Open Medicine Foundation (OMF)

[Jonathan Edwards]

So the MELOPIS brain imaging study is not interesting?

It is interesting for what it shows rather than for what someone wanted it to show.

 

[Casterofspells]

It is interesting for what it shows rather than for what someone wanted it to show.

Agree that neuroinflammation term won’t get us anywhere, especially if we then end up comparing to diseases like MS where the picture is so different. Still that tracer is an interesting signal. How would one better and more carefully interpret and name that finding suggestive of activated astrocytes in those regions then?

 

[Jonathan Edwards]

How would one better and more carefully interpret and name that finding suggestive of activated astrocytes in those regions then?

Suggestive of activated astrocytes sounds fine to me - if that is a valid interpretation.

 

[wigglethemouse]

A quick search told me that cerebral blood flow is affected by astrocytes......... that would be interesting if the astrocyte finding still stands up when they publish.

 

[Jonathan Edwards]

My guess is that if astrocytes affect blood flow it is likely to be in terms of shifts over tens of seconds or a few minutes as thoughts move around. PET probably picks up static astrocyte behavior - how they are over many minutes or hours. I doubt the two have much to do with each other.

 

[Sean]

people with ME/CFS are recruiting more brain regions to get a task done

I think this fits very well with the general reported experience of patients, including my own, and has high research potential.

 

[forestglip]

From an OMF newsletter:

We recently shared some preliminary results from our CTN Lite Patient & Caregiver Survey, including that our community wants us to prioritize post-exertional symptom worsening (PEM/PESE/PENE) and mitochondrial dysfunction for treatment research. In case you missed it and want to hear more about the survey results, you can check out the webinar here.

We heard your priorities, so it’s time for us to do our due diligence. In order to trial treatments on post-exertional symptom worsening and crashes and properly measure success of those treatments, we need to better understand what those terms really mean to the people who experience them.

Live Event
Open Medicine Foundation and Renegade Research are hosting a live session on July 15 at 5pm ET focused on crashes and post-exertional symptom worsening (PEM/PESE/PENE) in ME/CFS. The session will bring together patients and researchers, with the goal of addressing the following questions:

Definition and presentation: What are crashes vs post-exertional symptom worsening? What are the different experiences of them? What are the different triggers?

Measurement in research: How do we measure crashes? How do we measure post-exertional symptom worsening?

The CTN Lite Patient & Caregiver Survey, webinars like this one, and community engagement still to come are all directly shaping our treatment trial priorities and design. Help us translate the patient voice into trial-ready information by participating in the conversation.

Register for the Webinar

 

[ChronicallyOverIt]

What’s PESE/PENE, do we need more terms? I’m pretty ingrained and haven’t heard of this before?

 

[forestglip]

PESE/PENE

Post-exertional symptom exacerbation/post-exertional neuroimmune exhaustion.

Here's a page that uses all three terms interchangeably: https://longcovid.physio/post-exertional-symptom-exacerbation

Post-exertional symptom exacerbation (PESE) may also be called post-exertional malaise (PEM) or post-exertional neuroimmune exhaustion (PENE).

 

[Jonathan Edwards]

Although this is of course nonsense because post-exertional malaise (and post-exertional symptom exacerbation) is a symptom pattern that is an effect of some unknown process. Post-exertional neuroimmune exhaustion would have to be a process that might lead to PEM. This is where the folklore and the confusion start.

 

[ChronicallyOverIt]

Here we go again. I guess adding these to make it sound scary provides validation to patients, but personally this frustrates me as patient. I don’t need my care provider to be aware of more non-sensical terms. They already barely acknowledge my condition. Making up processes before replicated data is how we got to the ME name in the first place and look how confusing that is! How does one even tell if they are in PENE…. There’s barely even any signal in the cutting edge research on nueroimmune processes, let alone replicated. OMF should really think about the implications of validating these terms. I feel like we should be able to learn from past mistakes of calling it ME, that term still provides confusion to this day.

One more thing exhaustion as a term is a non sequitur. What does that even mean?

 

[Mij]

I told my GP I had post-exertional exhaustion WITH an explanation. I left out the "neuroimmune' part.

 

[Yann04]

Here we go again. I guess adding these to make it sound scary provides validation to patients, but personally this frustrates me as patient. I don’t need my care provider to be aware of more non-sensical terms. They already barely acknowledge my condition. Making up processes before replicated data is how we got to the ME name in the first place and look how confusing that is! How does one even tell if they are in PENE…. There’s barely even any signal in the cutting edge research on nueroimmune processes, let alone replicated. OMF should really think about the implications of validating these terms. I feel like we should be able to learn from past mistakes of calling it ME, that term still provides confusion to this day.

One more thing exhaustion as a term is a non sequitur. What does that even mean?

PENE comes from the 2011 International Consensus Criteria. Which was responding to what was seen as overly broad and not strict enough criteria diluting already small sample sizes and thus meaning that ME/CFS research wasn’t finding anything. That criteria is however sort of tainted because it makes a load of biological assumptions and adds unwarranted biological language (such as PENE) which is a shame.

As for PESE. I’m not aware about its origins. I believe it was popularised among Post-COVID communities. I definitely don’t like it as a replacement for PEM, because in my view PEM isn’t just symptom exacerbation but worsening of capacity (and in my experience threshold though I know many people here don’t like the threshold simplification/model).

But I actually think PESE can be sort of valuable as a term that refers only to the symptom exacerbation of PEM, to distinguish it from the exacerbation of disability, because in my experience those two things follow different severities and time courses so perhaps conceptualising them as siblings rather than the same thing is helpful. But yeah the current state of how PESE is used is harmful I think.

 

[Jonathan Edwards]

But I actually think PESE can be sort of valuable as a term that refers only to the symptom exacerbation of PEM, to distinguish it from the exacerbation of disability,

Sounds reasonable.

I guess we don't want to go near Post Exertional Worsening Capacity.
It wouldn't go down well

 

[Midnattsol]

Here we go again. I guess adding these to make it sound scary provides validation to patients, but personally this frustrates me as patient.

I just wanted to chime in that finding up new words and phrases is used by researchers/clinicians to validate a thing also within their own group, it’s not just for patients.

I also think it’s unnecessary to claim something scary give patients validation, that’s making us sound more simple than we are. It might not be the scary part that makes it valid but being given an explanation. Especially for new patients with no experience of medical gaslighting or the lack of knowledge about ME/CFS amongst healthcare staff, why wouldn’t you think what is said to you is correct.

 

[Hutan]

From an OMF newsletter:

I'm having trouble registering for this seminar by OMF and Renegade Research on PEM, 5 pm 15 July. Has anyone managed to register?

 

[Hutan]

I contacted OMF and they helped me. I caught the last bit of the seminar.

Open Medicine Foundation and Renegade Research are hosting a live session on July 15 at 5pm ET focused on crashes and post-exertional symptom worsening (PEM/PESE/PENE) in ME/CFS. The session will bring together patients and researchers, with the goal of addressing the following questions:

There seems to be a close association between OMF and Renegade Research. Participants were Rob Phair, Chris Armstrong @MelbME, two people from Renegade Research and the OMF facilitator.

My impression was that the view that ATP is the cause of PEM was promoted.

 

[Chandelier]

I'm having trouble registering for this seminar by OMF and Renegade Research on PEM, 5 pm 15 July. Has anyone managed to register?

Now available on YouTube:


Defining and Measuring PEM vs “Crashes” in ME/CFS: Patient Experience, Triggers, and Research Tools

Panelists include:
Todd Davenport
Rob Phair
Chris Armstrong
Isabel Burnett
Tess Falor

00:00 Welcome and Housekeeping
01:39 Panel Introductions
03:38 Why This Discussion Matters
06:40 Defining PEM and PESE
10:54 What Patients Mean by Crash
15:12 Time Course and Staging
24:10 Triggers Beyond Physical Exertion
39:00 Research Challenges and Measures
45:00 Cognitive PEM Triggers
47:11 Thresholds and Daily Stressors
48:49 Severity and Delay Effects
52:00 Personalized Function Scales
55:19 Pacing Masks PEM Data
58:35 Wearables and Symptom Diaries
01:04:01 Physiology During PEM
01:06:35 Lactate and Energy Pathways
01:18:05 Research Takeaways and Wrap-Up

Blurb:
Dr. Danielle Meadows (Open Medicine Foundation) co-hosts a live discussion with Renegade Research and ME/CFS researchers and clinicians on how patients and studies define and distinguish post-exertional symptom exacerbation/malaise (PESE/PEM/PENE) versus “crashes,” prompted by OMF’s CTN Lite survey prioritizing post-exertional symptom worsening for decentralized clinical trials.
Panelists review research definitions (Canadian and International Consensus Criteria) and patient-reported uses of “crash,” including sudden, rapid shutdowns versus prolonged or more severe PEM, and discuss timing, phases, and baseline shifts.
The group highlights diverse triggers (physical, cognitive, emotional, sensory, chemical/immune) and heterogeneity in symptoms, especially across severity levels.
They explore research implications and measurement challenges, including pacing and rolling PEM, questionnaires and function scales (including individualized activities), wearables and device-use tracking, CPET and other provocation methods, caregiver-assisted sampling, and potential physiological markers such as lactate and metabolic changes.

---

So far two comments on r/cfs, both critical.

some people with other diseases use the word crash to describe such a thing but most people I know use "crash" to mean PEM that is lasting a really really long time.

the definition described by rob hair seems.....over-broad. a worsening, yes, but saying every single symptom gets worse is definitely not true

the way we evaluate improvements in PEM is the way we evaluate improvements in any other subjective experience: validated surveys (at least until we have physiological measurements that actually correlate to a severity of PEM in some way)

I'm getting a little wary of Renegade Research, though, with how they're partnering with Joshua Leisk.... and some of the decisions they're making on what to look into. I'm not convinced what they're studying is going to be a worthwhile use of anyone's time or energy- like with their new device program. I was part of one of the early long covid vielight trials. It didn't do anything and I'd wondered if I'd gotten the sham, but when I was unblinded I had the real one. I've had similarly useless results when trying tVNS on my own.

This webinar was not helpful. Some people really like to push certain ideas even when they are not well established in the patient community.

Trying to separate a crash from PEM is one of those ideas. I use the terms interchangeably, although PEM that lasts a long time is always 'a crash' for me. I know many other patients do the same.

 

[bobbler]

Fb reel: https://www.facebook.com/share/r/1Byc2ZRQFV/

Chris Armstrong and Jamie Elliot talking about MELOPIS research - there is a link in the comment that goes over the video but annoyingly on my phone I can’t open that because tapping on it just closes that description back down (might be good to have link to it in the top of their comments too).

If anyone can access it before I find a way then please do paste the link here

The link to the full conversation on Youtube is here (kindly sent to me by PM ):

It looks interesting from a methodology point of view as they note how controls vs patients have energy more directed towards a task vs energy used elsewhere too (and of course then there’s that interpretation question about whether that’s symptoms eg cos a patient is dealing with being in pain and trying to keep body upright etc too)

It is reasonably short as a video giving some idea of interim findings, but also noting that recruitment is still open for those who can get to Melbourne etc at the end too.

EDIT: I've only got a small way in but pausing to say that I really like the pace of speaking and the position and flow of the subtitles. I know that this might be individual for different people, so not speaking for all, but when they are good I find subtitles useful with the sound on too for various reasons it seems to help me.

And it is great not to have them over any uneven background, or anything that feels like they aren't smooth and are jerky or half-doing a word (common if its auto-translate eg on live tv) and this feels like a gentle roll, but in a good way. Oh and they are big enough text without taking up too much screen.