Why ME/CFS is not just 'a hypersensitive nervous system issue' (short explainer)

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Explained: Why ME/CFS is Not Just a ‘Hypersensitive Nervous System Issue’
Some ME/CFS recovery coaches make the claim that Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis, is simply a ‘hypersensitive nervous system issue’. That is to say, that the only abnormality in ME/CFS is supposedly a dysregulation of the autonomic nervous system and a hyperactivation of the fight, flight and freeze responses. As a result, they teach that there is nothing else physiologically or biomedically wrong with the body and that all symptoms are simply a manifestation of a hypersensitive nervous system.
While there can be value to brain-retraining, the idea that ME/CFS only involves a hypersensitive nervous system dysfunction is both dangerous and plain wrong. Painstaking research has uncovered a range of serious biomedical problems in ME/CFS, including: microclots (microscopic clots which condense the blood, make it darker and sluggish and limit blood perfusion throughout the body); low blood volume (having up to 1-1.5 litres blood than the physiological norm); autoimmunity against vascular receptors which reduces blood flow to the muscles and brain. Harvard University even found that ME/CFS patients have a unique cardiac abnormality called ‘preload failure’ whereby blood-flow return to the heart is impaired. In addition, cellular dysregulations such as high intracellular sodium and cellular calcium overload have also been identified, causing profound muscle weakness. If all of those aren’t bad enough, it has even been found that muscles fibres actually become necrotic - i.e. they actually die - during post-exertional malaise. But there have countless other findings besides as even a cursory glance through the over 10,000 papers into ME/CFS will show you.
It is essential to understand that all of the physical abnormalities I have just described are considered by leading researchers to be central to the nature of ME/CFS. In other words, these are not ‘separate health problems’ but are ratherpart of the vicious cycles that create and maintain the illness. In my view, one of the best and most convincing hypotheses of ME/CFS is to be found in Wirth & Scheibenbogen’s Unifying Hypothesis paper. If you really want to understand me/cfs, do yourself a favour and read that paper.
All this is not to say that brain retraining might not be helpful in improving quality of life or even to recover. But if you are ill with ME/CFS or Post-Covid ME/CFS, it is important that you know the big picture about your illness so that you can understand what is happening to you and make informed treatment choices. And perhaps consider not spending thousands of dollars of your hard-earned money to one of these recovery coaches just so as to be told that there is nothing wrong with your body.This video is also relevant for Long Covid and POTS.
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My name is Patrick Ussher and I am an ME/CFS patient. I have written a book on POTS and also about thirst in ME/CFS, POTS and Long Covid.
Personal website (including details about consultations service): www.patrickussher.com
My (free) book on thirst in ME/CFS, POTS, LC: www.themythofprimarypolydipsia.com
NB: This video is for educational purposes only - please always consult a doctor about any health issues or changes.
Affiliates:
Normalyte (most helpful supplement I've ever found for ME/CFS) - affiliate link: normalyte.com/?ref=ftveadx3
DNRS Brain retraining (helped me recover from my first round of illness and still very much recommended) affiliate link - retrainingthebrain.com/?wpam_...
Links mentioned in this video:
Pretorius, microclots study - www.mdpi.com/1424-8247/15/8/931
Visser, Van Campen blood volume study -pubmed.ncbi.nlm.nih.gov/30525...
Scheibenbogen, Wirth, hypothesis paper - www.sciencedirect.com/science...
autoantibodies correlate with symptom severity - pubmed.ncbi.nlm.nih.gov/34441...
Harvard preload failure - www.omf.ngo/heart-preload-fai...
death of muscle fibres in PEM - www.nature.com/articles/s4146...
high intracellular sodium - www.ncbi.nlm.nih.gov/pmc/arti...
calcium overload - pubmed.ncbi.nlm.nih.gov/33882...

Опубликовано:

15 июн 2024

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Комментарии : 14

@mike7920 18 дней назад

Brilliant summary! Thank you

@me-cfs-strategiesforhealing 17 дней назад

Glad it was helpful!

@Dana_Robie 17 дней назад

My understanding is that both things can be true - the core issue can lie in a subconscious hyper aroused nervous system … that then results in very real physical downstream repercussions, many of which you touched upon. My daughter recovered from severe POTS and a host of other issues (IBS, IC, hair loss, beginning stages of MCS, etc) when she was introduced to and fully embraced the hyper aroused limbic system explanation and slowly worked to retrain her brain. While she is still prone to moderate POTS, IC and other symptoms especially when her body is stressed by things like heat and other factors, it is no where near the debilitating results she once had (bed bound). She now eats what she wants, exercises hard every day, and is leading a normal life. It did not happen overnight, but it’s hard to imagine where she would be today without having made the BRAIN-mind-body connection. That said, I fully agree that any coach who suggests that the physical symptoms are “not real” feels misinformed to me. (PS - a key step for my daughter was breaking her identity away from her illness, while still acknowledging the pain and suffering she experienced through years of very real illness. Again, our experience is that both things can be true.)

@me-cfs-strategiesforhealing 17 дней назад

Hi Dana, that's wonderful that your daughter has made such progress. I agree that the hypersensitive ANS is the root cause. It then leads to other secondary dysfunctions which then, in turn, feed back into the ANS dysfunction by stressing the brain further. The problem is the claim that the hypersensitive nervous system is the 'only' issue. That's clearly wrong and misleading.

@lessons9745 18 дней назад

Brain retraining really helped me with a lot of anxiety but it no where near cured me !!

@me-cfs-strategiesforhealing 17 дней назад

I find it helps with anxiety too. And I find it can reduce a lot of nervous system symptoms (not all). But I haven't found it help me to change what's going on in the rest of my body, eg PEM. Not yet anyway.

@majahorvat7294 17 дней назад

@@me-cfs-strategiesforhealing I have also tried brain re-training (DNRS) and it did help my Mold issues, but it hasn't helped for the CFS. Now I am doing increasing activity slowly and I went from almost bed bound to be able to do so many things, like cooking, walking the dog, doing a few minutes of exercise, socializing. I went with Toby and after that I went with one of Miguel's people.

@me-cfs-strategiesforhealing 17 дней назад

That's super - hope you can continue to improve!

@christopherhealy2378 18 дней назад

Have you been assessed for CCI or tethered cord ?

@me-cfs-strategiesforhealing 17 дней назад

I have not, no, but I'd like to. Not sure what my options are in Europe. Dr. Gilete in Spain, I think.

@majahorvat7294 17 дней назад

I agree that there are real physical issues with the CFS. My experience is that the only thing that worked for me getting better is slowly increasing my activity levels (5 percent). I went from bed bound to being pretty functional (I am still increasing activities) and it did not involve addressing anything else but the nervous system and eating paleo. Also having the belief that I don't need anything else but my own strong mindset is empowering. You can heal yourself, you don't any treatment from any doctor. There are so many people doing Miguel's recovery program doing the same thing. Believe me I have tried many other things and nothing else worked.

@me-cfs-strategiesforhealing 17 дней назад

I'm very glad you are doing so much better. Yes, many have improved with brain retraining, pacing and slowly increasing activity. It's been of help to me too, even though it hasn't yet got me over the line, and I have needed some other treatments to make essential progress (HELP apheresis in particular). But the claim that is often made that 'there is nothing wrong with you but a hypersensitive nervous system' and 'brain retraining can help you to recover' are two very different claims. I think they are sometimes confused.

@majahorvat7294 17 дней назад

@@me-cfs-strategiesforhealing Thanks, after 2 decades of this illness I am stoked that something started working. It is a very confusing condition indeed. It is great that HELP apheresis has helped you. I think they are saying that there is nothing else wrong but the nervous system, because they want to encourage you to do the work (increase activity and react well to symptoms). They want to empower you and create the belief that you can do this on your own and that you don't need to wait for the cure. But the claim that it is only the nervous system isn't true.

@me-cfs-strategiesforhealing 15 дней назад

I'm so glad the brain retraining is helpful for you and after so long unwell. Perhaps some of the coaches do it for that reason though unfortunately my feeling is that many of them just don't know about the research. Hope to hear that you've made even more progress one day.