hunter1899
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I’ve seen people online with mono say they have PEM. Is PEM only for those with CFS or could having only mono/high EBV titers cause PEM also?
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I’ve seen people online with mono say they have PEM. Is PEM only for those with CFS or could having only mono/high EBV titers cause PEM also?
Post-exertional malaise (PEM)
Post-exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks. PEM can be mitigated by activity management (pacing). The goal is to avoid PEM flare-ups and illness relapses by balancing rest and activity.
mono say they have PEM
This is my understanding as well.There are many illnesses that cause fatigue and profound exhaustion but they do not cause PEM, to the best of my knowledge. If someone is experiencing PEM, IMO, they do not have EBV or any other virus or illness, they have ME/CFS.
Has this been published? I'd like to read up on it.Some have already been diagnosed with ME/CFS from covid 19.
But it is problematic for differentiating diseases or conditions that PEM can be a bit vague, along the lines of feeling worse or symptoms flaring. I had mono so long ago now that I can't remember exactly what it felt like. I almost might prefer plain garden-variety mono to what I've got now. I'm not sure that mono feels quite like ME/CFS.
Has this been published? I'd like to read up on it.
Conversion of COVID-19 patients to people with ME / CFS
“We are proud to announce the initiation of a study of patients with COVID-19 to monitor the course of their disease and its sequelae (the medical term for chronic conditions after an illness) to ascertain whether they convert to ME / CFS and if it occurs, to study the molecular transformation.
This will involve the collection of body fluid samples at frequent intervals, continuous health monitoring via wearables, and symptom data recorded at many separate time points over two years. The expected outcome is that some will develop ME / CFS, as many other viruses serve as triggers for the disease.
The COVID-19 pandemic is an unprecedented opportunity to study the biological factors that may determine or predict the development of ME / CFS.
In a significant percentage of patients, severe viral infection preceded their development of ME / CFS. In this current COVID-19 pandemic, it seems likely that COVID-19 may also be a trigger, and that many people will develop ME / CFS.
It is thought that up to 11% of patients who had severe infections from Epstein-Barr virus (EBV), Q fever (Coxiella burnetii), or Ross River virus (RRV), and others, develop ME / CFS. Other studies following SARS and MERS suggest an even higher proportion (50%) develop ME / CFS or Fibromyalgia.
After COVID-19 patients recover from the acute phase of their disease, they may be at significant risk for a prolonged period of post-viral fatigue, which may last six months or more before returning to their previous normal state. However, for some patients, their fatigue may fail to resolve or become even more profound over these initial six months and continue indefinitely, converting to ME / CFS.
A detailed genomic, metabolic, and proteomic analysis over time will likely provide tremendous insights to understand how to identify those pathways that can be useful to predict, diagnose, or treat ME / CFS.
The world is intensely focused on COVID-19 at the moment. The likely conversion of thousands of patients to a disease that causes life-long suffering provides a unique opportunity for the world to finally pay appropriate attention to ME / CFS.”
@ljimbo423
Yes, I'd seen the OMF announcement that they were studying COVID to ME/CFS conversion, which I think is tremendously exciting, but I was wondering if there was more news or updates yet. I guess it's still early days.
I think it's the consistent delay in the worsening of symptoms, after physical or mental activity that separates ME/CFS from all the other illnesses. Usually a 12-48 hour delay.
I couldn't remember if consistency in delay was universal for PWME. Do you recall it being official?
Cerebral activity might bypass the IFN-g delay and trigger the glial cells more directly.
Covid 19 is the newest virus that is "triggering" ME/CFS. Many of these people that have been sick with what appears to be ME/CFS for months now have been tested, some multiple times and no longer have covid 19. Some have already been diagnosed with ME/CFS from covid 19.
So these viral infections must be making lasting changes in the body that are causing ME/CFS, even after the viral infection is gone.
That's a conclusion that does not follow from the evidence.
This logic is analogous to someone looking for his lost keys: he searches the living room and cannot find them there, and so he concludes the keys cannot be anywhere in the house.
SourceIn a significant percentage of patients, severe viral infection preceded their development of ME / CFS. In this current COVID-19 pandemic, it seems likely that COVID-19 may also be a trigger, and that many people will develop ME / CFS.
It is thought that up to 11% of patients who had severe infections from Epstein-Barr virus (EBV), Q fever (Coxiella burnetii), or Ross River virus (RRV), and others, develop ME / CFS. Other studies following SARS and MERS suggest an even higher proportion (50%) develop ME / CFS or Fibromyalgia.
So these viral infections must be making lasting changes in the body that are causing ME/CFS, even after the viral infection is gone.
Your post assumes the keys (the virus) is somewhere else in the house (the body) without evidence and it also assumes that if the virus is somewhere else in the body it's causing there ME/CFS symptoms, again without evidence.
If research shows the virus is still present in these covid 19 long haulers and is causing their symptoms, I will change my view. But that's not what the evidence is showing.
It is very difficult to get such post-mortem studies done, for obvious reasons.
The possibility that ME/CFS might be caused by a virus making some lasting changes or creating some hit and run damage during the acute infection is a hypothesis that has been around for a long time.
Similarly, the possibility that ME/CFS might be caused by an ongoing viral infection hidden in the body is another hypothesis that has been around for a long time.
These two possibilities are not facts, they are hypotheses.
But you stated the first hypothesis as if it were a fact. That's why I pointed out that the evidence does not support this.
There are plenty of examples where a viral infection is found in specific organs, but is not found in other parts of the body, and is not found in the blood.
That is my conclusion based on the evidence I've seen in post covid 19 patients testing negative for the virus and having ME/CFS symptoms. I apologize for not stipulating that it is my opinion.
I'm trying to understand your view but don't really get it.
Are you saying that all the many different triggers of ME/CFS, like Giardia, Q-fever, EBV, Ross River virus, SARS and MERS viruses, etc, are all still present in ME/CFS patients that had their illness triggered by them but they are hiding out somewhere in the body causing their ME/CFS?
Why isn't it possible for infections to reside in more than one organ?Infections can reside in just one organ in the body,
Even if a scientist personally really believes his hypothesis is true, he will still be careful to call it a hypothesis, and not a fact.
Why isn't it possible for infections to reside in more than one organ?
Sometimes I get overly enthusiastic with my opinions and present them as fact because that's how they feel to me. That's a good way to offend people though and I really don't want to do that.
Agreed...................that's why I think the whole viral testing bit isn't giving an accurate picture.The point I am making is that low-level infection can be localized to certain organs of the body.
So you may only be able to detect that infection if you cut off a tissue sample from the organ (cut off a bit of the organ by biopsy) and test the actual tissues for infection.
If you test the blood, you may not find the infection, because the infection may only be found in specific organs.