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Thursday, 2 June 2016

M.E is not a white, middle class illness.

Hi,
I have always promoted the fact that M.E can affect anyone, anywhere on the globe. It does not discriminate against race, religion, age, sexual orientation or gender. I have frequently asked sufferers and support networks to write Foggy a blog post of their own personal experience of M.E. I want to make sure I show how widespread and varied the illness is. Since Foggy's creation, only white sufferers have written their M.E stories for Foggy. I have received blogs from sufferers around the globe - Germany, Australia, USA. I believed this was enough to show diversity. I have to admit that having worked within a diverse and multicultural university, I don't see race, I see humans. I had not realised that black and ethnic minorities were not being represented by Foggy. This is something I now want to rectify.

This blog was triggered by the following tweet this week. There was a Twitter conversation, not including me, and I happened to see this tweet in my news feed.
'In fact, charities, journalists & advocates are actively promoting the bias by only interviewing white, 1st world patients'.
I butted into the conversation with this:
'I ask for comment from ANY M.E patient. Only white patients have come forward. Not intentionally excluding any race.'
Rightly or wrongly, I felt the need to defend myself. 

I have been pondering this for a few days and decided to do a bit of research. I had a quick scan of my Twitter followers - no black/ethnic minority faces. Admittedly, any of the accounts without photos could be black/ethnic minority. It can be near impossible to determine someones ethnicity from a Twitter handle or Facebook name. I googled ethnic minority Myalgic Encephalomyelitis and found a number of academic articles. (see links below). 

International Journal of Epidemiology
Extracts:

'CFS was historically thought to be most common among White women of higher socio-economic status. However, some recent studies in the USA suggest that the prevalence is actually higher in some minority ethnic groups.'

'Results Meta-analysis showed that compared with the White American majority, African Americans and Native Americans have a higher risk of CFS... minority ethnic groups with CF and CFS experience more severe symptoms and may be more likely to use religion, denial and behavioural disengagement to cope with their condition compared with the White majority.'
So, not only does M.E/CFS affect non-whites, it is actually more common! I was surprised. I have always believed that all ethnic groups were equal in terms of prevalence of the illness. The difference is that whites tend to turn to conventional medicine whereas minority ethnic groups don't acknowledge the illness, turn to faith or hide themselves away. If this is the case, the estimated global number of sufferers is certain to be a lot more than 17 million.

When Foggy visited Kerala with 'Uncle' Derek, Derek promoted M.E awareness and struck up conversations with Keralites. They said they had never heard of the illness: Derek left a comment on one of my blogs:

I spoke to 3 or 4 Indian friends during our Kerala holiday when they each asked what Foggy was all about? When I explained it seemed that they had never quite heard of the condition or even knew of anyone suffering with it. Possibly because it is yet to be discovered/diagnosed in that continent, or that their lifestyles are so different there, that anyone who would dare to show any degree of tiredness or weakness, would just be considered lazy!? I don't know but it would be hard for any possible sufferer there that's for sure - mainly because the majority of women do daily physical work of some kind and need to provide for and to keep their families alive. I would feel for anyone who does match the ME criteria that's for sure, as it would be the next thing to hell for them poor things!

At the time, I wasn't sure what to make of this as it is IMPOSSIBLE to do mind over matter with M.E....how could these people push through and try to live normal lives? However, if there is a stigma and a need to keep quiet about having the illness we will never truly know the true extent of M.E on a global scale. 
I now strongly believe we should reach out to or create ethnic minority support groups. Let these sufferers know that it is a real physical illness and, although there is no treatment, there is support out there. Charities and advocates are working hard to raise awareness but don't seem to be reaching a large number of sufferers who may not even realise that they have M.E.

If any Foggy Followers with an ethnic minority background would like to write Foggy a blog please get in touch. Team Foggy would love to hear from you!

I have brain fog today and hope that this blog made sense!

Love
Sally xx

Further reading:

https://www.researchgate.net/publication/236907159_Diagnosis_and_management_of_chronic_fatigue_syndromemyalgic_encephalitis_in_black_and_minority_ethnic_people_a_qualitative_study

1 comment:

  1. Way back when Oprah had a TV show she had an African American ME/CFS patient on one of her shows.

    The patient's name is Wilhelmina Jenkins. Here's a video that she did for Solve CFS on YouTube:

    https://www.youtube.com/watch?v=TMh_JpPmL-s

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