BBC: How Long Concussion could offer new insights into Long Covid

Link to article
By David Cox

 

Also:

 

The bits quoted seem pretty half baked.

The brain stem might well be relevant but all the stuff about not connecting to brain and virus reactivation and blood brain barrier and mitochondria and... seems just a minestrone of all the usual.

 

I've described some of how I feel as concussed for a long time, and it makes sense to me. To a point, but still. And that it makes more sense that this is about the old brain. I'm not sold on the role of psychedelics, but if I get the chance I would try micro-dosing mushrooms.

The big problem here is that medicine doesn't do much better at treating concussions than they do with us. It's time that heals, and if it doesn't, you're pretty much boned. So this isn't really helpful to us, unfortunately. Other than possibly some future insight happening only because someone looked at the right place.

 

I think with every related condition, it's a big win for everyone because it's, effectively, more scientists working on the problem for both conditions. And once it's known they're related, the two groups can collaborate and share research.

Plus the combined voices of patients are louder if they're fighting for the same thing.

 

Yeah, reminded me of what we were talking about with eye tracking: https://www.s4me.info/threads/idea-...o-track-fatigue-accurately.38583/#post-536370

I might try to see if I can find the exact technique they used to see if it can be done without special equipment.

 

The approach to treating concussions and post-concussion symptoms may differ depending on whether a brain injury specialist is part of the patient's care team. Typically, TBI neurologists specialised in concussions provide guidance on rehabilitation when symptoms persist over time.

As far as I’m aware, exercise as a treatment for concussion is an area of research that has its roots in sports injury and medicine. This field of research may be one of the largest in the study of concussions and traumatic brain injuries. My observations from reading literature, is that Graded Exercise Therapy (GET) is a diluted form of Graded Exercise / Graded Exercise Testing (GXT) used to determine VO2max, which has also garnered attention in Long COVID research.

It’s possible that the opposition to long-term rest advice is another complex situation involving shareholders with financial interests. However, it is noteworthy that brain injury neurology specialists are actively engaged in research and clinical care in this area, which may offer better prospects for individuals with long/post-concussion issues as they should be viewed as the experts.

I also find it interesting that while some proponents argue that post-concussion syndrome is functional neurological disorder (FND), TBI neurology recognises the distinction between functional symptoms caused by psychological issues and functional cognitive problems following brain injury (organic). In this context, collaborative efforts between long/post-concussion specialists and ME & LC could be beneficial.

 

I don't know why he had to resort to mitochondria and brain stem when there is much more obvious explanation of neuro-immune activation in TBI. The mitochondrial or brain stem injury does not explain PEM or the sex difference. Brain stem could be involved in CCI or intracranial hypertension, but it could be further upstream event that eventually precipitates in ME/CFS-like symptoms via neuro-immune activation.

 

My daughter has PCS after a head injury after a bike fall. She’s lived with it for ten years now and will have it for the rest of her life - after two years we were told it would be permanent.

We’ve often noted how similar her issues are to mine in every way except PEM - the cognitive effects of her injury are almost identical apart from my memory which is better. She doesn’t make new short term memories if she’s tired or stressed which isn’t something I have a problem with, but apart from that, the executive dysfunction, issues with concentration, sensory overload (hers is MUCH worse than mine to the point where she lives in Loop earbuds and has to wear sunglasses most of the time outside even on dull days and needs a hat with a brim on bright ones. She keeps the curtains pulled a lot in her home because she struggles with the light levels and it hurts her brain. She can’t deal with visual processing of fast movement, like me, she’s easily exhausted by people talking, like me, she stuff has word finding difficulties, like me, and she has drastic and sudden drops in energy, like me. She also has neuro-fatigue, which is apparently very common in PCS, where she will be very tired after physical work that she should be able to manage given her level of fitness and she needs time, often days, to recover although it’s simple fatigue, not PEM. It’s uncanny how similar we are.

PCS has absolutely disabled her to the point where she’ll likely never work for a living, although she has a two day a week volunteer position at a local stables owned by a friend. She can only manage even that with a day off in between and the owner is thankfully completely understanding about the effects of her TBI and keeps a careful eye on her to make sure she doesn’t overdo things. But it’s been a devastating cost to her life from what initially seemed a relatively minor concussion. I’m just so thankful she was wearing a helmet when she hit the ground, it could have been so, so much worse.

Edited for spelling. Again.

 

Just curious why you say it's not PEM. Seems like taking days to recover from normal exertion sounds pretty similar.

 

The way I understand is:

PEM is worsening of symptoms and illness after activity. Fatigue lasting longer than normal after activity might be a part of PEM, but it is not enough to constitute of PEM itself.

 

So I guess in @Blueskytoo's daughter's case, if her cognitive issues also increase that'd be PEM?

And what if it's just fatigue, but it's delayed? Isn't delay pretty unique to PEM?

Edit: The only "symptoms" required for ME/CFS by IOM criteria are fatigue, unrefreshing sleep, and either cognitive dysfunction or orthostatic intolerance. So it should just take an unusually intense increase in fatigue, sleep issues, and one of the other two to constitute PEM.

 

She doesn’t have any sort of immune system response to it, unlike me. She’s just knackered. She doesn’t have ME, she doesn’t have the aches and pains, the immune type responses or any type of delay in her fatigue levels. She’s really not ill, it’s much more that she’s worked really hard at something, either physically or mentally and just needs a lot of time to recover from the effort. Like “normal” people do, it’s just she’s affected by it at a much lower level of effort, if that makes sense

 

@forestglip I was more thinking vis à vis the ICC, which requires.

 

Hmm, well I don't think aches, pains, obvious immune issues, or delay in fatigue are required for ME. I certainly don't have the first three.

 

It’s not delayed, and she doesn’t have any other symptoms apart from the ones you’d normally expect from someone who had over-exerted themselves either physically or mentally. It’s just that the levels of exertion required to provoke that response are lower than they should be. Her brain gets tired really fast, much faster than it should so it takes her longer to recover from normal levels of exertion, but the tiredness does definitely exacerbate her cognitive symptoms more than it should.