Open Medicine Foundation (OMF)

belbyr said:
I look at Whitney as the 'proof in the pudding'. If he one day gets up and walks outside his house on his own power, I'll know that OMF found something.
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That's far too narrow a test to be useful in assessing research in ME/CFS - we still don't know if we are dealing with a single disease process that is expressed with huge variation across a heterogenous patient population, or a disease process that expresses in multiple subtypes within homogeneous subsets of a heterogenous patient population, or multiple disease processes expressed with huge variation across a heterogenous patient population, or multiple disease processes that expresses in multiple subtypes within homogeneous subsets of a heterogenous patient population, or indeed some horrific multiple of all the preceding. The best we can expect (hope is a different matter) at this point is that each bit of research should take at least a small bite out of a Gas Giant sized problem.

Of course no research approach should be beyond criticism - my own view is that what I would characterise as the 'stick a pin in the map' approach and look at that spot under a microscope, is far too reliant on a lucky strike for success, and while GWAS has the possibility of removing or at least vastly narrowing the reliance on a lucky strike to move things forward, I still believe that much more basic research in understanding the who and what of ME/CFS is needed to break the problem into more manageable pieces.
 
Dolphin said:
I think they may have delivered some false hope but also some real hope.

Hope for progress from research helps keep me going: it has helped me avoiding ever becoming depressed. Maybe there will be a breakthrough in my lifetime, maybe there won’t be, who knows, but the hope that there might be keeps me going. I think hope can be useful.

And if there is little or no research going on, it’s harder to have hope.
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Hope is what keeps me going too. For the 30+ years that I’ve been unwell, I don’t think I would have been able to continue without hope of improvement. Initially I hoped that my illness would improve naturally even if there were no effective treatments. For many years – nearly all of my 20s and 30s – there was so little biomedical research that it was hard to have any hope of a medial breakthrough. Reading the literature was more a cause for despair than hope.

We are still a long way from where we need to be but there is much more cause for hope through advances in biomedical research than there was – and OMF is a significant part of that IMO. There are many more competent scientists, organisations and institutions involved and interested in biomedical ME research, and there are some interesting results which have given me hope (eg recent studies on endothelial cells, unrine metabolites and microbiome).

I understand some of the criticisms of OMF (particularly the overhyping which may give false hope) but no organisation is perfect and I am grateful to them for their work and what they are trying to achieve.

I also echo Dolphin’s sentiment about the need to donate to research charities – to which I would also add the need to fundraise. I’ve managed to raise a fair sum just by asking for donations via justigiving and Facebook for birthdays and Christmases. I appreciate that not everyone is lucky enough to have friends and family who are supportive but most people should be able to raise some money in this or other wasy, even if it’s just a few pounds.
 
Moved post

Milo said:
We are a little off topic but a few years ago Ron Davis was very publicly saying that publishing paper was slowing his work
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That's what PhD students and postdocs are for. No one expects the project lead to sit there drafting papers.

I'm sorry but the reasons that the OMF offers to the general public for doing things the wrong way make no sense. Maybe they are trying to appeal to the unconventional genius stereotype of a scientist who doesn't have the time for doing things correctly because he's far too above crap that mere mortals do like publishing their results in a transparent format.

They are pulling wool over people's eyes. People who don't have a science background and who are handing over their limited funds in the hope of a cure. Relatively large amounts of money (as far as the ME/CFS field goes) have been burned through over the past decade with nothing to show for. Huge hype about every half-baked hypothesis, then quietly not publishing negative results etc. I'm not expecting breakthrough discoveries, just basic principles of the scientific method to be followed. If the results are negative, so be it.

They hyped the nanoneedle for years and then claimed, in response to the most basic/obvious criticism that the tech hadn't been tested on other conditions, that they couldn't recruit a control group of people with other chronic illnesses. I'm sorry, what? You can't get IRB approval from Stanford to go recruit 20 people in a rheumatology clinic or something?
 
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We’re bubbling with excitement and are almost ready to share some big news. It’s something that will take a big step forward in our mission to end ME/CFS and Long COVID. We can’t say what it is yet, but you’ll want to be the first to know. Stay tuned as we will announce it on November 1!

I thought it was April 1st for fools day?
 
Dakota15 said:
...wouldn't they just announce that though? Versus building up anticipation from a community that is waiting on hope...
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There's really a chance that it's just a big donation from someone that will triple every donation made in November or something like that. I'm a donator myself and will continue to be, because I support the work that they do. Their messaging on the other hand....
 
Jaybee00 said:
probably not because it’s not an OMF project.
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It builds on it.
In 2019, Professor Ron Davis from America [1], reported that researchers had developed a nanoelectronics test which could detect an impedance in white blood cells taken from people with ME/CFS.

They felt their findings could represent a diagnostic marker, but since then, there hasn’t been any further research in this area. The ME Association and ME Research UK have jointly funded a new 12-month study that will build upon these initial findings.

The UK researchers have already used a more robust approach to identify statistically significant differences between the electrical properties in blood from people with ME/CFS compared to healthy and Multiple Sclerosis (MS) controls (using samples from the UK ME/CFS Biobank).

Their preliminary work suggests that the 2019 results from America are repeatable and can be explored in more detail. Furthermore, that they have the potential to be used as a routine diagnostic test.
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from email:
Dr. Lucinda Bateman Joins OMF Scientific Advisory Board

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Open Medicine Foundation (OMF) is thrilled to announce that Dr. Lucinda Bateman has joined our esteemed Scientific Advisory Board. Her appointment serves as a testament to our ongoing commitment to fostering a multidisciplinary approach to medical research and care, ensuring we remain at the forefront of innovative research.

Dr. Bateman's dedication to patient care, research, and medical education aligns seamlessly with OMF's mission. Currently, she serves as the Director of the OMF-supported Medical Education Resource Center (MERC) at Bateman Horne Center, further solidifying her important role within our foundation.

About Dr. Lucinda Bateman:

Lucinda Bateman, MD, is a distinguished clinician, researcher, and educator. A product of the esteemed Johns Hopkins University Medical School, Dr. Bateman has always placed the patient at the center of her practice. Her philosophy is clear – just because a condition is unknown or unexplained does not mean the patient should receive anything less than thorough and compassionate care.

Since establishing her practice in 2000, Dr. Bateman's accomplishments are numerous:
  • Served on six prestigious boards or committees.
  • Acted as the principal investigator for 45 groundbreaking studies.
  • Authored or co-authored 40 journal articles.
  • Contributed as an adjunct instructor and assistant professor at the University of Utah in various departments.
  • Lectured at global conferences, sharing her expertise and knowledge.
  • In 2015, Dr. Bateman played a pivotal role as a clinical expert on the IOM/NAM committee, assisting in the formulation of the clinical diagnostic criteria for ME/CFS. This was a significant moment for clinicians, researchers, and patients alike.
Her collaborative efforts span institutions such as Stanford, Columbia, Cornell, Harvard, CDC, NIH, RECOVER Initiative, Riken, and more. As the co-founder of the U.S. ME/CFS Clinician Coalition, her influence in the medical community is undeniable.

Further demonstrating her dedication, in 2015, Dr. Bateman fused her private clinical and research practice with its non-profit counterpart, OFFER, birthing the Bateman Horne Center (BHC). This center is devoted to the diagnosis, management, research, and education benefiting those affected by multi-system chronic complex diseases (msCCD).

Today, her passion remains undiminished as she continues to champion the cause of enhancing access to informed medical care, placing a keen emphasis on medical education.

We are honored to have Dr. Lucinda Bateman on board and are eager to witness the invaluable insights and contributions she will bring to the OMF Scientific Advisory Board. Welcome, Dr. Bateman!
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