POLL OPEN! Terminology, Definitions, and Criteria

[taniaaust1]

I'm curious to know what the difference is betwen CFS and ME? I have heard people say it is severity, but given that ME fluctuates this has never really convinced me as it would suggest someone can change from having one condition to the other.

I personally do not think the difference between CFS and ME can be based on severity and I would assume there would be many others who do not think that either.

"CFS" can be being caused by so many different things, so many missed other illnesses. Some of them just as severe as ME so it is possible to have one who has a CFS diagnoses who may be in fact be sicker then another person who has a ME diagnosis. I think its a case by case thing.

The difference I see is in the "symptom complex", the amount of different systems of the body affected, the actual grouping of the symptoms (with post exertional P.E.N.E aiding the diagnoses).

I do believe its true thou that "many" ME cases are worst then "most" CFS ones but that simply isnt always the case hence ME and CFS can never be separated on severity. You can get a bedridden CFS person who does not have ME.

 

[Dr.Patient]

I'm not talking about the view from doctors or criteria. From the view point of the patients, however, are we not all in the same boat?

 

[taniaaust1]

I'm not talking about the view from doctors or criteria. From the view point of the patients, however, are we not all in the same boat?

I dont really understand what you are getting at with this post (you need to explain better, my brain cant work out the relevence of this post to the thread) but yeah of cause both those with CFS and ME are in the same boat and too often being treated unfairly by governments (in biased ways) and others etc.

 

[SOC]

I'm not talking about the view from doctors or criteria. From the view point of the patients, however, are we not all in the same boat?

Yes, we are all in the same boat with regards to not getting appropriate medical care and dealing with social stigma. However, we are probably not all in the same boat with regard to symptoms, progression of the illness, or the nature of appropriate treatment.

 

[Gingergrrl]

I'm not talking about the view from doctors or criteria. From the view point of the patients, however, are we not all in the same boat?

@Dr.Patient I think we are all in the same boat and I am not sure if your question is trying to quantify who has the most symptoms or is the most severe?

I think it is a risky question and that you can't really compare who has suffered the most between people with two different diagnoses or with the same diagnoses.

I don't think the check lists should ever be used in a divisive way between patients and we should all support each other. Not sure if that is what you meant?

 

[Dr.Patient]

@Dr.Patient I think we are all in the same boat and I am not sure if your question is trying to quantify who has the most symptoms or is the most severe?

I think it is a risky question and that you can't really compare who has suffered the most between people with two different diagnoses or with the same diagnoses.

I don't think the check lists should ever be used in a divisive way between patients and we should all support each other. Not sure if that is what you meant?

That is what I am talking about, shouldn't we all be supporting one another as patients suffering the same illness ( though with different predominant symptoms, and different levels of severity), instead of using these variations to divide ourselves?!?!

 

[Gingergrrl]

@Dr.Patient I may be naive but I haven't felt any divisiveness here on the board. There are definitely people here of both lower and higher functional impairment than me and people with different viruses (EBV, Lyme, etc) different symptoms (cardiac/POTS/OI) vs pain/headaches vs everything under the sun but the common link is the inability to produce energy, PEM, and the complete loss of the life that we once knew. I think that puts us all in the same boat.

 

[Dr.Patient]

@Dr.Patient I may be naive but I haven't felt any divisiveness here on the board. There are definitely people here of both lower and higher functional impairment than me and people with different viruses (EBV, Lyme, etc) different symptoms (cardiac/POTS/OI) vs pain/headaches vs everything under the sun but the common link is the inability to produce energy, PEM, and the complete loss of the life that we once knew. I think that puts us all in the same boat.

Thank you! I'm glad you understand what I mean, hope others can see our viewpoint as well!

 

[Gingergrrl]

Thank you! I'm glad you understand what I mean, hope others can see our viewpoint as well!

I really think most people here have that view point and disagreements over what the name of the disease should be called are a moot point until someone discovers the bio marker or mechanism behind the disease.

 

[Dr.Patient]

My theory is trying to rename the disease based on the present ICC criteria, and discovery of biomarkers and mechanisms may take a very long time!

 

[Gingergrrl]

My theory is trying to rename the disease based on the present ICC criteria, and discovery of biomarkers and mechanisms may take a very long time!

I think all the names are bad and I like what my new CFS Doctor said "Viral reactivation due to immune system impairment" (or something like that.)

 

[Cheesus]

Studies have shown that many who have CFS have been wrongly diagnosed and have another illness, this is happening in a fairly large number of CFS diagnoses hence CFS people do not always have ME.

I interestingly I was recently rediagnosed by a doctor who has written two papers on misdiagnoses. I think he found the first time around 60% of people he diagnosed were initially misdiagnosed, and the second time around it was 40%.

It is this same doctor who says I do not fill the ICC criteria anymore (where in the past I have), and has diagnosed me with, and I quote, "A CFS type illness". I have pulled him up on this and sent him an email for him to explain exactly what it is he means, I have yet to have a response but I am sure one will be forthcoming eventually.

I think @SOC 's assessment that there are lots of grey areas is pretty much spot on the money. The criteria are a guide: something we have to use until there are biomarkers. It does its best to ensure it isn't simply a diagnosis of exclusion, but it is limited in what it is capable of.

@taniaaust1

so may have a completely different "undiscovered" new illness at this point

The question is, is that 'undiscovered' illness simply a subcategory of ME that we will tease out in the next few years? Is the central dysfunction different, or do we simply have a highly heterogenous group of patients?

 

[Valentijn]

It is this same doctor who says I do not fill the ICC criteria anymore (where in the past I have), and has diagnosed me with, and I quote, "A CFS type illness". I have pulled him up on this and sent him an email for him to explain exactly what it is he means, I have yet to have a response but I am sure one will be forthcoming eventually.

I'd disagree with him about your ME diagnosis no longer being appropriate. If you're still symptomatic, and have had definite PEM at some point, I'd call that ME. Symptoms don't have to be present 24/7 every day of the year to fulfill a disease's criteria.

 

[Sidereal]

I don't get PEM if I am pacing myself very strictly. In exchange for a PEM-less existence, I've had to accept that my true level of functioning is much much lower than I could have ever imagined. It took time and effort to accept these severe limitations. It took even longer for skeptics around me to come to terms with my activity levels. I've had to stop doing basic activities of daily living like going to the grocery store or travelling on public transport which I used to do when I was ostensibly functioning at a higher level but feeling terrible and crashing constantly.

Many ME patients are in denial about the true extent of their disability and try to do more than they are capable of, the opposite situation to major depression. Many ME patients also do not have the social and/or financial supports to just quit everything, drop out of life essentially and recline all day with their feet elevated. So they live in a permanent state of PEM simply because the activity required to stay alive pushes them above their activity ceiling at which cellular damage occurs.

This is true of severe and very severe ME patients also. When I was severe and bedridden, the basic metabolic demands of staying (barely) alive kept me permanently crashed and pacing was not possible. I had extreme symptoms at all times.

These days, I will go as far as to say that if I keep myself on a very tight leash for several days in a row, I can have times where I don't feel "fatigued" at all and feel almost normal... that is, until I try to do something that involves an even trivial amount of muscle work like going for a 10-minute walk or standing still at a kitchen counter for more than a few minutes at a time. This brings all the symptoms crashing back. Yep, still sick.

On a "good day", therefore, I do not fulfil the ICC but a "good day" only comes about after days or weeks of doing virtually nothing. To my mind, the question should be, "Which ICC criteria does the patient fulfil if they attempt to engage in premorbid levels of physical and mental activity?" In my case, all of them, but having lived with this disease for 20 years, I have learned to manage it to avoid symptom flares so I thankfully don't have to endure all those symptoms on a daily basis, but it has come at a very steep price of total disability.

 

[Cheesus]

@Sidereal

That is my experience too. Six months ago I started working with an NHS physio and the first thing she did was show me how much energy I am acutally using each day. I thought I was resting well, but I was actually watching TV and on my laptop all day. Each evening I could barely lift my arms and woud have horrible noise sensitivity and eye pain.

I cut TV out, getting a lot more complete rest and using audiobooks/podcasts for entertainment and drasticaly reducing my time in front of the computer (though i still struggle with this). The result has been mine tonsils are no longer inflamed, my noise/light sensitivity has disappeared, and I now seem to be gaining stamina and energy. With an increase in energy comes the increased chance of small dips as I begin to test my new limits, for instance yesterday I ventured into the garden to get some good old fashioned natural vitamin D. I then lost self control and ended up spending ages online (I blame this thread). I am a little more tired today, but certainly not experiencing the crippling sickness I did 6 months ago, and expect to bounce back by tomorrow or Friday.

To begin to move forwards I first had to take a big step back.

"Which ICC criteria does the patient fulfil if they attempt to engage in premorbid levels of physical and mental activity?"

Probably all of them and more

 

[Nielk]

@Dr.Patient-

It would help if you would explain your reason/aim for this thread and poll. Is it to discuss the ICC particularly? Is it to find a proper name? Is it just to see what people's theories?

Although you state that you do not seek to divide us, (There is no kinship like the one we share!) you have made some veiled comments admonishing us for not using our common patients' voice. Although PR is not an advocacy group, we have an entire section on PR devoted to advocacy. Members have individually or with other advocacy groups taken many actions in the past and have used their voices collaboratively. Lately, PR has testified at the IOM. As a newcomer to this group, I would suggest some of the following reading:

If you are interested in looking into the ICC here at PR, I would suggest reading the many threads here discussing it like this one.

A timeline of the name change effort, here.

The recommendation for a name change by the name change working group (2003)

For a thread discussing the name, you may be interested reading this.

This is the thread discussing what PR members would like the IOM to know.

This is the thread with PR's testimony to the IOM.

As far as which disease is this - CFS or ME ? I would suggest reading Mary Dimmock's testimony "Which disease is HHS studying" here.

For a history of the disease, I would suggest reading "Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic" by Hillary Johnson.

As many have pointed out before me here, the set up for this poll is way too complicated. I would suggest to break it up and ask one or two well laid out questions at a time.

 

[Dr.Patient]

I interestingly I was recently rediagnosed by a doctor who has written two papers on misdiagnoses. I think he found the first time around 60% of people he diagnosed were initially misdiagnosed, and the second time around it was 40%.

It is this same doctor who says I do not fill the ICC criteria anymore (where in the past I have), and has diagnosed me with, and I quote, "A CFS type illness". I have pulled him up on this and sent him an email for him to explain exactly what it is he means, I have yet to have a response but I am sure one will be forthcoming eventually.

I think @SOC 's assessment that there are lots of grey areas is pretty much spot on the money. The criteria are a guide: something we have to use until there are biomarkers. It does its best to ensure it isn't simply a diagnosis of exclusion, but it is limited in what it is capable of.

@taniaaust1

The question is, is that 'undiscovered' illness simply a subcategory of ME that we will tease out in the next few years? Is the central dysfunction different, or do we simply have a highly heterogenous group of patients?

Have you made your doctor aware of, in the ICC, allowances for atypical, subgroups, and degrees of severity in ME ?

 

[Dr.Patient]

@Dr.Patient-

It would help if you would explain your reason/aim for this thread and poll. Is it to discuss the ICC particularly? Is it to find a proper name? Is it just to see what people's theories?

Although you state that you do not seek to divide us, (There is no kinship like the one we share!) you have made some veiled comments admonishing us for not using our common patients' voice. Although PR is not an advocacy group, we have an entire section on PR devoted to advocacy. Members have individually or with other advocacy groups taken many actions in the past and have used their voices collaboratively. Lately, PR has testified at the IOM. As a newcomer to this group, I would suggest some of the following reading:

If you are interested in looking into the ICC here at PR, I would suggest reading the many threads here discussing it like this one.

A timeline of the name change effort, here.

The recommendation for a name change by the name change working group (2003)

For a thread discussing the name, you may be interested reading this.

This is the thread discussing what PR members would like the IOM to know.

This is the thread with PR's testimony to the IOM.

As far as which disease is this - CFS or ME ? I would suggest reading Mary Dimmock's testimony "Which disease is HHS studying" here.

For a history of the disease, I would suggest reading "Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic" by Hillary Johnson.

As many have pointed out before me here, the set up for this poll is way too complicated. I would suggest to break it up and ask one or two well laid out questions at a time.

Thank you, appreciate your input! One of the moderators said PR does not advocate, and we all have different situations, and then I saw that PR, indeed, testified at the IOM. So, I was confused, and now, it is clear to me the stance of PR. At that time, I was also not given any threads where name changes were discussed, like you did now!

Also, some "ME" patients think they are different from "CFS" pts. Historically, some patients may have been diagnosed CFS, but they are not, in my opinion, 'unwelcome' to join this forum. I'm sure if these patients are taken, and the ICC applied to them, they will land in our boat. My idea is to unify people, not 'alienate' some.

As far as the poll, in another post on this thread, I discussed reasons for a different name. Everybody wants to approach the name change with a different agenda, hence the disagreement. Sorry, cannot post that link, I'm on a tablet now.

 

[Valentijn]

Also, some "ME" patients think they are different from "CFS" pts. Historically, some patients may have been diagnosed CFS, but they are not, in my opinion, 'unwelcome' to join this forum.

Yes, there are many patients here without typical ME - some with CFS, some with cognitive but not physical ME, and many with completely different problems who come here to share and benefit from information that gets discussed here.

They're very welcome to be here, but with the caveat that their spleens will be extracted and eaten if they start trying to convince us that they feel so much better if they exercise, hence we must exercise to feel better too!

I'm sure if these patients are taken, and the ICC applied to them, they will land in our boat. My idea is to unify people, not 'alienate' some.

Patients are quite capable of reading the CCC or ICC and determining if it applies to them. If it does, it doesn't matter if some clueless GP in the US or a psychobabbler in the UK diagnosed them with "CFS". ME is ME, whether or not the doctor gives the patient that label.

But I don't see the point of unifying idiopathic fatigue patients with ME. The two groups have very little in common, other than the "F" word. If any progress is going to made in ME research, it needs to focus on ME, not on a broad group of patients with one minor and common shared symptom.

 

[Cheesus]

Have you made your doctor aware of, in the ICC, allowances for atypical, subgroups, and degrees of severity in ME ?

He should be fully aware. He is the regional CFS/ME 'Champion' for the NHS and has more letters after his name than a bowel of alphabetti spaghetti. I am pretty sure his usage of the term 'CFS' is a political rejection of Myalgic Encaphalomyelitis, something he likely deems to be an inaccurate portrayal of the illness.