The use of the labels ME, CFS, ME/CFS

Dear Guido @Guido den Broeder ,

My view as a physician is that this description is of a disease that does not actually exist. It brings together a number of historical speculations but in the last two decades as far as I know nobody has found any good evidence for the existence of such a disease. My reading of Ramsey's description is that he correctly identified people who developed a long term illness that can be called ME/CFS but that his idea that this followed an acute encephalomyelitis was wrong. I do not remember what Dr Hyde was supposed to have food but I don't think it has been borne out by anything else much and I remember looking at the paper and not being very impressed.

We really do not have anything to go on in terms of immune dysfunction. All the suggested findings have fizzled out. And I do not know what evidence there is for a vascular problem.

I have certainly never met a person with this speculated disease. What I have met are people with the syndrome of chronic illness almost universally called ME/CFS amongst scientists now.

Maybe this differences of view do not matter but I do worry that people newly diagnosed may be misled into thinking they have an encephalitic disease when they do not.

 

You have to feel sorry for "ME". So much is expected of it. Has to describe all cases of a particular acute infection, all analogous acute infections, the chronic conditions arising from those original cases and all analagous cases-some more analogous than others. Covid 19 has it easy in comparison.

 

CFS is precisely the same thing as ME. The only different is the name. The US chose a different name that used in the British Empire.

There are no other differences. Zero. And ME unfortunately is burdened with a name that seems highly inaccurate, given the Latin.

Chronic Fatigue Syndrome is the name I use relate to my illness. Please respect that.

And please accept that there are cultural differences on this one.

The only difference is the name.

We here in the States had to deal with people conflating CFS with generally fatigued for a long time.

It took us much push back and advocacy, but that's a perception issue we've largely won.

So to see a similar conflation on a ME/CFS website is saddening.

Bill

 

I just think we need to have some idea what is going on.

 

Don't worry, Bill, I think the majority of people on s4me share your view.

 

I stand by what I said. It honestly baffles me that people cannot see what I am saying. If you are told you have CFS, you may have ME but you may not. I have never met the definition for CFS never having had fatigue. I do have myalgic encephlomyelitis with myalgia, neurological sequelae from inflammation and nerve problems.

People seem to feel it is an attack on anyone who has been diagnosed and told they have CFS or a cultural problem but it is not. Those of us who lived through the sudden transition where ME became a new disease of fatigue with no scientific input have fought for years for people who were labelled with the awful label of CFS. It is thanks to those fighters that CFS has not become simply a point on the scale of chronic fatigue and that the connection with energy metabolism was not lost. To accept CFS feels like accepting oppression simply because it has gone on for years.

In no way do I feel that ME is a more serious disease than CFS or that there is a heirarchy. I do believe that any doctor who diagnoses a patient with CFS is ignorant or insulting since it it the equivalent of being told you have chronic cough syndrome as if that told you anything when you could have TB or asthma or COPD or lung cancer. It is the medical profession I have issue with.

There are 2 overlapping circles with CFS and ME with a section in the middle where it is the same disease with 2 labels. When a test is found there will be people who do not have whatever they call it then. It may be someone like me with very little fatigue but a lot of disease or it may be people who have fatigue but little else, yet I look forward to it. We are all sick, neglected and abused by the medical profession.

I don't want to offend anyone diagnosed with CFS but likewise, our position and the reasons for it should be respected.

I am to ill to debate it. We may just have to agree to differ.

 

Moved post

I have never said anything of the sort. CFS is always a misdiagnosis, so it is entirely possible that someone with this label has ME. Statistically, nowadays the odds may be something like 5%. It differs between countries and physicians/researchers.

 

The ICD-10-CM, which is used by US hospitals, has ME at G93.3 while CFS is R53.82. It is not possible for one disease to have multiple entries. However because some people still claimed they were the same, they have added explicitly that the two exclude each other. It seems to me that the debate, if there ever was one, is over. That many doctors in the US are unwilling or incapable to diagnose patients with ME is a different issue.

I don't have fatigue either. To our questionnaires, no respondents with ME ever mentioned fatigue as one of their medical complaints.

 

This statements seems entirely baseless to me, one of these false ideas that circulate because they aren't being challenged properly in certain circles.

Presumably by CFS you mean either the Fukuda definition or what is generally known as ME/CFS nowadays (the entity described in the IOM report). I'm aware that a portion of CFS or ME/CFS cases are misdiagnoses, but don't recall ever seeing any data that would back up the idea that all of them are misdiagnoses. The situation seems to be closer the opposite: most cases of ME/CFS can never be explained better through another diagnosis no matter how much medical investigation is performed.

 

Why? Which false ideas? What circles? I'm not in any circle, as far as I know.

The entity described by the IOM is SEID. Both the IOM report and Fukuda clearly say that CFS is a research diagnosis, not a disease, and should not be used clinically.

My statement pertains to CFS. I have no idea what ME/CFS is supposed to be. Why would your observation with regard to ME/CFS imply the same for CFS?

 

@Guido den Broeder this idea that CFS is always a misdiagnosis, on what is it based on?

 

Dr. Byron Hyde states that "CFS" is given as a diagnosis because the illness has not been properly investigated.

 

It was very pescient of Acheson et al to define a disease which could only be diagnosed with technology invented about thirty years later.

 

Because ME/CFS is an agreed term that means 'that which can be either called ME or CFS'. The term is purely a concession that recognises that different people prefer one term or the other.

If you want to be well informed about what physicians think about ME/CFS then you need to know what ME/CFS is supposed to be because clinicians who devote their attention to ME/CFS and research into it are more or less unanimous in their usage the dual term now.

A few rather ancient US private physicians still talk of ME but nobody takes them very seriously. Psychiatrists talk about ME and CFS in all sorts of ways that suggest that they do not know quite how they want to use the terms.

With respect @Guido den Broeder, if you want people to take note of what you say here you need to be a bit closer to the medical reality. Almost any disease can be classified in all sorts of ways under ICD systems. These are used by hospitals but in general hardly ever by doctors. Throughout my medical career I never knew what was in the ICD classification nor cared. The classification has important implications for service provision and it is good that people try hard to optimise it to ensure patients get a fair deal but it has nothing to do with a discussion about the nature of a disease.

 

You're still not saying what 'that' is.
I don't prefer one term over the other, just like I don't prefer chair over dog. The names ME and CFS are both fine, they just denote two different things.

I am quite well informed but you all say different things. That's why for accepted terms we have the ICD, so everyone uses the same terminology. ME/CFS is not in the ICD, so I basically ignore this weird amalgamate.

ME patients do. Those are the doctors that can help us.

Psychiatrists use CFS, because they see patients with that label. They don't normally see ME patients.

The ICD is mandatory for all doctors, not just those working in hospitals. Further, as I've already told you, we regularly quiz physicians and the results don't support your personal view at all.

 

It's based on the fact that CFS is a research diagnosis, to select patients with unexplained fatigue and malaise. You can't 'have' or 'suffer from' CFS, all you can is satisfy inclusion criteria for a study. The moment an explanation for your medical complaints is found, you won't get selected anymore. Patients are of course clearly ill, so the logical hypothesis is that each of them has an individual explanation, it just hasn't been found yet.

The idea that CFS would somehow be equivalent to ME comes from people who don't know about other diseases. Everyone complains about patients getting misdiagnosed with CFS, not just us. Only about 5% of the people misdiagnosed with CFS has ME.

 

I think you probably understand that the term misdiagnosis refers to knowing that a diagnosis was wrong (and not the property of being an exclusionary diagnosis or merely a descriptive diagnosis, of which there are many in medicine). You probably also know that there is no data you could cite to argue that all CFS cases are misdiagnoses.

What you probably want to express is that you don't believe CFS identifies a real pattern of illness, rather that it's a wastebasket diagnosis. Is this correct?

There is some data that I think is reliable that does show it's a real pattern of illness (Dubbo studies for example). Real enough anyway, even if misdiagnosis does occur.

 

So you know a lot about other diseases, Guido?

You are entitled to your idiosyncratic views but please be aware that dogmatic statements about a so-called disease called ME may confuse and perhaps harm other people. You have asked me what CFS is or what ME is, but it is you who are making these dogmatic statements about what these things are or are not and so far we have not heard anything that backs you up. You know what ME is, it seems. So I am saying CFS is the same, so for you there is no need to ask what CFS is. Your whole argument seems to go round and round in circles and disappear nowhere.

 

No, what I want to express is what I did express, that CFS is defined as research criteria only.

 

That makes no sense whatsoever. Whether a diagnosis is a misdiagnosis or not does not depend on whether the diagnostic criteria were created with research in mind or not.

Anyway, the Canadian Consensus Criteria considers ME and CFS as "probably the same illness", uses the term ME/CFS for this reason and was created for clinical use.