Long Covid isn’t as unique as we thought

[livinglighter]

ME occurs in most people spontaneously but there have been clusters of infections leading to ME/CFS so it is a very good question if long covid is just another mass ME/CFS event (but this time at a global scale).

Interesting, dysautonomia often happens spontaneously, or after childbirth etc.

In some cases, PoTS has been reported to have developed after:

• An infection such as a viral or bacterial illness.
• A life stressor such as pregnancy or surgery.
• A traumatic event.
• Immunisation.

However, a link with these potential triggers remains unclear.
https://www.potsuk.org/what_is_pots2

Doctors currently treating Long Covid neurological symptoms reported;

The virus has caused dysautonomia, problems with Lyth’s autonomic nervous system, where his heart rate spikes when he sits up or stands up.
https://www.nationalbrainappeal.org/long-covid-clinic-for-patients-with-neurological-complications/

Also i have wondered if ME/CFS is part of a body process we just have not discovered yet. Frankly all the ME/CFS data we do have is abstract and circumstantial, every other major disease has a proposed mechanism (from Cancer to Parkinson to Narcolepsy to Alzheimers). In the case of Narcolepsy they tried to argue it was a bit of this, a bit of that and of course is was psychosomatic, but in the end it took the discovery of a new wakefulness chemical that was previously unknown to science to actually pin down its etiology. The same may be true in ME/CFS and all the current research being done by OMF and others is just looking downstream or are pigeonholing hypotheses.

The same doctors treating the long-covid neurological symptoms also report;

A rare brain inflammation which is usually triggered by viral infections appears to be increasing in prevalence due to the Covid-19 pandemic, scientists have said.

Acute disseminated encephalomyelitis (ADEM) affects the brain and spinal cord and is typically seen in children.

It often follows on from a minor infection such as a cold – activating immune cells to attack the fatty protective coating covering the nerves.

But researchers from University College London said there has been a “concerning increase” in ADEM among adults during the pandemic.
https://www.gloucestershirelive.co.uk/news/uk-world-news/doctors-warned-over-brain-swelling-4304606

I haven't read the study yet, but I will post the link to find it if it's not already on the forum. I'm seeing the links as Encephalomyelitis does mean inflammation of the brain and spinal cord, typically due to acute viral infection. We know from previous ME studies inflammation has been found in/on the brain.

Encephalomyelitis
From Wikipedia, the free encyclopedia

Encephalomyelitis Specialty Neurology
Encephalomyelitis is inflammation of the brain and spinal cord. Various types of encephalomyelitis include:

• Acute disseminated encephalomyelitis (ADEM) or postinfectious encephalomyelitis, a demyelinating disease of the brain and spinal cord, possibly triggered by viral infection.[1][2]
• Encephalomyelitis disseminata, a synonym for multiple sclerosis.
• AntiMOG associated encephalomyelitis, one of the underlying conditions for the phenotype neuromyelitis optica[3][4] and in general all the spectrum of MOG autoantibody-associated demyelinating diseases.[5]
• Eastern equine encephalitis, Japanese encephalitis, Venezuelan equine encephalitis, and Western equine encephalitis: a group of viral illnesses that can affect horses and humans; collectively termed Equine encephalitis.
• Experimental autoimmune encephalomyelitis (EAE), an animal model of brain inflammation.
• Progressive encephalomyelitis with rigidity and myoclonus (PERM) – A kind of stiff person syndrome.
• AIDS-related encephalomyelitis, caused by opportunistic Human T-lymphotropic virus type III (HTLV-III) infection.

Its also possible that the money being put into long covid will help us becasue long covid and ME/CFS are the same thing or there are enough similarities that when something is discovered someone will have a light bulb moment and that will lead to a better ME/CFS theory.

I think long covid research will help........ But I also think receiving some help now will be in the hands of a Neuroimmunelogist if ME followed a viral onset as it is important to see if there is inflammation on the CNS. If not, an autonomics specialist can deal with ANS dysfunction. Many studies into ME/CFS are carried out with inconclusive results due to different cohorts of ME patients creating the need to define subsets. CFS tells us we have fatigue but does not inform us of the cause. I think causation falls under neurology.

For now, I suspect long covid is the same as ME/CFS, just a different virus trigger. All of us with ME have varying symptoms. I've seen reports of Long Covid symptoms that are the same as mine when I was mild. As I progressively deteriorated new symptoms appeared, so how are the comparisons being made? Should we compare long covid suffers with the old me or the new me to see if it's the same without testing?

If ME and Long Covid are the same and neurologists refer to the latter as causing dysautonomia, then it can be said; several different medical conditions are causing the symptoms of ME and why many of us who carryout further testing are diagnosed with several conditions as well as ME.

What is dysautonomia?

Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.





Dysautonomia is not rare. Over 70 million people worldwide live with various forms of dysautonomia. People of any age, gender or race can be impacted. There is no cure for any form of dysautonomia at this time, but Dysautonomia International is funding research to develop better treatments, and hopefully someday a cure for each form of dysautonomia. Despite the high prevalence of dysautonomia, most patients take years to get diagnosed due to a lack of awareness amongst the public and within the medical profession.
http://www.dysautonomiainternational.org/page.php?ID=34

Now my question is, when those of us who received a diagnosis of Myalgic Encephalomyelitis (meaning widespread pain with brain and spinal inflammation), should we have been referred to a neuroimmunologist for further investigations?

 

[Wishful]

Now my question is, when those of us who received a diagnosis of Myalgic Encephalomyelitis (meaning widespread pain with brain and spinal inflammation), should we have been referred to a neuroimmunologist for further investigations?

From my experience, no. I never actually received a diagnosis of ME, but I did see several neurologists, who were completely unhelpful. Until there is some useful knowledge about ME, and doctors get educated about that, I'm not sure there's much point in bothering to see a neurologist unless it's for something other than ME.

 

[andyguitar]

Now my question is, when those of us who received a diagnosis of Myalgic Encephalomyelitis (meaning widespread pain with brain and spinal inflammation), should we have been referred to a neuroimmunologist for further investigations?

I'd say yes, even if it is only done to rule out other things.

 

[andyguitar]

For now, I suspect long covid is the same as ME/CFS, just a different virus trigger.

Some with long covid have organ damage, particularly to the lungs. Not seen that in me/cfs.

 

[livinglighter]

Some with long covid have organ damage, particularly to the lungs. Not seen that in me/cfs.

I’ve read Dr Charles Shepherd distinguish between the two as well. Those with organ damage and those who had no more then mild COVID symptoms yet developed lingering neurological symptoms that he says is similar to ME.

 

[ljimbo423]

Now my question is, when those of us who received a diagnosis of Myalgic Encephalomyelitis (meaning widespread pain with brain and spinal inflammation), should we have been referred to a neuroimmunologist for further investigations?

It depends on how good the neuroimmunologist is. Unless they are exceptional, they might find some abnormalities but will not have a clue as to what's causing it.

I think it's immune activation in the body, causing neuroinflammation. Often when I get flares, I get flu-like symptoms, including swollen glands under my jaw. For me, I'm convinced these symptoms are caused by a leaky gut.

All I need to do to feel exactly like I have the flu, is take a big dose of any herb or antibiotic, that kills bacteria in my gut. Almost anything that causes immune system activation can feel exactly like the flu, Covid 19, EVB etc. Even lipopolysaccharides from bacteria in the gut.

BTW, Covid 19 has been shown to damage the gut. Possibly causing leaky gut and symptoms of ME/CFS.

This is just one person's experience but it comes with 14 years of research and using this research info to improve from severe to fairly mild ME/CFS.

 

[livinglighter]

From my experience, no. I never actually received a diagnosis of ME, but I did see several neurologists, who were completely unhelpful. Until there is some useful knowledge about ME, and doctors get educated about that, I'm not sure there's much point in bothering to see a neurologist unless it's for something other than ME.

I totally understand. I haven’t seen several neurologist as I’m still with the same one, but it’s taken years to be tested for ANS dysfunction. I’ve had an MRI that didn’t reveal anything abnormal but I’m going to request the images to see what was carried out.

 

[livinglighter]

It depends on how good the neuroimmunologist is. Unless they are exceptional, they might find some abnormalities but will not have a clue as to what's causing it.

My fear exactly...... Having examinations showing abnormalities and then being told there is bog all that can be done but CBT.

I think it's immune activation in the body, causing neuroinflammation. Often when I get flares, I get flu-like symptoms, including swollen glands under my jaw. For me, I'm convinced these symptoms are caused by a leaky gut.

I think there are lots of different causes for everyone, leaky gut being one of them. For some it’s Chairi Malformation.

 

[livinglighter]

I'd say yes, even if it is only done to rule out other things.

Makes sense to me but as @ljimbo423 said it’s likely to take someone exceptional.

 

[ljimbo423]

Makes sense to me but as @ljimbo423 said it’s likely to take someone exceptional.

With some luck and a little good fortune. All the research they are and will be putting into Covid, will lead to what's causing it and quite possibly what's causing ME/CFS as well.

 

[bensmith]

Thats the hope! If so i think this would be a huge step in chronic illness

 

[Alvin2]

My fear exactly...... Having examinations showing abnormalities and then being told there is bog all that can be done but CBT.

Its useful to have abnormalities found because you can address them. If the doc is an idiot and claims a measured abnormality is psychosomatic drop them like a hot potato and find a better doctor.
IMO its better to know you have something becasue medical ignorance is not bliss. But i have had my share of useless docs and i never went back to them.

 

[Alvin2]

This article is still "above the fold" on Vox

 

[livinglighter]

@Alvin2

An excellent article indeed! Thanks for sharing.

 

[Wishful]

Almost anything that causes immune system activation can feel exactly like the flu,

That's my feeling too, that many of the symptoms of "the flu" are the result of neuroinflammation, which can be triggered by all sorts of things elsewhere in the body. I wouldn't be surprised if an injection of IFN-g or some other single cytokine would result in 'flu-like feeling'.

 

[CFIDS]

I think that there is a vagus nerve component...with all the stuff I have suffered, I suspect vagus nerve inflammation caused by a virus (maybe HHV6 or EBV) and maybe even virus-mediated autoimmune inflammation. I also suspect that liver & gallbladder function plays a role in CFS,PVFS,ME, etc...