The Saphir-Whorf Hypothesis in ME: how words define our subjective experiences and perpetuate prejudice and misunderstanding

[draft article]

It’s all tiredness

Simplification of an entire illness into the concept of fatigue.

See blog draft: A misrepresented illness, more PEM less fatigue

Doublespeak

“BPS” when used by psychosomatisers is such an Orwellian twisting of words.

There’s nothing “bio” about their beliefs, it’s all psychosocial, but by having “bio” in the name, they claim to be the “moderate” middle ground while the “extremist” “activists” claim the illness is entirely biological.

“Holistic” meaning “psychological”

it’s “shrödinger’s somatic symptom”. When it is used between professionals, it nearly always means psychogenic, but when a patient asks what it means, the doctor will say physical.

“healing”, “medically-unexplained”, “rewire your brain”, “software not hardware” etc. (All terms that sound innocent on their own but are used with negative connotations)

these are the kind of linguistic tricks the people oppressing us have continually used to keep credibility.

Functional

Functional

Specific Drafr Article: Old wine in new bottles, “Functional” as a prejudiced euphemism for “Hysterical”

Symptoms as subjective complaints

Reminds me of Nath that keeps on saying pwME are “complaining” about X, Y, Z instead of a more obvious “suffering from” or “experiencing”.

PEM defined as a “subjective” worsening of symptoms. But patient expierence is PEM is a worsening of the entire illness, including symptoms, and functional baseline (capacity for triggering more PEM.) Sometimes it does not go away and leads to a permanent worsening of the condition.

The Problem with Overfocusing on Symptoms

I feel like the discourse, the research, and pretty much everything and anything around Long COVID and ME focuses on the “symptoms” and not the functional disability.

I am not disabled by symptoms alone; I am disabled by a profound functional limitation driven by post-exertional malaise (PEM). The primary barrier isn’t the severity of individual symptoms but the inability to exert beyond a narrow threshold without severe consequences.

A lot of discourse and people talking about the disease focus on symptoms, and their severity, while nearly ignoring an aspect of functional disability. Even studies trying to characterise the disease or outcome measures for trials sometimes seem to forget the “disability” part and focus on the patient’s symptoms, which doctors often frame as “complaints”. It seems to be a form of medical reductionism, which means in a lot of the case the essence of our experiences as patients are missed out on. A doctor might see us and think “tired, belly hurts, can’t sleep, don’t like sports”…

We are then viewed by professionals and researchers as a collection of ‘complaints’ rather than the profound disability we experience. This framing makes it easier to psychologise or dismiss our condition.

I was emailing a researcher recently and asked them what they think the odds are we find a cure within the next 20 years. They said that isn’t extremely likely but a treatment that alleviates most symptoms by around 50% is definitely a possibility. But to me, someone who can’t talk, is bedridden, 50% more or less symptoms is obviously a change, but it doesn’t fundamentally change much, at the end of the day, I’m still stuck in my bed isolated from the world. A treatment that can improve functional capacity by 50%, even if my symptoms stay the same, now that would be a profound lifechanger.

Why are we focused on the symptoms, and not the disability? (and the phenomenon of PEM, which seems to be the driving factor behind the disability)…

I’ve been thinking about this more, and perhaps this is pushed by pharmaceuticals.

It’s much more profitable to have to “treat” every single symptom a chronic illness patient has with drugs, than to find a single drug which gets down to the root cause and treats the illness.

Symptomatic treatment is like best case scenario for pharmaceutical profits. You have drugs that don’t fix the illness (so lifetime customers) and your drugs are generic and treat only symptoms, you you have a large and diverse market.

https://www.cnbc.com/2018/04/11/goldman-asks-is-curing-patients-a-sustainable-business-model.html

Patients as Activists

Painting Patients as untrustworthy, therefore our agency to define our experiences is removed.

“militant” hostile defensiveness “activists”

Most ludicrously “anti-recovery activists”

[From Anonymous S4ME commenter]

Media coverage of pwME often positions anyone asking for fairness as an “activist”, which has the effect of making us seem radical or extreme. “Campaigner” is a tad more neutral, and “advocate” seems better still. But I would argue that the best approach is to avoid that framing altogether. The reality is, the majority of pwME are asking for the same stuff – it’s not actually just a nebulous group of “activists”. Portraying it that way makes those who speak out seem like they’re on the fringes, rather than representative of the whole. It also makes the message more impersonal. So the ideal solution would be referring to us as a community/group of people first, and then adding clarity about who else is included, if we’re talking about more than just the community directly affected. So, we’d have “people with ME” instead of “ME activists”, and if we needed to broaden it, add “and their carers/allies”. If talking about specialist clinicians, we’d say “ME specialists” and we could add qualifiers (some, most, 25% of, etc) to be more specific.

Focusing on “positivity”

People and the media love focusing on “positive” stories and recovery stories because they are feel good. Also people who are able to share their experiences have most likely recovered. They are systemically biased towards positivity.

When our real experiences and struggles are negated under the guise of “positivity” it becomes a problem.

Examples:

Conforming to Concepts healthy People can Understand

‘Boom and bust’ is another example. Very few patients would describe the activity that caused their PEM as a ‘boom’. It can imply they are behaving irresponsibly. They may have simply laughed for a few minutes or sat up and cleaned their teeth. https://bsky.app/profile/profmarkfaghy.bsky.social/post/3lcuiqtzgws2a