CFS vs ME comparison chart

[JaimeS]

Considering just symptomology yes but we dont know what it is biologically...they dont know what it is....plus...i have now met many with AI Neuro just other AI diseases that get what u could consider PEM.

That being said not everyone gets exercise tests done in AI diseases I bet its like .001% or lower.

We know some stuff biologically. Gut microbe dysregulation seems the case no matter the study, for example.

I'm really shocked to hear about PEM in other illnesses. What were they diagnosed with?

J

 

[Denise]

I'm really shocked to hear about PEM in other illnesses. What were they diagnosed with?

J

One of the problems is that PEM has not been well characterized in ME or in any other disease, so I would hesitate to say that what occurs in patients with ME is the same as what occurs in other diseases.

 

[slysaint]

Re PEM, I think PENE is a better definition of the symptom.

http://www.me-ireland.com/diag/pem.htm

 

[JaimeS]

Re PEM, I think PENE is a better definition of the symptom.

http://www.me-ireland.com/diag/pem.htm

I agree. They refer to it this way in the ICC.

Unfortunately, it does mean 'penis' in a few Latinate languages.

Awkward.

 

[slysaint]

I agree. They refer to it this way in the ICC.

Unfortunately, it does mean 'penis' in a few Latinate languages.

Awkward.

Yes I found that out recently, which is why I thought it would be good if the powers that be could add an S for systemic.
IE PENSE ........which is 'think' in French.

 

[JaimeS]

I endorse this.

 

[slysaint]

I endorse this.

estupendo

 

[JaimeS]

One of the problems is that PEM has not been well characterized in ME or in any other disease, so I would hesitate to say that what occurs in patients with ME is the same as what occurs in other diseases.

When I first read this, I thought, "of course PEM is super-well characterized."

And then I . No, no it's really not. You are absolutely right, @Denise . It's characterized well in my head, to which the rest of the world is not privy. Which is probably a good thing.

I think that if those who worked on the CCC and ICC got together to produce a 'clinical picture' of PEM / PESE (if we just say 'post-exertional systemic exhaustion' that works too, right? It doesn't mean anything inappropriate in Urdu?) they would have no problems characterizing it symptomatically, and maybe even proposing an immunological or endocrinological 'picture'. There are several studies done post-exertionally on PWME, but no one has gotten together and said, "and together, these present as the symptom PEM".

Most of us here have seen these studies, so just very briefly they include:

• Shifts in adrenergic receptor expression post-exercise
• Marked shifts right away, at the 8 hr mark, and at the 24 hour mark (confirming that 'after 24-hr' PEM group)
• Shifts in blood pathogens after exercise, supporting a sepsis-like picture after increased digestive permeability post-exercise as in healthy controls
• Decreased blood flow to brain and heart post-exercise; decreased uptake of oxygen by hemoglobin post-exercise

What we need now is one of the infamous reviewers of ME/CFS-related issues to title a paper called 'PEM: What is the Evidence?' and put it all together so that it might be diagnosed.

-J

 

[JaimeS]

'Pese' means 'to weigh up' or 'to consider' in Spanish. I think we're okay there.

 

[slysaint]

PESE (if we just say 'post-exertional systemic exhaustion'

I think the N (Neuroimmune) is most important and gives the symptom a biological framework (can't think of the right word to use there!) so I'm still for PENSE.

 

[JaimeS]

LOL, I agree, and yet then we name two systems but then also say 'systemic'. My editorial brain does not like this.

 

[slysaint]

My editorial brain does not like this.

right now my brain does not like anything!
Ok, how about Post-Exertional Neuroimmune And Systemic Exhaustion; covers all bases

 

[JaimeS]

Okay, @slysaint now let's tackle all the other nomenclature issues in this illness!

 

[slysaint]

all the other nomenclature issues in this illness

could take a while.................es demasiado para mi cuerpo

ps just realised where I saw this before

 

[JaimeS]

Where you saw what before?

 

[Glycon]

There is some biological evidence that it's a continuum actually. Though I know I could be pelted with rotten fruit for saying so...

There was a study that measured a few inflammatory markers and divvied people up into four categories:

1) healthy controls
2) those with chronic fatigue as a symptom who didn't meet Fukuda
3) those who met Fukuda, but w/o PEM
4) those who met CCC

Those inflammatory markers slid up in just the way you'd expect as you moved from one group to the next.

Of course this is just one study and they only measured a few things. But it is enough evidence to say there are commonalities between those with Fukuda-CFS and those with ME. It doesn't 'prove' they're the exact same illness, though.

I strongly recommend to everyone interested in this issue that they read this paper:

Leonard A. Jason, Madison Sunnquist, Abigail Brown, and Jordan Reed (2015). 'Defining Essential Features of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome'. Journal of Human Behavior in the Social Environment 25, 657–674.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4817848/

They even have some handy nesting diagrams showing which percentage of CFS referrals fit which set of diagnostic criteria! (Of course, Jason et al. are a bit less impressed with the SEID proposal than I am, but nobody's perfect... )

Here is how the paper concludes:

Our challenge is to decide on which case definition to use, so that the core symptoms are clearly identified. In addition, decisions need to be made regarding whether or not a particular symptom is severe enough to qualify as occurrence of one of the required symptoms. Finally, we need to employ standardized procedures for assessing symptoms. Clearly, the scientific enterprise depends on reliable, valid methods of classifying patients into diagnostic categories, and this critical research activity can enable investigators to better understand etiology, pathophysiology, and treatment approaches for ME and CFS, along with other disorders. There is now a need for an open, transparent, and inclusive process for developing a consensus on these issues. This might be accomplished by providing support for structural capacities that set up a mechanism for ongoing data collection and interactive feedback, ones that are vetted by broad-based gatekeepers representing scientists, patients, and government groups.

In other words, people need to chill the F out about labels and concentrate on the study of the aetiology of and interactions between the various symptoms which fall under the various labels.

 

[JaimeS]

...@Glycon we seem to be running into each other a lot. Are you haunting my threads?

In other words, people need to chill the F out about labels and concentrate on the study of the aetiology of and interactions between the various symptoms which fall under the various labels.

Sometimes I agree, but funny you should quote Jason et al and then pose this argument. His research group wrote a paper showing the effect the name has on medical practitioners and how they diagnose patients who are identical on paper, but with differing diagnostic labels.

Perhaps needless to say, the CFSers came off a bit worse for wear, although not as much as I might have guessed if somebody asked me. I've mentioned elsewhere (maybe here?) that I have Google alerts out there for CFS and for ME. There is a stark difference between the content and tone of the articles for those two alerts.

The name of a thing has power.

-J

 

[Glycon]

...@Glycon we seem to be running into each other a lot. Are you haunting my threads?

Maybe

His research group wrote a paper showing the effect the name has on medical practitioners and how they diagnose patients who are identical on paper, but with differing diagnostic labels.

Sure, but name isn't the only thing that makes a difference. To say that it makes a difference isn't to say that it should be a top priority for patients or advocates...

I have Google alerts out there for CFS and for ME. There is a stark difference between the content and tone of the articles for those two alerts.

The name of a thing has power.

I suspect this has less to do with the name and more with the socio-economic differences between countries where different usages are prevalent. For instance, all the insanity stemming from England isn't due to how ME vs CFS is used there.

 

[JaimeS]

Sure, but name isn't the only thing that makes a difference. To say that it makes a difference isn't to say that it should be a top priority for patients or advocates...

If it makes a big difference in how we're diagnosed and treated, then of course it would be a priority. I wouldn't presume it did, and in fact I said very similar things before I read that study. It wasn't as though I thought it didn't matter, it was more like I thought it couldn't possibly have important and concrete consequences in the real world. L Jason designs good studies. When I read what he wrote, I couldn't deny that what we choose to call this illness does, in fact, have real consequences in the real world.

I suspect this has less to do with the name and more with the socio-economic differences between countries where different usages are prevalent. For instance, all the insanity stemming from England isn't due to how ME vs CFS is used there.

This doesn't follow, necessarily. It isn't the name itself... ah, okay, I think I've caught your perspective, here. Let me clarify what I'm saying.

I don't believe it's the name itself that instantly creates the stigma behind the illness. I think there are many factors there. However, people who like to stigmatize ME sufferers tend to use CFS because they are aware (in the US) of the public's associations, or simply believe it sounds less serious, or are ill-informed enough to not know or care what patients prefer. That all ties in to why CFS articles show up very differently in my inbox than ME articles. People who use ME/CFS or ME automatically know more about the illness, view it as a 'real thing' (Chalder calls it CFS/ME or 'chronic fatigue' when she's speaking, at least in an article that quoted her recently) and tend to know what patients prefer.

Regardless of why articles about CFS show up very differently from those that use ME, they do so. This means that CFS is associated with a picture of a less-serious illness in the public consciousness.

And this has a strong enough impact on medical professionals that, when two patients have the exact same history, name, and symptoms, clinicians are more likely to view 'ME' as an illness you can't recover from that the patient cannot help having, whereas they are more likely to believe patients with 'CFS' will recover with effort.

It makes a difference in the paper, it makes a difference in the clinic. It makes a difference.

Trust me, I wish it really didn't. When you go country-to-country it does get more complicated. However, each country in which there is any doubt that ME is an embodied illness has a name problem, even if it's not exactly the same name-problem.

-J

 

[Glycon]

@JaimeS While I certainly lack your

When you go country-to-country it does get more complicated. However, each country in which there is any doubt that ME is an embodied illness has a name problem, even if it's not exactly the same name-problem.

That is not to say that the name problem is best tackled directly in any given country...