Differences between post-viral fatigue and ME/CFS

[lintonthepenguin]

Hey, everyone. I'm a newcomer around here, though I've been lurking/reading for a little while, ever since I came down with some sort of flu/flu-like viral infection with tonsillitis that knocked me for six just over a month ago. I've recovered from the 'acute' phase, but been left with a few vague symptoms that generally fit the profile of post-viral fatigue and ME/CFS, which is what prompted me to make this post.

Having said that, I want to be clear about one thing - I'm not asking for medical advice or diagnosis for myself (I'm aware that doing so is against the rules of PR). I'm just more generally interested in the answers to one, broad question:

Are there any recognisable symptomatic differences between post-viral fatigue syndromes and ME/CFS? There are a few studies out there that discuss the rates of post-infectious fatigue/CFS in the population, and the rates of recovery in the first year, e.g. the Dubbo studies, but from what I can recall those studies were fairly vague in terms of describing the symptom patterns etc.

Are post-infectious fatigue syndromes essentially identical to ME/CFS from a symptomatology perspective? Is there any data or research on this? It seems like, at present, ME/CFS is considered to be basically, in terms of symptoms, a severe post-viral fatigue syndrome that people simply don't recover from? (Again, speaking purely in terms of symptoms - I don't doubt that there are likely multiple different pathways and causes at play).

(As a side note, I'm humbled by the sheer perseverance and strength of character evident in the posts, threads and stories of everyone on these boards. I sincerely hope that the recent research efforts pay off and that you're all able to be effectively treated/cured of your condition in the near future. I wouldn't wish ME/CFS on anyone, and you'll always be in my thoughts).

Thanks, everyone, for any insight that you have.

 

[Laelia]

Hi @lintonthepenguin. I'm sorry I don't know the answer to your questions, I just wanted to say welcome! I'm new here too. There are a lot of very knowledgeable people on here so hopefully someone will be able to provide you with some answers. You're absolutely right about the about the sheer perseverance and strength of character demonstrated by some on here. We have some extraordinary members, I feel privileged to be amongst them.

 

[Skippa]

Hi, and welcome. Anyone with a Gandalf avatar gets a big thumbs up from me!

 

[Basilico]

I'm not an expert, but I'll take a stab at it and others with more knowledge can feel free to correct me if I make mistakes along the way

CFS is the name given to a collection of symptoms with no known cause; post-viral exhaustion would seem to me to have an obvious cause (viral infection).

Some people with CFS have done many anti-viral and antibiotic protocols, and while some people get improvement, it may be short-lived or they may still not return to 100%. Other people get no improvement from these treatments. There is speculation that viruses, bacteria, molds, etc... may play a role in CFS, but as of now nothing has been proven and there is no treatment that has shown to consistently bring improvement.

My personal belief is that while many people may have viral or bacterial infections that are contributing to making them worse, these infections are not the cause (I believe it is a dysfunctional immune system and CNS, but this is only my opinion).

To be diagnosed with CFS, a person must have a certain number of symptoms from a list (there are multiple checklists that are slightly different. The Canadian checklist says that the patient must have a certain combination of: Fatigue, Post-Exertional Malaise, Sleep Dysfunction, Pain, Neurological/Cognitive Dysfunction, Immune/Endocrine/Autonomic Dysfunction and that the symptoms must last more than 6 months)

So, fatigue on it's own is not enough to be classified as CFS.

ME has many similar symptoms and issues when compared to CFS, but it is distinctly different because it involves inflammation of the brain and spinal cord. People with ME have many of the same symptoms that CFS people have, but ME is primarily a neurological (CNS) disease and as such, they also have many of the same symptoms that people with MS have. There is a really informative site that has much more detailed descriptions of ME here: http://www.hfme.org/mevsms.htm

Many people have chronic fatigue but don't have Chronic Fatigue Syndrome. I think there is a lot of confusion about this, and it is common for people with the only symptom of fatigue to assume they have CFS. There are TONS of identifiable health issues that can cause fatigue, but no specific virus, bacteria, or other cause has been identified to cause CFS or ME.

One of the CFS specialists I saw in Italy said that he believed CFS was the result of the immune system not 'disengaging' properly after an infection, so the body was behaving as if it were in 'sick mode' without having an active infection. Your post-viral fatigue sounds consistent with his hypothesis, though there is no way to know. (His treatments didn't help either my husband or me, so even if his hypothesis is true, it's unclear how one would fix this.)

 

[SilverbladeTE]

Hi, and welcome. Anyone with a Gandalf avatar gets a big thumbs up from me!

Gandalf rocks

mostly I agree with this. Compassion and mercy are more vital to our true Human nature and actually way more effective tools, even "weapons", than greed and malice.
but being Scots and from practical experience, well sometimes for some bampots you need a big axe

 

[Mohawk1995]

I am not sure there is a clear cut answer to your question. There appears to be a lot of overlap between PVFS, ME/CFS, other fatigue disorders and even things like Post Concussive Syndrome. Many people with ME/CFS have equated it to having Mononucleosis that never goes away. @Basilico is correct in that the Canadian Criteria is as good of definition of symptoms as any. @slysaint gives good advice on not over-exerting yourself, although I would caution away from doing nothing. Our bodies are meant to move and be active, but pushing hard right now would not be advisable. Maybe a plan to take time to rest and then gradually resume normal activities is best. Not sure there is any evidence to support it, but that seems like good advice.

Definitely keep in touch with PR and this community. They are good resources for the most part and you will find support if needed.

 

[Basilico]

Oh, I forgot to add that the people with CFS (and I believe ME) who rested A LOT early on seem to do much better later on. Often, when people push themselves too hard (exercise, overworking, etc...) in the early stages, they end up really paying for it later on. Since it sounds like you are pretty early into whatever it is you have, it is really important to rest and take very good care of yourself, as @Mohawk1995 mentioned.

 

[TigerLilea]

According to the doctor who originally diagnosed me with Post-Viral Fatigue Syndrome, CFS/ME and PVFS are the same thing, just a different name. She didn't like the name CFS so she uses PVFS.

 

[lintonthepenguin]

Hey, everyone. Thanks for your advice and the warm welcome - I really appreciate it.

A few things -

Yes, I've been trying to 'listen to my body' and not push myself to do anything. It helps that I'm currently on a gap year between sixth form (UK equivalent of American high school) and university, and also unemployed - which means I don't actually have any obligations that are calling me back before I'm ready. Hopefully that is helping. That said, I do sometimes (e.g. yesterday) feel very energetic, and I've been trying not to confine myself to not acting on those impulses either. Of course, what I mean by that is more "going for a walk around the park at my own pace" rather than "returning to a hectic lifestyle where I'm expected to meet the demands of a boss/family/etc", which is probably a significantly better position than many post-viral patients find themselves in. I have a lot of sympathy for those people who were forced to push through post-viral symptoms due to family and other commitments and ended up worsening their condition because of it.

(It's also worth noting that I haven't actually had a blood test for EBV or anything yet, so for all I know this is 'just' a bout of mono/glandular fever - I'll be trying to get my GP to arrange a test in the near future).

As for the wider issue of the definition/nature of post-viral fatigue - my understanding, and I hope someone who's developed more knowledge from reading the literature than I have can weigh in - is that post-viral fatigue syndromes (including many CFS-like symptoms other than fatigue) are fairly common, yet almost always resolve, and that, from a clinical perspective, such post-viral episodes are generally assumed to be self-limiting and self-resolving.

The reason I ask is, well... if it's a month after my initial infection, and if the studies on the subject are any indication, post-viral symptoms are not uncommon - the uncommon thing is when they don't resolve and become chronic, which is when ME/CFS diagnoses are offered. Am I correct in that assumption? There are a lot of stories, e.g. of people taking months to recover from glandular fever and the like, but ultimately become completely well.

I guess what my mind is ultimately trying to nail down is - there are obvious things I should and shouldn't be doing now to safeguard my health, such as not pushing myself, eating well, healthy living, getting plenty of rest - and thanks for that advice - but a month of post-viral symptoms isn't necessarily indicative that an ME diagnosis is inevitable, right? My understanding is that 90% or more of people who develop post-viral fatigue will also recover from it, while it's a very unlucky 10%-ish of people who don't see any recovery and end up saddled with an ME/CFS diagnosis. Or am I wrong?

Thanks, everyone, for your insight.

 

[halcyon]

ME is a post-viral disease but not all post-viral diseases are ME.

 

[lintonthepenguin]

ME is a post-viral disease but not all post-viral diseases are ME.

Yes, this is the understanding I have of it. The thing is, my understanding of it is also that it's fairly difficult to distinguish between the two on symptoms alone, and that the only real way of knowing whether something is a transient postviral syndrome or an actual ME/CFS presentation is to wait and see whether or not it goes away - if it does go away, it isn't ME/CFS, and if it remains chronic, it's ME/CFS. Am I correct in that belief? I'm just trying to nail down whether or not my understanding of the situation is correct. That would seem to line up with the Dubbo studies, which suggest that around 20-30% of people infected with various pathogens can experience a post-viral syndrome very similar if not identical to many definitions of CFS, but that up to 90% rapidly recover (i.e. not ME), despite their symptoms lining up to a decent degree with e.g. the Canadian Consensus criteria for CFS (even if not some of the more exacting definitions of ME that some people subscribe to).

 

[halcyon]

The thing is, my understanding of it is also that it's fairly difficult to distinguish between the two on symptoms alone, and that the only real way of knowing whether something is a transient postviral syndrome or an actual ME/CFS presentation is to wait and see whether or not it goes away - if it does go away, it isn't ME/CFS, and if it remains chronic, it's ME/CFS. Am I correct in that belief?

At this point it's too hard to say. All we know for sure is that if you meet the case definition and rule out everything else, you have it, whatever "it" is. And "it" could still be multiple diseases.

 

[daisybell]

I think it will be very interesting to see, at the point at which we have good biomarkers, exactly what the differences, if any, are between post-viral fatigue and ME/CFS...

My brother was ill with mono for well over a year but he did recover. It took him several years to get back to full strength. Nobody suggested ME as the diagnosis for him. I do have ME - and my experience is of a more gradual downward spiral.

I think if you are hit hard by an illness, the only sensible thing is to be very cautious about resuming activity and listen carefully to what your body is telling you. If you don't feel like doing something - don't! Your chances of improving are much greater than your chances of not... but don't push through symptoms.

 

[lintonthepenguin]

I think it will be very interesting to see, at the point at which we have good biomarkers, exactly what the differences, if any, are between post-viral fatigue and ME/CFS...

My brother was ill with mono for well over a year but he did recover. It took him several years to get back to full strength. Nobody suggested ME as the diagnosis for him. I do have ME - and my experience is of a more gradual downward spiral.

I think if you are hit hard by an illness, the only sensible thing is to be very cautious about resuming activity and listen carefully to what your body is telling you. If you don't feel like doing something - don't! Your chances of improving are much greater than your chances of not... but don't push through symptoms.

That's very interesting - thanks a lot for offering your/your brother's experiences. If you don't mind my asking, what were your initial symptoms and your brother's symptoms (if you can recall)? I'm just curious how similar they were, since it might provide a little bit of anecdotal insight into the potential differences between PVFS and 'true' (i.e. chronic) ME/CFS.

 

[arewenearlythereyet]

I would say that nobody here will be able to give you a definitive answer. Some people believe that virus infection can be a trigger in some people with me but fewer think that the virus is anything but that ....a trigger for some people. Generally in the uk CFS and ME are synonyms for the same condition. A lot of people will resist the term CFS and make out its a different condition because they don't like the name, although there really isn't a clear differential or standardisation of terms. The problem is that there is no diagnostic test so misdiagnosis is high. The defining feature symptom appears to be PEM. Post viral fatigue is not synonymous with me/CFS unless it has PEM.

 

[daisybell]

That's very interesting - thanks a lot for offering your/your brother's experiences. If you don't mind my asking, what were your initial symptoms and your brother's symptoms (if you can recall)? I'm just curious how similar they were, since it might provide a little bit of anecdotal insight into the potential differences between PVFS and 'true' (i.e. chronic) ME/CFS.

I'm not sure whether this is relevant or not really!
But - he was very unwell with mono, and had crushing fatigue for about a year, then gradually improved.
I caught a different virus - parvovirus... I had some post-viral issues with joint pain etc which is a known complication. Those took a couple of years to go. The ME symptoms came on gradually over the next couple of years so it was several years before I was given this diagnosis. Other auto-immune issues also developed over that time. So in my case, I basically recovered from the virus that started my 'health issues' but then got other symptoms over time.

 

[Pendergast]

One thing I don't understand is:

If the disease is named "Postviral Fatigue Syndrome / Benign Myalgic Encephalomyelitis" in the ICD-10 (code 93.3) of the W.O.H - at least that's the diagnostic I have...

¿Why those names are never used and instead of them, allways CFS/ME have been used?

I must be missing some point here...:thumbdown:
In fact, I'm missed with so many names. It's PVFS=PVS=CFS=BenignME=ME=SEID=CFDIS?

 

[lintonthepenguin]

I'm not sure whether this is relevant or not really!
But - he was very unwell with mono, and had crushing fatigue for about a year, then gradually improved.
I caught a different virus - parvovirus... I had some post-viral issues with joint pain etc which is a known complication. Those took a couple of years to go. The ME symptoms came on gradually over the next couple of years so it was several years before I was given this diagnosis. Other auto-immune issues also developed over that time. So in my case, I basically recovered from the virus that started my 'health issues' but then got other symptoms over time.

Thanks for the insight. And yeah, it may or may not be relevant, given the heterogenous triggers of ME/CFS and the seemingly homogenous metabolic dysfunction going on.

One thing I don't understand is:

If the disease is named "Postviral Fatigue Syndrome / Benign Myalgic Encephalomyelitis" in the ICD-10 (code 93.3) of the W.O.H - at least that's the diagnostic I have...

¿Why those names are never used and instead of them, allways CFS/ME have been used?

I must be missing some point here...:thumbdown:
In fact, I'm missed with so many names. It's PVFS=PVS=CFS=BenignME=ME=SEID=CFDIS?

I have no background in this subject whatsoever, but... my understanding is that they're all labels that are somewhat arbitrarily applied to an illness that 'looks the same' - as in, it has a broadly similar set of symptoms. The concept of 'post-viral fatigue' is very interesting, because it often 'looks' almost identical to ME/CFS in its symptom presentation, yet many people develop it following an infection and then recover fully within 1-2 years (see the Dubbo studies for the statistics on this).

My understanding is that, as far as mainstream medicine is concerned, ME/CFS-style symptoms following infection are considered to be post-viral fatigue syndromes by default and a 'true' ME/CFS diagnosis is generally only given if the symptoms don't resolve on their own before a semi-arbitrary cutoff point. The cutoff point often used is 6 months, but it's fairly common-ish for postviral fatigue to linger for 1-2 years before recovery. Having one of these post-infectious episodes doesn't necessarily mean that you have a permanent/chronic case of ME/CFS, but it's something that only time will tell.

...at least, that's my understanding of it. It's what I posted this thread to try clarify, but I guess the lack of reseach in this area is showing since no one is able to confirm/deny due to a lack of good science on the subject.

The question of whether or not post-viral fatigue and ME/CFS are fundamentally different illnesses from a metabolic and systemic perspective is a very interesting one, though. I think there is a (perhaps slim) possibility that a lot of ME/CFS cases are essentially the result of a post-viral fatigue state that lasts unusually long and doesn't 'reset' in good time, which causes internal feedback loops leading to the chronic form of the condition emerging. That's just me thinking out loud, though. It's entirely possible, perhaps even probable, that they're actually caused by two entirely different mechanisms, but it's something that I guess we'll need more science on to properly determine.

(In the meantime, I guess I'm going to request an EBV test from the doctor. If it comes up positive, I guess I'll have an explanation for my symptoms, and, if it comes up negative, I guess I'll just have to try take comfort from the fact that over 90% of people recover from post-viral fatigue syndromes, according to the statistics, and to just sit tight and hope for the best. )

 

[halcyon]

¿Why those names are never used and instead of them, allways CFS/ME have been used?

Because using an actual name with real medical meaning would validate all us crazy somatizers.

 

[Skippa]

Ha "benign"... absolutely nothing benign about it whichever way one spins it!