Defective energy metabolism in ME/CFS

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Күн бұрын

RME (The Swedish ME-Association) holds a yearly conference, inviting among others, scientist from all over the world to talk about their recent finding.
In this video Professor Karl Johan Tronstad, Universitetet i Bergen, talks about the defective energy metabolism in ME/CFS.

Пікірлер: 37

@cherylallis2458 Жыл бұрын

Thank you for all of your hard work on trying to figure out what has gone wrong in our bodies! Hopefully this research will lead to ways to better support us, (people with ME/CFS) and help us to get our lives back!

@TheValiantZero 5 ай бұрын

Good work! We need to find treatment for ME/CFS as quickly as possible!

@linden5165 Жыл бұрын

Very much in line with my experience of ME/CFS - it felt like an energy metabolism issue. Minor physical effort (sitting upright, lifting arm to brush teeth or hair) felt the same as major physical strain when I was well - just like fatigued muscles after prolonged or heavy exercise. The same shakiness, muscle fatigue, lactate pain. I recovered from ME/CFS, and I can't say with certainty why, but my instinct says that some of my approaches helped, and one was treating it like a strained and dysfunctional metabolic/mitochondrial issue. I paced carefully, made my diet highly antioxidant and anti-inflammatory rich and took supplements to support mitochondrial function (among other things). When I became unwell it was in the context of infection and stress with an EBV history, when I recovered it happened quite quickly, like a switch was flicked. At that point I was the most deconditioned I'd ever been in my life but I immediately had more strength and capacity for physical effort without fatigue and pain and started doing things I hadn't been able to for years (tentatively at first, I couldn't believe it) so it was not at all explained by deconditioning.

@jaymahay822 Жыл бұрын

Which supplements did you use?

@linden5165 Жыл бұрын

@@jaymahay822 things like magnesium, vitamin D, coenzyme Q10, niacinamide, D Ribose, multi B vitamins, flaxseed oil for omegas. I also did some breathing work which I've realised since might have helped as it can have a big physiological impact to change breathing habits. Also relevant in my case - I'd had years of migraines before I got sick. I realised they were likely due to neck tension and misalignment which had only worsened with postural muscle collapse due to fatigue. A really great physiotherapist treated me and I never had a migraine again and it's possible it contributed to recovery. There's some supporting research about head/neck issues and impact on cranial nerves. The other thing I realised since is I'm neurodivergent (autistic) and that makes me prone to fatigue just from the every day exposure to social and sensory stimulation. That alone was not enough to cause ME/CFS symptoms but it definitely put me on the path to becoming unwell because I had a lifelong habit of ignoring my own needs, pushing past my limits and not pacing well at all.

@jaymahay822 Жыл бұрын

@@linden5165 Thanks a lot, that really helps. Almost 8 months into mild ME. Fatigue and sleep issues are my main thing and muscle pain has gradually gone away. At 22, I'm still feeling optimistic and I'll look into a few of the stuff you mentioned.

@linden5165 Жыл бұрын

@@jaymahay822 I wish you well. It's a tough illness and doctors are not often helpful. I had a sleep study done when I was in the midst of it and they found apnea so I started treatment for that. It wasn't behind everything happening but having that treated probably did support recovery too.

@davidford8539 Жыл бұрын

@@linden5165 what dosages?

@ericwalters3426 11 ай бұрын

Lactate overproduction, is an aspect of all this ive never heard connected to this, but its something ive struggled with since i was young.

@MP-uo6qd Жыл бұрын

Defective energy metabolism has been known for many years.

@ericwalters3426 11 ай бұрын

I recently have studied what methyline blue does. And interestingly it improves the oxygen uptake in the cell that improves the level of ATP output. I havent tried it but in theory it fixes this problem, and is an intriguing solution.

@Richexperience1 7 ай бұрын

I’ve been on Methylene Blue for about 6 months. Hard to say if it helps, I think it does. Definitely not a cure.

@davidkruse4030 6 ай бұрын

Nothing fixes the problem.

@ericwalters3426 6 ай бұрын

@@davidkruse4030 after trying this at a low dosage for 1-2 weeks, and got no noticeable improvement. Disappointing, so you may be right.

@annalisette5897 9 ай бұрын

So, the hypoxic findings must be similar to states found in lung diseases like COPD? Intermittent fasting has been proposed for a number of chronic diseases. The ketogenic diet has been used for disorders of brain and nervous system, that ketones may calm the nervous system. So, I wonder if ME/CFS is a neuroprotective attempt by the body? My friends and I have been devastated by "unknown" "really tough" viruses that tested negative for influenza and which were here long before C*VID. A simple pattern for these illnesses was that they began as mild upper respiratory and within about 48 hours, the GI tract was attacked, especially intestines. After the GI involvement, neurological symptoms set in. Those who got neurological symptoms frequently did not fully recover and some had long term ME/CFS symptoms. Whatever the actions of these viruses and individuals' immune systems, perhaps an underlying component is that the brain and nervous system became under attack. What, if anything, does the body do to protect these systems in such situations? Maybe there are solutions to be found with this line of investigation?

@andrewstrakele6815 9 ай бұрын

I agree with your idea that the chronic fatigue symptoms may result from the Body’s attempt to protect the brain. Deep Sleep is the only time the waste products of inflammation and normal metabolism are removed from the Brain. I suspect the fatigue is the Body’s attempt to force the person to rest so that waste products can be removed from the Brain. In the early stages of CFS/ME, REST is what is required. Unfortunately, many attempt to return to a normal lifestyle and repeated crash, making the condition worse. The onset of symptoms from a crash causes more Stress and Anxiety, resulting in more lack of restorative Deep Sleep. I also believe that CHRONIC STRESS is the root cause of CFS/ME, Long COVID, Chronic Lyme Disease, Fibromyalgia, MCAS, and POTS. Chronic Stress must be addressed for any treatment program to be effective. Meditation and Breathing Exercises are gentle methods to help reduce Stress. LifeWithKyle has Meditations SPECIFIC to Long COVID on his Channel that he practices whenever symptoms start to appear following exertion. He found the Meditation helped to calm his Nervous System and diminish the symptoms. JUST ROB offers Polyvagal Exercises that also result in a calming effect. Both have successfully recovered from Long COVID. I believe their Lifestyle Changes would have a similar effect on the other chronic dysfunctions of the Immune System. I believe FASTING is also a protective mechanism. It produces a Stress on the Body like Exercise, so it should be started gradually after the CFS/ME patient has had enough rest to attempt some exertion. Fasting stimulates Autophagy and Mitophagy, where damaged Cells and Cell organelles, as well as pathogens, are broken down into basic amino acids and used to build new, better functioning Mitochondria and ImmuneCells, for example. A 3 Day Fast is one of the best ways to completely reset your Immune System, but it requires pacing to gradually work up to it with CFS/ME. Fasting also gives the Digestive System a rest and can help to repair Leaky Gut, which is how pathogens avoid Digestion and directly enter the Bloodstream. If you have Leaky Gut, it’s likely you also have a Leaky Blood/Brain Barrier, which provides pathogens an entry to the Brain, where they cause inflammation resulting in Disautonomia, as well as Brain Fog, Migraines, Depression, Anxiety, and other neurological conditions. Though understanding the Biochemistry and developing Pharmaceuticals may be helpful in diminishing symptoms, I believe Lifestyle Changes will be more effective in treating CFS/ME. Many have already successfully recovered through Lifestyle Changes, so there’s no need to wait for new Pharmaceuticals.

@Truerealism747 7 ай бұрын

@@andrewstrakele6815 that's great are you hypermobile CFS 26 years now more fybromyalgia my father has CFS.niw ok found out we both have add I have Asperger's as my son that's the link