Slow onset vs. sudden onset ME/CFS - numbers anyone?

[rosie26]

So perhaps some people who consider they had graded onsets would fit into sudden and some would fit into gradual?

Even though I am a staged ME I used to say my ME was sudden for the reason that each of my 3 stages were caused by either a bacterial or viral infection and these infections caused a major sudden shift in progression. Each stage was a turning point (for the worse).

So I think I fit into a sudden + staged ME.

 

[Hip]

Everything in its proper place

It's not for you to decide what other members can or cannot write on this forum. If I want to discuss psychiatric comorbidities, that my prerogative. You repeatedly take threads like this one off topic trying to enforce you own personal idea of what is appropriate for discussion on this forum, or what studies can or cannot be cited.

Secondary flotsam is a metaphore for psych symptoms that need to be perceived as secondary to ME/CFS. As to why, we have already discussed this. There can be no room for ambiguity when it comes to ME/CFS - it is a biological disorder, period, of a neuro-immune nature.

Why does talking about psychiatric comorbidities bring ambiguity to ME/CFS? Nobody is claiming that ME/CFS is not a biological disorder. As you know, many organic biological disorders come with psychiatric comorbidities or psychiatric symptoms. That fact does not imply those disorders are non-organic.

In any case, I happen to believe that most psychiatric conditions are in fact neuropsychiatric: that is, they are underpinned and caused by biological dysfunction. And there is increasing evidence showing this is the case. So therefore a biological dysfunction that causes an organic disease like ME/CFS or MS might also play a role in causing psychiatric symptoms.

Thus it is quite possible that the same pathophysiology that underpins ME/CFS may also be playing a role in organically causing the depression that many ME/CFS patients have. Put it this way: if an ME/CFS patient with comorbid depression were to achieve complete remission from ME/CFS say via rituximab treatment, and if his depression also disappeared at the same time, that would suggest that the depression was driven by the same or a similar biological dysfunction to the one causing the ME/CFS.

And don't forget that a number of neuropsychiatric symptoms are listed in the CCC definition of ME/CFS, including anxiety, panic attacks, reactive depression, emotional lability, emotional flattening and personality change. So your apparent desire to cleanly separate physical ME/CFS symptoms from neuropsychiatric ones is thwarted by the CCC itself.

 

[Hip]

I did not say anything about an infection or immunostimulatory event as a trigger. The whole point about positive feedback events is that they need no trigger, or at least only an infinitesimal perturbation of the sort that could occur every day. Think of a raindrop forming. There is no trigger but once a tiny aggregate has formed it gets bigger and bigger. Think of the ruts that form on dust roads or moguls on ski slopes - there is no trigger. Ordinary processes form feedback loops and suddenly everything goes haywire - in chaos theory things like autoimmunity are called attractor states. The concept of a trigger is completely redundant to the development of the pattern.

Perhaps such chaotic system descent into disease does happen; and perhaps it could be responsible for some ME/CFS subsets. So in such cases, ME/CFS would appear to arise randomly.

But sudden onset ME/CFS following viral infection is so common that you would be hard pressed to explain this in terms of a random etiology based on chaotic systems.

 

[purrsian]

Regardless of whether it includes reference to psychological comorbidities, the study @Hip linked was exactly what the OP was asking for - if there was any data on what proportion of patients are gradual vs sudden onset. I don't think that linking a study means that you "endorse it", it can simply mean "hey I found this link and I thought you might be interested".

 

[arewenearlythereyet]

Perhaps such chaotic system descent into disease does happen; and perhaps it could be responsible for some ME/CFS subsets. So in such cases, ME/CFS would appear to arise randomly.

But sudden onset ME/CFS following viral infection is so common that you would be hard pressed to explain this in terms of a random etiology based on chaotic systems.

you seem to be missing the point of the microbiology here? if you read the many threads, it is clear that onset doesn't happen because of the actions of a particular organism, they are just opportunistic organisms doing their thing and when they discover a compromised immune system they have a party. It doesn't matter which type of organism it is or whether it's viral or bacterial.

The point is that the type of onset indicates that the immune system was compromised or had a weakness to it before the infection occurred. The answer to this disease must lie in our bodies before the infection occurred. There must be something common to this pattern but it doesn't seem to be related to the type of microorganism. More about how healthy our immune system is at the time of the infection.

 

[Mary]

This paper comparing sudden to gradual onset CFS is interesting: they studied 36 CFS patients, who were self referred. Out of this 36, 25 were sudden onset, and 11 were gradual onset, suggesting that sudden onset is more common.

So in this study they found:
31% of CFS patients are gradual onset
69% of CFS patients are sudden onset

Sudden onset was defined as a viral-like illness with a specific date of onset from which subjects did not recover. Gradual onset was defined as a slow progression of symptoms over a period of weeks to several months or greater.

They found that CFS patients with gradual onset are more likely to have comorbid psychiatric disorders (such as major depression and anxiety) than patients with sudden onset of symptoms.

They also note that in another study, CFS patients with gradual onset had a significantly greater incidence of stressful life events occurring in the year just prior to symptom onset, relative to CFS patients with sudden onset.

Analysis of level of fatigue and illness severity showed no significant differences between the sudden vs gradual CFS groups.

CFS subjects with sudden onset tended to experience more difficulties in memory (particularly verbal memory) than subjects with gradual onset of symptoms.

Thank you @Hip - This is what I had been wondering, the numbers. I had thought it was something like 3 to 1, sudden onset vs. gradual but looks it's closer to 2 to 1 - interesting. I know it's a small study.

As I stated before, I had extremely slow onset, 13 years, but I did have lifelong severe anxiety/stress resulting from childhood/adolescent trauma, and a pretty severe extra stressful "life event" in the months prior to first symptoms onset. (I've since dealt with much of this using EMDR and something called Faster EFT, both of which I found to be much more effective than regular "talk" therapy alone, after years of just plain talk therapy)

And I don't have memory or other cognitive problems. So I fit the profile of this study group no doubt!

 

[Mary]

@duncan - It's well-established that childhood trauma adversely affects the developing brain and bodily systems. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3968319/) I think this is a legitimate area of research, and I think anything which adversely affects the brain and immune system could contribute to the development of ME/CFS. I think my immune system was damaged by chronic severe stress, which perhaps let otherwise relatively harmless ubiquitous viruses do a number on me which led to the development of ME/CFS. I don't know if this is accurate, it's all I can figure, because I never had the severe infection that so many of those with sudden onset did. Mine was very very slow onset.

I am NOT saying that ME/CFS is a psychiatric condition - not at all. I am saying that severe stress, in addition to causing mental problems, also can cause very real physical damage including immune problems, which no amount of counseling or CBT will remedy and which perhaps can contribute to the development of ME/CFS.

I understand very well how the above could be misconstrued as saying that ME/CFS is a psychiatric condition, but it's not what I'm saying at all. And I know we have to be very careful with this line of thinking because of idiots like Wessley who do incalculable damage with their baseless theories.

Someone who has a crap immune system is much more likely to get the flu or other viruses. Their crap immune system didn't cause the flu, but it made them susceptible. Something similar may be in operation with ME/CFS, or not - but only research will tell.

 

[Hip]

The point is that the type of onset indicates that the immune system was compromised or had a weakness to it before the infection occurred. The answer to this disease must lie in our bodies before the infection occurred. There must be something common to this pattern but it doesn't seem to be related to the type of microorganism. More about how healthy our immune system is at the time of the infection.

I believe Professor Jonathan Edwards is making the point that in a chaotic system, you can have what appear to be random occurrences. The weather is an example of a chaotic system: a hurricane can arise, but there is no specific cause for any given hurricane that you can trace it back to.

So if aspects of the immune system function as chaotic systems, then you might expect the system to be randomly thrown into some disturbed states every now and then, states which underpin disease. So some subsets of ME/CFS might be like that: they appear, but have no cause that you can trace them back to.



Regarding microorganism: when you get infectious triggers of ME/CFS, it is related to specific types of microorganism, but not to others.

If any old random pathogen could trigger ME/CFS, then you'd expect that rhinovirus (a cold virus) would be the most frequent triggering infection associated with ME/CFS, because colds are the most common infections that we catch: usually healthy people catch colds several times a year. But in fact rhinovirus is never implicated in ME/CFS: I have never heard of one case of ME/CFS appearing after catching a cold.

 

[arewenearlythereyet]

I believe Professor Jonathan Edwards is making the point that in a chaotic system, you can have what appear to be random occurrences. The weather is an example of a chaotic system: a hurricane can arise, but there is no specific cause for any given hurricane that you can trace it back to.

So if aspects of the immune system function as chaotic systems, then you might expect the system to be randomly thrown into some disturbed states every now and then, states which underpin disease. So some subsets of ME/CFS might be like that: they appear, but have no cause that you can trace them back to.



Regarding microorganism: when you get infectious triggers of ME/CFS, it is related to specific types of microorganism, but not to others.

If any old random pathogen could trigger ME/CFS, then you'd expect that rhinovirus (a cold virus) would be the most frequent triggering infection associated with ME/CFS, because colds are the most common infections that we catch: usually healthy people catch colds several times a year. But in fact rhinovirus is never implicated in ME/CFS: I have never heard of one case of ME/CFS appearing after catching a cold.[/QUOTE

First look up the definition of pathogen and maybe read up a bit more about microbiology and perhaps we could have a sensible conversation

 

[Hip]

First look up the definition of pathogen and maybe read up a bit more about microbiology and perhaps we could have a sensible conversation

I know the definition of pathogen. Do you know the definition of patronizing?

 

[Barry53]

Perhaps such chaotic system descent into disease does happen; and perhaps it could be responsible for some ME/CFS subsets. So in such cases, ME/CFS would appear to arise randomly.

But sudden onset ME/CFS following viral infection is so common that you would be hard pressed to explain this in terms of a random etiology based on chaotic systems.

Just a thought. What if there is a progressive degradation of stabilising influences, and that peoples systems manage to remain stable for quite a while, albeit less and less so as they get closer and closer to the tipping point. Then finally one too many of the stabilising restraints gives, and the system's functionality collapses? Like guy ropes breaking one by one on a tent in a storm - the more that break the more likely the other ones are to break, until the final few maybe go all at once. And for whatever reason with ME/CFS, maybe that last straw is often an infection of some kind?

 

[duncan]

It's not for you to decide what other members can or cannot write on this forum. If I want to discuss psychiatric comorbidities, that my prerogative.

Agreed.

So in this study they found:
31% of CFS patients are gradual onset
69% of CFS patients are sudden onset

This is your quote, and it is on topic. I had no problem with it.

They found that CFS patients with gradual onset are more likely to have comorbid psychiatric disorders (such as major depression and anxiety) than patients with sudden onset of symptoms.

They also note that in another study, CFS patients with gradual onset had a significantly greater incidence of stressful life events occurring in the year just prior to symptom onset, relative to CFS patients with sudden onset.

These sentences are also yours, they do not appear to be on topic, and it is these I objected to.

You repeatedly take threads like this one off topic trying to enforce you own personal idea of what is appropriate for discussion on this forum, or what studies can or cannot be cited

Kind of ironic claim, given the two previous sentences.

It's well-established that childhood trauma adversely affects the developing brain and bodily systems. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3968319/) I think this is a legitimate area of research, and I think anything which adversely affects the brain and immune system could contribute to the development of ME/CFS. I think my immune system was damaged by chronic severe stress, which perhaps let otherwise relatively harmless ubiquitous viruses do a number on me which led to the development of ME/CFS. I don't know if this is accurate, it's all I can figure, because I never had the severe infection that so many of those with sudden onset did. Mine was very very slow onset.

Ok. @Mary, I suspect the same might be said of brain cancer. I had a family member who died of it after fighting for two years. He endured an aggressive tumor. It cause him pain and anxiety and depression. It caused him to convulse. Not once did anyone try to attribute his brain cancer to his personality type, or to stress (although he had just undertaken a new job in a remote location), or to childhood trauma, despite his anxiety and depression etc. Not once did anyone suggest his convulsions were nothing more than functional movement disorders. Why? Because they had a visible and acknowledged cause.

PwME do not yet have this luxury. Accordingly, I think it good to remember the context of our medical politics, of our forced and prejudiced reality - if only because of the very same reasons you cited. I think you appreciate that. My comments were a reaction to @Hip's remarks about increased stress and comorbid psych problems associated with gradual onset, which I cannot help but wonder if it is little more than scientific over-reach.

The bottom line is that valuable stats were provided about sudden vs gradual onset, and that was what you were after. I apologize for the sidetracking.

 

[arewenearlythereyet]

I know the definition of pathogen. Do you know the definition of patronizing?

Perhaps look up "opportunistic infection" ? I'm sorry if you feel I'm being patronising...just frustrated by your inability to have normal discourse or debate using facts. Please accept my apology?

 

[Hip]

@arewenearlythereyet

I don't have any difficulty understanding the ideas you presented: that there may be a pre-existing immunocompromised state in some people, which then causes pathogens in common circulation to infect these people harder (perhaps by penetrating more deeply into tissue compartments or cell types), thereby triggering ME/CFS.

Indeed, I tend to agree that this may be common way in which ME/CFS starts, at least in some subsets. One of the most fascinating observations made by Dr Chia is that people who are inadvertently and incorrectly given a course of corticosteroids during an acute viral infection are at high risk of developing ME/CFS, most likely because of the immunosuppressive effects of corticosteroids. Dr Chia says he sees hundreds of patients whose ME/CFS started in this way.

So cortisol immunosuppression + infection seems like a recipe for triggering ME/CFS.

I also wonder whether this might explain the association of a period of stress just before the onset of ME/CFS: we know that stress induces the release of cortisol, so stress automatically puts you in an immunosuppressed state. Then if you happen to catch an infection during this time of stress-induced immunosuppression, that may put you at higher risk of developing ME/CFS. (@duncan, I know you love psychogenic etiologies, so this is especially for you!)

Mycotoxins are also known to cause immunosuppression, and mold has been linked to ME/CFS. Again, it could be that if you catch an infection while immunosuppressed due to mold exposure, that increases the risk of the infection triggering ME/CFS. Dr Brewer's research indicated that ME/CFS patients were much more likely to report prior mold exposure from water-damaged buildings than healthy controls.

So immunosuppression or immunomodulation from factors such as corticosteroids, stress, or mold may well be part of the equation of ME/CFS.

My own ME/CFS started after I had a serious chronic exposure to organophosphate pesticides, and then I was hit by a virus, most likely an enterovirus, which has a long history of association to ME/CFS. Now pesticides also have immunosuppressive effects, so again my own case of ME/CFS looks like it might be due to the same immunosuppression + infection equation. Research in Scotland showed that significant organophosphate pesticide exposure increases the risk of developing ME/CFS by fourfold.

Nevertheless, some pathogens are definitely more associated with triggering ME/CFS than others. So the type of pathogen also appears to be part of the equation of ME/CFS.

 

[duncan]

@Hip, thank you for thinking of me. I am blushing, which is a purely physiological phenom once we discard Cartesian Dualism.

 

[Mary]

Agreed.

This is your quote, and it is on topic. I had no problem with it.

These sentences are also yours, they do not appear to be on topic, and it is these I objected to.

Kind of ironic claim, given the two previous sentences.


Ok. @Mary, I suspect the same might be said of brain cancer. I had a family member who died of it after fighting for two years. He endured an aggressive tumor. It cause him pain and anxiety and depression. It caused him to convulse. Not once did anyone try to attribute his brain cancer to his personality type, or to stress (although he had just undertaken a new job in a remote location), or to childhood trauma, despite his anxiety and depression etc. Not once did anyone suggest his convulsions were nothing more than functional movement disorders. Why? Because they had a visible and acknowledged cause.

PwME do not yet have this luxury. Accordingly, I think it good to remember the context of our medical politics, of our forced and prejudiced reality - if only because of the very same reasons you cited. I think you appreciate that. My comments were a reaction to @Hip's remarks about increased stress and comorbid psych problems associated with gradual onset, which I cannot help but wonder if it is little more than scientific over-reach.

The bottom line is that valuable stats were provided about sudden vs gradual onset, and that was what you were after. I apologize for the sidetracking.

Hi @duncan - I realize it can be an extremely slippery slope when one brings emotional issues into the equation. My now ex-husband had seen me wrestling with the emotional aftermath of early (and not so early) trauma, so when I developed full-blown ME/CFS, he essentially insisted it was all in my head, if only I would try harder, etc., and of course he's now my ex. He only just recently (after 14 years apart) acknowledged that ME/CFS is a real physical illness and not all in my head.

I'm sorry about your family member who died of brain cancer. I've had a similar experience, and unfortunately have heard of armchair shrinks who like to blame the cancer (or other illnesses) on the victim, their emotional state etc.

 

[Barry53]

This may be a very naive question, given my lack of medical knowledge, but could antihistamines be implicated? Do they weaken the immune system? If so, is there any known correlation between ME/CFS and people with hay fever, eczema, etc?

 

[duncan]

Hi @duncan - I realize it can be an extremely slippery slope when one brings emotional issues into the equation. My now ex-husband had seen me wrestling with the emotional aftermath of early (and not so early) trauma, so when I developed full-blown ME/CFS, he essentially insisted it was all in my head, if only I would try harder, etc., and of course he's now my ex. He only just recently (after 14 years apart) acknowledged that ME/CFS is a real physical illness and not all in my head.

We have all heard of theories of stress causing or contributing to cancer. Perhaps there is merit to the idea. A key difference is that the focus on my family member's brain cancer was the brain cancer, i.e., surgery and chemo and radiation therapies. Not its cause. Just the terrible illness itself.

With ME/CFS, as we all know, today far too many clinicians would throw our arses to the bps wolves. There is a shallowness of thought involved here (I am not talking about any PR members) where if a psych condition is associated with a controversial disease or disorder in any capacity, then an entire mental brush is sometimes liberally applied to the disease. It is intellectual laziness.

I agree, btw, with @Hip that all of the anxiety and depression etc are biologically rooted, and it only makes sense that if you have a neuro-immune disorder, or say brain cancer, or neuroborreliosis, or...well, that any manifestation or faculty of the brain can suffer and present accordingly.

 

[arewenearlythereyet]

@arewenearlythereyet

I don't have any difficulty understanding the ideas you presented: that there may be a pre-existing immunocompromised state in some people, which then causes pathogens in common circulation to infect these people harder (perhaps by penetrating more deeply into tissue compartments or cell types), thereby triggering ME/CFS.

Indeed, I tend to agree that this may be common way in which ME/CFS starts, at least in some subsets. One of the most fascinating observations made by Dr Chia is that people who are inadvertently and incorrectly given a course of corticosteroids during an acute viral infection are at high risk of developing ME/CFS, most likely because of the immunosuppressive effects of corticosteroids. Dr Chia says he sees hundreds of patients whose ME/CFS started in this way.

So cortisol immunosuppression + infection seems like a recipe for triggering ME/CFS.

I also wonder whether this might explain the association of a period of stress just before the onset of ME/CFS: we know that stress induces the release of cortisol, so stress automatically puts you in an immunosuppressed state. Then if you happen to catch an infection during this time of stress-induced immunosuppression, that may put you at higher risk of developing ME/CFS. (@duncan, I know you love psychogenic etiologies, so this is especially for you!)

Mycotoxins are also known to cause immunosuppression, and mold has been linked to ME/CFS. Again, it could be that if you catch an infection while immunosuppressed due to mold exposure, that increases the risk of the infection triggering ME/CFS. Dr Brewer's research indicated that ME/CFS patients were much more likely to report prior mold exposure from water-damaged buildings than healthy controls.

So immunosuppression or immunomodulation from factors such as corticosteroids, stress, or mold may well be part of the equation of ME/CFS.

My own ME/CFS started after I had a serious chronic exposure to organophosphate pesticides, and then I was hit by a virus, most likely an enterovirus, which has a long history of association to ME/CFS. Now pesticides also have immunosuppressive effects, so again my own case of ME/CFS looks like it might be due to the same immunosuppression + infection equation. Research in Scotland showed that significant organophosphate pesticide exposure increases the risk of developing ME/CFS by fourfold.

Nevertheless, some pathogens are definitely more associated with triggering ME/CFS than others. So the type of pathogen also appears to be part of the equation of ME/CFS.

I also believe that stress immediately preceding onset can be a factor but that there are many factors that help tip us into onset. Typically it seems that the stress needs to be removed prior to you getting the infection. The thing which is unknown I guess is why some people are susceptible and others not? And why some people, 40-50% have a dragged out series of infections whereas others have one sudden? Here is a list of some microbes that are opportunistic which I think probably have a higher instance particularly in gradual onset?

• Aspergillus sp.
• Candida albicans
• Clostridium difficile
• Coccidioides immitis
• Cryptococcus neoformans
• Cryptosporidium
• Cytomegalovirus
• Geomyces destructans (bats)
• Histoplasma capsulatum
• Isospora belli
• Polyomavirus JC polyomavirus, the virus that causes Progressive multifocal leukoencephalopathy.
• Kaposi's Sarcoma caused by Human herpesvirus 8 (HHV8), also called Kaposi's sarcoma-associated herpesvirus (KSHV)
• Legionnaires' Disease (Legionella pneumophila)
• Microsporidium
• Mycobacterium avium complex (MAC) (Nontuberculosis Mycobacterium)
• Mycobacterium tuberculosis
• Pneumocystis jirovecii, previously known as Pneumocystis carinii f. hominis
• Pseudomonas aeruginosa
• Salmonella
• Staphylococcus aureus
• Streptococcus pneumoniae
• Streptococcus pyogenes
• Toxoplasma gondii

I think the viruses are underrepresented here due to them being so under diagnosed generally.

My grandmother who had RA succumbed to pneumonia and it was this infection that escalated the ra and seemed to finish her off at the age of 48. This was attributed at the time to her not recovering completely from a bout of the flu and going back to work too early while her immune system was weak. I wonder whether this is similar for some of us? We are susceptible to getting CFS/me...something happens that makes our immune system compromised...we get me.

In my case I definitely succumbed to staph aureus and had the skin outbreaks early on before I got sick with CFS. I also know that staph was part of my normal skin flora when I was healthy. I think some microbes are different but I'm not sure they trigger the disease ...I think we may have it already, just lying dormant for when the right set of circumstances arise to allow symptoms to develop. The virus makes us weak and then the disease takes over.

 

[Forbin]

But sudden onset ME/CFS following viral infection is so common that you would be hard pressed to explain this in terms of a random etiology based on chaotic systems.

The idea might be that the "potential" for developing ME has no infectious trigger. Some small, random event occurs which has the potential to spiral out of control. The various infections associated with ME may appear to be the "trigger," but they may just be mechanisms that can quickly cause the potential to spiral out of control. Without the potential, those infections can't foment the process that ends in ME.

A random pebble on a hill might have the potential to precipitate a large mound of snow, but there needs to be a snowstorm. No snowstorm, no snow mound - but also, no pebble, no snow mound - regardless of the snowstorm. [Perhaps gradual onset is a lot of little snowstorms over time.]

Unless I've got the metaphor all wrong.