What do we mean by a diagnosis like ME/CFS?

PEM should be the primary focus of the disease diagnosis, treatment and research.

I think understanding that is where you start. Simply because patients are at a certain level and then they are far worse, something happened that isn't typical.

Only thing better would be able to study patients just before, during and after the triggering infection/event that resulted in ME/CFS. Something that may only be possible with animal models.
 
Not a new thought obvs, but it is aggravating that the over-exertion risks functional reduction and long-term symptomatic increase as part of PEM. Otherwise it might be much easier to evaluate people who are not generally doing 6K+ daily steps and able to ride a static bike. With likely more signal to noise we could learn much more, much faster I suspect.
 
MelbME said:
Only thing better would be able to study patients just before, during and after the triggering infection/event that resulted in ME/CFS. Something that may only be possible with animal models.
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There was a pwME on reddit who was going through multiple multi-year cycles of ME/CFS with proper PEM etc and being completely normal, asymptomatic and able to train at the gym. I encouraged him to contact his nearest US researchers (not sure which state) to get baseline now and see what changes if he does revert to ME/CFS at some time. He was surprised that this wouldn't have been a common thing already evaluated, but I responded that there's an outside chance he could be an ME Rosetta stone.
 
MelbME said:
Only thing better would be able to study patients just before, during and after the triggering infection/event that resulted in ME/CFS. Something that may only be possible with animal models.
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I wonder whether, unfortunately for the patients in question, Covid offers that opportunity, and whether the data might even already exist, depending on what sort of studying you mean.

Covid seems to have been (and still is) a mass-ME/CFS event, with a substantial fraction of people who catch it getting Long Covid, and a substantial fraction of them fitting ME/CFS criteria. I don't know the percentages - 1 in 100 who get Covid? 1 in 1,000?

But maybe some research team has been studying healthy people for some reason in the way that you would want, in a big study, when one or more of those people happened to get ME/CFS from Covid, and you could get their data? Or is the way you would study them too unusual for that to be likely?

Alternatively, how many healthy people would you need to study for a year before enough of them got ME/CFS from Covid (or anything else) for you to capture the process? (This might not be feasible for all sorts of reasons but I'm just throwing it out there.)
 
SNT Gatchaman said:
There was a pwME on reddit who was going through multiple multi-year cycles of ME/CFS with proper PEM etc and being completely normal, asymptomatic and able to train at the gym. I encouraged him to contact his nearest US researchers (not sure which state) to get baseline now and see what changes if he does revert to ME/CFS at some time. He was surprised that this wouldn't have been a common thing already evaluated, but I responded that there's an outside chance he could be an ME Rosetta stone.
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Wow, that's amazing. Maybe he'd fancy moving to Melbourne.
 
Sasha said:
I wonder whether, unfortunately for the patients in question, Covid offers that opportunity, and whether the data might even already exist, depending on what sort of studying you mean.

Covid seems to have been (and still is) a mass-ME/CFS event, with a substantial fraction of people who catch it getting Long Covid, and a substantial fraction of them fitting ME/CFS criteria. I don't know the percentages - 1 in 100 who get Covid? 1 in 1,000?

But maybe some research team has been studying healthy people for some reason in the way that you would want, in a big study, when one or more of those people happened to get ME/CFS from Covid, and you could get their data? Or is the way you would study them too unusual for that to be likely?

Alternatively, how many healthy people would you need to study for a year before enough of them got ME/CFS from Covid (or anything else) for you to capture the process? (This might not be feasible for all sorts of reasons but I'm just throwing it out there.)
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There are datasets for hospitalized COVID patients, that's the best opportunity to find samples during the acute phase you could analyse and track their outcome. Someone would surely be doing this.
 
MelbME said:
There are datasets for hospitalized COVID patients, that's the best opportunity to find samples during the acute phase you could analyse and track their outcome. Someone would surely be doing this.
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Worth starting a thread on, to attract the people on the forum who might be aware of/interested in that specific thing?
 
Sasha said:
Worth starting a thread on, to attract the people on the forum who might be aware of/interested in that specific thing?
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Potentially yes.

I think there's also a backlog of severe trauma research (car accidents and burns) where they've analysed early hospital visits to determine why some recover close to baseline function relatively quickly while others take a long time or never do.

Typically the more complications that happen during a hospital visit (secondary infections, etc) the longer the recovery is even if the acute mortality risk was the same.

I think this area has some interesting parallels to consider too. How do you go from acute to chronic? And also, why do some patients have such a long protracted recovery.
 
MelbME said:
I think there's also a backlog of severe trauma research (car accidents and burns) where they've analysed early hospital visits to determine why some recover close to baseline function relatively quickly while others take a long time or never do.
Typically the more complications that happen during a hospital visit (secondary infections, etc) the longer the recovery is even if the acute mortality risk was the same.

I think this area has some interesting parallels to consider too. How do you go from acute to chronic? And also, why do some patients have such a long protracted recovery.
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This is interesting because it might not just be an area with parallels - it might be one of the right areas to look. Although most (about 2/3?) cases of ME/CFS are thought to be triggered by viruses, severe physical trauma is one of the other triggers that gets mentioned (environmental toxins being another). Do we know anything about what percentage of trauma cases would be expected to develop ME/CFS from it? Again, I wonder if those are datasets from which ME/CFS researchers could maybe pull cases.

Of course, ME/CFS cases might be difficult to identify in those studies, depending on what data about outcomes was collected, but if a study had the same sort of 'Tick here if later researchers can have access to your data' clause that DecodeME did, follow-up research might be possible to recontact trauma patients who might fit the bill for ME/CFS and can be asked more questions to determine whether they really are ME/CFS cases.
 
Sasha said:
This is interesting because it might not just be an area with parallels - it might be one of the right areas to look. Although most (about 2/3?) cases of ME/CFS are thought to be triggered by viruses, severe physical trauma is one of the other triggers that gets mentioned (environmental toxins being another). Do we know anything about what percentage of trauma cases would be expected to develop ME/CFS from it? Again, I wonder if those are datasets from which ME/CFS researchers could maybe pull cases.

Of course, ME/CFS cases might be difficult to identify in those studies, depending on what data about outcomes was collected, but if a study had the same sort of 'Tick here if later researchers can have access to your data' clause that DecodeME did, follow-up research might be possible to recontact trauma patients who might fit the bill for ME/CFS and can be asked more questions to determine whether they really are ME/CFS cases.
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Yeah potentially, we certainly use a bit of the understanding in this research to formulate some theories on ME/CFS.

The Dubbo study curves really seem to mirror Long COVID. Of those infected that had persisting symptoms beyond a month there seemed to be a phenomenon where 50% of the cohort would recover by the 3 month mark, then another 25% would be recovered at 6 months mark, then another 12.5% would be recovered at 1 year mark, then another 6% by the 2 year mark. Effectively then the 6% remaining seemed to continue long term.

Patients that had persisting symptoms at 1 month after COVID infection were said to be at about 17% of identified COVID infections in the US. 6% of 17% is like 1%. Suggesting that 1% of people with a COVID infection (delta) severe enough to get a documented test would go on to meet ME/CFS. That number sounds about right for documented ME/CFS prevalence.

To me it raises the question, were the 1% who were got ME/CFS confirmed during the acute phase or did it develop over the period of not recovering?

Does something in the long recovery precipitate ME/CFS or does the acute trigger?
 
SNT Gatchaman said:
There was a pwME on reddit who was going through multiple multi-year cycles of ME/CFS with proper PEM etc and being completely normal, asymptomatic and able to train at the gym. I encouraged him to contact his nearest US researchers (not sure which state) to get baseline now and see what changes if he does revert to ME/CFS at some time. He was surprised that this wouldn't have been a common thing already evaluated, but I responded that there's an outside chance he could be an ME Rosetta stone.
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Seriously, I would chip in good money for this guy not just to get baseline data but to be regularly and frequently monitored to catch him when the switch flips.

There are Rosetta Stone patients sometimes, such as people immune to HIV, that have allowed science to make great strides...
 
Sasha said:
Seriously, I would chip in good money for this guy not just to get baseline data but to be regularly and frequently monitored to catch him when the switch flips.
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I followed up on Reddit to encourage him to contact OMF (and also to join our conversation here). It may be that he wouldn't meet criteria when ill, as assessed, but it's worth having a look at him if willing. Judging by his recent posts he's clearly interested in the biology of what may be underlying.

@MelbME, if he responds favourably perhaps you could ask one of your US-based colleagues to follow-up with him via his Reddit account (I'll DM if so).
 
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SNT Gatchaman said:
I followed up on Reddit to encourage him to contact OMF (and also to join our conversation here). It may be that he wouldn't meet criteria when ill, as assessed, but it's worth having a look at him if willing. Judging by his recent posts he's clearly interested in the biology of what may be underlying.
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Great stuff, @SNT Gatchaman! I really hope he comes forward. Good thinking!
 
This has reminded me of a PwME who has reported repeated several full remissions, at least one of which I believe he ascribes to his approach to trying to treat his gut microbiome.

There may be more than one PwME out there who is having repeated relapses and full remissions (maybe even major remissions, if not full ones, could be informative).

I would have thought that some could be found on the Internet via social media or clever searching. Perhaps they could be recruited to a study.

Perhaps there's more than one Rosetta stone...
 
Sasha said:
There may be more than one PwME out there who is having repeated relapses and full remissions (maybe even major remissions, if not full ones, could be informative).
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I have heard of several people who had ME as children who believed they had made a full recovery only to relapse in adulthood.

My experience also was of an onset in my mid thirties associated with gradual fever ( EBV) followed by gradual improvement once I went half time at work over some four or five years to the point I believed myself fully recovered, only to relapse a couple of years later associated with a presumed episode of seasonal flue. Though I have experienced subsequent remissions they have been nowhere near to full recovery and with subsequent relapses I have experienced an overall deterioration.

I have heard of others who have had a similar pattern to mine, but until @Sasha ’s example I had not heard of anyone experiencing repeated full remissions.

Unfortunately because there has been no systematic observation and long term follow up we have no idea what numbers are involved in these various patterns.
 
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