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Chronic fatigue syndrome/myalgic encephalomyelitis: an ‘invisible’ illness that benefits from a relationship-based care approach

Damien Ridge is Professor of Health Studies at University of Westminster and a psychotherapist in private practice, with an interest in lived experiences of chronic conditions. He is on Twitter: @damienridge

Carolyn Chew-Graham is a GP Principal in Manchester and Professor of General Practice Research at Keele University, with a particular interest in difficult to explain symptoms. She is on Twitter: @CizCG

Paul Little is Professor of Primary Care Research within Medicine at the University of Southampton, whose major areas are in enabling behaviour change for health professionals and patient empowerment.

Clare McDermott has personal experience of how profoundly severe CFS/ME can affect people’s lives, now recovered and working as a post-doctoral medical researcher in primary care research.

Anna Cheshire is a Research Fellow in Health Psychology, specialising in the lived experience of long-term health conditions. She is on Twitter: @annacheshire1

Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a long-term condition that interrupts lives. CFS/ME results in exhaustion from everyday activities, but there is no clear cause. Taking a rest is usually of little help, and it can take considerable time to recover from exertion (post-exertional fatigue is a symptom). Other symptoms can include ‘brain fog’, trouble concentrating, sleep problems, and memory problems.

The most affected patients are house-bound and even bed-ridden. There is no diagnostic test for CFS/ME, making it a ‘diagnosis of exclusion’.1 Nor is there a readily identifiable effective therapy, and best treatment approaches are disputed. Debates between doctors and patients about treatments have become particularly polarised in recent years.2

… [patients] want to be able to trust that their healthcare professionals have their back.

GPs admit that their education may not equip them with the skills to work with people who have CFS/ME.1 At the same time, no one has stepped back in recent years to investigate in depth what good care and support looks like for people with lived experience of CFS/ME.

We analysed data from 47 studies on patients’ experiences of CFS/ME, focusing on the relationships they had with health and social care professionals and significant others in their lives.3 The findings have been welcomed by many people with CFS/ME as ‘extending an olive branch’ to patients who report poor experiences of NHS care. One woman with lived experience of CFS/ME said our study could help ‘promote a less blaming culture and shift professional and public attitudes towards greater understanding and acceptance of the needs of people with CFS/ME’.4

What we discovered was that people with CFS/ME prioritise how their interactions with others make them feel. This can have as much of an impact on their ability to cope with their illness as the more practical issues of medical care. Said in another way, people with CFS/ME, like all of us, need others, and important consequences emerge from what happens with other people (such as hope, love, and fear). People want a personalised, positive approach in relationships (for example, to create a sense of safety and feeling listened to), not negative experiences (for example, lack of recognition of their plight and having problems trivialised).

If these kinds of positive relational experiences are not present in their care, patients are on the back foot when it comes to working through the very complex issues brought about by CFS/ME. They are likely to feel things like invisibility, or that their symptoms and experiences are being discounted. This may lead to patients disengaging from services and becoming disheartened and isolated.

Our research suggests that a key task for doctors then is to focus on facilitating more positive professional encounters, as that in itself is useful to patients. It means GPs attempting to understand their patient’s position. If little can be done to address physical symptoms, at least the distressing emotional side of the condition can be acknowledged. This can be a tonic in itself, as one research participant said, ‘her [health professional’s] empathic nature, was her greatest skill, anything else for me came secondarily’.5

… a relationship-based care approach is vital to support people with CFS/ME …

In the end, patients are wanting personalised, relationship-based care.6 They want to be believed about their lived experience of the condition.7 They want to be able to discuss their beliefs about the illness in conversations where there is mutual respect, even if there are differences of opinion. They want doctors to remember that a consultation is not the full picture of their lives.

One participant explained that they could only really get to their GP on relatively good days, meaning the GP was unable to witness ‘how I am when I’m really ill’.8 Thus, patients want to gain support that acknowledges that their entire circumstances are not readily on display. They want support that minimises the impact of symptoms on everyday life.

In the end, they want to be able to trust that their healthcare professionals have their back. They do not want to feel unsafe in their health encounters. This can result in defensiveness, feeding a vicious cycle whereby professionals then label CFS/ME patients as ‘difficult’. We conclude that a relationship-based care approach is vital to support people with CFS/ME, and this is underpinned by offering continuity of care.

 

References

1. Chew-Graham C, Dowrick C, Wearden A, et al. Making the diagnosis of chronic fatigue syndrome/myalgic encephalitis in primary care: a qualitative study. BMC Fam Pract 2010; 11: 16.
2. Blease C, Carel H, Geraghty K. Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome. J Med Ethics 2017; 43(8): 549–557.
3. Pilkington K, Ridge DT, Igwesi-Chidobe CN, et al. A relational analysis of an invisible illness: a meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs. Soc Sci Med 2020; 265: 113369.
4. National Institute for Health Research. People with chronic fatigue syndrome want to be taken seriously and to receive personalised, empathetic care. 2021. https://evidence.nihr.ac.uk/alert/cfs-me-people-want-personalised-empathetic-care (accessed 31 Mar 2022).
5. Peters S, Wearden A, Morriss R, et al. Challenges of nurse delivery of psychological interventions for long-term conditions in primary care: a qualitative exploration of the case of chronic fatigue syndrome/myalgic encephalitis. Implement Sci 2011; 6: 132.
6. Marshall M. The power of trusting relationships in general practice. BMJ 2021; 374: n1842.
7. Chew-Graham C, Cahill G, Dowrick C, et al. Use of multiple sources of evidence about CFS/ME in primary care consultations. Ann Fam Med 2008; 6(4): 340–348.
8. Hannon K, Peters S, Fisher L, et al. Developing resources to support the diagnosis and management of chronic fatigue syndrome/myalgic encephalitis (CFS/ME) in primary care: a qualitative study. BMC Fam Pract 2012; 13: 93.

 

Featured photo by Annie Spratt on Unsplash.

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But some of these patients make their doctors’ stomachs churn, don’t they? Or at least I seem to remember that that is what has been reported about them in the past (and in the BJGP-https://bjgp.org/content/67/656/106 to boot). Patients should never be spoken about in such a way. How are they supposed to “trust that their healthcare professionals have their backwhen they have been couched in these terms? How were such prejudicial words, that could encourage doctors to distrust, fear and/or blame their patients, and that could legitimize/normalize a patient blaming culture, ever allowed to be published in medical journals? The BJGP should apologize to patients for this, as should any other journals that have published or repeated such abhorrent sentiments. Then, perhaps, bridges can be built.

Relationships in medicine need to be built on trust and on evidence. As long as the RCGP and its members show an unwillingness to understand how to evaluate evidence, and in particular the psychology of clinical trials, there will be no trust. If you do not know what to do the answer is not a patronising smile. It is admitting that you do not know what to do.

As a patient this feels like a rather sanctimonious & self-serving article which continues to imply that patient ‘beliefs’ are still the problematical issue, whilst forgetting that most patients probably know a lot more about the science and research of their disease than do their doctors with their so called  “differences of opinion”. We’re still a very long way from the humility most doctors should feel at how they have treated their  ME patients over the last 4 decades. Just remember that amongst patient communities the assumption is that we will be medically gaslighted (and sometimes iatrogenically harmed) by each consultation we attend.  Online communities (where, let’s face it, most patients loiter by virtue of being too ill to leave the home without help, or at all)  regularly provide testament to how badly each new appointment has gone. The exceptions that prove this rule are also, fairly, transmitted to the community via social media and such is the shock of any person with ME getting a helpful interaction with a medic, plus the hope of useful treatment options, that such medics are ‘swapped’, almost like football stickers, to be remembered as the ‘go-to’ people who are doing their jobs properly when other patients need care. And there aren’t many of those to the pound!   Also remember that most people with ME will avoid going to see any doctor until they absolutely must because they have no faith whatsoever in doctor/patient relationships or the ability of the doctor to take their needs seriously.  Also remember that whilst ME is a very real, and devastating, biomedical disease, not everything will be an ME issue and using the ME diagnosis as a hook on which to hang all new symptoms can lead to very real harms beyond those of the neglect of ME itself. 

 I’m not sure what the authors of this piece want their audience to actually do, but if their notion of ‘relationship-based care’ is simply to ‘fake it ‘til you make it’ then that won’t be helpful. It needs to be rooted in a real understanding of the disease. Most patients wait to see to how the consultation is written up in subsequent letters to patients and / or GPs (if the doctor in question is outside primary care). So seldom does the appointment letter reflect the actual content of the consultation (at what point in the Med School timeline was the importance of  proper history-taking relinquished I wonder?) and  being ‘nice and caring’ in person followed by a grotesque and gaslighting letter added to the document bundle is not helpful. Doctors have such a long way to go on this. Other than the exceptions I have alluded to above, patients are regularly abused by the doctors they see. Shouted at. Their reality denied. Their subsequent treatment options being either absent or harmful. This is abuse.

 Commenter Liz S: you add an interesting link wrt that spurious, fake, MUS paradigm.. the one which morphs into FND and PPPD and whatever other new fictitious acronyms they have to create with their “we’re going to give these annoying patients a conversion disorder diagnosis but heaven forbid they work out our acronyms because the game would up…so let’s keep changing them” nonsense.   People with ME, and now Long Covid, are very much at the mercy of this BPS rubbish!  If only all this fiendish energy went into reading the good science around this hideous disease. If only this portal, BJGP, would report the real science that is underpinning this disease presentation.  If only!  My betting is that those who pontificate and have produced this, seemingly caring, opinion piece, wouldn’t recognise the Hanson’s and VanElzakker’s and Griffiths Uni teams if they fell over them in a brightly lit room. There is no suggestion here that they know anything about the disease , or might need to know much about the disease,  or might need to be warned that they are being encouraged to create fake diagnoses for these ‘difficult’ patients, only that the ‘relationship based care approach’ is paramount.

 Of course everyone wants to be treated with respect, especially so given the vulnerability of a chronic and disabling disease. That should be a ‘given’. Please do treat us, and all your patients, with respect, but don’t mistake that for ‘job done’. What patients really need (all patients, ME patients are no more deserving than any other) is proper understanding of the medical literature (the real literature, not the fake stuff) and honesty.   Frankly, so long as I’m not abused and patronised, then I don’t mind if my medics are on the grumpy side … my own ego is intact enough to cope. Personally I don’t need mollycoddling.  People with ME are not, generally, shrinking violets. We’ve had to become our own advocates and clinicians and most of us have grown very strong hides in the process. We’re probably better at coping with unpleasant doctors than the average patient because we’ve had so much experience of doing so. But we’re not ‘difficult’. We’re just trying to stay alive! We embrace every little bit of life and we want to make it less difficult to do so. What would you do if you were ill and being denied treatment or even a caring response? Wouldn’t you do everything in your (physically limited) power to try to improve your lot? Would that make you ‘difficult’?  Don’t be pejorative when all we as patients are doing is your work. Trying to understand our disease because our doctors don’t care to try to understand it themselves.  We are not pathetic little people who need fawning over. We need proper recognition that we are really very ill. We know we’re very ill because the science tells us this. The science speaks truth to our experience.   If you choose not to believe that then it is your beliefs which are the problem.  Not our beliefs.  It’s about time the science ruled ok. Be Semmelweis . Be decent. Be honourable. Don’t confuse our disease with your stupidity. Don’t assume your playacting will correct this listing ship. Reject fake top-down diagnostics (as per Liz S’s link) and embrace real science, and respond to both by giving your ME patients the best of that knowledge.

 Only genuine interaction can sort out this mess and that starts with getting the politics and vested interests out of this game. Yes, I mean the Wessely School and its hangers on, the Jon Stone’s and Alan Carson’s’, and all of those who think they can help their own careers by use of spurious means, creating fake diagnostic categories which save the NHS, and thus governments, money and which then lead on to the inevitable gongs (but do remember not everyone with a ‘Sir’ in front of them name is a good person!). 

If you are a decent GP reading this comment then please wake up and see what is being done in the name of medicine. Look at what your colleagues are creating.. sham diagnostic categories with supposedly meaningful ‘research’ papers attached along with wonderfully ‘convincing’ patient websites. Thus when people who are ill, but not easily diagnosed, turn up in whatever part of the health system they access, they can be given a diagnosis, by you or your colleagues, which IS meaningless and IS intended to convey to other doctors that these people are somatising, the only problem is that it’s the patient who isn’t party to this truth.  It’s a bit like Paul Rodríguez’s quote wrt hunting, “Hunting is not a sport. In a sport, both sides should know they’re in the game”.

 FND has been created. MUS has been created. Now what happens when patients are siloed using this fakery? It doesn’t stop them being ill. Their disease will likely progress. What happens if those are your patients and you have colluded with that fake diagnosis? Do you want to feel the responsibility for a patient whose disease has progressed (possibly terminally) because you didn’t take the time to realise that you too are being played here?
  Please fight back, not just for people with ME who live this life every day. Doctors are not immune to medical gaslighting themselves. Your families are not immune either. No amount of ‘caring’ sanctimoniousness will solve this situation. It’s up to the good doctors to stand up and say ‘not in my name’.  Please be that good doctor. We don’t ask you to be super heroes, we don’t want you to be god (heaven forbid 😉 ).  We just want you to do this job well. You are not therapists. Care, yes, but simply be decent, be honourable and help us move toward a life where its quality can be improved, if only a little. 
If we could think ourselves well none of us would be ill. But our thoughts are not causing our disease. Please wake up to that and help us in the way you were hopefully trained to help. Yes with compassion, but with belief that very few of your patients will lie to you, very few will feign a disease, the ‘feigning’ that people with ME try to do is to attempt to pretend things are better than they really are when we come to your consulting room.  It’s a performance of sorts. It’s the best we can do for a very short amount of time. You don’t see the heap of flesh and bones trying to recover from that visit for days or weeks thereafter. Take our words at face value and we will value you in return. 

Apologies for any typos /  non sequiturs. People with ME are usually cognitively challenged and I’m a case in point.   

R Cox has summarised most aspects our situation with regard to the medical experience excellently. I agree that treating patients with respect is an ”at least” in medical encounters. What we need is for doctors to note the science and treat the condition with some intelligence. It might even save doctors some stress from the feeling of helplessness they must experience due to ignorance of ME/CFS. I don’t mind a ‘grumpy’ doctor either, as long as they show some understanding. Admitting the limits of medical knowledge is even better.
As Cox says,
”Please do treat us, and all your patients, with respect, but don’t mistake that for ‘job done’. What patients really need (all patients, ME patients are no more deserving than any other) is proper understanding of the medical literature (the real literature, not the fake stuff) and honesty.  Frankly, so long as I’m not abused and patronised, then I don’t mind if my medics are on the grumpy side … my own ego is intact enough to cope. Personally I don’t need mollycoddling.”

I should also add that, while treating patients with respect, doctors should make sure they do no harm. Eg, in the case of ME/CFS they should make sure they do not prescribe the ineffective and often harmful, psychaitrist designed treatment, Greaded Exercise Therapy and the ineffective CBT.

GPs need to act as an advocate for this patient group and liaise with the CCGs to ensure referrals are forthcoming, especially in today’s financial climate. How can we explain it is more cost effective to refer to one MDT in secondary care, rather than a considerable number of disparate primary care teams with no expert knowledge (or interest) in CFS?

R Cox points out the ever expanding proliferation of acronyms (MUS, FND, PUPS, ETC) that protect doctors from having to say “I don’t know what’s wrong with you/causing your disabling symptoms”. Doctors can reassure the patient that their symptoms are “real” (real psychosomatic symptoms, without having to say the P word), waffle on about software and hardware, with the patient oblivious that they are being written off as psychosomatised (then possibly palmed off onto IAPT), but other doctors recognise the coded acronyms.

The MUS/FND/PPPD/ETC doctors specialise in devising ways to say one thing to patients while conveying something else to other doctors. This is duplicitous, deceptive, it’s not surprising that R Cox called the MUS paradigm fake. MUS is a manipulative language game really isn’t it, sounds like one thing (we don’t know what’s wrong yet) but means something else. The manipulating of language and narrative in the MUS paradigm has strayed a very long way from science based medicine, and patients don’t appreciate being deceived.

And we know that MUS/FND doctors such as Jon Stone, Alan Carson and Michael Sharpe like to place ME/CFS under the ‘MUS umbrella’.

The magical and ever malleable word ‘functional’ also sounds like one thing (Functional – designed to be practical and useful, Form and Function etc) but to the inner circles-in-the-know in medicine the word means something completely different – ‘conversion’, ‘psychosomatic’.

That the name Functional Neurological Syndrome was designed to fool patients is well illustrated by Jon Stone, Michael Sharpe and others in their 2010 Editorial ‘Issues for DSM-5: Conversion Disorder’:

“the name “conversion disorder” has not been widely accepted by either nonpsychiatrists or patients. We therefore need a name that sidesteps an unhelpful brain/mind dichotomy, will be more widely used clinically, and will be more accepted by patients. We suggest that the term “functional neurological disorder,” as a diagnosis for symptoms such as “functional weakness,” would be practically and theoretically more useful ……

In summary, we suggest that conversion disorder be renamed “functional neurological disorder”
American Journal of Psychiatry June 2010.

And so it came to pass – Conversion Disorder (Functional Neurological Symptom Disorder) DSM-5 300.11 (2013)

The DSM5 Primer states:
Conversion Disorder (also known as Functional Neurological Symptom Disorder or Functional Neurological Disorder [FND]) is a mental disorder characterized by neurologic symptoms (either motor or sensory) that is incompatible with any known neurologic disease’

We need look no further than the JCPMH’s “Guidance for commissioners of services for people with medically unexplained symptoms” to conclude that ME/CFS is included in MUS in the UK at least. And, through reading and inwardly digesting that document, we might also decide that GPs must be lousy at accurately diagnosing their patients because, according to the Nimnuan et al study that’s referenced in it, on average 52% of patients that were referred to secondary care outpatient clinics, (so I assume mostly from primary care), had MUS and not an explainable/ ‘organic’ illness. Should GPs hang their heads in shame because they appear so poor at their jobs in comparison to their secondary care doctor colleagues? Or can they excuse themselves that they don’t have access to the right tests to be able to differentiate the wheat from the chaff? Well, it might cheer them up to learn that their secondary care counterparts don’t seem all that much better than them at diagnosis, despite having better diagnostic resources at their disposal and the advantage of specialty knowledge. If we look carefully at the Nimnuan et al study data then it appears that, overall, around 27% of the patients who were initially diagnosed with MUS were later found to have been misdiagnosed, and that in either direction – explained to unexplained or vice versa – the overall misdiagnosis rate seems to have been about 37%. Yep, it looks like those hospital doctors aren’t that great at diagnosis either.

Now you’d think that that might put patients off seeing their doctors, after all, on that basis there’d be a very high chance that they’d be misdiagnosed with something, wouldn’t there? And then they could suffer iatrogenic harm, whether they’re misdiagnosed with an ‘organic’ condition and are e.g. prescribed inappropriate drugs for that, or are misdiagnosed with MUS and are referred to inappropriate psychological therapies and given potentially harmful psych drugs when those therapies fail to work. But I’d like to (tentatively) reassure patients that those apparently high rates of misdiagnosis may be a delusion, a snare even, because it seems that there were significant issues with that Nimnuan et al study, one of which was that many of the patients in the study were reportedly seen by more junior staff (registrars and senior house officers) rather than consultants. Presumably consultants would have done a better job. I believe that other issues included the sample size and the time period between initial diagnosis and follow up. Perhaps it was a combination of those things that helped to turn up MUS misdiagnosis rates of close to or surpassing 40% for some specialties, who knows? And maybe those issues would also help to explain why the overall MUS prevalence rate was so high? The great shame is that these things weren’t reported or discussed in the JCMPH guidance, even though people who arguably should have known about them were involved in its publication. So NHS commissioners may now think that what they’ve been told in it is gospel. Since so many of them are GPs, I don’t really understand why they haven’t questioned this seeming derogation of their own colleagues’ diagnostic abilities, but what do I know about the workings of doctors’ minds?

The lack of sense shown by some GPs is insane, who else would be met with “well your diagnosis was a long time ago, so id like to go through the whole exclusion process again just to make sure you do have ME.” Would a CF diagnosis be questioned in such a way? How about Chrones? Not to mention that despite the huge outcry following the delay to the new NICE guidance, my GP presumed my physio was for GET and she was really proud of how good that is! When i retorted with ‘actually, no, that is incorrect” her go to response was “then educate me”, which obviously i did. The problem is i shouldn’t have to, just to be taken seriously.

In reply to Katie Bottomley’s comment:

I know of a case of a UK patient who was admitted as an inpatient to a renowned university hospital for investigation of unexplained symptoms whose established diagnosis of Crohn’s was then (temporarily) discounted/overturned, resulting in them being prescribed a medication for their unexplained symptoms that is considered contraindicated for Crohn’s. I strongly suspect that distorted MUS/FND thinking was a major player in that. Are vast swathes of patients now at risk because their doctors have false illness beliefs about them?

Our hearts sink reading this piece. Just because some/many doctors have made us feel bad (again and again over decades) by practicing belief-based gaslighting medicine based on junk research – does not mean that feelings are our priority. The writer’s conclusion that they are reflects the writer’s beliefs and perceptions, not ME patient’s needs. And we don’t go to the GP to discuss “beliefs” about ME.

We know UK GPs have been misinformed about ME for several decades. The resources listed at the bottom of this post will help our doctors to get up to date on ME research and management approaches based on actual science.

This article reads as a soft soap continuation of the damaging discredited psychosocial construction of ME that has dominated for 3 decades. The writers won’t even define ME as a disabling biomedical disease, instead calling it “a long term condition that interrupts lives”. That could mean anything you want it to, couldn’t it.

As for the writer’s mistaken idea that ME patients need or want to ‘work through’ what the writers call “the very complex issues brought about by CFS/ME”. Huh? You are supposed to be medical doctors, not untrained counsellors.

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Do UK GPs even know that the CDC, NIH. US National Academy of Medicine, Agency for Health Research Quality, and now UK NICE, classify ME as a disabling biomedical disease with distinct biomedical abnormalities, based on thousands of medical research studies. All of those agencies have thrown out CBT and Graded Exercise (GET) as treatments for ME along with the low quality research the ‘treatments’ were based on. The only people disputing that are those with vested interests in the dead paradigm that says ME is the result of deconditioning and ‘false beliefs’.

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The CDC:
“ME/CFS is a biological illness, not a psychological disorder. Patients with ME/CFS are neither malingering nor seeking secondary gain.

These patients have a variety of abnormalities that affect multiple systems, such as:
Immune and neuroendocrine;
Cellular metabolism;
and Autonomic system regulating blood pressure and heart rate”

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More informative resources for UK doctors include

The International Consensus Criteria for ME (2011) Primer for Doctors:

http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf

And the very informative series of videos ‘Dialogues for a neglected illness (Dialogues for ME/CFS)’
Which look at ME/CFS from the perspectives of doctors, researchers, patients, carers, advocates and MPs. There are transcripts for some of the videos, and lists of resources for doctors listed on the video pages.

https://www.dialogues-mecfs.co.uk/

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