Dr Mady Hornig and Dr David Tuller: Why do some develop chronic, severe ME-type illness after Covid

[Countrygirl]

About ten-per-cent of Corvid patients are developing an illness very similar or the same as those with ME, who also, in the main, became chronically ill after an acute viral infection such as Coxsackie B, Lyme, Q fever or exposure to toxic chemicals. Will their future be the same as that of the past of ME patients: will they also be ignored, even abused and abandoned by the medical profession or will medicine finally take this group of often bedbound/housebound patients seriously after 90 years of neglect and disbelief? What changes with the potential influx of new patients have on the continuing fate of this abandoned group of patients?

The post below is written by Dr David Tuller and Dr Mady Hornig


https://www.healthaffairs.org/do/10...E0fHa7KI-cLTiAd-LrGI36AkYQ4OvXvTDOik6Oped8ME&

HEALTH AFFAIRS BLOG
RELATED TOPICS:

• COVID-19
• DISEASES
• HEALTH CONDITIONS

Why Do Some Recover From COVID-19 Quickly, While Others Seem Likely To Face Long-Term Disability?

• Mady Hornig
• David Tuller

Never in the modern scientific era have so many people been infected with the same virus in such a short period of time. And if the history of medicine is a guide, a proportion of COVID-19 survivors will not fully recover and will develop disabling and chronic neurological dysfunctions and other disorders.

Benefits Beyond COVID-19

It is also important to recognize that such research has benefits that extend beyond just the population of individuals with COVID-19. For example, it could benefit up to 3.4 million Americans estimated to be suffering from myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS)—a disease or cluster of related diseases characterized by profound exhaustion after minimal exertion, sleep disorders, cognitive lapses, and other symptoms. Some get better, but few regain full function. A quarter of patients are largely home-bound or bed-bound. In the US, the annual costs of ME/CFS, including medical expenses and lost productivity, could be as much as $24 billion, according to the Centers for Disease Control and Prevention.

Many if not most ME/CFS patients date the start of their illness either to a case of mononucleosis, a cold, or some other acute infectious episode. Although efforts to link the condition to a specific pathogen have failed, viruses, bacteria, and parasites all appear capable of triggering these extended states of poor health.

Start The Research Now
Research on the long-term impacts of SARS and other epidemic diseases has often been retrospective—that is, it looks backward to determine why some patients continue to experience symptoms. Such investigations, while useful, provide much less authoritative and reliable information than prospective research that follows people from diagnosis and over an extended period of time. For example, biological samples acquired early on may reveal evidence of key aspects of the disease process. And patients might forget details that could be important clues to pathophysiologic changes if they are only asked about them after the fact.

With the coronavirus, now is the time to implement such prospective research and start documenting the biological pathways from initial illness to chronic neurological dysfunctions and other disorders. Some specialty medical associations and research groups have already initiated or announced valuable efforts to gather such data, yet post-COVID-19 monitoring and biobanking plans remain extremely limited and fragmented. Unless nationwide and global surveillance and registry mechanisms are established soon, our best opportunity to discover the factors that impede or hasten long-term recovery—and to translate these findings into effective interventions—will rapidly slip away.

Such an initiative would require bold leadership from the National Institutes of Health, to rally the cooperation of other key institutional governmental and non-governmental bodies, both domestic and international. And it would obviously require large funding commitments.But the unprecedented scale of events, and the potential economic, societal, and human toll of a secondary wave of post-COVID-19 disability, call for an unprecedented global research investment to meet this public health challenge head on.

 

[Hipsman]

it could benefit up to 3.4 million Americans estimated to be suffering from myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS

Wow that's allot of people! ME/CFS online community feels so small when compared to how many are strugling with this disease

 

[ljimbo423]

I'm convinced that a disrupted gut microbiome is at the root of my ME/CFS. Testing found that I had "very severe dysbiosis". However, turning that around after a lifetime of high simple carb and sugar diet, chronic stress, 35-40 courses of anti-biotics, etc.

Which all "skew the bacterial communities that make up the gut microbiome", is incredibly difficult. Especially when I can't tolerate the high doses of herbs and supplements needed to re-balnce my gut microbiome in a speedy manner.

From the article-

It is possible an initial infection is like a hit-and-run accident—even though the acute illness passes, it leaves behind serious damage in vulnerable individuals. It is also possible, for example, that a new infection could help trigger the reactivation of latent viral infections or skew the bacterial communities that make up the gut microbiome, with consequences for the immune system and metabolic processes.

 

[ebethc]

Testing found that I had "very severe dysbiosis".

what test?

 

[ljimbo423]

what test?

I forgot what the initials stand for and had to google it! CDSA- Comprehensive Digestive Stool Analysis

 

[Countrygirl]

Wow that's allot of people! ME/CFS online community feels so small when compared to how many are strugling with this disease

I read recently that it is now considered that 64 million have ME world-wide. The figure quoted was always 17 million, but there has been no serious attempt to estimate the numbers affected for many years.

 

[ljimbo423]

I read recently that it is now considered that 64 million have ME world-wide. The figure quoted was always 17 million, but there has been no serious attempt to estimate the numbers affected for many years.

Good point. I also think the number of us with ME/CFS is profoundly underestimated. I think there are millions of people, like my son, that have never been diagnosed because he is functioning at about 70-80% of normal. After having ME/CFS myself for 42 years, I have a pretty good eye for it!

70-80% is about the level I was functioning at for several years, through my early 20's into my late 20's. In my late 20's I started to decline fast and soon became unable to work.

 

[stefanosstef]

Good point. I also think the number of us with ME/CFS is profoundly underestimated. I think there are millions of people, like my son, that have never been diagnosed because he is functioning at about 70-80% of normal. After having ME/CFS myself for 42 years, I have a pretty good eye for it!

70-80% is about the level I was functioning at for several years, through my early 20's into my late 20's. In my late 20's I started to decline fast and soon became unable to work.

Your functioning according to age seems to be identical to mine...

 

[Learner1]

https://pca.st/kgx142uu

 

[nryanh94]

Good point. I also think the number of us with ME/CFS is profoundly underestimated. I think there are millions of people, like my son, that have never been diagnosed because he is functioning at about 70-80% of normal. After having ME/CFS myself for 42 years, I have a pretty good eye for it!

70-80% is about the level I was functioning at for several years, through my early 20's into my late 20's. In my late 20's I started to decline fast and soon became unable to work.

Seeing this terrifies me as I’m about 80% functioning and am 26. I’m still working and don’t really have other options as I have a small child. Any advice, or thoughts as to what caused your decline?

 

[ljimbo423]

Seeing this terrifies me as I’m about 80% functioning and am 26. I’m still working and don’t really have other options as I have a small child. Any advice, or thoughts as to what caused your decline?

Basically really not taking care of myself. I was drinking a lot, eating a high sugar, high carb, junk food diet and had taken a lot of antibiotics. All of which severely messed up my gut and I fully believe that my gut is what caused and is causing my ME/CFS.

So IMO, if you want to avoid getting worse, do the exact opposite of what I did. Take very good care of your gut and I'll be very surprised if you get worse.

My son has and is making some of the same mistakes I did and I have little doubt this is why he has mild ME/CFS but he don't want to make the changes necessary to fix his gut and therefore his health.

If I could go back in time and talk to my 26 yo self. I would tell him to "treat his gut with the utmost care and respect and all the time and effort you put into it will pay off in good health and great energy. If you don't, you're health will decline and you will be unable to work by the age of 30."

30 is when I was considered disabled. If I knew at 26 what I know now, I'm convinced I never would have become disabled with ME/CFS. Now I'm 60 and trying to undo a lifetime of bad living, which is extremely difficult.

I hope this is helpful.........