Can a stroke cause me/cfs?

[Artemisia]

I google it and of course get non-ME-literate answers: "Yes chronic fatigue can be a symptom post-stroke." Eye roll.

You know what I mean -- real ME/CFS with PEM. Can a stroke cause it? Or is it more likely the person is merely fatigued after a stroke?

Thanks.

 

[Artemisia]

Asking because a woman says she got ME/CFS after a stroke to her right occipital lobe. And that a particular approach cured her ME/CFS. But who knows if she really had ME/CFS??

Well, this is why our lack of a diagnostic test matters. Because there's no way to discern ME sufferers from 'chronic fatigue' / burnout sufferers. I'd like to know if this approach really healed her ME/CFS.

So I'm curious if anyone's heard of actual ME with actual PEM being caused by a stroke!

 

[Judee]

So I'm curious if anyone's heard of actual ME with actual PEM being caused by a stroke!

I don't think I ever have but idk, maybe someone else has heard of it.

 

[Treeman]

I know someone who told me she has ME/CFS after a stroke.

 

[Alvin2]

As far as we know the answer is no. What we have appears to be immune related, stroke is brain damage due to a blood clot or brain bleed.
Fatigue is a common side effect in many conditions, so its easy to mistake cause for effect.

That all said what treatment worked for her?

 

[Gijs]

I google it and of course get non-ME-literate answers: "Yes chronic fatigue can be a symptom post-stroke." Eye roll.

You know what I mean -- real ME/CFS with PEM. Can a stroke cause it? Or is it more likely the person is merely fatigued after a stroke?

Thanks.

I know 2 people who had a stroke. They had complaints as a result. Usually damage somewhere in the brain. This could be in different places. Some may speak less well and/or have one-sided paralysis, often with chronic fatigue. In my opinion this is not ME/CFS. Just like people who have chronic fatigue after cancer.
It depends on the definition and criteria you use. If you take chronic fatigue as criteria, then half the world has ME/CFS. But ME/CFS is not chronic fatigue.

 

[pamojja]

I know 2 people who had a stroke.

Had a brain MRI for finding causes for my ME/CFS symptoms. Found a pretty large stroke area in my Cerebellum, where I otherwise had no symptoms, nor could guess when it happened.

In my opinion this is not ME/CFS. Just like people who have chronic fatigue after cancer.

That's why I speak of ME/CFS 'symptoms'. Chronic fatigue alone of other chronic diseases is different.

ME diagnosis usually requires the presence of at least 3 Symptoms: Post-exertional malaise, Cognitive issues and pains. So for all practical purposes diagnosed as ME/CFS (additional to my other chronic diseases: a walking disability from PAD and chronic bronchitis from COPD - in remission now).

In my case, it might indeed have been secondary to other chronic dysfunctions, but as long as we don't know a unique cause for ME/CFS, it doesn't change the main symptoms defining the disease.

 

[Artemisia]

I'm creating a separate thread to discuss her approach in a Members Only section.

Please go to Community Longue for more info. Thanks.

 

[Artemisia]

As far as we know the answer is no. What we have appears to be immune related, stroke is brain damage due to a blood clot or brain bleed.

Maybe we get brain damage from immune dysfunction, and stroke victims get brain damage from blood clot.
And maybe if that damage is of a particular nature, both could result in ME/CFS.
maybe.

 

[Wayne]

I think any brain or head injury can cause ME/CFS. I believe my head injury / whiplash at age 15 was the initial primary contributor to my later developing ME/CFS over a period of years.

Other factors were serious vaccine reaction as a grade schooler, and multiple amalgam fillings and metal crowns that I eventually had removed. Having those all removed along with an asymptomatic root canaled tooth made a huge positive difference in my health trajectory.

 

[Artemisia]

Yes I was knocked unconscious briefly at age 5 and I've wondered if that was a factor in ME for me. (along with multiple other factors)

 

[Wayne]

Yes I was knocked unconscious briefly at age 5 and I've wondered if that was a factor in ME for me. (along with multiple other factors)

Hi @Artemisia -- If you suspect your experience at age 5 might have something to do with your ME, then you might find this information interesting (or fascinating). Below the dotted line is an email I sent to several friends after I recently discovered an amazing stroke therapy--which is also used for various kinds of head/brain injuries. The treatment described in the video runs around $10,000. Most people apparently only have to do it once, but others have done it a second time to get some additional benefits.​

​

Apparently this therapy often works for people years after their initial brain injury. I believe the success rate is around 80%. I'm given this all serious consideration, especially how I might be able to emulate what they're doing using much less expensive methods to dramatically reduce inflammation in the brain. My understanding is that the reduction of inflammation is the reason people experience such rapid and dramatic improvements.​

................................................................​

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Here's that video I mentioned to you. It starts at about the 8:30 mark, and the following 3 minutes are some of the most extraordinary video footage I've ever watched on YouTube. The woman was injected with an off label drug (Etanercept) to combat inflammation in the brain caused by her stroke, and her life changed dramatically in a matter of minutes.: This LINK will take you to the longer version of her story.​

​

There are many other videos on YouTube that you can access at this link: Institute of Neurological Recovery. Different videos highlight pain improvement, speech improvement, mobility improvement, flexibility improvement, etc. Some of the stories are still hard for me to believe even though I've been perusing them for several days now. Perhaps someday this treatment will help me improve my symptoms of post-concussion syndrome.​

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​	60 Minutes Australia "Reverse Stroke" feature, including Dr. Tobinick interview, now with captions Additional Informationrugs. com: Perispinal Etanercept for Stroke Recovery - 2023 REVIEW http://bit.ly/3KvFJPeFlorida Doctor Gives Stroke Patients a New Sh... www.youtube.com

 

[Gijs]

Had a brain MRI for finding causes for my ME/CFS symptoms. Found a pretty large stroke area in my Cerebellum, where I otherwise had no symptoms, nor could guess when it happened.



That's why I speak of ME/CFS 'symptoms'. Chronic fatigue alone of other chronic diseases is different.

ME diagnosis usually requires the presence of at least 3 Symptoms: Post-exertional malaise, Cognitive issues and pains. So for all practical purposes diagnosed as ME/CFS (additional to my other chronic diseases: a walking disability from PAD and chronic bronchitis from COPD - in remission now).

In my case, it might indeed have been secondary to other chronic dysfunctions, but as long as we don't know a unique cause for ME/CFS, it doesn't change the main symptoms defining the disease.

That is not totally correct. If you have demonstrable underlying damage or diseases that can explain complaints, then by definition you do not have ME/CFS.
I.E. HIV can also give ME/CFS symptoms.

 

[Artemisia]

That is not totally correct. If you have demonstrable underlying damage or diseases that can explain complaints, then by definition you do not have ME/CFS.
I.E. HIV can also give ME/CFS symptoms.

Interesting. So why are people with long covid who also have post exertional malaise then told they have me/cfs? Just doctors who don't know better? Are you saying that long covid people should not be diagnosed with ME?

 

[Artemisia]

Having those all removed along with an asymptomatic root canaled tooth

Hi Wayne. Thanks for the info on the stroke treatment. About the root canal, what would you do now if you had a tooth that dentist said needed to be root canaled?

It seems like there's no good solution. Pulling the tooth and leaving an empty space will lead to bone loss. And I don't like the idea of putting an implant in there. Plus $$$. Just curious what you would do now if in that situation again. Also, what did you do for that tooth after you removed the root canal?

 

[Alvin2]

Maybe we get brain damage from immune dysfunction, and stroke victims get brain damage from blood clot.
And maybe if that damage is of a particular nature, both could result in ME/CFS.
maybe.

Stroke is easily findable on an MRI, even silent strokes, while there is no MRI signature that is repeatable for ME/CFS. Though some of us will have other abnormalities, the signature is not the same. For example i have white matter lesions suggestive of MS, not stroke. And people who get remission from ME/CFS do not tend to report stroke like symptoms persisting. I have known many people who have had different kinds of stroke, the effects are very much not the same.

That said we can posit conjecture if we wish to conflate them, and we obviously have some kind of cognitive side effects, however the evidence available suggests they are not the same thing. And if we get a disease mechanism someday then we will be able to explain things better.

 

[Gijs]

Interesting. So why are people with long covid who also have post exertional malaise then told they have me/cfs? Just doctors who don't know better? Are you saying that long covid people should not be diagnosed with ME?

Very simply because ME is 'officially ' originally a post-viral fatigue syndrome. Covid is a virus right? No post stroke disease or syndrome.

 

[Rufous McKinney]

Well, there is an odd connection because certain types of strokes are considered inflammatory.

"Inflammation, which is body's immune response to harmful agents/injuries, plays a crucial role in the pathogenesis of ischemic stroke."...quote from Google

also: infections can be involved:

https://www.ahajournals.org/doi/10.1161/01.str.0000089015.51603.cc

 

[Artemisia]

Deleted because in crash and not thinking clearly

 

[Wayne]

I did a quick online search, and came up with a definition of ME which is pretty close to how I've understood it:

The term "myalgic" means muscle pain, "encephalo" refers to the brain, and "myelitis" means inflammation of the spinal cord.23 So in summary, myalgic encephalomyelitis is a condition characterized by inflammation of the brain and spinal cord, as well as muscle pain and other neurological symptoms.​

Seems to me a number of things could cause inflammation of the brain and spinal cord, and a stroke would definitely seem to be one of them. Other causes might be various kinds of infections, whether or not they're identified--especially perhaps oral infections.

Various kinds of dysfunctional immune reactions could be other causative factors. I'm guessing even various types of stressors often cause systemic inflammation, which would include the brain and nervous system. I don't think exactly identifying a specific cause disqualifies it from being ME/CFS. Just my opinion I guess.