CFS vs ME comparison chart

[Denise]

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!

@sorin - I think we may have to agree to disagree as to whether or not cfs was created as a diagnostic entity as a result of watering down of descriptions of the disease known as ME.
The term cfs suddenly appeared in the 1980s when CDC produced the overly broad definition but the disease known as ME has existed for far longer though like many other diseases was often not accurately described.
If you have not already done so, I hope you will read The Burial of ME. (See links below)
https://dl.dropboxusercontent.com/u/89158245/Thirty Years of Disdain - Background.pdf

https://dl.dropboxusercontent.com/u/89158245/Thirty years of Disdain - Summary.pdf

 

[Nielk]

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!

The author is correct in stating that HHS created CFS. It's not just the name but they fabricated an inaccurate set of criteria in order to minimize and cover up a fast growing epidemic in the 1980's.

 

[Hip]

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!

@sorin, you are missing your calling in life: you should really be working for Jesse Ventura, and his conspiracy theory TV series. They would love you on that program!

 

[Mithriel]

I was diagnosed with ME long before CFS was invented. In the days of Ramsay, Eleanor Bell etc there was a clear view of what ME was. There had been epidemics but it was now seen that there were sporadic cases as well. Patients an infection, sometimes a very mild one, and after that they became ill in a very specific way. There was serious damage to energy production systems which we now have demonstrated by CPT but the symptoms were not always apparent as serious. I believe that they could detect mitochondrial damage within a few weeks of the initial infection if they had the proper tools.

The commonest presentation was to be going along fine then having a sudden collapse (50%) recovering but always having the chance of a relapse later (25%) or deteriorating (25%) broadly speaking. Exercise problems were always there and neurological damage - it has always been classified as a neurological disease. Fatigue was not really considered, rather a collapse with too much exertion.

It was also well recognized in medicine that people often had a post viral fatigue, especially after flu, where they felt week and tired for up to 2 years before it resolved. When my husband experienced extreme fatigue after a bad flu it NEVER crossed our minds that it was the same illness I had.

Then suddenly CFS came along and fatigue was the buzz word and the illness we had was renamed and redefined. It did not even match the symptoms of the epidemic they were studying. And they sucked in ME, glandular fever and post viral fatigue as well to create a mess. A diagnosis of CFS means they have no other category to dump you into, that is why so many people get rediagnosed after months or years. It does not exist as a distinct disease but is a construct that has always favoured researcher well being not patients'

I have psoriasis, once thought of as a type of leprosy, but they are not subsets of one disease and they need vastly different treatments. When proper research is done no one will have CFS any more and we will all be positively diagnosed not lumped together by fatigue. Imagine how far we would have got fighting infections if the emphasis had been on fever - the body's response to invasion - rather than looking at the microbes themselves. Fatigue is a symptom, a description of something that tells you there is a problem in the body's workings. It is not an answer. To say someone has chronic fatigue or CFS does not tell you what is wrong. It states the problem, nothing more.

Back in the 80's the number of people with ME kept going up by a factor of 10 every time they did another definition of CFS so SEID may be a separate disease from epidemic or sporadic ME which may be rather rare. (Except it is commoner now because none of us get better!)

The sickest people, the ones who are bedridden from the start are often those with Epstein Barr which can resolve after a few years and that confuses the issue as well.

I have watched all this with horror for decades. We are all ill and I hope they start finding treatments that help us all no matter what we have.

Mithriel

 

[Hip]

Back in the 80's the number of people with ME kept going up

The incidence of ME rose dramatically in the 1980s, such that by the end of the 1980s, the incidence had risen by 5 to 8 times. There is a thread about this here:

Fivefold to eightfold increase in the incidence of ME from 1980 to 1989

 

[Mithriel]

I meant that the estimates by the likes of Wessely went up, not very clear, sorry. Nowadays I often think they include everyone who feels tired at all, well the Reeves' study did

But there were probably epidemics then and the numbers actually did increase. There were research papers and articles available then that would be interesting to go back over, so much of what is being said now was first mentioned then, (eg mitochondrial problems and things) but without the internet I don't know how many survive. I lost all my stuff in a move but I seem to remember speculation that the polio vaccine meant that other enteroviruses filled the niche that was left and those were the ones most likely to give ME.

Mithriel

 

[JaimeS]

That, along with the tone in some places makes it easy to imagine it being written by a CFS/ME sufferer who was really sick and tired of people saying it wasn't a real disease. If you never brought it to an actual patient group and that's all you'd seen you'd believe it. It looks super convincing.

But clearly it's also just plain incorrect.

Does anyone know of legit studies done among a very wide patient group that looks at the rythyms each person's illness takes? It would be fascinating to see how these things overlap in different ways.

Maybe. Maybe soon.

-J

 

[Kinesis]

Maybe. Maybe soon.

-J

Why not do it ourselves? We have all the tools here. We could begin by creating a series of polls related to symptoms and illnes progression, and then plot those points on a grid or venn diagram and see if we can find any correlations.

If the questions are good enough and the poll is complex enough, we could find out for ourselved wether there really are overlapping diseases diagnosed as cfs or if it's one illness that manifests uniquely by the data spread.

Yes? Any flaws in this thought process?

 

[sorin]

Why not do it ourselves? We have all the tools here. We could begin by creating a series of polls related to symptoms and illnes progression, and then plot those points on a grid or venn diagram and see if we can find any correlations.

If the questions are good enough and the poll is complex enough, we could find out for ourselved wether there really are overlapping diseases diagnosed as cfs or if it's one illness that manifests uniquely by the data spread.

Yes? Any flaws in this thought process?

This is an excellent idea. In the first phase we may gather the questions, so everyone can propose questions to be included in the polls.

 

[sorin]

@sorin, you are missing your calling in life: you should really be working for Jesse Ventura, and his conspiracy theory TV series. They would love you on that program!

In a true democracy any point of view should be allowed to be expressed publicly, unless we want to have a unique official view that everyone obeys to it. It is the task of people to judge themselves and not to receive prefabricated ideas.
This obsession with the "conspiracy bullshit" is inexplicable! One thing can be seen - some people like to work for the official propaganda, having or not immediate benefits from this activity. Probably you agree with me...

 

[JaimeS]

When I said maybe soon, that's because there are some people working on this, some of whom are at PR! PR's polling plugin does not have the infrastructure required to collect the kind of data we'd need in order to put together something with enough heft to be meaningful.... especially if we're hoping to link answers together to create a broader picture. Actually, this is what I see as the biggest hurdle. Even Google surveys or what-have-you isn't enough; we'd probably need something like redcap to handle the data.

So there are no flaws in the thought process about what we should do, but more how we should do it.

We have worked to get something like this off the ground in the past, and (I think) part of the issue was in time commitment and tech. Give us some time to think it through.

-J

 

[Kinesis]

When I said maybe soon, that's because there are some people working on this, some of whom are at PR! PR's polling plugin does not have the infrastructure required to collect the kind of data we'd need in order to put together something with enough heft to be meaningful.... especially if we're hoping to link answers together to create a broader picture. Actually, this is what I see as the biggest hurdle. Even Google surveys or what-have-you isn't enough; we'd probably need something like redcap to handle the data.

So there are no flaws in the thought process about what we should do, but more how we should do it.

We have worked to get something like this off the ground in the past, and (I think) part of the issue was in time commitment and tech. Give us some time to think it through.

-J

As it turns out, I happen to be friends with a dude who is a PHD in math and is utterly bored with his job. It's entirely possible that if we had enough data he would be willing to sort it out for us.

I was thinking rather than a poll, we should create a detailed questionaire and link to it in a new thread.

The main issue is coming up with a series of parameter defining queries.

To start with:
How old were you at onset?
Was the onset gradual or sudden?
If the onset was gradual, how gradual was it?
If the onset was sudden, how severe was it?

And so on. Each question would be rated 1-5 or 1-10 and so on. Then the online form would spit the data into a databank and we could then start looking at it from different directions.

I'll check with my friend about what the best platform for something like this would be and get back to y'all.

Edit: I think I've got him hooked. I'll start a new thread so we can come together and work out what questions need to be on the survey.

 

[JaimeS]

Honestly you can never have too much stats help. It would be awesome if you could connect us. PM me if/when s/he replies.

 

[Cheesus]

At this point in time no one can say exactly what ME or CFS is. Personally I think they are the same thing with different sub-sets. Others don't agree. I was diagnosed with CFS and mine came on very suddenly.

I agree. I think when we finally come to sort this out there will be a number of different illnesses with different names, and those names are unlikely to be simply ME and CFS. Trying to sort that out before we have sufficient objective data is futile.

 

[Cheesus]

This discussion reminds me of this post that @Hip made a while back, which I mentally tagged because I thought it was very good:

There is no evidence at all that ME and CFS are two different diseases, and in fact most of the researchers find this whole pernickety obsession with names rather pointless, and of no scientific merit.

The only major difference I can see between the Canadian consensus criteria (CCC) of ME, and the Fukuda definition of CFS is the fact that the CCC requires post exertional malaise (PEM) to be present before ME is diagnosed, whereas the Fukuda definition lists PEM as one of common characteristics of CFS, but PEM does not necessarily have to be present for CFS to be diagnosed.

However, I am not aware of any evidence that suggests the CCC and Fukuda definitions actually define different diseases.

Indeed, the greatest differences in symptoms are from one ME/CFS patient to another, as this disease has a huge range of severity, from totally bedbound at one extreme, to fit enough to work and have a reasonably normal life at the other. Even individual patients themselves can experience wide variation in symptom severity over the years.

Some people have the idea that ME represents the more severe end of the disease spectrum, and CFS the less severe; but this is does not make sense, because that would mean that as individual patients go from periods of severe symptoms to periods of milder symptoms, it would imply that these patients are constantly vacillating between two diseases.


Of course, disease naming and classification is very important when it comes to political issues, and the CFS classification certainly helps unscrupulous disability insurance companies withhold disability payouts from patients.

But from the scientific perspective, there probably is no difference between ME and CFS at all, and so this pernickety attitude to names is scientifically a dead end.

 

[Wolfiness]

One of the things it says is that ME onset is always instant and severe, whereas CFS is always gradual.

I hate this definition because if adopted it would exclude me from being diagnosed with ME and that would be as much of an of an injustice as including people who don't have PEM in ME trials. I have very severe ME of extremely gradual, in fact lifelong, onset.

I know Jodi Bassett died recently so I don't want to badmouth her too much but that contention alone pushes the Hummingbird site closer to fanaticism than facts. Even Byron Hyde admits some crossover in the sudden/gradual onset.

 

[JaimeS]

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.

 

[Snowdrop]

I don't think you'll be pelted with rotten fruit @JaimeS but having your virtual umbrella nearby will spare any worry.
I think it's a sliding scale too. I have zero science knowledge to back me up but I do have personal experience and my children whom I've watched grow all these years. Much to say on the subject but will have to collect my thoughts for another post.

 

[halcyon]

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

Which study is this? Did they evaluate other diseases as well? I imagine you could slide the same scale over to MS or other diseases too. Doesn't mean they are related in any way causally.

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.

 

[Snowdrop]

I mentioned my thoughts on the sliding scale because as a person with slow onset (although Jaime used the term punctuated which I find more accurate) I now easily meet the criteria for CCC/ICC ME and am housebound the only difference between now and long ago I think is one of degree of disability with regard to some of the symptoms.

For example: sleep--I had times of unrefreshing sleep but not all the time like now. I didn't have fatigue all the time because I had enough energy to get by but not enough to keep up with the really energetic types and sometimes if things got hectic I would tire but not enough to label it pathological. I experience pain all the time now--before I would have been described as having a low pain tolerance. My cognitive impairment is for me the most personally sad. There were aspects of cognition that were impaired early on but I learn to deal and compensate/create systems for working around now all that learning seems for naught and the decline of mental energy continues whereas before I could function in a way that looked normal. My daughter follows a similar pattern without the cognitive issues. She doesn't see herself as having ME--I'm not going to suggest it's ME but it looks a lot like my early days.

It's all a bit of conjecture no matter the POV until we see some real science.