Diagnosis and management of CFS/ME in black and minority ethnic people

[Firestormm]

This study was recently discussed by ME Research UK on Facebook (below). Quite interesting, given the historical bias - although that has I think already been discredited. Don't believe we have covered this study on the forum:

Diagnosis and management of chronic fatigue syndrome/myalgic encephalitis in black and minority ethnic people: a qualitative study

Kerin Baylissa1 c1, Lisa Ristea2, Louise Fishera3, Alison Weardena4, Sarah Petersa5, Karina Lovella6 and Carolyn Chew-Grahama7

Abstract

Aim

This study aims to explore the possible reasons for the lower levels of diagnosis of chronic fatigue syndrome/myalgic encephalitis (CFS/ME) in the black and minority ethnic (BME) population, and the implications for management.

Background

Population studies suggest CFS/ME is more common in people from BME communities compared with the White British population. However, the diagnosis is made less frequently in BME groups.

Methods

Semi-structured qualitative interviews were conducted with 35 key stakeholders in NW England. Interviews were analysed using open explorative thematic coding.

Findings

There are barriers at every stage to the diagnosis and management of CFS/ME in people from BME groups.

This begins with a lack of awareness of CFS/ME among BME respondents.

Religious beliefs and the expectation of roles in the family and community mean that some people in BME groups may choose to manage their symptoms outside primary care using alternative therapies, prayer or spiritual healing.

When accessing primary care, all participants recognised the possible influence of language barriers in reducing the likelihood of a diagnosis of CFS/ME.

Stereotypical beliefs, including labels such as ‘lazy’ or ‘work shy’ were also believed to act as a barrier to diagnosis.

Patients highlighted the importance of an on-going relationship with the general practitioner (GP), but perceived a high turnover of GPs in inner city practices, which undermined the holistic approach necessary to achieve a diagnosis.

Conclusion

Training is required for health professionals to challenge inaccurate assumptions about CFS/ME in BME groups.

The focus on the individual in UK primary care may not be appropriate for this group due to the role played by the family and community in how symptoms can be presented and managed.

Culturally sensitive, educational resources for patients are also needed to explain symptoms and legitimise consultation.

Made me also wonder how relevant this also might be to other populations e.g. with the possible exception of language barriers; many of the barriers could be said to apply to others.

ME Research UK:

Black and minority ethnic patients

It seems that people from the black and minority ethnic population are 2–3 times more likely suffer from ME/CFS than white groups, but (bizarrely) are less likely to be diagnosed with the illness.

A group from Institute of Population Health, University of Manchester has been examining why this might be – and what barriers might be in the way - http://bit.ly/16nLtU3

The researchers conducted semi-structured qualitative interviews with 35 ‘key stakeholders’ in North-West England, including 11 black and minority ethnic patients with ME/CFS and 5 community leaders, 2 carers, 9 GPs and 5 practice nurses.

Overall, several barriers were identified, including a lack of awareness of ME/CFS among black and minority ethnic respondents. Also, religious beliefs and family and community expectations were found to be important, since patients from ethnic minorities may be more likely to manage their symptoms outside primary care using alternative therapies, prayer or spiritual healing.

Language barriers may also make a diagnosis of ME/CFS harder to obtain. One aspect highlighted by the patients themselves was the importance of an on-going relationship with a GP, something which could be difficult in inner city practices with a high turnover of doctors.

The need for additional training for health professionals is stressed by the authors, who say, “Patients, carers and community leaders described how they believed that some GPs may hold stereotypical views of people from certain cultures such as being ‘lazy’, ‘complainers’ or ‘work shy’ ”, views which might prevent a proper diagnosis being given. There is also a need for culturally sensitive, educational resources for patients to explain symptoms and encourage them to come forward for help.

Small study I think to reach a conclusion that people from BME populations are 2-3 times as likely to suffer from CFS/ME as whites; but there we go. Wonder what that would do to prevalence figures if they all received a diagnosis!

 

[Esther12]

Is there any evidence that spiritual healing is a less effective intervention than the management provided by the NHS? This paper is from some of the FINE lot, whose research showed how their 'treatment' did nothing to help patients, but did seem to promote disdain for patients amongst clinicians - maybe this is why minority groups who do not start with the level of foolish faith in medical authority that many middle-class white people are deluded with want to avoid diagnoses like CFS?

What are the barriers which prevent white people from engaging with spiritual healing?

 

[WillowJ]

Made me also wonder how relevant this also might be to other populations e.g. with the possible exception of language barriers; many of the barriers could be said to apply to others.

ME Research UK:


Small study I think to reach a conclusion that people from BME populations are 2-3 times as likely to suffer from CFS/ME as whites; but there we go. Wonder what that would do to prevalence figures if they all received a diagnosis!

there are some other papers (one or more by Jason et al., and at least one by Wessely or White) which note a higher prevalence of ME/CFS among minority populations (though a lower diagnostic rate), both in places like London & Chicago and in developing nations like Nigeria.

Although the barriers mentioned may be recognizable to some extent to people in general, it may not be appropriate to say that everyone has the same barriers because this could be seen as ignoring the extra stigma carried by those who have more sources, and ignoring various cultural differences. (Not to say that all non-minority people are the same group, either: that would also be a mistake.)

 

[caledonia]

The real barrier is actually poverty. Blacks and other minorities are more likely to be poor.

There are a couple of variables to consider - Poor people have less access to good health care. Additionally, poor people are more likely to be exposed to more pollution because they live in less desirable areas, and are more likely to be eating the Standard American Diet which is depleted of nutrients and full of GMOs.

If you studied middle class ethnic minorities, their rate should be about the same as middle class whites. (except for blacks, see below)

The other variable is that MTHFR mutations i.e. genetic methylation problems, vary by ethnicity. The highest rates are for whites, Italians and Hispanics. The lowest rates are for blacks.

This would suggest that poor diet/pollution rates for blacks are much higher than for other ethnic groups, to compensate for lower rates of MTHFR.

I would love to see a study done just on middle class people of various ethnic groups to leave out the poverty variable.

Or simply a study that asks people why they haven't received treatment - then we can stop guessing.

 

[biophile]

First it was claimed in the 1980's/1990's that CFS was a white person's illness, but that turned out to be a methodological artifact. Now in the 2000s/2010s, with slightly more sophisticated methodology, it is being claimed that people from the black and minority ethnic population are 2-3 times more likely suffer from CFS than white groups. Would not surprise me if this was just another methodological artifact. No doubt someone is going to start blaming the increased prevalence on the psychological and socioeconomic stresses of being a minority etc?

 

[Dolphin]

Is there any evidence that spiritual healing is a less effective intervention than the management provided by the NHS? This paper is from some of the FINE lot, whose research showed how their 'treatment' did nothing to help patients, but did seem to promote disdain for patients amongst clinicians - maybe this is why minority groups who do not start with the level of foolish faith in medical authority that many middle-class white people are deluded with want to avoid diagnoses like CFS?

What are the barriers which prevent white people from engaging with spiritual healing?

Some psychobabble/similar in the paper

Some GPs and community leaders described CFS/ME as a ‘psychosocial condition’, which might be more difficult to explain to people from some BME groups:

‘There’s always a bit of a problem with Afro-Caribbean patientsy getting them to see that the difficulties that they have had in their personal lives can have an impact on them physically is actually quite difficult. So if you extrapolate that to something like chronic fatigue, I think that could be quite a difficult area to get into’. (GP2, male, White British)

 

[Dolphin]

These reasons seem plausible enough to me. Not really specific to certain ethnic groups either.

Access to care

Most patients reported that their usual family doctor was from a BME community. However, only one patient reported receiving the diagnosis of CFS/ME from a non-Caucasian GP. The others reported being diagnosed by a White British GP. Patients and community leaders described how GPs whowere family friends or part of the community might be less likely to suggest a diagnosis of CFS/ME. In addition, patients described how they had changed GPs in order to receive a diagnosis, often relying on recommendations from other people with CFS/ME:

[..]

Patients and health professionals also described how BME patients were often unaware of CFS/ME and would not seek further support from primary care if they are told that there was nothing physically wrong with them:

‘If somebody has got a lot of respect for the medical profession and they say there’s nothing wrong with you you just take that as, there’s nothing wrong with you. It’s so intangible... It takes a lot of doctor-bothering [as well], and that’s not something which I enjoy doingyMaybe there’s a sense of pride in certain communities becausey it does feel like you’re whingeing’. (Patient 4, female, Other White)

 

[Dolphin]

Another point that wouldn't be specific to certain ethnic groups:

As a result of negative experiences with the GP around the presentation of non-specific symptoms such as fatigue, some patients reported that they had chosen not to consult in the future and would prefer to manage symptoms themselves:

‘If I’m honest I’ve tried very much to refrain from going to the GP, and whatever symptoms I have now I try to, unless it’s something I think is really, really severe, is to manage it myself whatever it is...’. (Patient 10, female, Black British)

 

[Dolphin]

The language point seems plausible enough to me:

Other patients reported a preference to see the Hakim or herbalist if they experienced symptoms of CFS/ME as they speak their language and are able to spend more time with the patient:

Language and understanding

Health professionals, patients, carers and community leaders agreed that not speaking English acts as a barrier to the diagnosis and management of CFS/ME. Some BME patients are not able to adequately describe their symptoms or understand the GP during a consultation. As CFS/ME is a diagnosis of exclusion, a number of appointments and investigations are required to reach diagnosis, which is made more difficult when communication is difficult:

Others relied on professional interpreters who may not understand their regional dialect, or misinterpret their symptoms.

When a patient who does not have English as their first language is diagnosed, it was reported that they may find the words ‘Chronic Fatigue Syndrome’ difficult to understand:

‘We have words for tirednessy but they just wouldn’t understand that [terminology]. The ordinary person or person that doesn’t speak English, you knowy would not understand the word fatiguey or syndrome’. (Community leader 3, male, Pakistani)

 

[Dolphin]

The authors present this as a bad thing in terms of managing/treating ME/CFS but maybe it isn't!

‘When things come from the GP, it’s more respected, so if the GP said to a woman, you have to go and do exercise and the husband was told, then, he would allow her to, but if the woman said to her husband, generally, that I want to go and do exercise, then, there’d be all this complication, where are you going to fit it in? You know, you’re going to neglect the kids, you’re not going to put enough time in the houseyif you’re living in an extended family, it all has to be explained to them, what’s going on and why’. (Community leader 5, female, Pakistani)

 

[Dolphin]

Authors bring up graded activity/exercise elsewhere also:

There is also a need to highlight the social, cultural and religious norms and practices that can act as a barrier to both diagnosis and management (Drachler et al., 2009). This will equip GPs with the knowledge of how CFS/ME is perceived by this group, and to discuss appropriate and achievable management techniques. For example, the concept of ‘taking time for yourself’ and graded activity (White et al., 2011), may not be feasible without the GP discussing the benefits of this approach with family members who may play an important role in the decision to engage with an activity. By incorporating these transferrable skills and concepts into clinical practice, health professionals can also work to reduce barriers faced by BME groups in other medically unexplained and mental health conditions (Dowrick et al., 2009).

Research has shown that cognitive behavioural therapy and graded exercise therapy are effective treatments for CFS/ME (White et al., 2011).

No mention (that I recall) of the £1.3m FINE Trial that many of them were involved with, not doing very well.