Last week I wrote a tweet, as I do probably once a day, sometimes more. The tweet read: “I’d like ‘Chronic Fatigue Syndrome’ (CFS) to be dropped as a term’. The tweet went viral and I felt like Piers Morgan – difference being I wasn’t spouting tedious commentary on Prince Harry again. Someone pass him someone new to pick on.
It came following the BBC Coronavirus special that discussed Long Covid and the parallels I’ve alluded to for the last 12 months. “I know, I know science me”. I believe the time has come to drop Chronic Fatigue Syndrome, because other long-term health conditions do not have such names. Until this is dropped doctors, employers, family and friends will continue to see this as a made up condition.
Myalgic Encephalomyelitis (ME), is one of the few chronic illnesses that has two names. Multiple Sclerosis (MS), is known as MS. Diabetes is known as Diabetes. Irritable Bowel Syndrome (IBS) is what is says on the tin. Nobody, says to someone mid IBS cycle, yes you have ‘chronic gut ache syndrome’ or ‘chronic diarrhoea syndrome’ or even ‘chronic constipation syndrome’.
When the draft National Institute of Care Excellence (NICE) recommendations for Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) were released multiple patients called for the NHS online to remove the previously thought effective treatments from the webpage. The NHS claimed that since the changes were in the draft stages, they were not wanting to change until they were set in stone.
This is ironic following the media coverage on the changes that led us to believe these were permanent and pending changes. Yet, the NHS want to keep them under wraps almost like it’s a secret and they want patients to continue to be told exercise will fix their problem, to encounter more problems along the way and more likely delaying any chances of recovery in the long term.
Whilst, revelling in my viral tweet moment I read a caption from one user whose neurologist told her the same as the above. It was like the person who did Prince Andrew’s PR was the same person handling this.
Why are medical professionals unwilling to learn and change the record? Why are so many consultants refusing to use the term ME, is it because it feels long term and cannot be scapegoated with CBT?
The critics also called for the sentence “most people go on to recover” to be removed from the NHS page since a high proportion of patients do not recover following their diagnosis. Whilst some do and some will go on and live a ‘normal’ life and forget they ever had the condition, there are also some who never do. These are the bed bound ones who are plagued by “Christ, I wish I could spend the day in bed” by non-believers.
The journey to being diagnosed with Chronic Fatigue is often misunderstood but I’ll give you a brief synopsis almost like a film critic does – and like Sex and the City 2 this also fails the six laugh test.
Most people with ME/CFS will have had either a virus of some nature, or a stressful attack, and during the initial recovery period the patient endures fatigue which usually occurs following exercise also known as post exercise malaise. It’s during this period that makes the difference for many patients because this is when some do make the recovery the NHS online wants you to believe is the normal patient journey.
Some will recover and experience what is called ‘Post Viral Fatigue’, which is becoming the buzz word like social distancing because this is where the long Covid sufferers are being grouped into. Whilst others continue and do not make the recovery, so then enter into Chronic Fatigue, also more commonly known as ME.
‘ME’ is the favoured term and this is why.
The World Health Organisation, up until the pandemic, was awfully quiet. The WHO (not the band Who, who gave us Baba o’Riley) categorise ME as a neurological condition. I place emphasis on ME, because I want the term ‘Chronic Fatigue’ to be dropped from use alongside ME.
Chronic Fatigue does apply to other conditions such as Multiple Sclerosis, Epilepsy and Parkinson’s. One would hope the classification would’ve made an ounce of difference but sadly it never did and for me and the 250,000 patients with the condition they continue to experience this misunderstanding.
The misunderstanding comes from the term ‘Yuppie Flu’ which became the media’s term for chronic fatigue. Yuppie Flu is a derogatory name that implies the condition is simply a case of burnout. It was used from the 1980s onwards, particularly following publication of an article in Newsweek that referred to it as the “yuppie flu” in print, describing it as “a fashionable form of hypochondria“. “Yuppie” is a term that came into use in the early 1980s and referred to ‘Young and upwardly-Mobile Professionals’, who were young, high-earning city dwellers.
One would link this to the way millennials are described as ‘snowflakes’ but perhaps this is me overthinking and wanting to find parallels in our way of supporting and treating those in pain or marginalised by society. This derogatory name has since become the go to remark made by many.
I recall returning to a toxic workplace following my diagnosis to be told “isn’t that yuppy flu, just think it away”. It’s comments like this which feed a cesspit of ignorance for millions. It is another reason why some live in shame, never informing employers, friends or partners in fear of judgement based on ignorance.
For me, the term ‘chronic fatigue’ feeds this very toxic and ignorant line ‘you’re just tired aren’t you?’ or in some cases “why don’t you go to bed earlier?” I’ve noticed a trend in NHS and medical pages online that persist on writing ‘exercise will make you less tired’. I should point out, people are also told to exercise to help sleep better also. Has Joe Wicks written this drivel? I think so too, because he wants you to believe exercise fixes everything.
For most patients with ME, the fatigue element is only half the problem. For ME patients, they experience issues within their nervous, immune, digestive, respiratory and cognitive systems. The complexity varies case by case like other chronic medical conditions.
Yes, some will, as previously discussed, recover. Whilst others will have to adapt and manage and, in the most extreme cases, some are left house- or even bed-bound, being tube-fed, wearing sun glasses and ear defenders due to being sound and light sensitive.
These issues are the ones that are being failed to be discussed in media outlets when the topic is mentioned. This is why patients within the ME community are angry and ironically tired with the chronic fatigue narrative because it’s wearisome.
We are more than tired.
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