Open Medicine Foundation (OMF)

Chandelier said:

We are very pleased to share that Dr. Christopher Armstrong and his team at OMF’s Melbourne ME/CFS Collaboration have been awarded nearly $1 million ($999,977.50) through the Australian government’s Medical Research Future Fund (MRFF) for the project Energy inefficiency in Long COVID and ME/CFS.

These funds were specifically put forth by the government for research associated with COVID-19, including a special designation for cases of ME/CFS with a known infectious trigger.

Project Summary​

This study investigates why some people do not return back to good health and instead remain severely ill, fatigued, unable to return to work or school due to a multitude of life-altering symptoms long after COVID-19 or other infections. Known as Long COVID and ME/CFS, these conditions are difficult to diagnose and treat.

The research examines how infection can affect energy production and the body’s response to physical stress by measuring blood flow, metabolism, and cellular health. Wearable devices and low-burden, at-home sampling will track recovery after exertion. The aim is to identify the biological factors that help explain both the wide variation in patient experience and the symptoms these conditions share.

Led by Dr. Chris Armstrong, the project brings together Australian and international collaborators across the University of Melbourne, La Trobe University, Monash University, Baker Heart and Diabetes Institute, and global partners including PrecisionLife.
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Congrats to the University of Melbourne researchers ... and if you guys would like a further $22.50 to round that peculiar sum up, so nobody needs to say almost a million , or nearly one million, I will gladly donate!!
 

Today, we are excited to share a significant step forward: the launch of CTN Lite, a new initiative that will bring us closer than ever to delivering real treatment options for ME/CFS—faster, smarter, and with patients at the center of every decision. We call it CTN Lite not because it is a lesser version of anything, but because it strips away barriers that have historically slowed trials down, leaving only the science and the patients.

They are requesting you to fill out a short survey.
 
Jaybee00 said:

Today, we are excited to share a significant step forward: the launch of CTN Lite, a new initiative that will bring us closer than ever to delivering real treatment options for ME/CFS—faster, smarter, and with patients at the center of every decision. We call it CTN Lite not because it is a lesser version of anything, but because it strips away barriers that have historically slowed trials down, leaving only the science and the patients.

They are requesting you to fill out a short survey.
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Hello! I have been away from S4ME for a while. I have tried unsuccessfully to get funding in the UK to pursue my Trialblazers idea (2 pager and 4 pager attached) which is about how to get patients en masse involved in designing clinical trials. I want to use designing a trial of one or more repurposed drugs for ME as a case-study/proof of concept. I would love to collaborate with OMF/CTN Lite if possible to get this idea off the ground. Funnily enough I was already considering travelling to California this summer to visit my daughter who will be doing an internship at Caltech in Pasadena. Not far from where OMF is based?? Is anyone from OMF/CTN Lite on here and interested in talking to me? If not, should I just write to OMF info@omf.ngo? Any advice gratefully received
 

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Jaybee00 said:
Today, we are excited to share a significant step forward: the launch of CTN Lite
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It sounds promising.

I was looking at the MitoQ trial that Mendus did recently, and the blinded crossover substudy where people were sent the unlabelled pills in the mail combined with subjective surveys was actually pretty useful. So, this idea of multiple locations and people participating even from home sounds feasible. It is potentially a way for clinicians to do the right thing, and participate in trials of the treatments that they are currently prescribing, without much effort.

I think the chances of this initiative coming up with anything that is an effective treatment in any material sense is minimal, but it could give us some evidence that a treatment is not useful, at least in the dose and treatment length tried.

I guess we'll see if the appropriate level of rigour is applied, but I hope this works. If you had a few ME/CFS specialist clinicians onboard, confirming the diagnosis and demographic information, you could really churn out studies of drugs.
 
From the news item about 'Multi-system Chronic Complex Disease'
This month, once again, I want to step outside the bounds of the research process and talk about the term we use at Open Medicine Foundation to describe the kind of condition ME/CFS and Long COVID are: multi-system chronic complex disease. I understand that this is a complicated and sometimes controversial topic, so before I get into it, let me acknowledge that complexity and say that we do our best to reflect the voices and experiences of the people we are trying to serve. I hope that you’ll be able to see that through some of what I mention in this edition of Science Wednesdays.
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What is a multi-system chronic complex disease?​

While the term multi-system chronic complex disease is perhaps overwhelming at first, each component is relatively straightforward when you break it down. Multi-system is used to indicate that diseases within this group involve multiple systems in the body (e.g., immune system, cardiovascular system, etc.). Chronic is used to show that these diseases affect people for long periods of time (e.g., six months or longer). Finally, complex is included in the term to acknowledge that the diseases can result from a combination of things (e.g., genes, environment), which makes them challenging to understand.
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​

Why use this term for ME/CFS and Long COVID?​

Many terms have been used to describe the type of disease ME/CFS and Long COVID are. Multi-system chronic complex disease seems to appropriately encompass the aspects of these conditions that are widely accepted. They are long-term diseases that affect multiple systems in the body and have thus far been challenging to understand. In addition, the term is inclusive of the people that fit the diagnostic criteria for them, including cases that develop from unknown or potentially less common triggers.

At Open Medicine Foundation, our purpose is to revolutionize the way we understand and treat multi-system chronic complex diseases, with initial focus on ME/CFS and Long COVID, by illuminating their mechanisms, accelerating effective treatments, and empowering personalized care. Read more about the research we do on our website.
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Imagine how things will go when you front up to your doctor and say 'I have a multi-system chronic complex disease'.We've explained over and over how the term 'complex' is received by many doctors and psychologists. It does not seem that OMF has listened and/or agrees.

"While the term multi-system chronic complex disease is perhaps overwhelming at first"
That sounds like 'if you don't like our term, it's just because you are currently overwhelmed, poor dear, but we are sure you will come to like it". Nope and nope.

"Finally, complex is included in the term to acknowledge that the diseases can result from a combination of things (e.g., genes, environment), which makes them challenging to understand."
Every disease is the result of a combination of things. The combination of things does not necessarily make them challenging to understand, and indeed, if there is a genetic predisposition, that can make a largely environmentally triggered disease easier to understand.

Seriously 'multi-system chronic complex diseases'?
That could cover so many things. Type 2 diabetes, even Type 1 diabetes, rheumatoid arthritis... Does OMF think this is going to make fundraising easier? Are they going to fund Type 2 diabetes now, instead of ME/CFS? Do they want to scoop up donations from people worried about hEDS and MCAS?

Perhaps people will be confused about what OMF is trying to do ('Open Medicine Foundation' doesn't scream 'supporting ME/CFS' either, and neither does the tagline 'Leading research. Delivering hope'). I'm not sure that is a good way to build a donor community. Are they embarrassed to be associated with ME/CFS? At a time when 'ME/CFS' seems to have an existential problem, it looks as though even our own charities are edging away from the name.

I remember @MelbME asked us about a name to cover ME/CFS-like diseases a while back, presumably when OMF was thinking about this name launch, and we pretty much all agreed that there is not a great name. But there are some names that are worse than others, and the one they have chosen seems pretty bad.


Oh, excellent. They have even managed to squeeze in a 'holistic approach'.

Impact on Approaching Research​

Traditionally, medical care systems and research institutes are set up to study, understand, and treat diseases via specific, singular systems. This approach is not sufficient for addressing a multi-system chronic complex disease, however. Open Medicine Foundation aims to break the traditional mold and remove research siloes via our Collaborative Approach to Systems Research model, bringing together different areas of expertise to create a more holistic approach.
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Hutan said:
From the news item about 'Multi-system Chronic Complex Disease'




Imagine how things will go when you front up to your doctor and say 'I have a multi-system chronic complex disease'.We've explained over and over how the term 'complex' is received by many doctors and psychologists. It does not seem that OMF has listened and/or agrees.

"While the term multi-system chronic complex disease is perhaps overwhelming at first"
That sounds like 'if you don't like our term, it's just because you are currently overwhelmed, poor dear, but we are sure you will come to like it". Nope and nope.

"Finally, complex is included in the term to acknowledge that the diseases can result from a combination of things (e.g., genes, environment), which makes them challenging to understand."
Every disease is the result of a combination of things. The combination of things does not necessarily make them challenging to understand, and indeed, if there is a genetic predisposition, that can make a largely environmentally triggered disease easier to understand.

Seriously 'multi-system chronic complex diseases'?
That could cover so many things. Type 2 diabetes, even Type 1 diabetes, rheumatoid arthritis... Does OMF think this is going to make fundraising easier? Are they going to fund Type 2 diabetes now, instead of ME/CFS? Do they want to scoop up donations from people worried about hEDS and MCAS?

Perhaps people will be confused about what OMF is trying to do ('Open Medicine Foundation' doesn't scream 'supporting ME/CFS' either, and neither does the tagline 'Leading research. Delivering hope'). I'm not sure that is a good way to build a donor community. Are they embarrassed to be associated with ME/CFS? At a time when 'ME/CFS' seems to have an existential problem, it looks as though even our own charities are edging away from the name.

I remember @MelbME asked us about a name to cover ME/CFS-like diseases a while back, presumably when OMF was thinking about this name launch, and we pretty much all agreed that there is not a great name. But there are some names that are worse than others, and the one they have chosen seems pretty bad.


Oh, excellent. They have even managed to squeeze in a 'holistic approach'.
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Yeah I agree certainly if we think about the audience of a GP or a medical consultant in a system that is now filled with departments or pathways where they are basically a cog trying to work out whether it is something they can diagnose or ‘offer something for’ or if it’s send to someone else and tick their boxes for referral, multi-system doesn’t get things further as a ‘do something different to what you’ve done in the past of send off to CBT’ sense.

And it doesn’t actually in those circumstances get across the ‘tangible’ bit of just how debilitated we are. That I think needs that leap of faith (do I trust they won’t think I’m mad or catastrophising) offering of brining alive the depth of how badly it affects you. And saying you are in bed for 22hrs a day they’ve been trained in alarm bells to think ‘is harmful’ not ‘gosh they must be debilitated’ as a first ‘rule out’ thing due to all the ‘a day in bed ages people ten years’ advertising in the nhs. And saying you can’t brush your teeth most days has been turned into being heard as a red flag for depression.

So I think it is helpful to work on helpful to patients messaging that can actually be of use in those contexts where there is definitely a form of language and etiquette to be thought in. And there are a few separate different reasons/things we might want them to understand (depending on if we are going there for specific help with something, needing me/cfs diagnosis, getting them to be aware of how disabled we are for x purposes, need something else looking into).

There is another downside with fuzzy imprecision - which combines with that feeling that a lot haven’t dropped this ‘diagnosis of exclusion’ one-liner not realising that we need to be way more precise on that because the way they say it makes it heard as if ‘anyone with me/cfs never has anything else wrong with them’.

And access to healthcare for the things that we have on top that can have something done about it (which msssivrly important for quality of life as anything making life harder on top is bad) or is serious is already hard due to the debilitation/energy involved with getting that explained and looked into without confusion on top.

That’s before we have to battle with ‘I know I’m always exhausted because of me/cfs but this is a different pattern’ type stuff.

I guess the question is that even if this message was said to an ideal GP and they took it on board setiously where would it get us too in an appointment?
 
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Hutan said:
Imagine how things will go when you front up to your doctor and say 'I have a multi-system chronic complex disease'.We've explained over and over how the term 'complex' is received by many doctors and psychologists. It does not seem that OMF has listened and/or agrees.
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To start, I'll be going in with a long list of what I know I don't have.
 
Hutan said:
I remember @MelbME asked us about a name to cover ME/CFS-like diseases a while back, presumably when OMF was thinking about this name launch, and we pretty much all agreed that there is not a great name. But there are some names that are worse than others, and the one they have chosen seems pretty bad.
Click to expand...

No my question wasn't to do with this. OMF has used this msCCD term for more than 5 years on their website. This new article is just describing what it means.
 
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