Over the past couple of weeks the media has finally declared CFS “real” via biomarkers, and simultaneously defined it out of existence with the shiny new SEID. This has bemused me and led to diverse bed meditations on the realness of CFS (in this case specifically CFS as these trails of tongue-in-cheek thought don’t all apply to the other names for whatever-it-is-that-is-wrong-with-me).
Is anything Real?
I’ll only glimpse briefly at the ontological knot of wool of questioning what is reality. Pulling on that thread is likely to be dangerous when we have so much time to think. Dreams in which I’m well feel real at the time, so my symptoms could be a literal nightmare.
Words Create Reality
A more poststructural approach of discourse creating reality is slightly more contained. How we name this thing will at least effect attitudes, and in turn the nature of research, and in turn the nature of treatment, and in turn whether or not we are still ill (in the sense of if we are considered ill and if we feel well or not). CFS could be cured out of existence as the indirect consequence of what it is renamed, and then no one would really have it…
Also I think a poststructuralist may say that where there is contradiction, and an attempt to silence alternative views, is likely to be the site of something profound (perhaps too profound to be easily captured in words or labels). Using this form of analysis CFS has got to be one of the most real diseases of the current era…
The CFS Label is Not Real
Most people who are diagnosed with CFS don’t seem to want this label themselves. Sometimes this is to do with health politics or wanting to have a label that sounds more substantial. Another prong to the un/reality of CFS is that there’s an argument to say that the label doesn’t bear a good relationship to the illness it is attempting to represent.
Chronic is OK as it does go on and on, but there is also a subtle association with malingering.
Fatigue is often not the worst symptom and sounds like “tired all the time”.
Syndrome is vague and sounds like there is little evidence. Getting a Disease is a big advance!
A consequence has been a vague diagnostic process by diagnosis of exclusion. A consequence of this has been confused research, studying people who may or may not experience the same disease process. People with medical or scientific training can then be dismissive, as it is a waste basket diagnosis, and therefore not particularly real either in terms of pointing to what is going on or effective treatment.
I have even discerned a tendency of some of those who identify their ME as distinct from CFS* to infer that CFS isn’t properly real: in an attempt to emphasise their Neurological and immune symptoms they inadvertently delegitimise the illness of people who don’t have these additional symptoms.
I sometimes wonder if in the future no-one will have CFS (or SEID) because eventually we will all be re-diagnosed with various conditions that we actually have (like my experience with PoTS). The cytokine biomarkers result makes this outcome less likely though.
When we argue that our illness is “real” people hear us being defensive about mental health problems as if we think these aren’t real problems (as in neither substantial nor biological). Whereas we are trying to communicate that this is an error of categorisation and we need different tests and treatment.
When other people say that our disability is not “real” I don’t think many of them are so cynical as to think we feel well and fake it. Of course there’s sometimes the “everyone gets tired” variation, but I think that they usually mean that what we say is wrong with us is not actually what is wrong with us. For example, we say we have CFS but it is really school phobia. We are probably in denial so won’t be able to recognise their truth when they point it out. We are then caught in a double bind about the reality of our denial, as we either agree, or our denial of denial makes the denial seem more real…
A certain breed of psychiatrist will say they follow the BioPsychoSocial Model but their discourse reveals that they actually think that your condition has become purely psychosocial and therefore in a sense unreal (they think that the Psychosocial is very real but that is a different reality from the condition we say we experience). For example, they do believe you had glandular fever, the blood test made that real, and it probably took a while to regain physical health. However, years on you are now just fearful of overdoing it and therefore a bit deconditioned. If you do some Cognitive Behaviour Therapy (or even a little Lightning Process) then you can think CFS out of existence.
Do you want my blood then?
An acid test of whether someone believes CFS is real is whether they would accept a blood transfusion from us. Official UK treatment is CBT and Graded Exercise but we have a lifetime ban from donating blood. This contradiction says a lot about the un/reality of CFS.
*People seem to have different ideas about the relationship of CFS to ME. Some people use these terms interchangeably to mean the same thing. Some people view them as distinct conditions (they have ME but NOT CFS) and my comment relates to some of this group. This is a bit different from those saying that “I have ME and CFS is so wrong it doesn’t exist” (no one has CFS). I subscribe to the view that ME is a more specific term within the broader category of CFS/SEID.