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HomeBlogIt isn’t all in your head: Long Covid fuels hope for better understanding and treatment of chronic fatigue

It isn’t all in your head: Long Covid fuels hope for better understanding and treatment of chronic fatigue

By: Medix Team
It isn’t all in your head: Long Covid fuels hope for better understanding and treatment of chronic fatigue

Chronic fatigue and associated conditions rank among the world’s least understood diseases. Some sufferers aren’t even aware they have a medical problem. Those that do know often face the additional burden of sceptical friends and family who think they’re “just depressed”

There can be few worse things in life than feeling too ill to work out how to get better while simultaneously believing that no one else is going to help you to do it either. That’s the situation, which many people suffering from CIND conditions face on a daily basis, often for many years on end.


CIND stands for chronic immunological and neurological disorders covering chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME), fibromyalgia, multiple chemical sensitivities and Gulf War syndrome. It’s an umbrella term for a range of symptoms, including tiredness, brain fog and dizziness that doctors find extremely hard to unpick.


The US Centers for Disease Control and Prevention (CDC) estimates that only 20% of CFS and ME sufferers in the country achieve a diagnosis. One of the main reasons is that each case is unique. Sometimes the cause might be a virus, but other times it is a number of factors interacting with each other in unknown ways.


Trying to unravel and understand what’s gone wrong for every single patient complaining of tiredness involves the kind of time and financial resources that overstretched healthcare providers are not always able to deploy.


Family care doctors are also known to fall back on antidepressants, or suggest stepped exercise to lift patients’ spirits on the grounds that they’re afflicted with a psychological issue rather than a physical illness. However, antidepressants often have no effect and exercise makes the situation worse.


Long-term sufferers frequently end up having to give up work and the debilitating fatigue progressively isolates them from everyone else. The most extreme cases can end up bedridden in darkened rooms for years and years.


As for “mild” cases, friends and family alike may struggle to comprehend why someone who looks fine on the outside and is able to chat over a cup of tea or coffee, cannot simply pick themselves up. What they don’t see is how much effort any simple act takes for anyone afflicted with CFS or ME.


For what both conditions share in common is a lack of stamina and post-exertional malaise (PEM): if a sufferer pushes themselves too far one day, they’ll crash for an even longer period the next.


It’s the opposite effect to what happens when a marathon runner collapses close to the finish line after completely depleting their energy stores. For CFS and ME sufferers there’s a delayed impact after exerting themselves.


Long Covid brings CIND out of the shadows


But there is hope. Most notably, long Covid is throwing a spotlight on post-viral fatigue. The billions of dollars of funding it’s attracting should help the wider CIND community too. In December, for example, the US Congress approved a $1.15 billion four-year funding package to support research into the condition. 


White House Chief Medical Advisor, Anthony Fauci, regularly draws comparisons between long Covid and CIND. Earlier this spring, he said that, “we've been chasing ME and CFS without ever knowing what the etiologic agent was. Now we have an absolutely well identified one that should be very helpful in getting us to be able to understand it. I hope we do; it's been mysterious to us for years. Maybe this will give us a chance at a breakthrough.”


In recent years, scientists have pinpointed dysfunctional mitochondria as a potential root cause, although there’s some debate about whether it’s the mitochondria themselves at fault, or other factors that inhibit them from doing their job properly.


Mitochondria are cell like structures within the cell (called an organelle) and act like the power plant of the cell. They use nutrients from the food that we eat (sugar, fats and protein) to create a form of chemical energy, which is stored in a small molecule called adenosine triphosphate (ATP).


This process is called aerobic metabolism and the fuel it creates (ATP) is what powers our bodies. However, the body doesn’t just use the ATP it produces for a single time.


It re-cycles ATP back through mitochondria to be used again and again. It is this re-cycled ATP that accounts for about 90% of our cellular energy.


Therefore, if the recycling mechanism starts to malfunction, it becomes very hard for energy supply to meet energy demand. Completely new ATP takes a few days to be manufactured from glucose sources alone.  The end result is fatigue.


What triggers CIND?


Scientists believe that a whole host of factors cause CIND, some working in combination with each other. Viruses, including, for example, human herpesvirus-6 and -4 (Epstein-Barr), are known culprits.


Another important area of research concerns the immune system and why it sometimes doesn’t return to normal after a virus is defeated. If it stays in fight-or-flight mode, it then potentially overreacts to any new bug, constantly churning out cortisol and adrenaline, which leads to inflammation, cellular damage and chronic fatigue style exhaustion.


Other CIND triggers can be environmental: exposure to toxins, chemicals and mould.  Hormones play a role too and first line tests often involve the thyroid and adrenal glands.


What can be done?


Leading CIND researcher, Dr Sarah Myhill, compares chronic fatigue to a badly performing automobile. In this analogy, the mitochondria are the engine, deriving their fuel from the diet.


The thyroid gland acts as an accelerator for energy production, while the adrenal glands are the gearbox that regulates supply and demand. The detox organs – liver and kidneys – are the exhaust pipe. Sleep is when the car gets its regular servicing.


There are virtually no drugs to treat CIND, although some patients who harbour the Epstein-Barr virus and experience CFS respond to one called valacyclovir.


Treating CIND is typically a painfully slow process involving fundamental lifestyle changes. One of the main ones involves diet: getting tested for nutritional intolerances and deficiencies, then boosting levels of vitamin C, magnesium, B complex, CoQ10, essential fatty acids and D-ribose.


An optimised diet has the twin benefit of improving the nutritional inputs the mitochondria gets to digest and supports a balanced immune system.


Patients are also told to detoxify their living environment: clean out any mould, avoid aerosols and ensure there’s good ventilation.


Pacing is especially important. In particular sufferers are asked to think about what they feel able to do on daily basis and then do 80% of that.


Sleep, rest and meditation are all considered “energy giving” activities that give their body’s poorly functioning energy production process a chance to re-balance supply and demand.


One new line of attack is lipid therapy to try and improve mitochondrial function. Advocates believe that lipids help to strengthen the membranes surrounding the mitochondria, enabling them to function better.


Another treatment involves re-training the limbic system, the part of the brain, which governs emotional and behavioural responses. This is based on the theory that an over-active immune system over-stimulates the sympathetic nervous system, which connects bodily organs to the brain via spinal chord nerves. The brain gets traumatised by this prolonged fight-or-flight mode and then stuck in negative patterns.


Long Covid is already some shedding some light on this area of research. One support group, Survivors Corp, recently canvassed 962 long Covid sufferers: 39% said their symptoms improved or disappeared after getting a vaccination shot.


The Yale School of Medicine is now launching a study to see whether the vaccine helps the immune system to re-set itself.


The sheer numbers of people with long Covid is prompting plenty of discussion about how much of a burden the virus’ after-effects will have on healthcare systems. For CIND sufferers, it means that they’re far less likely to hear that their fatigue is psychosomatic.


Even as recently as the 1970s, psychiatrists were still saying that ME was hysterical in origin because it affected more women than men. Acknowledging a physical cause and ploughing resources into CIND research cannot come soon enough for those unlucky enough to experience it.

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