Can we call ME/CFS a disease?

What about Parkinson's disease and Alzheimers' disease? As I understand it, in both cases there is an observable and objective pathology that ME/CFS does not have, but a common causal process seems to be missing in those illnesses as well.

 

@Jonathan Edwards Thanks Prof. I guess Wikipedia is not well informed either but I agree with its definition:

A syndrome is a set of medical signsand symptoms that are correlated with each other and, often, with a particular disease or disorder.[1] The word derives from the Greek σύνδρομον, meaning "concurrence".[2] In some instances, a syndrome is so closely linked with a pathogenesis or cause that the words syndrome, disease, and disorder end up being used interchangeably for them. This is especially true of inherited syndromes. For example, Down syndrome, Wolf–Hirschhorn syndrome, and Andersen syndrome are disorders with known pathogeneses, so each is more than just a set of signs and symptoms, despite the syndromenomenclature. In other instances, a syndrome is not specific to only one disease. For example, toxic shock syndrome can be caused by various toxins; premotor syndrome can be caused by various brain lesions; and premenstrual syndrome is not a disease but simply a set of symptoms.

If an underlying genetic cause is suspected but not known, a condition may be referred to as a genetic association (often just "association" in context). By definition, an association indicates that the collection of signs and symptoms occurs in combination more frequently than would be likely by chance alone.[3]

Sorry, I am on the phone and can’t quote it properly.

 

In the United States, the National Academy of Medicine, CDC, NIH and NY State Department of Health all refer to ME/CFS as a "disease".

 

There are well established common causal processes for these as I understand things. In true Idiopathic Parkinson's Disease there is depletion of dopaminergic cells in the substantial nigra. In Alzheimer's Disease there is an increase in amyloid proteins in the brain and neurofibrillary tangles, not to mention cortical shrinkage. It is true that the causal pathway is not worked out in either case but at least some of these features look to be causally linked to clinical features (dopamine deficit especially) and even if these are epiphenomena they provide pretty good circumstantial evidence for a common causal process being involved.

You might say we have the equivalent for ME/CFS but sadly I do not think we yet have anything firmly enough established.

 

Just tell them to call back.

 

No need for an apology. If the Thought Police show up, spray them with Brain Fog.

 

The CDC website under "Diseases & Conditions A-Z Index" calls CFS/ME an 'illness' and Fibromyalgia a 'condition'. Note: There is no entry for Migraine...
The NHS Scotland website A to Z common illnesses and conditions calls CFS/ME a 'condition', Fibromyalgia a 'condition' as well as a 'syndrome' and Migraine a 'health condition'.
The New Zealand Ministry of Health website don't list any of them under 'Diseases and Illnesses'.
The Public Health Agency of Canada website used to call CFS/ME an 'ilness' but the entry has been ARCHIVED. Fibromyalgia is a 'syndrome'. No entry for Migraine...
The NHS England Health A to Z website calls CFS/ME an 'illness', Fibromyalgia a 'syndrome' and 'condition', Migraine is a 'health condition'.

Looks like a real mess to me.

 

A doctor once said to me that what I had was an illness - and by that he said he meant he accepted that I didn’t feel well, not that there was something physically wrong with me. I never know when a doctor uses the term illness, condition, disease or syndrome what they actually mean by it. It seems they can choose their own definitions as it suits them.

 

I think my illness "Relapsing Polychodritis" is a good example to use in this "disease" vs "syndrome" debate.

Relapsing Polychonditis (RP) has no known biomarker, and is currently thought to be a syndrome that is autoimmune in nature. The etiology of RP is unknown.

Even with all these unknowns RP is still a respected diagnosis in the medical commmunity and considered very "real". RP is being researched by autoimmune research institutes around the world including the NIH which has on ongoing RP research program involving patients. One of the NIH doctor's heading up the NIH RP research program is an RP patient herself (with quite severe symptoms).

The syndrome is taken very seriously by doctors as it is often progressive in nature and can result in death. For many most RP'ers the pharmacologic treatment involves long-term corticosteroids in conjunction with DMARDs and/or biologics.

Just wanted to give an example to show that it can be done by the medical community. They can recognize and respect the serious nature of a condition (in this case a syndrome) in which so little is known about it and for which there is no biomarker.

 

This recent news story might be of interest to this discussion:

"Researchers define Alzheimer's-like brain disorder. LATE symptoms resembles Alzheimer's disease but has different cause."
https://www.sciencedaily.com/releases/2019/04/190430121800.htm

I hope we'll be at that stage of defining subgroup within ME/CFS, within the next decade.

 

Thought this was interesting:

Do we belittle epilepsy by calling it a disorder rather than a disease? - PubMed (nih.gov)

 

I can see what this guy is trying ti say but I think it would be foolish to muddle up the accepted meanings of terms any further in a desperate attempt to sound cosy for patients.

I think he confuses two different words - the countable noun '(a) disease' and the generic noun 'disease'. They have different meanings, as count and non-count versions of nouns usually do.

I don't think epilepsy is a disease nor is it 'brain disease' in the sense of heart disease.
All cancers are lumped together as 'a disease' because in this count sense a disease implies some common causal mechanism or process. All cancer is the disease of cell overgrowth.

Epilepsy describes recurrent fits. Fits are a process and so one might say that epilepsy is the disease of fits. But fits are the end result of a wide range of processes. When used in this way 'a disease' is expected to imply a causal process rather than the end result.

The distinction might seem artificial but the fact that the great majority of doctors would not want to call epilepsy a disease presumably means that there is a shared accepted meaning that this does not fit, even if it hard to articulate.

I can immediately see a problem with non-epileptic seizures. Would they be a disease too?
I have the strong impression that if one starts shifting the meanings of words for political reasons you rapidly find more political problems coming back to bite you in the leg.

 

In English, I think we can simply use the word illness if people find disorder or syndrome too confusing, so I largely agree with Jonathan (in Dutch we don't have the distinction illness - disease which makes things more complicated).

Just wanted to flag that the 2014 definition of the International League Against Epilepsy (ILAE) describes epilepsy as a disease and no longer as a disorder as the 2005 definition did.

Source: The 2014 Definition of Epilepsy: A perspective for patients and caregivers // International League Against Epilepsy (ilae.org)

 

I think there are potential problems with advocacy groups defining medical terms.

 

Just to clarify that the International League Against Epilepsy (ILAE) is the organisation of epilepsy specialists and researchers that also prints the scientific journal Epilepsia. So it's not an advocacy group or patient organisation and they have published several case definitions of epilepsy before.

 

I think sometimes there is a bit of a grey area here. Organisations that deal with one illness in this way may be run by health professionals but they are not necessarily representative of the view of the specialty (neurology). I don't know in this case but there are certainly some groups with meetings and journals that have a skewed perspective. Moreover, it looks from the quote that the change in terminology was designed for public image. Not a bad thing in principle but not always without problems.

Some of these organisations get major funding from private individuals, trusts, endowments etc. and I think that can skew things.

 

The guy who was head of the benefits agency then got a chair at Cardiff University (his name flashes into my mind then disappears, sorry) said that a disease is something that is physically wrong in the body but illness is a behaviour which might mean you have a disease or that you just think you do.

Disease meant you were entitled to benefits but illness did not do so automatically. the BPSers use illness as a weasel word as people think someone is telling them they are genuinely sick but it does not.

 

Mansell Aylward.

 

I think changing ME, epilepsy or whatever to a different definition won’t make them less stigmatised. This seems to miss the point. Calling it a different name won’t make the research or care better or peoples attitudes change.

Sometimes the name itself is insulting or belittling ...I don’t think syndrome, condition , illness, disease etc makes a jot of difference in this respect though.

Avoiding ‘fit” and using ‘seizure” though I think has merits since ‘fits’ seems to conjure up a Victorian view of a hysterical person in a “fit”. I.e. infers lack of self control and could be viewed as negative. Personally I don’t care what you call them. It’s more important that the neurologists are held to a higher quality standard in terms of care and research. If they were better at their job I wouldn’t mind what they called seizures or whether epilepsy was renamed “shaking syndrome”.