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

That was around 15-20 years ago, the real issue is no one has bothered to check whether such lack of diagnosis occurs recently. The same goes for many non-western countries (and countries outside the sphere of influence of Japan). I'd like to see high quality epidemiological studies in India and South America for example.

 

Thanks for the feedback. I guessed my post would rub some the wrong way, but it looks like the science-based people here understand. Gravity works the same for all 42 genders, all 5 points of the compass and for each rigidly defined social class.

Edit: Removing a a bit of humor that some did not find humorous.

 

Masking prejudice and needless antagonism behind "rationality?" How original . . .

If you have a point, make it. There's no need to poison the well. As far as I can tell, your point is, "People that are not me have concerns that I don't care for. Therefore their concerns are silly and need not be discussed." This a strange approach for someone with a disease that is where it is because the concerns of people who have it have been dismissed for decades by people who did not.

 

Yes, I agree that qualities outside biology do have relevance, but there is a risk in giving them too much attention. For example, men are under-diagnosed, having had exactly that experience myself I can attest to it. Until recently or even continuing up to now, it's likely that there is under and perhaps over diagnosis for different ethnic groups. Perhaps some ethnicities are more inclined to suggest their doc consider a ME/CFS Dx, perhaps it's for a bundle of other reasons.
To me, why it's uneven is less important than making a correct Dx available to anyone who has our condition, disease or whatever we have. Understanding what the truck it is and creating a sufficient number of competent ME/CFS specialists a PCP can refer to with valid enough criteria that it doesn't remain a "Dump Difficult Case Here" sign means that one has good odds of eventually getting the right Dx, whether they're 16, 61, man, woman, etc.

Nobody needs to worry about whether you'll be under/over Dx for diabetes, high blood pressure or a compound fracture due to some physically irrelevant social factor. Our disease or diseases will never be so simple to detect or manage, but we can at least get from being a Dx with a vague and inconsistent meaning to something with A) well defined definition(s) and B) a combo of objective and patient reported criteria that approach being reliable. At that point it won't matter what you look like, what will matter is what's broke and how the brokenness can be ameliorated or perhaps cured.

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"If that cure works less often on black people or latinos or asians"

Well, at least in the USA, none of those are biologically significant and exclusive categories. Latino is meaningless altogether, as a Latino is likely to be partly from Spain, part from other European countries and/or part from whoever settled in the Americas 40,000 years BC. In the USA, someone checked off as black is likely from a combo of Africa (which itself has dozens of ethnicities), Europe, England +/or the Americas pre-15th century. Asia ... it's kinda big. Does that mean India (which caste?), Indonesia, Russia or China? In China, do you mean Han, Mongols or Uyger? Do the Native Americans who immigrated from what is now Russia count as Asians? Or are they Caucasian?

"White" isn't a race; an Italian is not an Inuit, they have demonstrably different appearance, heat/cold tolerance and they thrive on different diets. The Greeks ain't the Danes, they're not even the French. Yet they're all assigned the same bureaucratic checkbox. In the USA, people are classified as white if they don't fit any other official category, making that checkbox almost meaningless. There are not too many people who are 99 44/100 % Anglo-Saxon in the USA, unless you count Elizabeth Warren. Spending very limited resources on the theory that XYZ ethnicity's cells work in a clinically significant different way than QRX's sounds like something from the 18th century.

 

""People that are not me have concerns that I don't care for. Therefore their concerns are silly..."

This is in no way my intent, and I do not want to project that message. What part of my comment gives you that impression?

 

When it comes to (medical) cures for disease, I have not seen any evidence to suggest that "race" or ethnicity have any effect, beyond access (and compliance) to high quality medical care in the first place.

 

That may be. I think I've read articles on this point before, but with my memory these days, I can't be sure. I've certainly read articles on sex differences, of course. I did a quick search just now and found this: https://www.ucsf.edu/news/2016/08/403811/gene-variant-explains-differences-diabetes-drug-response

as well as some journal articles appearing to claim differences in metabolism of certain drugs in certain populations.

 

The point is whether ethnic differences matter in medicine and whether representation and inclusion matter. It's a bit of a digression from your broader attempt to label discussion of issues specific to black patients as "grievance politics," but it's a legitimate point to question, whether ethnic differences matter in drug effectiveness. Fair enough.

Attempting to lambaste the crude, but generally used labels I used to imply the argument isn't relevant, though, isn't really good faith engagement. I'm not sure it's worth following you down any more rabbit holes. Perhaps I should not have engaged in this thread, but that kind of dismissive reaction may make people feel unwelcome or discourage engagement.

 

From that link:

A more recent prospective study in Germany found an (CC) allele frequency of 24%.

So in both studies, the (reported) ethnicity is neither a highly sensitive nor highly specific predictor of having the gene and hence treatment results. The conclusion is clear: we should not prescribe based on reported ethnicity in this example...

 

I think part of the point in highlighting different groups with ME (be they pediatric, male, female, black/African-American, Asian, LGBTQ+, etc) is that in addition to different group possibly responding differently to treatments, there definitely are diseases/conditions that are more frequent in certain populations. Sickle-cell anemia, Beta Thalessemia (also called Mediterranean Anemia), Alpha Thalessemia, sarcoidosis, among them. There may be overlapping conditions that interfere with treatment response as well as interfering with diagnosis.

 

Yes, they often talked about burnout in reference to what we were suffering from. Let's not forget "Yuppie Flu" which was coined to infer that the Yuppies, Young Urban Professionals (often white "preppies") were burning out.

 

The reality is African Americans, minorities, and those in a lower economic status in the US don't have health care equality and do not get a diagnosis for many diseases in a timely manner. If it is a disease like ME/CFS, then you don't get a diagnosis.

 

Yes. This forum seems to have more UK patients and MEAction is, being based in the US, taking on the problem of Afican Americans and other US minorities not even being considered by the health care system as candidates for an ME/CFS diagnosis.

 

I did some more looking around online and found a number of different articles about racial and/or ethnic differences in drug response and disease for a number of different groups and conditions. These discuss treatments, not cures, but speak to the possibility that whatever is developed for ME could have variable impacts if the patients studied are not representative.

A few of the links I found speak to the issue of drug response variations more generally.
https://ascpt.onlinelibrary.wiley.com/doi/abs/10.1002/cpt.61
https://www.aafp.org/afp/2008/0601/p1553.html
https://www.wolterskluwercdi.com/bl...nd-race-can-heritage-affect-drug-disposition/
The abstract from the first link claims that in the six years prior to publication, roughly 20% of new drugs demonstrated "differences in exposure and/or response across racial/ethnic groups, translating to population‐specific prescribing recommendations in a few cases."

Beyond more general review, I found a number of articles discussing or mentioning differential drug response between black and white populations with beta-blockers, ACE-inhibitors, and diuretics, as well as an article on differential response to statins between whites and asians. This article on a discovery in effectiveness of beta-blockers seemed particularly interesting: https://source.wustl.edu/2008/04/ma...-gene-that-prolongs-life-after-heart-failure/ The study discusses a discovery that 41% of the black population studied have a genetic variant that "more effectively suppresses the action of adrenaline than the more common version of the gene," supposedly explaining a long-standing discussion about apparent variability in effectiveness of beta-blockers in black populations. It doesn't impact treatment recommendations though.

Another discusses ethnic differences in presentation of Tuberculosis and response to treatment: https://www.newscientist.com/article/dn23826-ethnic-background-influences-immune-response-to-tb/ This article is even more relevant to the discussion in this thread:
https://medicalxpress.com/news/2019-01-racial-differences-alzheimer-disease-unveiled.html The most relevant passage being:
"'With tau, the pattern was the same in African-Americans and whites—the higher your tau level, the more likely you were cognitively impaired—but the absolute amounts were consistently lower in African-Americans,' Morris said. 'What this may indicate is that the cutoffs between normal and high levels of tau that were developed by studying whites are probably not accurate for African-Americans and could cause us to miss signs of disease in some people.'"

On the subject of prescribing differently based on race/ethnicity, Bidil was approved by the FDA specifically to treat heart failure in black populations, although it received criticism for study design and effectiveness and apparently did not do well in sales. I also found discussion of recommendations not to use ACE-inhibitors in black populations: https://www.sciencedaily.com/releases/2015/09/150915141035.htm

The issues that seem relevant, as Denise pointed out, are ethnic/racial differences in comorbidities and how that affects diagnosis and treatment, as well as ethnic/racial differences in presentation of disease and response to treatment. I'm not qualified to judge whether any of what I linked is sound. But at the very least, it seems there is discussion among qualified people on these fronts. I'd be interested in your thoughts.

 

The guidelines for blood sugar levels used by the NHS say that patients of Asian descent are more likely to experience complications so ideal levels are lower.

My friend was close to a woman who had thalassemia which took years to diagnose because she was not of Mediterranean descent.

These things highlight what is the real point it is genetic makeup which is important to the science not the trivial matter of skin colour. Of course dismissing or not researching people because of their skin colour can hide these issues.

I think what we have in this thread is a problem with politics and sociology which is more important in the US where there is not universal access to health care. In the UK our problem is we all have access but the doctors won't do anything when we get there. (People bedridden with other diseases get health care so I include that)

 

Agreed. This quote from an abstract discussing racial differences in heart failure drug response captures the pragmatism that seems warranted if these apparent differences in presentation and response are correct:

“It is important to accept that racial categorization acts as only a surrogate marker for genetic or other factors responsible for individual responses to drug therapy and that any identified differences will not apply to all members of each stratified group. Nonetheless, in managing a complex, common and often fatal condition such as heart failure, recognizing potential individual differences in drug responses should enable the responsible clinician to provide a tailored and evidence-based approach to patient treatment.”

 

Just wow on the idea that calling for minorities to be included in ME research is grievance/identify politics - particularly for a disease that's been branded as a condition of pampered white women. Jason's research highlighted the lack of minority representation as did the IOM. No more to say beyond @Mfairma and @Denise

It's a little more complicated in the US. Its true that lack of access to clinical care is a problem for any disease if you dont have insurance and cant pay out of pocket. And even if you do have insurance, it may only reimburse for 15 minute long visits, leaving the rest to be paid by the patient out of pocket. Hard to get a handle on ME in 15 minutes.

And I imagine we are not unique in gender bias with women's illnesses more likely to be dismissed. But then for ME, even if you are a white male with the financial resources to pay for clinical care out of pocket, it wont matter because the disease is contested/stigmatized. The doctors will dismiss what you report and either refuse to do anything or recommend treatments that harm.

 

Interesting article about countering inequality in genetic medicine:

Genetic Medicine Is Poised to Create New Inequality. Here’s How to Fix It.
To boost the participation of marginalized communities in genetic studies, doctors must first win back their trust.

"
...People of European descent still account for 88 percent of the genomes in genome-wide association studies, which form a key source of information for genetic reference databases. As a result, the era of genetic engineering and personalized or precision medicine — with its promise of delivering more effective treatments tailored to individual’s specific genetic profiles — is poised to usher in new health inequalities. To avoid this fate, we need more diverse genetic databases, but getting there won’t be easy.

As a first step, it’s helpful to consider why the database imbalance exists in the first place. Part of the reason is that genetic testing and genetic medicine are expensive and, as a result, accessible primarily to the wealthy, who are disproportionately white. But that isn’t the full picture. ..."

https://undark.org/2019/05/09/genet...to-create-new-inequality-heres-how-to-fix-it/ ​

Also - on this podcast Wilhelmina Jenkins talks (among other things) about CDC "not being able to find African-American patients" (largely because they don't look for them).
https://www.thecanary.co/podcasts/2...eets-the-millions-missing-wilhelmina-jenkins/

 

I daresay the Chinese are going to become leaders in genetic research in the foreseeable future, partly due to scale of economy and lower cost, partly cultural reasons, for example they don't have the same concerns about privacy as Western people.
They are already processing complete human genome sequences at an extremely impressive rate.

ME seems to be just as common in China too, though their approach to diagnosis, causes and treatment differs somewhat from the west.

 

FWIW, I made the chart below from the results of Leonard Jason's 1999 study "A Community-Based Study of Chronic Fatigue Syndrome."

It shows the prevalence rates that he found for various groups. The three vertical dots show the prevalence rate per 100,000 people surrounded above and below by +/- the standard error. The combined "Total" prevalence rate was 422 (+/-70) per 100,000 adults.

The investigators screened 28,673 people in 8 Chicago area neighborhoods by telephone. Several subsequent screenings, lab tests and interviews were done to rule out known physical and psychiatric conditions. Ultimately, 32 individuals were judged to meet the 1994 "Fukuda" definition (the 2003 CCC definition and 2011 ICC definition did not exist at the time of the study).

The "Other" group consisted of "1 Asian American, 1 American Indian, and 1 multiracial individual."