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

I think ME Action just offers to be a platform for these essays. So I don't think it should necessarily be seen as a strategy by them. Lack of representation and underdiagnosis of minority groups is probably a big issue in the US, so I think it's normal that this is highlighted. Jenkins does a wonderful job at describing it succinctly.

I think the ME Action team has mostly been busy with their 30-page document of proposals to the NIH, so I think they've got their priorities right.
https://www.meaction.net/2019/04/24...ormation/?mc_cid=2bb83c136e&mc_eid=d4dd6f0eb6

This is the main publication that came out of that study, but there are many more.
https://www.ncbi.nlm.nih.gov/pubmed/10527290

 

That's what it reads like to me. It doesn't contain any of the elements of the other article we've discussed which I've already said I worry may be counterproductive (e.g. annoying buzzwords and assumptions).

I watched the act up documentary on youtube a couple of nights ago which was recommended here somewhere. Once gay men and homeless people started achieving some of their aims, women with aids highlighed that they often experienced different symptoms, which led to them not being able to get the aids diagnosis they needed. So the movement fought for them too. As far as I'm aware, ME doesn't discriminate, so neither should doctors or the healthcare system. If someone points out that it does, we should all be bothered.

 

Thanks . that study doesn’t investigate discrimination in the ME community though.

So we have evidence from reports that prevalence is not biased towards white women...what we now need to make any claim of discrimination is to show that having ME as a POC makes you less likely to be diagnosed than other groups or you are disadvantaged in some other way.

 

I'm glad to see this article. It's important that whenever there are improved services or, god forbid, a treatment, everybody who needs it can get on board in good time, rather than having black people or any other group lag behind for years, or decades.

It's frustrating and sad to see, for instance, that there is still effectively an AIDS epidemic in the US South in the black gay community. That's not a totally straightforward issue but the fact remains that we have incredible treatments for HIV/AIDS, and we... uh... know how to prevent it with 100% certainty. So it can only be seen as a huge societal failure that that is still going on.

 

considering the medical establishments and governments around the world have consistently tried to dismiss many illnesses simply based on the perception of costs, it is certainly not surprising that minorities would be totally ignored when gathering statistics to support the beliefs of all in the mind reality deniers.

 

Hi, forum members! I usually just lurk and read all of your good discussions, but you brought up a couple of things that I wanted to address.

First, thanks for reading what I wrote. It was a personal essay, so it didn’t contain any statistics. But it’s important to remember that we don’t have universal health care here in the US and ME/CFS is not tracked here. The best statistics we have are from community based studies like Dr. Jason’s.

Second, health disparities are so great here that one of the Institutes that form NIH is the National Institute on Minority Health and Health Disparities. It is NIH that has designated April as National Minority Health Month and since ME/CFS (using the name designated by the government here) is a major health issue, it seemed to be a good time to bring up the disparities in our disease.

Health disparities are due to a large number of reasons, many of which relate to US history, and I won’t get into that here. But for our disease, both NIH and CDC acknowledge that there is a serious problem in reaching minority communities in terms of diagnosis. African Americans make up 14% of the US population, but if you go to any of the major ME/CFS clinics here, it would be surprising if you saw a single African American patient. This problem won’t be resolved, in my opinion, unless there is a major outreach to doctors serving minority communities. This is, as far as I know, a different situation from the UK and other countries with universal health care. Jen Brea has said that when she attended screenings of Unrest in the UK, there were usually Black people with ME in attendance. Not so in the US.

These disparities in diagnosis have repercussions in research and treatment as well. I understand that most of this is unique to the US, so I just wanted to point out the differences. Going back to lurking. I appreciate all of the good discussions here!

 

I agree illness is not discriminatory.

A major problem with with identity politics is that is EXCLUSIVE and not very INCLUSiVE.

The people we really need to hear from are those who lost their jobs, their jobs, their partners.

The people most affected by illness and its consequences are the poorest in society.

They lack the safety net of expensively educated individuals with access to the media.

 

Honest question - would those who are concerned about the highlighting the need for diagnoses for a minority group have the same concerns about a post highlighting the need for appropriate diagnoses for pediatric patients?



Just as a note - Of all of the pediatric patients I have met over the years, I don't believe I have ever met a young black/African American patient.

 

So we've had stories from women with ME, I don't recall you complaining about them. We've now, by chance, had a story from a man with ME and a black woman with ME in the same week and suddenly the identity politics card is brought out, along with the insinuation that, in particular, these recent stories will help to exclude other sections of the ME community.

Should we hear as many different voices as possible? Yes. Does hearing certain voices mean that we will exclude others? No, I see absolutely no reason why it will, hopefully it will encourage more to come forward.

I had to give up my job due to ME. I have a supportive wife. I didn't have an expensive education but I do have access to media such as this forum and the MEAction platform. Does my voice count, or, as per your argument as I understand it, in the interests of inclusiveness I should keep quiet in case someone else worse off wants to speak? Your desire for inclusiveness seems very exclusive to me.

 

Exactly this. If we don't hear different voices, that in itself is exclusive.

 

@Andy & @adambeyoncelowe

We have different opinions where priorities lie.

I'll stop there because I have to deal with the DWP, ensuring I have enough to live on is my priority for today.

Have a weekend everyone.

 

I seem to remember that the CDC in Reeves' time said that CFS was more prevalent in minorities, though his definition was so weak it was useless for data.

The idea that CFS was a disease of white women was pushed by Stephen Strauss. Tahoe was an upscale resort which was the only reason the CDC investigated - a few weeks paid holiday. They did not bother answering a request to examine farmers in Lyndonville. It suited the narrative of Yuppie Flu that it was an imaginary disease of privileged women. I think the phrase used was women with first class ambitions with second class talents and Strauss did Grand Rounds all over the US spouting his views.

It also suited the idea that CFS was just a modern name for neurasthenia and the victorian overprivileged women who were pale and vapid lying on their couches.

Basically, since CFS, the disease has been used as a career path for certain people and their attitude has allowed bullying and abusive doctors to thrive. We have been called terrorists for goodness sake. Such gems as "lying about all day but still managing to eat like a horse" "doctors will see them for what they are and be disgusted by them" and my favourite "ME is an illness adopted by middle aged women with psychosexual problems"

In that sort of climate where prejudice against professional women, overweight women, hysterical teenagers, attention seeking parents of sick children and lazy, workshy men runs rampant it is no wonder if racial abuse is in there too.

 

This study supposedly claims that patients are more likely to be white, although I can't see that in the abstract: https://www.ncbi.nlm.nih.gov/pubmed/12562565

It's one of the references here: https://academic.oup.com/ije/article/38/6/1554/668115

 

I had a quick skim through. Generally I think we can confidently say from this that CFS/CF appears to have no distinction across ethnic groups and in fact some studies show that there might be a higher prevalence in some minority ethnic groups than others. Generally though they conclude that many studies don’t segment ethnic groups correctly or consistently which can give false pictures.

There appears to be two references that refer to use of services

12
Jason LA, Plioplys AV, Torres-Harding S, et al.
Comparing symptoms of chronic fatigue syndrome in a community-based versus tertiary care sample,
J Health Psychology, 2003, vol. 8 (pg. 459-64)

https://journals.sagepub.com/doi/10.1177/13591053030084005

70
Euba R, Chalder T, Deale A, et al.
A comparison of the characteristics of chronic fatigue syndrome in primary and tertiary care,
Br J Psychiatry , 1996, vol. 168 (pg. 121-26)

https://www.ncbi.nlm.nih.gov/pubmed/8770441


Unfortunately neither abstract describes what we are after and one of these is Chalder as an author so that’s a tread with caution..it even admits in the abstract that the tiny sample of 79 is likely to have selection bias in it. In fact I noticed a lot of the papers in the reference section are bps ones so may have inherent flaws. There was far too much theorising on attitudes or behaviours for my liking. There is certainly the usual chronic fatigue merging making it difficult to unpick the wheat from the chaf.

I think there should be a fuller study on access to services and diagnosis rate and compare that to population and perhaps throw in a few patient experience surveys for us to confidently call for change. Obviousy access to services atm is not ideal for anyone and even when you access it you may be made worse by given GET (in the UK)

I wonder whether the MEA might be a good place to start for the UK side since they are all about educating GP’s? I have no idea who would be best for the USA or rest of the world?


Anyway...did my best but had to skim in the end because it was so long.

 

Where are the POC at MM rallys? Perhaps they should get more involved? Make themselves more visible?

 

Appreciate all comments and the discussion here. As @Andy put it, we are "giving a platform for anybody with ME to tell their unique individual story". We are a patient-led, grassroots organisation and as such, we try to give a voice to everyone. If you have any ideas re content, we are open to them! You can reach out the team uk@meaction.net or espe@meaction.net

FYI, we are running a series of articles this week sharing stories of people with ME from all backgrounds/situations. Yesterday we focused on parenting, today ageing with ME. You can check them out on the website or on social

Cheers!

 

I can't imagine why a mitochondrion, a cell, an artery or a nerve care about what amount of melanin one has in their skin. That they could possibly care about what political identity group the mammal they compose claims membership in is a bit more of a stretch. Those categories are political organizing strategies, they will not assist to discover a cure or treatment.

When it is recognized that the our disease is biologically based rather than a delusion or excuse not to work, it becomes obvious that the political party, pigmentation, sexual preference etc have insignificant or smaller effect on how likely one is to have ME/CFS. According to the race based theory, Jen Brea could not have been diagnosed with it.
As it stands, the diagnosis is used sometimes as a carefully considered category based on having a combination of conditions not known to signal any other disease, and as a wastebasket category to toss people who have a hard to diagnose or complex condition. It's no privilege to have this label.

Hitching ME/CFS to the current fad for grievance politics invites some people to self-identify as having it for reasons other than actually having it, and will also discredit those who actually do.

 

It's not grievance politics for people to explore how different aspects of who they are mediates their experience of the disease and discuss how that relates to the broader community. Those concerns may not feel relevant to you, but they are relevant. If more men are pushing harder longer because of societal expectations and making themselves sicker before proper diagnosis and treatment, that's relevant. If black people do the same for differing reasons or receive judgments that discourage seeing doctors and delay diagnosis, that's relevant. If women get mistreated more frequently and more severely by the medical community than men, that's relevant. These are all crude examples, but the things that make us different can radically change how we experience life and attention should be paid to addressing inequities that arise from these differences.

We didn't want dentists on CFSAC when I first got sick because we needed doctors that could better understand our situation and help us to move forward, doctors with relevant expertise and sufficient experience with patients and the disease. The difference Klimas made when she sat on the panel compared with some of those other empty suits was night and day. Just as Klimas' breadth of experience and her personal investment made her a better advocate for patients on that panel than those dentists, so too does a more diverse body of advocates raise the possibility of better, more rounded advocacy that considers the needs of all patients.

And, yes, many things will fall away once the biology is recognized. But even after that, patients' diverse experiences will still matter. If a cure is developed, but only a fraction of patients can afford it, does economics not matter? If you can only get that cure by uprooting your lives and moving to some distant municipality, does your location, family life, etc. not matter? If that cure works less often on black people or latinos or asians because they weren't included in the studies on which it's approval was based, does race and ethnicity not matter?

All these things matter and dismissing them as irrelevant doesn't seem that different to me than people at HHS telling us we should be fine with dentists leading our advisory panel or psychologists reviewing our researchers' grant applications. People want their concerns to be advanced by people who understand their needs, and that's all I see here.

 

I will just make one narrow point about inclusivity. Who joins or supports the activity and finances of an organisation?

For some people to get involved with any organisation, to join in a group endeavour with a large group of people who they don't know, it can feel a lot more comfortable if they know that there are people 'like them' in that group. Sharing personal stories is a very straightforward way of communicating that everyone is truly welcome in a group, and it can make a big difference to some people whether to get involved or not. I don't think that's a small thing.

It is not unusual for people to feel that they are not the right fit to join a group.