Differences in Symptoms among Black and White Patients with ME/CFS 2022, Jason and Torres

[Sly Saint]

Abstract
Study samples of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have primarily involved White subjects, so the literature on ethnic differences is sparse. The current study identified a sample of 19 Black patients diagnosed with ME/CFS and compared them with White patients with ME/CFS, as well as with healthy controls. The studies used a similar psychometrically sound assessment tool to assess symptoms in all subjects. Findings indicated there were significant differences between patients with ME/CFS versus controls, but few differences between patients who identified as Black or White. The results suggest there might be few symptom differences between patients with ME/CFS in these two ethnic groups. The implications of these findings are discussed.

https://www.mdpi.com/2077-0383/11/22/6708

 

[John Mac]

I thought ME was only supposed to affect white middle class women

 

[Mithriel]

This does not surprise me. On social media there are no clues to someone's race, gender or even where in the world they come from unless they choose to give that information but there is no difference in their disease.

Their experiences with medical authorities is another story though.

 

[rvallee]

Yuppie flu but also affects poor people because, "stress", I guess? Rich-world disease not seen in poor countries even though their lives are 100x more stressful and traumatic than yuppies. Super consistent generic mumbojumbo.

 

[Simon M]

indings indicated there were significant differences between patients with ME/CFS versus controls, but few differences between patients who identified as Black or White

I think this is the first specific study looking at ethnic differences, which is is a very important area. but I'm not sure how much we can conclude from these results. It's a very small study, and we don't know if patients of different ethnicities are equally representative of their ethnic groups.

 

[CRG]

I think this is the first specific study looking at ethnic differences, which is is a very important area. but I'm not sure how much we can conclude from these results. It's a very small study, and we don't know if patients of different ethnicities are equally representative of their ethnic groups.

It is a very difficult area to discuss in the context of the US because while its population as a whole shows wide genetic mixing, a major part of that mixing has been as a result of racial oppression - however the fact of it can't be ignored when it comes to research. I wouldn't be confident of the accuracy of this article but I think it covers some of the relevant areas: Race, Ancestry, and Genetic Composition of the U.S.

The more interesting aspect of ethnicity genetics for ME/CFS might be expected to come from relatively low genetically mixed populations which might show either exceptionally high or low levels of prevalence relative to global norms, potentially indicating protective or predisposing genes and/or distinct local protective or predisposing behaviours, and/or local protective or predisposing environmental factors.

And of course just because symptomology is similar across different ethnic/genetic groups that doesn't mean that underlying disease processes are.

 

[Shadrach Loom]

I don’t recall whether Decode ME asked for ethnicity, but presumably it did?

 

[Ravn]

What is it with Jason? He can be totally spot on on some aspects of ME and doesn't seem to get it at all in other areas.

On the one hand, over the course of his career, he's been one of the very few looking into the effects of genuine pacing - staying within one's energy envelope as opposed to GET-lite - and into the effects of facilitating pacing, e.g. getting patients some outside help with practical stuff like shopping and cleaning, in addition to education on energy management. He's also one of the very few looking at ME in non-white, non-middle to upper class communities. And he's one of the few actively trying to position and operationalise PEM as different from post-exertional fatigue.

Yet here he goes again, still talking about ME as effing fatigue! He's a psychologist for heaven's sake, surely he must understand that language can create and perpetuate stigma.

Equally puzzling, he doesn't draw the link between his own work on pacing and his own work on PEM. Counting symptoms via the DSQ, even taking into account frequency and severity, can only ever give a snapshot of symptom load, not of underlying disease severity, because the DSQ doesn't address the impact of pacing.

And, ok, so the current study didn't find any major differences in symptom load between White and Black participants, but I'm surprised the authors don't discuss the possibility - or probability, more likely - that in a larger, more statistically representative sample (for socio-economic status as well as colour) more Black pwME could turn out to be more badly affected due to less opportunity to pace adequately. Or maybe Black pwME actually manage better than White pwME by avoiding the mainstream system altogether and relying on their own community resources? Would be useful to know what's really going on.

That's why I'm so exasperated. These are all such important issues to be researched and Jason is one of the few who actually does this. If only he would take the next step and draw together the different strands of his research! It could lead to some seriously valuable findings

 

[Andy]

I don’t recall whether Decode ME asked for ethnicity, but presumably it did?

Yes, it does.

And he's one of the few actively trying to position and operationalise PEM as different from post-exertional fatigue.

Is he? From what I can remember about the critiques of the DSQ, it is that it doesn't do this.

 

[Ravn]

And he's one of the few actively trying to position and operationalise PEM as different from post-exertional fatigue.

Is he? From what I can remember about the critiques of the DSQ, it is that it doesn't do this.

Sorry, shouldn't have put "trying" but "trying (but failing)".

Trying by developing the DSQ - which does look at a wider range of symptoms than just fatigue. With patient input even. The DSQ used to assess current symptom load (not underlying severity) is certainly more valid than say Chalder's nonsense.

Failing because he is ignoring feedback from more critical patient voices who told him that he should be incorporating his own(!) findings on the effects of pacing on symptom load into the DSQ. That way we might end up with a much more useful tool. Instead he keeps talking up the DSQ:

The DSQ has demonstrated high test–retest reliability among patients and controls [12], shown strong internal consistency [8], and yielded valid, clinically useful results [13]. Moreover, the DSQ has been used to accurately differentiate those with ME/CFS from those with other chronic illnesses [14,15].

While the DSQ is less bad than other instruments, it's not as good as the quote above makes it sound. I'm worried that getting the DSQ established as the go-to not just for current symptom load but also, inappropriately, as a proxy for underlying severity will make it more difficult in the long run to get a better tool adopted widely, one that at least incorporates the one factor known to make a difference to symptom load, i.e. pacing.

Until then, just using the DSQ to look for differences in current symptom load in tiny cohorts - 19 Blacks and 19 Whites in this case - tells us very little, unfortunately. There are so many questions that need answering. It's possible Blacks are genetically more or less susceptible to ME and/or severe ME, a much larger study would be required to even begin to untangle this. It's possible Blacks get diagnosed less often or only with more severe disease, this also requires a much larger and more representative cohort. It's possible Blacks on average have better or worse opportunities to pace effectively, the DSQ doesn't capture this. It's possible Blacks are more or less likely to be harmed by being subjected to unsuitable "treatments" aimed at increasing activity, also not addressed. Etc etc etc

We need better.

 

[Trish]

I heartily agree with you about the problems with DSQ. I applaud the effort put into trying to find an instrument that reflects ME/CFS, but I think it fails on the key assessment of PEM, having no ability take into account the effects of pacing.

 

[adambeyoncelowe]

I think it's also possible that different races and ethnic groups are reported as having different symptoms for different reasons, and that might skew outcomes or diagnosis.

E.g., when looking at the qualitative data for NICE, there was some low quality evidence looking at ethnicity and race, and one of the themes was that Black people who said they had cognitive symptoms felt those symptoms were ignored more than physical symptoms, but there were also some issues around physical symptoms being seen as laziness, due to negative stereotypes.

So diagnosis was less likely overall, as neither physical nor cognitive symptoms were really appreciated in the right context. Then there were issues like intra-community pressures, culture, religion, and so on, not to mention fear or reluctance to engage with medical services for various reasons.

I also wonder whether things like the heritable risk of diabetes, for example, could be a factor. If diabetes puts you at higher risk of COVID, does it follow that you're also therefore at higher risk of long COVID? And does the same apply to ME caused by other viruses?

It could be a very useful study, but you would need more than 19 people. Racial mixing may confound results, too, but that's harder to control for, and may not be such an issue because everyone is a mix of something.

The larger your sample group, the more likely the group you're looking at is representative of the patients you'll be treating, anyway. It's fine for US researchers to study African Americans in the US rather than Nigerians in Nigeria, because that's a more accurate reflection of the patients they'll be treating.