CFS vs ME comparison chart

[TigerLilea]

When you say that it's not clear to me what you mean. Do you mean that you were diagnosed with illness that matched symptoms that fit some diagnostic criteria that refers to cfs and not ME?

I agree that the diagnostic categories leave things for us unclear. I was not sudden (1 time onset) but I have ME by my understanding of it.

I mean that my doctor diagnosed me with CFS. That another doctor confirmed that diagnosis. And then a rheumatologist again confirmed the diagnosis. Which criteria any of them used I have absolutely no idea.

 

[JaimeS]

The scale is probably just "disease", not a scale of different variants or severities of "ME". Not every chronic fatiguing illness is going to be ME.

I wouldn't assume so, but I think this is an equally viable theory.

 

[taniaaust1]

I still think ME/CFS is the best way to describe the illness for now. Given that we don't even know what causes the illness it seems odd to be trying to divide up groups under certain names already. I know the name CFS is awful but it is what it is for now.

Its very important for research reasons. If they are separate things like many of believe, it would be hard to find the abnormalities in research if the two are lumped together in research studies. Many of us believe this is why there are so many conflicting studies in ME/CFS research.

It can also be important to know as ME people as a group have things relevant to them which may not be relevant to the CFS group eg there are drugs etc which ME people commonly react very badly too and should avoid.. this situation isnt the same for the CFS group. eg I didnt know to avoid anesthesia drugs with adrenaline in them as I have ME and hadnt seen that ME info at that point of time ..the bad reaction from these almost put me into hospital.

CFS group "may" be able to do GET and we all know it has helped some as we do get some here occassionally saying it did, ME group respond badly to GET. Im yet to hear a ME person say that standard GET helped them.

The same recommendations shouldnt be given to these different groups What may be good for one, may be very bad for the other.

 

[taniaaust1]

Even for a non-native English speaker like me it is obvious that to name a thing and to create a thing are two completely different notions. I assume that whoever wrote that document has proper understanding and property of the words. The author did not say "the disease was named CFS for the first time " but said "CFS was created in the late 1980s and did not exist prior to this time". And what about the fact that during thousands of years of human history this disease did not exist but it appears "naturally" and suddenly in 1980's!

CFS was in fact "created" . it was created firstly by making up a name and secondly by picking certain symptoms to put under that name (while leaving out other symptoms) to create a 'new" illness known as CFS.

Note, the symptoms picked confused things as there was something called ME which some were studying.. which is an illness which had been seen appearing in outbreaks. This got altered with what symptoms they choose for CFS

In fact in England some ME patients ended up not being able to called CFS ones as they were then rejected on the grounds of them having testable abnormaltiies, which in fact were ME abnormalities and in their criteria that ruled them out for a CFS diagnoses, ME has many testable abnormalities which may appear in it. Note in CFS info they dont tend to usually put down it appears in outbreaks and you go to any doctor and ask him if he does, 90%+ would say no. Yet ME is well know for appearing in outbreaks.

Later on to add to the confusion the term ME/CFS was brought in...so just threw everything together.

CFS studies often stop ME patients from participating due to their ME abnromalities eg a ME patient with POTS caused by the ME may not be allowed to enter a CFS study due to the POTS.

 

[Mij]

When they figure out the medical term for the delayed PEM mechanism, I want my illness to be named after that distinctive feature-nothing else.

 

[taniaaust1]

I agree with most things on those lists except severity and onset to can be confusing.

eg I had a sudden fairly severe when it was hitting but gradual illness. My illness did come on suddenly but I kept on recovering between bouts of it at first.

Seeing CFS seems to be those with missed diagnoses, those who may not be diagnosed with other things due to atypical presentations of their illness or consist of those who may have different undiscovered yet diseases. I cant see why some CFS cases wouldnt be quite severe depending on what the missed diagnoses or whatever was. (CFS is a waste basket diagnoses for anything which just fits a few symptoms which the doctors cant work out).

Some with ME go throu a remission (Dr Cheney has said this and this is what did happen to me at one point). So I dont think one can judge between CFS and ME by severity.

Though ME could be more likely to lead to death as it appears complications are more likely to happen. (when complications happen in CFS patients thou, drs at that point are often able to work out what they really have and the CFS diagnoses is then removed. For this reason CFS isnt a life threatening condition as such.. unlike ME).

 

[Cheesus]

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.

Perhaps those criteria capture people of differing severity, hence the variation in inflammation.

However I do wonder if some people in group two simply had chronic fatigue rather than Chronic Fatigue Syndrome. At the lower end of the severity rating I tend to think there are a huge breadth of potential aetiologies and dysfunctions, some of which but not all could be mild versions of ME. Whilst I do not think there is currently a distinction between CFS and ME, there is very clearly a distinction between people who regularly feel tired and CFS/ME.

I once saw an interesting hypothesis from Jonathan Edwards, which was that there are different types of ME that cause CFS. I think that is an interesting idea, as it would paint CFS as the endpoint and ME(s) a potential cause. In this scenario you could say ME causes CFS, Lyme causes CFS, Ehlers-danlos causes CFS, mycotoxin sensitivity causes CFS, etc.

What do others think of that?

 

[Justin30]

I really want to point something out think is brushes aside in many cases.

The seed of the body is the brain and can be influenced by the body.

Whether gradual, instant, progressive, etc. I truly think this comes down to one thing this and more so pertains to ME.

With such global dysfunction there are 2 theories that make complete sense:

1. Mild to severe undiagnosed Encepholopathy or Encepholomylietis as described. Both have viral, bacterial, fungal and autoimmune triggers.

2. Mitochondondrial disease = Main symptoms Encephalopahthy or Encephalomylietis

This are the only 2 real disease spectrums that cause global dysfunction. I say this cause the disease types cause Neurological issues, hormone problems, immune system problems, heart, liver, kidney, pancreasis, GI, ANS, SNS, PNS and essentially the Central Nervouse system and the brain.

NOTE: Depending on the degree of the insult or insults depends on how much damage is done or dysregulation is created.

CFS: MUDDLED MULTIPLE DEFINITIONS

Nutrient imbalance, hormone imbalance, stress, poor sleep quality, obesity, diet, undiagnosed psychiatric illness, muscle abnormalities and glcogen issues, undiagnosed unrelated disease, GI compromised but repairable potentially, to much ecercise, genetic disease, etc.

Essentially not ME...I truly believe this now...

I dont see it making sense another way but I could be wrong.

What needs to be determined:

- Encephlopathy tests easy to use and screen for mild cases
- Early Intervention
- for those affectived severely tailores regenerative medicine including ME Centers of Excellencene and Stem Cell Reaearch as a an options to those that have the means
- Clinical Trials
- Funding.....this has not just havibg the NIH say well we will make it available through RFIs. Lipkin can get funds nor can Dr Davis....what does this say about the NIH 2 biggest names in the field having to source out private funds.....makes my head spin...

Bottom line Dr Jay Golstein seen 25k to 28k patients. Said this is likely a limbic encephalpathy. Nothing was ever done with his research. Fact Limbic encepholopathy has verying degrees and like i noted to earlier is causes by many insults and can correct itself.

Energy needs to be refocused by patients, Drs, ME Groups, Governments, etc.

How many more years do we want to wait talking on PR though useful. Had helped many but is not a solution to the millions suffering.

The community is coming together but is stangeringly disjointed.

I appreciate your help but stepping back really opens your eyes to what is and whats not taking place in a timely manor....click ticks uhhmm 70 years or more now..

This is delemna of to much talk and way to little action....I commend those that are doing actionable solutions but very view in the grand skeem of things based on disease burden....17 to 22 million people...unreal

 

[JaimeS]

However I do wonder if some people in group two simply had chronic fatigue rather than Chronic Fatigue Syndrome.

ALL the people in group two had chronic fatigue as a symptom rather than chronic fatigue syndrome. Chronic fatigue syndrome group was group 3.

I once saw an interesting hypothesis from Jonathan Edwards, which was that there are different types of ME that cause CFS. I think that is an interesting idea, as it would paint CFS as the endpoint and ME(s) a potential cause. In this scenario you could say ME causes CFS, Lyme causes CFS, Ehlers-danlos causes CFS, mycotoxin sensitivity causes CFS, etc.

What do others think of that?

I think JE and I may be viewing the term ME differently. I think ME is the endpoint (or CFS) and there are many, many different kinds of triggers; but it seems like on the surface of it we may agree, we're just saying it a little differently.

This are the only 2 real disease spectrums that cause global dysfunction

I wouldn't go that far, but I'd say that there is some evidence of mitochondrial abnormalities in ME. I don't have enough scientific experience to state with confidence that those two issues are the only ones that could cause multi-system abnormalities.

Essentially not ME...I truly believe this now...

The issue IMO is that we've got too much 'belief' and not enough research. As you say, not enough action that's coordinated. Part of our problem is these belief structures we build in order to explain our illness. Then, we don't want to get behind / support any research or any direction that goes against the framework we believe to be right and true.

I'm not one of those 'all ideas are good ideas' people. I know that there are some theories floating around out there that are more or less plausible based on what we do know right now. I even have my own ideas about what causes ME, but my ideas are unproved theories: I am not sure of them, or anything approaching sure.

Dr Jay Golstein seen 25k to 28k patients. Said this is likely a limbic encephalpathy. Nothing was ever done with his research.

It's got to be published somewhere, first: he has to be the one to have done something with it!

This is part of the problem. We've got a lot of very knowledgeable clinicians. They're the ones on the front lines seeing patients, but they don't publish. If they don't actually publish, their work isn't viewed as research by the broader scientific community, if anyone ever finds out about it at all.

Whether it was published in a book or a newsletter or newspaper article doesn't make it viable or more reasonable, just because it reached the public eye. It's got to be research. It's got to be published in a reputable journal to count. And after the PACE debacle, the data's got to be public for me to trust its conclusions.

-J

 

[Snowdrop]

I follow the arguments here regarding ME vs cfs.
At the end of the day if there are two categories to be had I'm still for changing the name cfs even if it doesn't apply to me (and by that I mean me)
--on the grounds that a few well placed people deliberately choose that term to denigrate patients and trivialise their illness. It should be obliterated from our collective knowledge and only trotted out when it's needed as a lesson on what not to do when naming an illness.

 

[Justin30]

This is part of the problem. We've got a lot of very knowledgeable clinicians. They're the ones on the front lines seeing patients, but they don't publish. If they don't actually publish, their work isn't viewed as research by the broader scientific community, if anyone ever finds out about it at all.

Whether it was published in a book or a newsletter or newspaper article doesn't make it viable or more reasonable, just because it reached the public eye. It's got to be research. It's got to be published in a reputable journal to count. And after the PACE debacle, the data's got to be public for me to trust its conclusions.

Agreed...so I guess in the grand scheme of things personal opinions differ which is fine....there actionable solutions are just so far and few between and information research is happening on such a small scale.

 

[Kinesis]

I follow the arguments here regarding ME vs cfs.
At the end of the day if there are two categories to be had I'm still for changing the name cfs even if it doesn't apply to me (and by that I mean me)
--on the grounds that a few well placed people deliberately choose that term to denigrate patients and trivialise their illness. It should be obliterated from our collective knowledge and only trotted out when it's needed as a lesson on what not to do when naming an illness.

Here here!

Maybe we could change CFS to mean "Completely Fracking Shitty" and just take it from there...

 

[Justin30]

CFS is a waste basket diagnoses for anything which just fits a few symptoms which the doctors cant work out

With this said a thorough workup should be done to eliminate all possible treateable diseases.....i rarely think this is done. Slapping ME in someones chart can as has ruined the lives of way to many....neglingence as i see it

 

[Seven7]

I disagree, I am classic ME: PEM, low nks, high B cells, white lesions on brain... Classic Ramsey. But mine was gradual

 

[Justin30]

I disagree, I am classic ME: PEM, low nks, high B cells, white lesions on brain... Classic Ramsey. But mine was gradual

I dont know if you are refering to my posts?

 

[JaimeS]

I disagree, I am classic ME: PEM, low nks, high B cells, white lesions on brain... Classic Ramsey. But mine was gradual

I'm not sure who you're disagreeing with, but same here. 'Punctuated equilibrium' but PEM, low NK function, white matter lesions. Otherwise a textbook case.

 

[Justin30]

I'm not sure who you're disagreeing with, but same here. 'Punctuated equilibrium' but PEM, low NK function, white matter lesions. Otherwise a textbook case.

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.

Many AI diseases are linked to Mito problems to.....thats why the body breaks down....same thing happens with aging.

Its just good to know @Inesester7 you have made strides over the years and your contributions are invaluable.

 

[Seven7]

I'm not sure who you're disagreeing with, but same here. 'Punctuated equilibrium' but PEM, low NK function, white matter lesions. Otherwise a textbook case.

Ah sorry the chart says that ME sudden vs CFS slow onset

 

[taniaaust1]

With this said a thorough workup should be done to eliminate all possible treateable diseases.....i rarely think this is done. Slapping ME in someones chart can as has ruined the lives of way to many....neglingence as i see it

it can never be done, you will never be able to get everything ruled out as there are so many different things which can go wrong with the body, different areas and doctors never know it all. Often they wont even know what specialist to send a person too. Even if you see a specialist in the right field that specialist wont have knowledge of all the illnesses in his field...and then there are atypical presentations of things.

there is also so many different illnesses which are fringe illnesses on could say as many doctors dont even believe in them yet as they havent been accepted by the normal medical profession..these things are also making some sick. Most drs wont rule them out eg adrenal insufficiency doesnt even exist in our normal medical world, and Addison's disease doesnt happen till the adrenals are something like 90% destroyed.

I personally think it is an impossibility to get everything ruled out.

 

[Justin30]

it can never be done, you will never be able to get everything ruled out as there are so many different things which can go wrong with the body, different areas and doctors never know it all. Often they wont even know what specialist to send a person too. Even if you see a specialist in the right field that specialist wont have knowledge of all the illnesses in his field...and then there are atypical presentations of things.

there is also so many different illnesses which are fringe illnesses on could say as many doctors dont even believe in them yet as they havent been accepted by the normal medical profession..these things are also making some sick. Most drs wont rule them out eg adrenal insufficiency doesnt even exist in our normal medical world, and Addison's disease doesnt happen till the adrenals are something like 90% destroyed.

I personally think it is an impossibility to get everything ruled out.

Good points but there are so many panels that cover a large array of dysfunction...i find it hard to believe that at least a thorough work up can be done.....many things can be missed....but its like anything miss one thing leave it untreated and the snowball just keeps growing....

I personally thinks this has happened to many patients. Especially those that are very sick....

Just a thought