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Chronic Fatigue Syndrome patients — it’s time to reconsider our attitudes

Sooyoung Lee is a FY1 in Nottingham.

As a medical student, I have had the privilege of experiencing multiple specialties in a short space of time. Being a medical student can be a time where you discover and assimilate the attitudes and values of being a doctor and figure out what kind of doctor you want to be.

Among the many positive aspects of this, one less desirable theme that I noticed was the negative attitudes towards patients with a background of medically unexplained symptoms such as chronic fatigue syndrome (CFS), also known as myalgic encephalomyeitis (ME), which appear to be widespread across the specialities. These negative attitudes were portrayed in the form of passing comments made by doctors about CFS/ME patients as being ‘difficult’, as well as dismissing the severity of the pain and/or fatigue experienced by them.

… the negative attitudes towards patients with a background of medically unexplained symptoms … appear to be widespread …

As part of my National Institute for Health Research internship, I conducted a short informal survey for students and doctors advertised on social media. The 34 responses highlighted the prevalent negative attitudes and lack of medical education on CFS/ME among doctors and medical students, with over a third of participants believing it is primarily a psychological disorder. This finding is confirmed by the existing literature suggesting the widespread disbelief and lack of knowledge of CFS/ME among GPs1 as well as the lack of medical education on CFS/ME.2

As doctors we strive and believe in high-quality care for all patients regardless of background. So why then are CFS/ME patients historically known to and currently suffer misunderstanding and dismissal?

There may be several reasons. There is a long history of teaching medicine in the traditional biomedical model, which limits conditions such as CFS/ME to be properly acknowledged, especially where we have yet to find biomarkers. It may be that the lack of robust scientific evidence and guidance on management has seeded scepticism in doctors. Furthermore, perhaps we have come across challenging patients with CFS/ME with poor mental health. But is this a cause for CFS/ME or an inevitable consequence of an untreatable debilitating long-term illness coupled with lack of empathetic understanding from doctors?

Whatever the root, we are all riddled with unconscious bias — defined as ‘social stereotypes about certain groups of people that individuals form outside their own conscious awareness’.3 This term is commonly used in the context of race; however, it could equally be applied to a group of people with a particular diagnosis.

The vast majority of us are guilty of inadvertently denying CFS/ME patients of the respect and care they deserve.

As a recent graduate, I can speak of how powerful the ‘hidden curriculum’ is in shaping students’ professional identity. ‘Hidden curriculum’ refers to the unwritten, unofficial, and often unintended lessons, values, and perspectives that students learn in the environment they are in.4 Doctors are role models, whether intended or not, and can be instrumental in shaping student’s attitudes and values, which can last a lifetime unless challenged.

The vast majority of us are guilty of inadvertently denying CFS/ME patients of the respect and care they deserve. I believe that we can play our part by developing awareness and reflecting on our own attitudes and how they may be affecting our spheres of influence.

Another important aspect to consider is advocating for the introduction of evidence-based teaching on CFS/ME in the medical curricula. Education is key to improving attitudes, and improved attitudes can increase patient satisfaction and consequently quality of care.5

Now seems to be a pertinent time to reconsider CFS/ME patients as well as our own attitudes towards them. With the explosion of research into long COVID syndrome — a phenomena that shares many characteristics with CFS/ME — as well as the new National Institute for Health and Care Excellence guidelines on the management of CFS/ME due to be released this year,6 let’s not forget CFS/ME patients, and give them hope for finding answers and for a better quality of care.

 

Acknowledgement

Sooyoung Lee would like to acknowledge the contribution from Dr Bakula Patel (Clinical Associate Professor in Primary Care Education) who proofread the article and made some minor edits.

References

1. Pheby DFH, Araja D, Berkis U, et al. A literature review of GP knowledge and understanding of me/cfs: a report from the socioeconomic working group of the European network on me/cfs (EUROMENE). Medicina 2021; DOI: https://doi.org/10.3390/medicina57010007.
2. Muirhead N, Muirhead J, Lavery G, Marsh B. Medical school education on myalgic encephalomyelitis. Medicina (Kaunas) 2021; 57(6): 542.
3. UCSF Office of Diversity and Outreach. Unconscious bias. https://diversity.ucsf.edu/resources/unconscious-bias (accessed 14 Jul 2021).
4. The Glossary of Education Reform. Hidden curriculum. 2015. https://www.edglossary.org/hidden-curriculum (accessed 14 Jul 2021).
5. Friedberg F, Sohl S, Halperin P. Teaching medical students about medically unexplained illnesses: a preliminary study. Medical Teach 2008; 30(6): 618–621.
6. National Institute for Health and Care Excellence. NICE draft guidance addresses the continuing debate about the best approach to the diagnosis and management of ME/CFS. 2020. https://www.nice.org.uk/news/article/nice-draft-guidance-addresses-the-continuing-debate-about-the-best-approach-to-the-diagnosis-and-management-of-me-cfs (accessed 14 Jul 2021).

 

Featured photo by Srikanta H. U on Unsplash

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Thank you for this article. I have had ME/CFS since 1996. I appreciate that you recognized the bias of the ‘hidden curriculum’ in regards to ME/CFS. I have been frustrated by the negative attitudes of some doctors in regards to ME/CFS, especially those whose specialties have nothing to do with treating this condition. Over the years, I have found that the negative attitude has decreased, but there is still a deficit of knowledge on how to handle this condition. I deal with this by keeping myself informed on the latest research and insights as to what things differentiate people with ME/CFIDS from healthy controls. Unfortunately, this information isn’t widespread throughout the medical community, so I have to be my own advocate with regards to healthcare.

Thank you for writing your article and providing a thoughtful commentary on the scandalous neglect of ME/cfs patients.
Given the widespread failure of the Medical Profession to keep up to-date with what well-conducted scientific research is bringing to light, like many others who suffer with this disease, I too have found it necessary to become knowledgeable about my own disease. This is something which has not only served me well in terms of having a direct impact on my well-being, but also keeps me hopeful and optimistic about the future.
Unfortunately, the UK has been the propagating source of a good deal of misinformation about this disease, not least in the guise of the infamous “PACE trial”. The particular example of DWP-funded and MRC endorsed artifice, has done untold harm, by lending weight to the misguided notion that the illness is psychosomatic in origin and can be successfully treated, using a combination of Graded Exercise Therapy together with a particular (coercive) form of Cognitive Behavioural Therapy. Sadly, the UK’s research Integrity guardrails have proved to be hopelessly inadequate in the face of such a concerted enterprise.
By resisting all efforts to debunk the appalling methodological failings of the PACE trial and their use of connections in the media to peddle their false narrative, the creators of this bogus paradigm, afforded it sufficient time to gain traction, particularly with G.Ps seeking an easy answer to a hitherto unsolvable problem.
regrettably, having spent almost 20 years sharing pertinent research findings with my (now retired) former G.P. and hence slowly building his understanding, in order to appreciate that this is a serious, physical disease, all of that time and effort has ultimately been for nothing. The practice (which I had been with for over 40 years) has now been taken over by a group, who’s senior partners demonstrated no interest in a similarly enlightened viewpoint. My efforts to draw their attention to the latest research findings, which point to a step-change in our understanding of chronic disease in general, fell on deaf ears. They seemed to be either unwilling or incapable of seeing the situation from the perspective of someone more knowledgeable than they evidently are. It seems to me that they weren’t prepared countenance that what they have believed for so long, could in fact be wrong and, much less, that what patients have been telling them for all of that time is probably correct. Maybe, rather than seeing what I had to say as an opportunity to learn, they saw it as a threat. Maybe it was just arrogance and hubris.
I think that they actually preferred not to know, because such knowledge would compel them to act and, as such, it would be a much more complicated (and potentially time-consuming) situation to navigate, particularly when compared to the simplistic (patient blaming) alternative. The current NICE guideline enables them to do that with impunity. However, professionals who choose to be knowingly blind and willingly ignorant, particularly when it’s your own doctor, are acting antithetically and in a pretty deplorable manner in my opinion.
I believe that it is these same self-serving (commercially driven?) considerations which have motivated certain G.Ps to lobby NICE in order to retain the use of GET & CBT in the proposed revision of CG53, in spite of the poor quality of the supporting evidence, the anecdotal evidence of harm and the strong opposition of patient advocacy groups. It seems that here is currently no political will (neither within the NHS nor coming from government) to oppose that position.
Anyway, whatever the reason was for wanting to get rid of me, the new GP practice quite quickly concocted the claim that the doctor patient relationship had irreversibly broken down, and had me removed from their patient list, claiming that my expectations of them were too high.
It’s currently far too easy for G.P. practices to take this course of action and the patient is almost powerless to stop the process. But such is my fate and I’m just one of many M.E. patients to have been similarly cast out by G.Ps, who hide behind the crisis in Primary Care and use it as their shield for doing so.

I had a similar experience with my previous GP he went from point blank refusing to recognise my lack of capacity – scolding me for not “making the effort” to attend appointment in person instead sending my mum with a video to communicate. Escalation of my neglect as a bed bound patient forced him to do home visits. His parting comment “you know that this is psychological in origin” my reply was we will have to agree to disagree. He then moaned about all the reading he would need to do to get up to speed with my history. I consoled him🤣& said how I wish it wasn’t so complex, imagine having to live with it. Over the next nine months I drip fed info & gave him a copy of me & my ME by dr hung explaining it was a really easy read & more of a conversation than a medical text book (I also arranged for him to get the purple book). After a year of exhausting monthly home visits things started to change & he started listening to me, going the extra mile to help. Then six months later he took sudden retirement (nhs pension craziness). I was truly sad & then very grateful for my new, younger & far more holistic GP that listens. I’ve just heard that 4 people have left the nice guidelines ctte. I’m not surprised. I doubt it will be signed off this month & be delayed due to #longcovid. The neglect of this disease & of the huge numbers of sufferers is beyond the scope of a nice guideline which is why it’s impossible to produce.

Thank you for this article. It explains well the experience I have received over the year.
The worst was when I was referred to the pain clinic and the Doctor told me that it was my bad attitude that was stopping me for getting better.

We Don’t Want To Want

We don’t expect rainbows without some rain
We know in life there will be some pain
We just want life to be a little fairer
With M.E. it seems, it’s getting rarer

We want the sun to keep on the rise
Without it always hurting our eyes
We want to walk without a stick
We want aromas that don’t make us sick

We want the strength to rise from our beds
We want to throw away the meds
We want to be as we were before
M.E. came crashing through our door

We want to work and our careers to grow
Not be absent because our body says no
We want to party like 1999
Showing my age, but that’s all fine

We want to shower once again
Without our energy going down the drain
We want to walk down to the park
To listen to the sparrow, the thrush, the lark

We want to hear for the Missing Millions
We want to call out to all non-ME civilians
We want some help from the strong and fit
We want people willing to commit

We want to hear from those in good health
To tell of what’s been taken by stealth
We want to know that want sometimes gets
We want to live without any regrets

We want a society that starts believing
To stop the loss of lives we’re grieving
We want M.E. to be understood
In the way that it really should

We want to know that there’s still some hope
We want some glimmer to help us cope
We want to hear that we’re close to the day
We’ll hear that help is on its way

We know that want doesn’t always get
But we must live in hope that our wants are met
We want to know that someone is hearing
When we say our lives are disappearing

We want a voice to shout out for us
Someone of note would be a plus
We want time on national news
We want the world to hear our views

We see other conditions pass us by
We wish them well, but we can’t lie
We want to be just as recognised
Our voice just seems so paralysed

We want this message to go out
We want a voice with a bit of clout
Could someone please take on this task
Surely it’s not too much to ask

We want someone with a bit of heart
Someone who can make a start
To end our days spent in the dark
We want someone who will be the spark

I know that’s a lot of wanting
Some might find it a little daunting
To be our hero, to be our voice,
But I’m afraid we have so little choice

The time is right, the time is now
Is there anyone who’ll make a vow
Who’ll help our wants to stay alive
Who’ll help our hopes and dreams survive

We want nothing more than life to be fair
To be brought back on an even keel
We just want the world to be aware
That M.E. is so very real

So this final want is really plain
All that we folks want to gain
Is for our M.E. voice to rise and soar
And for us to simply want no more.

Bill Clayton
©2021

This opens up a wider debate about the prejudices that gp’s hold, I’d suggest that their main prejudice is against working class white males, this could easily be shown by the percentage of funding going towards this group.I think the kind of people attracted towards this well paid job, most are part time worers, are conformist types with little agency, who will easily pick up of government attitudes towards who is and isn’t a state protected group. Whenever I went to a gp”s “surgery” I got the impression it was a women’s health center, all the part time gp’s were women, and the awful receptionists were also women, a very sexist enviroment to be in. Anyway I think the only way to stop the discrimination against certain groups is to computerise the jobs that are still unfortunately done by doctors, who still come from a norrow spectrum of society. Computers don’t hold class prejudices, and are not lazy.

People are lucky to have one specific GP to consult with. I wish I did. Currently we get phone appointments with whoever is available and only face to face if it is necessary to see or touch the problem. Those are usually on the same day for which I’m really grateful. Our practice was rated as outstanding at the last review, and I agree with that.

I very much feel for the GPs when they have such limited time to talk to people. With my moderate ME/CFS I can self-manage my symptoms as most of them are self-inflicted through my own bad management. Should I have a symptom that I felt was part of my ME/CFS I would be happy to work with several of our GPs who I know personally are caring and knowledgeable.

I’m very lucky to have had a good introductory course to CFS/ME here in my city.. I have learned a great deal, and am still tweaking my mangement with the CFSSelfHelp classes and website. Low cost, or no cost at http://www.cfsselfhelp.org/ Free pacing tutorial at http://www.cfsselfhelp.org/pacing-tutorial

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