Open Medicine Foundation (OMF)

jonathan_h said:
Also, if he’s going to act as a mouthpiece for the OMF, IMO he is ethically obligated to follow charity standards re: public communication. Those exist to prevent harm even by well-intentioned people.
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Thanks, you've put into words what I've been wanting to say for a while.

I wish they would either make it an official OMF communication or keep quiet about it. I'm fed up of all these "inside info" hints.

Yeah, sure, Whitney is speaking unofficially as an individual, but he's the son of the person running a major ME research charity, there are ethical issues here.
 
Merged thread

Dr. Davis says that in addition to this Abilify study, what he is excited about is that now he and his associates are going to do another 'molecular analysis.'

Does he mean that now they will examine these 100 patients in the new Abilify study as part of this new molecular analysis? Or will it be other patients.

He says this new molecular study will be LIKE the severely ill patient study, which has not been published yet--but with that experience behind them, they can now eliminate what is unimportant, do new things that have never been looked at before in any ME patient (biochemistry and genetics), and they will look at genes which have not been analysed before.

Dr Davis says this is exciting because it could 'give new insights' and new possible drugs to try. They need donations, however, to get on with this study.

So, it looks as though the Dr Davis team are embarking on a brand new study. It isn't clear to me, however, if it will be using the patients in the Abilify study. Also, I wish that Dr Davis would have mentioned whether or not he and his team have some idea of why Abilify seems to help some patients, and if this insight is part of the new exploration he is embarking on. I am anxious as are others to know what he might be thinking Abilify is doing. And why does it not help more.

Anyhow,....hard to hang on and wait with no time lines....but best wishes to their whole team.
 
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Jaybee00 said:
Looking for funding for Abilify study....
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I hope that they can get the funding for the proposed double blind study - it would be good to have that treatment possibility addressed properly.

Ron Davis also suggests in that video that the earlier work on red blood cell deformability may be correct. He says that the later work done which found no difference in RBC deformability between blood from people with ME/CFS and healthy controls may have been confounded by the time taken to get the samples analysed (longer in the later studies), and differences in the treatment of the blood. Changes in the oxygenation of the cells was one variable mentioned.

Red blood cell deformability was discussed on this thread:
Erythrocyte Deformability As a Potential Biomarker for Chronic Fatigue Syndrome, Davis et al (2018)
 
From this update from Dr Ron Tompkins (bolding mine):

--
In 2020, OMF secured a $1 million grant to launch the first year of an international, multi-year study across the five OMF funded Collaborative Research Centers (CRC). The aim of this study is to examine Post-COVID Syndrome transitioning to ME/CFS. We are actively working to raise an additional $2 million for years two and three of the study.

Project Overview

The ability to monitor the development of ME/CFS from a known viral infection is unprecedented to date and crucial to our understanding of the disease. The CRCs have initiated the collection, extensive testing and analysis of COVID-19 patient samples.

My colleague, Dr. Jonas Bergquist, Director of the Uppsala Collaborative Research Center, has shared that as of February 2021:

“We have now done proteomics (the large-scale study of proteins) and metabolomics (an analysis of the metabolism) in cerebrospinal fluid (CSF) and blood plasma from about 40 Intensive Care Unit COVID-19 patients. Our next step will be the large-scale metabolomic study of plasma from a larger cross-section of less severe COVID-19 patients (where we have no possibility to collect CSF) not admitted into the ICU.

In parallel, we are performing CSF proteomics and blood plasma metabolomics in around 50 Herpes Simplex Encephalitis patients (a rare infection with a related neurological disorder). The data from this cohort will provide a valuable baseline for neuroinflammation (an inflammatory response within the brain). As we are also running both CSF and plasma analysis from ME/CFS patients in the same investigation, we have a unique opportunity to compare and learn from COVID-19, HSE and ME/CFS patients.”

Example of tests to be performed:
  • Autoantibodies
  • Proteomics
  • Leukocyte Genomics
  • Immune Cell Profiling
  • Metabolomics
  • Micro RNA
  • Extracellular DNA (Viral reactivation and Mitochondrial DNA)
  • Microvesicles and viral sequencing
We hope that our studies in blood and CSF samples will help us be able to identify proteins and large molecules (e.g., antibodies) and small molecules that appear or disappear as ME/CFS develops, helping to advance our understanding of the biological triggers for this disease.
--
 
OMF has had a security incident/data breach that affects personal data. They have sent out an email to people who are affected (at least to people in the EU and UK, according to the email), explaining what happened.

"This breach occurred at some point beginning on February 7, 2020, and could have been in there intermittently until May 20, 2020."

I didn't know about it until now, I'm very disappointed that it took them this long to inform us.
 
mango said:
I didn't know about it until now, I'm very disappointed that it took them this long to inform us.
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They don't actually say when they discovered the breach, only when it occurred, so they may not have found out about it immediately.
In 2021, upon deeper examination of the subset of data removed by the cybercriminal and informed by an abundance of caution, we thought it prudent to tell you that the following limited information may have been included in the breach:
  1. Your Name
  2. Address
  3. Phone Number
  4. Email Address
  5. Donation Dates
  6. Donation Amounts
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I don't have any memory of actually giving them my phone number, though, unless it's unlisted, your name and address would be enough to find it. They do say:
Based on the nature of the incident, subsequent research, and third party and law enforcement investigation, we have no reason to believe that any data went beyond the cybercriminal, was or will be misused, or will be disseminated or otherwise made available publicly.
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ETA: That last line makes me wonder if the breach was discovered incidental to some other investigation - as though the OMF data was Hoovered up with a lot of other data.
 
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@Forbin Ok sure, maybe you're right. I interpreted this bit

"In 2021, upon deeper examination of the subset of data removed by the cybercriminal"

as saying there was an examination earlier (implying that the security breach was discovered/known earlier than this), but they only did a deeper examination recently.
 
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