Open Medicine Foundation (OMF)

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.

 

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.

 

Did they ever test the nanoneedle on patients with other illnesses?
https://www.omf.ngo/nanoneedle-technology-2/

 

Moved post

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?

 

Naviaux wins mitochondria research award.


https://bos.etapestry.com/prod/viewEmailAsPage.do?erRef=773.0.734158614&databaseId=OMF&mailingId=44995522&jobRef=773.0.1792966735&key=7ed94938c43c962c1798fe42075987&personaRef=773.0.734158755&memberId=1482001482

 

OMFAL being Open Medicine Foundation Australia Limited.

 

https://www.omf.ngo/tgn-returns/

 

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?

 

...wouldn't they just announce that though? Versus building up anticipation from a community that is waiting on hope...

 

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....

 

A pre-announcement announcement.

 

Looks like it might be this

https://meassociation.org.uk/2023/1...-aims-to-create-a-diagnostic-test-for-me-cfs/

 

probably not because it’s not an OMF project.

 

It builds on it.

 

Trial details - mestinon and/or LDN

https://www.omf.ngo/lift-trial/

This post has been copied and discussion moved to:
The LIFT trial (OMF) - Pyridostigmine (mestinon) and Low Dose Naltrexone (LDN)

 

from email: