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

[arewenearlythereyet]

Myself I have some doubts whether the staged onset, described as a "two-phase illness onset, which began with a sharp deterioration and subsequent improvement in phase one, that was then followed by another deterioration of symptoms in phase two," is really a separate type of onset.

ME/CFS sometimes has ups and downs, and to me this two-phase staged onset sounds like it could be a sudden onset, after which there was some improvement for a while, followed by a return to the initial illness baseline. So if we consider a staged onset to be just a type of sudden onset, then the study you mentioned above in effect found that:

25% of CFS patients are gradual onset
75% of CFS patients are sudden onset

These are figures comparable to the other study.


Only when you decide to ignore some of the papers presented and rewrite them ??


MS is thought to autoimmune.

Jury's out on that one...just saying it doesn't make it true...

 

[duncan]

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.

Suggestive of garbage correlations, or worse, garbage insinuations.

MS is thought to autoimmune.

By some.

 

[duncan]

if we consider the fact that sudden onset ME/CFS can appear very quickly, within a timescale of a few hours to a few days, and typically after a flu-like illness, what does this rapid appearance of ME/CFS tell us about the pathophysiological mechanisms driving this disease?

Arguably about as much as the fact that it can appear over a period of time or in stages.

 

[Hip]

Suggestive of garbage correlations, or worse, garbage insinuations.

Or it may just more simply be because a lot of ME/CFS patients do indeed suffer with various psychiatric comorbidities.

My ME/CFS was gradual onset, and I have a large amount of psychiatric comorbidities, as do many ME/CFS patients on this forum. In fact I would say these psychiatric conditions cause me hugely more suffering that the ME/CFS; and in terms of disabilities, I find my psychiatric comorbidities are at least as disabling as my ME/CFS symptoms, if not more so.

Most of my psychiatric comorbidities appeared to be caused by the same virus that triggered my ME/CFS, so in fact you would call them neuropsychiatric comorbidities (ie, underpinned by physical dysfunction in the brain).

In my case, I don't think my neuropsychiatric comorbidities are caused by ME/CFS, because they appeared even before my ME/CFS symptoms manifested (the virus rapidly precipitated these neuropsychiatric conditions first, and then only some years later did I develop full ME/CFS).

 

[duncan]

Or it may just more simply be because a lot of ME/CFS patients do indeed suffer with various psychiatric comorbidities.

As do stage 4 lung cancer patients, or TB patients, or you name it. But you won't find psychiatric comorbidities in most studies of those conditions, even though their gravity might generate psych issues - nor should you see an emphasis on psych issues in ME/CFS studies, regardless of onset. It's misleading.

 

[Hip]

As do stage 4 lung cancer patients, or TB patients, or you name it. But you won't find psychiatric comorbidities in most studies of those conditions - nor should you in ME/CFS studies, regardless of onset.

Really? So can you explain why there are hundreds of studies that come up on PubMed when I search for: psychiatric | depression | anxiety | mood multiple sclerosis ?

 

[duncan]

MS is a poor example. It wasn't all that long ago that MS was considered a psych disorder - in fact, it still is by some old school stalwarts.

Do you really want to debate this? We need to come out from under the weight of the psych misdiagnosis, and until we do, every study which puts forth this relationship potentially does us damage.

Attempting to establish such a correlation between onset types seems even more repugnant since it could - possibly without warrant - falsely differentiate subgroups.

 

[Hip]

MS is a poor example.

OK, then perform the same research on psychiatric | depression | anxiety | mood cancer and you still get hundreds of studies.

There is nothing wrong with studying psychiatric comorbidities in disease. Psychiatric conditions such as depression and anxiety can cause a lot of suffering, so they should be studied.

However, what most ME/CFS patients rightfully take exception to is the notion that psychiatric conditions could psychogenically cause or help maintain ME/CFS. That is a different thing. I think we all here generally view ME/CFS as an organic physical disease, not a psychogenically caused condition.

I don't think the paper I referred to is suggesting ME/CFS is psychogenically caused.

 

[duncan]

@Hip, the paper you linked to could be interpreted as saying one can differentiate between onset types by prevalence of psych comorbidities. Or, it could be seen as suggesting that gradual onset pwME suffer from more psych problems, thereby mitigating or marginalizing or qualifying their claims. Regardless of what is inferred, it appears charged with psych overtones.

As for psych ties to studies of other diseases - I would counter that those papers exploring psych ramifications represent the minority of studies for those diseases; whereas for ME/CFS, they are sadly the standard to beat - they represent the majority. Each additional one tilts public opinion or misunderstanding in the wrong direction.

 

[arewenearlythereyet]

Surely the correlation between different onset types has nothing to do with the psychological and more about the immunological or perhaps the biochemical? it seems we have stronger leads than this .....a virus is probably a factor but it could equally be something else...the only connection we have is that people get infected with something ( Ebv, herpes, an entero, staph) at some stage and the immune system is compromised at different degrees and at different rates. By understanding and accepting different onsets we can hopeful explain the mechanics of the disease? I am getting a bit weary with gradual onset being dismissed or figures being manipulated because it doesn't fit with a particular pet theory of the moment....this isn't good science imho

 

[Jonathan Edwards]

That certainly is an interesting concept: a latent asymptomatic autoimmunity that was present for years, but which suddenly flares up and manifests symptom as a result of an infection, or some other immunostimulatory event, like for example vaccination.

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.

 

[Barry53]

May not be as clear-cut as it seems. My wife seemed to contract it quite suddenly following an operation that coincided with a nasty bout of flu a day or so after. But looking back we wonder if there were earlier signs - balance trouble staying on her bike a few times when stopping? Maybe there are earlier vulnerabilities that increase predisposition?

Edit: Came into this thread cold, so my post here is only in response to the original post.

 

[Barry53]

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.

I am guessing that just the same as in many physical systems, biological systems maybe also have the concept of noise? Signals are rarely completely quiescent, there is always a degree of random perturbation, albeit often very small. If you then combine that with a positive feedback mechanism (thereby inherently unstable), there is no chance of setting the system to its one-and-only extremely sensitive balance point, because the noise disrupts if from that. Like trying to balance an inverted pendulum - you might just hit on its precise balance point, but it would have to be a very special noise-free environment for it to stay there very long.

 

[purrsian]

Myself I have some doubts whether the staged onset, described as a "two-phase illness onset, which began with a sharp deterioration and subsequent improvement in phase one, that was then followed by another deterioration of symptoms in phase two," is really a separate type of onset.

ME/CFS sometimes has ups and downs, and to me this two-phase staged onset sounds like it could be a sudden onset, after which there was some improvement for a while, followed by a return to the initial illness baseline. So if we consider a staged onset to be just a type of sudden onset, then the study you mentioned above in effect found that:

25% of CFS patients are gradual onset
75% of CFS patients are sudden onset

If graded onset exists, I would consider that I was graded onset. However if it doesn't, I definitely fit in to gradual onset, not sudden onset. Although I didn't fit in to the "two-phase illness onset" you described, mine was many small phases over time. It had a series of stressors that declined my overall health gradually - ie. I got an infection, got better and assumed I was completely healthy again but in retrospect, my overall health never quite got back to the same level. Each additional stressor declined the overall health just a little bit. I didn't have PEM and what I'd consider to actually be ME until several years in. When I did finally get symptoms I'd consider to be ME, it didn't happen overnight and I can't remember a particular stressor, I just kept gradually getting worse.

So perhaps some people who consider they had graded onsets would fit into sudden and some would fit into gradual? To me, I just can't fit into sudden onset in any form as at the time, I honestly had no idea why I was gradually getting worse whereas people with sudden onset tend to be able to identify an infection or other stressor that suddenly brought on symptoms. However, if we were to assume some graded onsets from that study were sudden and some were gradual, we would still see a majority as sudden onset.

It's nice to know though that gradual onset isn't some super rare thing. When I was first sick, all I read was things about how it's a typically sudden onset disease and all about those "type A, energetic, overworking" types that get this disease. When you aren't really sure if this is the disease you have or not, it's really disheartening to feel like you're different to all other sufferers. If gradual onset is only found in 25% of patients, it's a sizeable portion and is comforting to know that we are a pretty normal part of the patient population

 

[Hip]

Each additional one tilts public opinion or misunderstanding in the wrong direction.

There may be a danger of that, but that is also the danger of ignoring the very real suffering of ME/CFS patients with comorbid conditions such as depression or anxiety. In a forum poll, 37% of ME/CFS patients here reported being depressed. This is not something you can sweep under the carpet. This is a subject that should be discussed on forums like these, which are here to help ME/CFS patients understand, and hopefully to ameliorate in some way, their symptoms and their suffering.

For me, depression is a real struggle, and I have trying for years to find some suitable treatments. Unfortunately a lot of the standard drugs do not seem to help, or make me worse. If I do find some effective treatment, you can be sure that I will post a thread about it, as it may potentially help 37% of patients here.

 

[duncan]

It is one thing to declare you are concerned about psych conditions that might arise because of a chronic disease such as ME/CFS. It is quite another to endorse research that can be interpreted as an attempt to ascribe psych characteristics as components or predictors of specific subgroups of ME, as the study you linked to seems to do.

It is clearly objectionable to even suggest a correlation when there is such rampant medical gerrymandering going on at the expense of ME/CFS patients. These studies can do more harm than good.

You want to speak to secondary psych issues? Knock yourself out. I applaud you.

But when you conflate that laudable effort with promoting garbage stats or claims that ME/CFS sufferers with gradual onset have emotional baggage associated with "stressful life events" within a year of onset - suggesting a causal relationship - well, that is not likely to bring about the helpful response you may imagine it will.

 

[Hip]

It is quite another to endorse research that can be interpreted as an attempt to ascribe psych characteristics as components or predictors of specific subgroups of ME, as the study you linked to seems to do.

First of all, I don't provide "endorsements" to studies. Discussing a study does not mean you endorse it.

Secondly, there is nothing wrong with research finding a correlation between a tendency to having psychiatric illnesses and a specific subgroup of ME/CFS (namely the gradual onset subgroup). This correlation may be of particular interest to ME/CFS patients who have psychiatric comorbidities such as depression.

That does not mean I agree with all the ideas or hypotheses in that study; but I do find it interesting that the study found the gradual onset subgroup experiences more psychiatric symptoms.

You want to speak to secondary psych issues? Knock yourself out. I applaud you.

You have lost me there. "Knock yourself out"?

 

[duncan]

First of all, I don't provide "endorsements" to studies. Discussing a study does not mean you endorse it.

Yeah, I'm gonna have to call BS on this particular instance. You tended toward the findings, now be honest.

Secondly, there is nothing wrong with research finding a correlation between a tendency to having psychiatric illnesses and a specific subgroup of ME/CFS (namely the gradual onset subgroup). This correlation may be of particular interest to ME/CFS patients who have psychiatric comorbidities such as depression.

I disagree. I think there is a boatload of issues with it.

that does not mean I agree with all the ideas or hypotheses in that study; but I do find it interesting that the study found the gradual onset subgroup experiences more psychiatric symptoms.

Yes, I got that loud and clear. You seem to have a fondness for all things psych, and are inclined toward some sort of relevance. I do not share your fondness, nor do I embrace their relevance outside of secondary flotsam.

You have lost me there. "Knock yourself out"?

Yankee colloquialism. It means go for your goal with gusto.

 

[Hip]

You seem to have a fondness for all things psych, and are inclined for some sort of relevance. I do not share your fondness, nor do I embrace their relavence outside of secondary flotsam.

That's because you would appear to care for no-one but yourself. You may not have psychiatric symptoms, therefore you may not have experienced the hellish misery they can bring. So you call them "secondary flotsam," in an insulting and highly dismissive way to those who suffer them. Apparently it is only your own symptoms you are interested in. But the psychiatric symptoms you blithely dismiss can be an all-encompassing hell for some patients.

 

[duncan]

That's because you would appear to care for no-one but yourself

Curious observation. Peeved, are we?

you may not have psychiatric symptoms,therefore

you may not have experienced the hellish misery they can bring

I have my share.

So you call them "secondary flotsam", in an insulting and highly dismissive way to those who suffer them

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.

Apparently it is only your own symptoms you are interested in. But the psychiatric symptoms you blithely dismiss can be an all-encompassing hell for some patients

I share many of these symptoms, and their severity. But I keep them distinct from ME/CFS. My brother who had stage 4 lung cancer did the same. Everything in its proper place, lest you conflate and suffer for it - as did that study you linked to earlier. Natelson...Geez.