an ‘invisible’ illness that benefits from a relationship-based care approach – BJGP Life, 2022

Sly Saint

Sly Saint

Senior Member (Voting Rights)
(Chew Graham is one of the authors)

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
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full article here
https://bjgplife.com/chronic-fatigu...fits-from-a-relationship-based-care-approach/

Edit:
This article is based on research by the same authors discussed here:
A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs, 2020, Pilkington et al
 
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It all sounds very nice but reminds me of the Round Table member who introduced themselves as the 'friendly sort of psychiatrist (with artificial smile) presumably to distinguish them from people who do trials of GET and CBT, although those surely should not be dismissed out of hand...

If GPs have very little experience of ME then a relationship-based approach is a bit like a bank manager with a grin but no offer of an overdraft.

Who are they trying to sell what to?

If you want relationship-based care I would recommend the old system we used to have in hospital rheumatology. I saw people like Catherine and Gill for each of their appointments over a twenty five year period. If they had needed it I could have done domiciliary visits. Departmental OTs were there to do visits too. Gill travelled fifty miles to see me but didn't mind. Based on listening to what they had to say I thought up a treatment and they had the courage to try it. That is never going to happen for ME in 'Primary Care'.

The artificial smile isn't actually the treatment, guys.
 
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. ...

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.
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Doesnt every patient with every condition want to be treated with respect etc? What grieves me about this article is the 'othering'.

Every patient with every condition wants what we want, why make it seem like we are a special case. We dont get it. But this article presents the problem as being ours - like we want special treatment, rather than the issue being that doctors already think of us differently.

If you took this article and replaced the words CFS/ME with MS or cancer, it reveals how grossly patronising it is.

The whole article can be summed up thus

'CFS patients are just the same as anyone else with an ongoing illness, they want to be treated with respect, be taken seriously and for their doctors to have their back. HCPs need to check their prejudice and realise that they are no different to any other patient, and if they will treat them accordingly then (which is after all their job!) then everyone will be much happier and the patients will be given the care that the doctors are being paid to give them.... What a Shocker!'

I find it such a disappointing failure of psychologists/psychotherapists that they dont see their own transference and projection.

ETA artificial chumminess wont cut it
 
Exactly, under the guise of some good, condescension, prejudice and lack of authenticity show through in some sentences. Maybe I'm too sharp but it's a bit like someone who tries to understand the other without sincere desire...

" They want to be able to discuss their beliefs about the illness... "

" 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."

It still smells like leftover Pace, doesn't it ?

" 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’. "

It seems to me that the basic professional attitude precludes blaming the patient !
 
This article gives me the creeps. It's incredibly patronising, gets the description of ME/CFS wrong and doesn't once refer to the NICE guidelines or to how a GP can help with symptomatic treatment, pacing advice and writing reports for employers and benefits agencies, ensure access with online phone or home visits, etc. Nor does it explain the problem of nice kind patronising GP's telling us to try to get more exercise, or anything about how severe ME can be [edit - it mentions severity but not the implications for care needs].

Did I mention the word patronising?
 
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Precisely @Lilas

I'm really not sure why they needed a study to tell them any of it.
Lilas said:
" They want to be able to discuss their beliefs about the illness... "
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yes i spotted that too.

completely agree with all you say @Trish

'smile, pat them on the head and act as if you respect them, that will be enough'.

How can psychologists not know that patronisation and respect are diametrically opposed
 
The usual condescension from one of the arsonists who soooo honestly wants to understand how to make the patients live with the fire they lit. Soooo compassionate.

It doesn't need any special treatment, all it needs is to be properly medicalized, to make up for charlatans like Chew-Graham who deliberately de-medicalized the disease without thinking about consequences. This is what happens when you set out to de-medicalize a disease. It always ends the same way, always has, always will. Every possible consequence that follows "what if HIV denial was the standard model?" applies here, just for a different group of people. No one can pretend they are surprised at all the harm this caused.

If Chew-Graham actually wants to help here, and I sadly do not believe that based on past behavior and attitudes that clearly have not changed, they simply need to admit they made a colossal mistake and beg the profession to undo the harm they did, then disappear into the sunset. Admit to the scam, you know what you did, admit to it, damnit. Stop making this about you and do one good thing in your damn miserable lives.

No one cares about a "relationship" with a physician. No one. No one goes to see a physician to see a buddy who has their back. Enough with this condescending nonsense, you are not friends, you are not even acquaintances, we need you to be professionals and do your job and we expect that to work with systems, with the massive resources that healthcare has to work with. No one expects individual physicians to solve this, this needs massive institutional efforts, the exact kind the BPS ideologues have blocked for decades. This patronizing crap is straight up creepy.

It's well-known that the PACE gang have worked heavily on promoting their ideology. We know painfully that it isn't taught correctly in any medical school because of what they did to promote their damn ideology, that they influenced all the material that teaches this all wrong. How insulting can someone be to actually expect to have broken millions of lives, then offer advice on how to repair that harm, without even having the damn self-respect to admit to having caused it?

Get. Lost. You are quacks, you broke this, you only speak for yourselves, stop pretending it was ever about anything else than your damn ideology of needless suffering and death.
 
The original paper this is based on was published by these authors 2 years ago, so before the NICE draft was published, while they still hoped GET/CBT and treating ME/CFS as psychosomatic would continue.

So I think it's significant that, 2 years on, and after NICE has been published, they are resurrecting this by writing an article for GP's about how to treat pwME based on its premise that CFS/ME, as they continue to refer to it, is basically fatigue, with a bit of post exertional fatigue, but rest being no use, and a few other vague symptoms. The word 'psychosomatic' oozes from every patronising sentence in this article. It's just telling GP's to be a bit more careful to cover this up by pretending they believe whatever we believe.

I think this is part of the campaign by the Royal Colleges to undermine the NICE guideline.
 
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Trish said:
The original paper this is based on was published by these authors 2 years ago, so before the NICE draft was published, while they still hoped GET/CBT and treating ME/CFS as psychosomatic would continue.

So I think it's significant that, 2 years on, and after NICE has been published, they are resurrecting this by writing an article for GP's about how to treat pwME based on its premise that CFS/ME, as they continue to refer to it, is basically fatigue, with a bit of post exertional fatigue, but rest being no use, and a few other vague symptoms. The word 'psychosomatic oozes from every patronising sentence in this article. It's just telling GP's to be a bit more careful to cover this up by pretending they believe whatever we believe.

I think this is part of the campaign by the Royal Colleges to undermine the NICE guideline.
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"and even bed-ridden" !! says it all really. I'd guess even mild people would say that being 'bed-ridden' more often than they should be, for things minimal to others is the defining issue. And what % are bed-ridden for so much of their time that people say 'laying around in bed all day' about them - because it seems she has minimised this.

"They want to be able to discuss their beliefs about the illness" is selecting 'loaded' terms to minimise whatever patients say as mere beliefs, with a pretence by putting it in a sentence with the word respect and different opinions as if somehow there is such a thing as 'shallow' respect whilst believing whatever they say is going to be firmly wrong. I remember when I was younger someone saying the best thing you can give someone is time - sad that today that has to be caveated by so many other basics like actually hearing and trying to understand etc.

Who is the Clare McDermott who the bio says recovered from Severe ME by the looks? That is quite unusual to use the word 'recovered'.

Agree that this feels like this in itself has taken clearly communicated feedback and then twisted it so that can be feigned and used (give the appearance of offering this, whilst not). The opposite of psychology and mental health to trick someone really. People trust integrity, coherence - that term actually has a large body of research noting that requires far more than surface-level for one interaction. Is this potentially suggesting pretending to care and listen without underlining actually learning from them or hearing what they have to say or other proper action/change.

You'd at least get your facts right on the illness if this was about anything more than this wouldn't you? That is exactly what makes people feel unsafe and unsure whether they can trust if ambiguous terms are suggested so you can't tell bad from good. It feels a bit 'trojan horse' article when the facts are all minimisations covered up with pretend sympathy..
 
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Yikes, just read the following in the 'Positive Psychology' para of the FitzDonald-Davies et all (2020) paper discussed on s4me here

Is it just me or does the above suggestion by these authors sound rather like the 'prelude behaviour' [for professionals to engage in so that patients are 'up for' the next stage of being Body Reprogrammed] suggested/detailed in the following:

"If we return to our computer analogy, it is worth considering how software problems are usually overcome. New information by means of an updated software program is typically downloaded and in a similar fashion, the Hyland model suggests a forward-looking therapeutic approach, focusing on personal well-being and growth.

Providing patients with an appropriate narrative, which also validates their experiences, is a key component of the Body Reprogramming approach. As well as reducing fear and frustration, this narrative also can improve the subsequent clinician-patient relationship and foster positive active engagement and expectations (Ashe et al., 2017). Well-being is subsequently explored once this explanatory narrative is agreed, through a focus on choices, attitudes and behaviours."
 
It seems they are singling out “CFS/ME” (can’t even use the patient preferred acronym of ME or ME/CFS) as benefiting from a “relationship-based” approach. Call me old-fashioned but I was taught that having a good professional relationship with my client is the cornerstone of good medical care and to actively work on building rapport. Even more so with chronic disabling conditions that medical science has little to offer but a doctor can advocate for benefits, housing, subsidised activities and social support. I see my GP as part of my support network and I find it odd this article has to spell it out to GP’s with all the verbiage of a liaison psychiatrist….

It is all very nice to do and review qualitative studies on what pwME want but they forgot the elephant in the room: if GP’s feel unequipped to care for pwME they need to upskill themselves pronto, acknowledge their thinking has been hijacked by psychosomatic medicine (and all sorts of other pseudosciences) and realign their thinking with NICE and CDC guidelines etc. Learn to diagnose and treat co-morbidities. (They could even read s4ME’s resources for health professionals!) They could read up on what clinical ME experts are trialling with their patients and whether they would feel comfortable doing so in primary care.
 
Another thing is how they say it's a diagnosis of exclusion, when there has been much talk (also from Chew-Graham? At least from several biopsychosocial folks) about how functional disorders also require "positive signs" for diagnosis (with the implication this makes the diagnosis more real/true).
 
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