#MEAction: "Unseen: Black people living with ME"

Andy

Andy

Senior Member (Voting rights)
When I became ill in 1983 with what is now called ME/CFS, my life as I knew it was abruptly destroyed. I dropped into a world of pain, exhaustion, and dozens of other baffling symptoms, most particularly the cognitive disruption that robbed me of the life in physics that I loved. After five years of confusion and loss after loss, I received a diagnosis. Even though there were no effective treatments, I knew that I was not alone, that there were many others whose stories were strikingly similar to mine.What I was not prepared to learn was that, as an African American woman, I was considered to be an anomaly, an oddity, a rarity. Black people were not supposed to have this disease.

I poured over article after article about this disease. Every one had a picture of a white woman in distress, accompanying a story of a person with my disease and my story, but not my ethnicity. Still worse, I began to read absurd explanations from those in authority supposedly explaining why Black people did not have this disease – that we had been exposed to more pathogens at an early age, for example. Meanwhile I was hearing stories from all over the United States about other Black people whose lives were crushed by this disease, just as mine had been. Those responsible for the health of the people of the United States did not acknowledge them.
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https://www.meaction.net/2019/04/15/unseen-black-people-living-with-me/
 
what are MEaction up to?

It’s like they are going through a list and inventing problems so they can tick specific lobbying groups off their wish-list

  • Men and their alpha male problems...check
  • Black people and problems with stock images...check

I think most people have a problem with the images used to spread awareness about ME and it’s not just because the subjects are white.

What’s next?

My Catholicism made my M.E. worse?
Discrimination against the ME LGBT community?

Perhaps their content manager is bored? I’m all for diversity but becoming a parasite for all the discrimination in society is only going to confuse what are a few very simple communication themes. I wish they would keep a tighter focus and realise that there is a price to pay for chaotic random flights of fancy.
 
I have read the article, and in this case I think it is a valid concern that is worth raising. If there is significant underdiagnosis in particular ethnic groups because of misconceptions that ME only affects white people, then that is a problem that needs to be addressed by raising awareness among relevant health workers.
 
Jason et al did a big random sample prevalence study and found that CFS affected all ethnic and socioeconomic groups. At the time it was widely believed that CFS was an illness of the white middle class. In reality the non white middle class patients were just not being diagnosed with it.
 
arewenearlythereyet said:
what are MEaction up to?

It’s like they are going through a list and inventing problems so they can tick specific lobbying groups off their wish-list

  • Men and their alpha male problems...check
  • Black people and problems with stock images...check
I think most people have a problem with the images used to spread awareness about ME and it’s not just because the subjects are white.

What’s next?

My Catholicism made my M.E. worse?
Discrimination against the ME LGBT community?

Perhaps their content manager is bored? I’m all for diversity but becoming a parasite for all the discrimination in society is only going to confuse what are a few very simple communication themes. I wish they would keep a tighter focus and realise that there is a price to pay for chaotic random flights of fancy.
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With all due respect, this isn't an 'invented problem' (and the issue goes beyond stock images). I'm in the #MEAction Black Forum group on Facebook and people have raised some very specific instances where race and ethnicity have been major barriers for them both inside and outside the ME community.

Additionally, there are thought to be specific barriers to obtaining healthcare that have been identified for black people and other minorities.

My advice: if talking about these things isn't your cup of tea, ignore these discussions. I'm rather fed up of articles about Prince Harry and Meghan, so I just ignore them.

Alvin said:
The reality denying right will call the disabled lazy welfare queens.
Its been happening since the 70s already so not much else is there to change.

Ignoring minorities will not help us or anyone else.
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Exactly.
 
Estherbot said:
@EspeMor MEAction are very keen on identity politics. This is a big thing in the US, have the ME Action also considered the downsides?
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Doesn’t seem like it. I think its good to highlight issues if certain ethnicity’s are not being diagnosed (not sure if this is the case or not). I’m just not liking the pattern I’m seeing from them at all.
 
Estherbot said:
The toxic masculinity piece was rather odd.

The individual seemed to suffer from self loathing and low self esteem.
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I completely disagree. The article made a lot of sense to me, and he wrote with an honesty that I liked. When you are ill, especially in the early days of something as potentially devastating as ME, you are vulnerable and confused, and not sure how to act, to even be - especially if you have never been seriously ill before. Admitting to that uncertainty, describing it and talking about how he moved on from it will be hugely valuable to others who find themselves in that position, in my opinion.

And with this article, I think it's hugely valuable that other voices be heard - if, as certainly seems to be the case, that ME is under-diagnosed in black, and presumably other, ethinc groups that is most definitely something that needs to be talked about.

And as for MEAction being keen on/having a pattern of identity politics. What do you mean by that exactly? All I see is MEAction giving a platform for anybody with ME to tell their unique individual story - so if you mean that MEAction are playing ME identity politics then I absolutely agree and encourage them to do so.
 
Diluted-biscuit said:
Doesn’t seem like it. I think its good to highlight issues if certain ethnicity’s are not being diagnosed (not sure if this is the case or not). I’m just not liking the pattern I’m seeing from them at all.
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I brought up the identity politics issue not because I disagree with the article, it's well written.

It would be good to have a debate on whether the identity politics approach is appropriate for ME

Identity politics is an EXTREMELY controversial area and has a number of risks which should be carefully considered.

It is an area where the debate quickly spirals out of control and you end up with the likes of Rod Liddle, Toby Young et al involved.
 
Estherbot said:
I brought up the identity politics issue not because I disagree with the article, it's well written.

It would be good to have a debate on whether the identity politics approach is appropriate for ME

Identity politics is an EXTREMELY controversial area and has a number of risks which should be carefully considered.

It is an area where the debate quickly spirals out of control and you end up with the likes of Rod Liddle, Toby Young et al involved.
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It's not 'identity politics'. It's people's lives.
 
I'm not familiar with the other article being referenced, but this article is well-written, the content is relevant, and it gives valuable historical perspective.

This issue is something I have wondered about since the first CFSAC I went to, when just about all the patients were white. I assumed economic factors played a large role in that, as those able to attend conferences generally are pretty well-supported, emotionally, financially, and logistically, but obviously that can't explain the absence fully. We should want to understand why the ranks of patients, or at least patient advocates, skews the way it seems to, if not to better care for everyone who comes down with the disease and to bring in other perspectives, then to better represent to outsiders that the disease affects everyone. This article strikes me as a valuable addition to that discussion.
 
I think it’s worth raising any issue of discrimination wherever it occurs. Stigma is stigma and it’s wrong whether you have ME or not. However we need to be careful that we don’t send out or endorse false trails of information. This may be real or equally it may not.

Fake news originates where people make correlations, sometimes with good intentions that just aren’t there, giving anecdotes and then equating these with facts.

The article didn’t refer to a survey or provide any facts about race and diagnosis rate, or anything else? Perhaps I missed something that endorses the opinion that black people are experiencing a different sort of discrimination than what they experience outside of the ME community? I think if this is of concern and there are no facts ...the piece should call for facts to be gathered...not portray feelings as facts,and call for the discrimination to stop.

However that’s not my main beef ...I’m not invalidating anyone’s experience or feelings...just questioning the motive of MEAction using wider discrimination presumably for larger media attention.

That is my interest and I posted because I am also interested in the proliferation of fake news via social media and have a vested interest in ME Action having a good communication policy. I am concerned that they are mixing messages and effectively diluting what could be a much more hard hitting and simpler communication campaign.


That doesn’t mean I don’t endorse fighting against race, religious age or gender discrimination in everyday walks of life (which I’m also interested in).

It’s a sensitive subject so I probably shouldn’t have used the word “inventing” for which I apologise for anyone that misinterpreted this to mean that I was denying or dismissing discrimination per se.
 
Living with ME/CFS under the best of circumstances is a nightmare. Living with it without a diagnosis is unbearable. Undiagnosed patients blame themselves, try to push through this unrelenting disease, and become more severely ill. And if you are an African American who has heard for your entire life the racist beliefs that Black people are lazy, unintelligent, and not motivated to work hard, this disease will reinforce those false internalized beliefs. A diagnosis can place that person within a community of very sick people who are trying their best under impossible circumstances. This is a very severe biomedical disease, not a personal failure.
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It's a really well-written article addressing an important issue. This issue of under-diagnosis among certain types of people goes beyond 'first world' countries. There are whole countries where ME/CFS is scarcely known, whole countries where people with ME/CFS are not being diagnosed.

arewenearlythereyet said:
The article didn’t refer to a survey or provide any facts about race and diagnosis rate, or anything else?
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I agree, we need more facts, more statistics. More good epidemiological studies, across the world. But the first step towards getting them is recognising that there is an issue that is causing much suffering.
 
Underdiagnosis in general is a huge problem. We don't discuss it that much because most of us are diagnosed but estimates are that for every diagnosed person there are up to 9 that are undiagnosed. While there isn't any real treatment, a diagnosis would allow these undiagnosed patients to connect to other patients and contribute to research and advocacy. Being undiagnosed deprives them even of this.

Also maybe because this place is UK-centric which is possibly the only country where underdiagnosis is not as big of a problem.
 
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strategist said:
This idea is well supported by a large study by Jason et al. It's 20 years old by now but it seems reasonable to assume that this problem hasn't gone away.
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I think this seems like a good idea for a piece of research that needs an update...a lot has changed in 20 years. I would be interested to have a read if you have the full title or a link?

I also wonder what the charity membership demographics look like and how many of the members are officially diagnosed? You could run quite a cheap analysis/survey amongst members to get some indicative facts without spending too much money. I wonder whether any of them have thought of doing this? Perhaps the numbers aren’t big enough to make meaningful for the reasons described?
 
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