Traumatic brain injury - similarities with and differences to ME/CFS, including PEM

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livinglighter

Senior Member (Voting Rights)
Thread split from UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

For those who want to share personal experiences on this topic less publicly there is a thread in the members only area here.
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adambeyoncelowe said:
Finally, I'm undecided about how unique PEM is. I think the problem is that lots of things can look like PEM, but that may not be the same thing.
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I used to think it was unique. But I am starting to think it's only the term PEM that is different. PEM could be the same constellation of symptoms that everyone with exertion intolerance suffers when they exceed their energy/exertion threshold.





Dr Gabrielle Murphy's fatigue clinic has put it in writing that ME/CFS causes exertion intolerance rather than PEM.
 
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livinglighter said:
I used to think it was unique. But I am starting to think it's only the term PEM that is different. PEM could be the same constellation of symptoms that everyone with exertion intolerance suffers when they exceed their energy/exertion threshold.





Dr Gabrielle Murphy's fatigue clinic has put it in writing that ME/CFS causes exertion intolerance rather than PEM.
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I would need to see how these people describe their experiences of PEM to know if it's the same thing. I don't think exertion intolerance is necessarily the same as PEM. And, as we know, people use terminology loosely, or without having the same understanding as others.

That said, it wouldn't surprise me if head injuries caused very similar symptomatology to ME. It all revolves around the brain.

It may be that TBI or concussion can lead to (some form of) ME, as physical trauma has been labelled a trigger for some. But we need to know if PEM after TBI or concussion is common or uncommon. Could the person have TBI and ME together, for example?

There may be several overlapping illnesses, such as GWI or chronic Lyme disease. Or it may be that these symptoms only resemble ME, but there are different processes going on leading to (apparently) similar results.
 
Looking through that thread above, I saw this tweet from Karen at Physios for ME:


She notices a big difference between these groups of patients. So it may just be people using PEM to mean PEF or something else. But I'd be really curious to learn more, as understanding one might aid in understanding the other.
 
adambeyoncelowe said:
It may be that TBI or concussion can lead to (some form of) ME, as physical trauma has been labelled a trigger for some. But we need to know if PEM after TBI or concussion is common or uncommon. Could the person have TBI and ME together, for example?
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I agree that it is highly plausible that 'post-concussion syndrome' is ME precipitated by relatively limited head injury.

Exertion intolerance could be used to apply to respiratory or cardiac failure but it has acquired a 'term of art' status such that it makes sense to restrict it to the sort of intolerance seen in ME. To me this is intolerance as manifest by PEM. If it is not manifest by PEM then I am not sure the term has much value. The RFH seem to be muddled.
 
These tweets may also be informative:


Here it seems there's a thing called metabolic crisis or neurometabolic cascade in TBI and PCS. It may be this that people are calling PEM, and I'd need to understand what it is before I said they were the same thing.

Dr Nicola Clague-Baker suggests there may be other differences too:


I'm not sure how defining viral reactivation is, though.
 
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What's the view here on the value of study that searches for PEM in other syndromes and illnesses?

It would clarify how common PEM is in other illnesses and syndromes.
If it occurs in other illnesses and syndromes, it might help us understand what PEM is by looking at what all these illnesses have in common.

For example if it occurs only in illnesses with significant neurological components then we know PEM must be neurological in origin.
 
strategist said:
What's the view here on the value of study that searches for PEM in other syndromes and illnesses?

It would clarify how common PEM is in other illnesses and syndromes.
If it occurs in other illnesses and syndromes, it might help us understand what PEM is by looking at what all these illnesses have in common.

For example if it occurs only in illnesses with significant neurological components then we know PEM must be neurological in origin.
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I think it's a good idea. But the right people need to lead it and ask the right questions (as always). If PEM is measured too loosely, it will just conflate things.
 
I think clear differentiation on who has what pwME call PEM, and who doesn't would require more than just asking people to fill in questionnaires or even to describe their experiences following activity. It would need day by day monitoring over several weeks or months of groups of people with ME, post concussion, and other conditions that have problems with reactions after activity, with monitoring of symptoms, activity levels, cognitive testing and some relevant biological testing. The 2 day CPET might be a good starting point, but not sufficient to give a clear picture, I think.
 
KarenPhysioCoUk

@karenphysiocouk
"fatigue" is common in stroke, TBI, MS etc. However, I am able to progressively train all these patients without harm, some intensively so. Fatigue can be common after a physio session but progress is generally seen. IMO this can't be PEM
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Put simply I think we have an inability to get fitter at will.

To me that is a defining feature of ME, and PEM is the reason why we are unable to progress fitness.

So, instead of our bodies repairing after exertion to a stronger state (which is the normal process of getting fitter), our bodies fail to recover properly, and further exertion can lead to progressive damage, meaning that attempting to get fitter often results in the exact opposite occurring.

While we don’t fully understand the mechanism of PEM, and while we have difficulty describing PEM in a way that cannot be misinterpreted as something else, it seems the consequences of PEM are what are really defining. In a nutshell PEM means we cannot get fitter at will.
 
Keela Too said:
Put simply I think we have an inability to get fitter at will.

To me that is a defining feature of ME, and PEM is the reason why we are unable to progress fitness.

So, instead of our bodies repairing after exertion to a stronger state (which is the normal process of getting fitter), our bodies fail to recover properly, and further exertion can lead to progressive damage, meaning that attempting to get fitter often results in the exact opposite occurring.

While we don’t fully understand the mechanism of PEM, and while we have difficulty describing PEM in a way that cannot be misinterpreted as something else, it seems the consequences of PEM are what are really defining. In a nutshell PEM means we cannot get fitter at will.
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I think this is accurate, too. I have seen many pwME say this.
 
Keela Too said:
Put simply I think we have an inability to get fitter at will.

To me that is a defining feature of ME, and PEM is the reason why we are unable to progress fitness.
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I think that PEM in ME is a permanent feature, it is always there, always in play.

What is variable is the degree to which it gets expressed, within a patient, and between patients. It is the difference between mild and severe.

Learning how to minimise it, to the extent it can be, is pretty much all we have for now.
 
Sean said:
I think that PEM in ME is a permanent feature, it is always there, always in play.

What is variable is the degree to which it gets expressed, within a patient, and between patients. It is the difference between mild and severe.

Learning how to minimise it, to the extent it can be, is pretty much all we have for now.
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Agree.
And PEM sucks at whatever level it is set at.
It allows no negotiation, just constant appeasement to it’s whims. :(
 
adambeyoncelowe said:
Here it seems there's a thing called metabolic crisis or neurometabolic cascade in TBI and PCS.
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There is a geezer called Giza who thinks there is but the literature is mostly limited to reviews by him or sports journals. It sounds like pseudo stuff to me.

What Nicola C-B say is interesting. I agree that viral reactivation is speculative. On the other hand it may be at least that in PEM symptoms tend to reflect the trigger in some way.
 
Thanks for pulling up more information @adambeyoncelowe it’s interesting stuff.

Personally, I am wondering if I have been misdiagnosed or if a diagnosis is missing, as I have too many brain injury hallmark symptoms that no one with ME/CFS I’m aware of shares with me.

My brain related symptoms outweigh my physical impairments and I have suffered brief ‘concussion-like’ states. My first noticeable incident was at work and my senior manager commented my symptoms indicated a viral infection. I thought he was very far from correct, as I never understood a virus being able to cause such a profound head related experience. My health rapidly plummeted from there on in the same fashion described in ABI and I’ve never been able to return to work.

I’ll see where things lead to and I agree it will be interesting to see a study including all conditions with PEM.
 
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strategist said:
What's the view here on the value of study that searches for PEM in other syndromes and illnesses?

It would clarify how common PEM is in other illnesses and syndromes.
If it occurs in other illnesses and syndromes, it might help us understand what PEM is by looking at what all these illnesses have in common.

For example if it occurs only in illnesses with significant neurological components then we know PEM must be neurological in origin.
Click to expand...


I seem to recall that one of Maureen Hanson's metabolic papers (the last one her team published?) was reviewed by @Simon M and Simon pointed out that Hanson's group were basically saying that:
  • they didn't find much (in that metabolic study); and
  • if we were doing another, metabolic, study then they'd stress the participants --- exercise or whatever.
So perhaps a study of those with PEM, including ME/CFS and those with PEM from post trauma concussion, +++, could be a way to look for a common (PEM) pathway.
 
Jonathan Edwards said:
There is a geezer called Giza who thinks there is but the literature is mostly limited to reviews by him or sports journals. It sounds like pseudo stuff to me.

What Nicola C-B say is interesting. I agree that viral reactivation is speculative. On the other hand it may be at least that in PEM symptoms tend to reflect the trigger in some way.
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And I think that might be true, too. It's certainly plausible that PEM is like a resurgence of the trigger. Many people (with post-viral ME) describe PEM as being like the viral episode that triggered their illness.

So this Giza geezer (did he build a pyramid or does he bathe in hot water springs?) seems to have a pet theory? Sounds familiar...
livinglighter said:
Perhaps she also sees a difference because those patient groups are likely on symptom stabilising medication.
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This could also be true. But a simple way to test that is to give pwME the same drugs. If we can then improve activity in the same way, then we might conclude that similar things are going on.

If they make no difference, then there would seem to be something different going on to cause our PEM versus theirs, or it may not be the same thing after all. (In a clinical trial of course. This isn't a suggestion to go ahead and try it yourself.)
 
adambeyoncelowe said:
This could also be true. But a simple way to test that is to give pwME the same drugs. If we can then improve activity in the same way, then we might conclude that similar things are going on.

If they make no difference, then there would seem to be something different going on to cause our PEM versus theirs, or it may not be the same thing after all. (In a clinical trial of course. This isn't a suggestion to go ahead and try it yourself.)
Click to expand...

The bottom line is we need more studies......
 
I also want to suggest keeping an eye on these similar-appearing brain-related conditions and possessing some insight into Brain injury, because the non-Traumatic invisible kind (nTBI) that is triggered by injuries to the brain not caused by an external physical force to the head are at threat of being labelled FND in some cases. I've been coming across a few medical-related websites insinuating conditions such as ME/CFS and Fibromyalgia are FND.

https://rarediseases.org/rare-diseases/fnd/
 
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