statement of the Authors says: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0177037 During negotiations with the journal over these matters, we have sought further guidance from the PACE trial REC. They have advised that public...

I've created this thread as a repository for user-generated graphs and gifs related to the PACE trial.

Not the most thrilling of articles but perhaps someone could send this to QMUL, I'm sure they could benefit from it?? ;)

"GDPR: how charities should prepare for data protection changes New regulations affecting fundraising, campaigning and volunteer management come into effect in 2018. Here’s how you can be ready: Four letters – GDPR – have been imprinted on the minds of fundraisers and charities over recent...

I have received the decision from the ICO who accept that QMUL do not hold the anonymized data. The decision is here: https://ico.org.uk/media/action-weve-taken/decision-notices/2018/2173169/fs50673373.pdf I am intending to appeal. I have also made a similar request to KCL.

http://www.slate.com/articles/health_and_science/science/2017/10/criticizing_a_scientist_s_work_isn_t_bullying.html?wpsrc=sh_all_mob_tw_top