Health outcomes of sensory hypersensitivities in myalgic encephalomyelitis/chronic fatigue syndrome and multiple sclerosis, 2023, Maeda et al.

[SNT Gatchaman]

Health outcomes of sensory hypersensitivities in myalgic encephalomyelitis/chronic fatigue syndrome and multiple sclerosis
Kensei I. Maeda; Mohammed F. Islam; Karl E. Conroy; Leonard Jason

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a poorly understood chronic illness with many case definitions that disagree on key symptoms, including hypersensitivities to noise and lights. The aim of the current study was to understand the prevalence rates and characteristics of these symptoms amongst people with ME/CFS and to compare them to people with another chronic illness, multiple sclerosis (MS).

International datasets consisting of 2,240 people with either ME/CFS or MS have completed the DePaul Symptom Questionnaire (DSQ) and the Short Form Health Survey Questionnaire (SF-36). Hypersensitivities to noise and lights were indicated from items on the DSQ, and participants were analyzed against DSQ and SF-36 subscales through a multivariate analysis of covariance.

There were significantly higher percentages of people with hypersensitivities in the ME/CFS sample compared to the MS sample. Regardless of illness, participants that exhibited both hypersensitivities reported greater symptomology than those without hypersensitivities. Healthcare providers and researchers should consider these symptoms when developing treatment plans and evaluating ME/CFS case diagnostic criteria.

Link (Psychology, Health & Medicine)

 

[Hutan]

There's a paywall.

This has the potential to be an interesting study. It would be helpful to know the incidence of noise and light sensitivities, and to understand how well they are correlated with overall illness severity in ME/CFS and in MS. I would have liked to see some information about this in the abstract.

 

[SNT Gatchaman]

Participants for the current study were derived from multiple international datasets. Initially, there was a total of 2,402 participants with ME/CFS and 270 participants with MS for the current study. Following exclusionary procedures due to incomplete DSQ, SF- 36 and demographic data, the sample sizes were reduced to 2,042 participants with ME/ CFS and 198 participants with MS.

Samples ranged from —

DePaul
Researchers at DePaul University collected a convenience sample of adults who self-identified as having ME/CFS. Participants were at least 18 years of age and had either self- reported or a medical diagnosis of ME or CFS. After removing participants with incomplete data, the sample included 210 participants (83.3% female) with a mean age of 52.1 years (SD = 11.2).

to —

Biobank 2016 sample
Solve ME/CFS Initiative collected a sample of adults who were recruited by physicians who specialized in diagnosing ME/CFS. After removing participants with incomplete data, the sample included 481 participants (77.1% female) with a mean age of 54.8 years (SD = 12.1).

Direct clinical assessments of the hypersensitivities were not available for the current study, and so certain DSQ items were utilized instead. The DSQ items 34 and 35 assess people’s frequency and severity of lights and noise sensitivities throughout the past six months. A respondent was considered as having a hypersensitivity if frequency was rated as ‘about half the time’ or more and severity was rated as ‘moderate’ or more

Participants were categorized into four hypersensitivity groups: those with no hypersen- sitivities (‘None’), those with only a noise hypersensitivity (‘Noise only’), those with only a lights hypersensitivity (‘Lights only’), and those with both hypersensitivities (‘Both’).

 

[SNT Gatchaman]

The findings indicate that these symptoms are highly prevalent among people with ME/CFS, with nearly three quarters of the sample reporting at least one of these two symptoms.

Additionally, participants with ME/ CFS were more likely to experience both hypersensitivities than one alone, which is important for clinicians treating patients with ME/CFS. As symptoms appear together more frequently, it would be beneficial to have treatments that address both simultaneously. The participants with MS were less likely to experience both hypersensitivities, serving as a possible differentiating criterion between ME/CFS and MS.

Yes I agree treatments would be beneficial!

There was a notable lack of statistical differences in DSQ and SF-36 subscales between participants with only noise hypersensitivities and those with only lights hypersensitiv- ities. This suggests that regardless of the type of sensory information, these hypersensitivities impact functioning in similar ways, potentially illustrating the biological mechanisms of these symptoms.

(Discusses the salience network as a possible mechanism.)

Limitations discussed, including variable patient inclusions including self-report and self-report from questionnaires.

 

[SNT Gatchaman]

 

[SNT Gatchaman]

 

[SNT Gatchaman]

 

[Hutan]

The participants with MS were less likely to experience both hypersensitivities, serving as a possible differentiating criterion between ME/CFS and MS.

Isn't that a bit of a weird statement? MS has MRI imaging that eventually shows the physical problem - there's no need to resort to whether there are hypersensitivities or not to differentiate it from ME/CFS. Even if there was, 16% of the people with MS in this sample reported having both hypersensitivities, and 50% of the people with ME/CFS in this sample didn't report having both hypersensitivities, so it wouldn't be a very accurate differentiator.

 

[RedFox]

Finally, a paper on this!

 

[bobbler]

There's a paywall.

This has the potential to be an interesting study. It would be helpful to know the incidence of noise and light sensitivities, and to understand how well they are correlated with overall illness severity in ME/CFS and in MS. I would have liked to see some information about this in the abstract.

Agreed. It is an important area.

I'd also like the distinction/aspect where it mightn't be in the 'hypersensitive' zone but noise/light being 'exertion' to be something that is described or studied.

When for example you read about the going into hospital experiences for those with very severe ME, you remember that when it is for long enough periods of time even those with mild ME are affected by the lack of quiet and bright lights and their health goes down and they then become 'hypersensitive' and you have that vicious circle.

And as well as it being very unpleasant I'm not sure that it has been fully elucidated or understood that continual ignoring or pushing of these limits regarding noise and light and so on leads to someones health being ruined very quickly. It's not like with a migraine where it goes away, you recover eventually and you feel a bit bitter about that person who didn't turn their music down whilst you were suffering. Or that they are sensitive and need to 'get used to it' (exposure therapy) or have ear plus or glasses that take the edge off.

In the comparison with conditions like MS I could sort of imagine there are similarities and differences in this particular aspect of the phenomenon that it would be interesting to explore. Because MS has the fatiguability component and also has the relapse and progression types and often do need increased rest and decreased exertion vs normal healthy controls (and whether 'sitting down' but in a noisy bright atmosphere would count for them as 'being exerted' instead of 'rest' too).

 

[bobbler]

Isn't that a bit of a weird statement? MS has MRI imaging that eventually shows the physical problem - there's no need to resort to whether there are hypersensitivities or not to differentiate it from ME/CFS. Even if there was, 16% of the people with MS in this sample reported having both hypersensitivities, and 50% of the people with ME/CFS in this sample didn't report having both hypersensitivities, so it wouldn't be a very accurate differentiator.

It also hugely depends for ME/CFS on how you categorise/define 'hypersensitivities' and the severity of the condition. ie I wouldn't be surprised if nearly all with ME/CFS had them. But I suspect the type, impact of them and what they are (if they happen when in PEM or over-exerted etc) varies with severities as well as by individuals.

But those with ME/CFS live in a very strange world where most/many (?) of them have no allowances made for their needs, even if they state them (they get dismissed as nonsense or just ignored) so might still be in the middle of a busy open-plan office with bright lights and noise and no adjustments in a way that those with MS there might be a possibility if still working those around them had the common sense not to do that to them etc. That's quite different in 'hypersensitivity' definition to needing to be in a dark room with dark glasses and headphones.

I'd be intrigued for example as to whether anyone with MS could manage to go and watch an IMAX-type movie at the cinema without it making them ill or at least exhausting them.

 

[Dolphin]

https://www.meresearch.org.uk/noise-and-light-hypersensitivity-in-me-cfs/

Takeaway messages

ME/CFS is diagnosed using the presence or absence of certain key symptoms, alongside the exclusion of other potential illnesses.

This exclusionary requirement of the diagnosis for ME/CFS means that it is particularly important to be able to differentiate between other illnesses with similar symptom profiles, such as multiple sclerosis (MS).

A recent study aimed to better understand noise and light hypersensitivities in people with ME/CFS and MS, and whether these symptoms can differentiate between the two disease groups.
Compared with those with MS, more people with ME/CFS had both noise and light hypersensitivity together.

In both illnesses, those who reported having noise and light hypersensitivity together were found to have lower levels of physical and mental functioning compared with those who had no hypersensitivity.

While hypersensitivity to noise and light did not accurately differentiate all people with ME/CFS from those with MS, the presence of noise and light hypersensitivity did give a useful indication of overall level of functioning.

The findings of the study are limited by the methods used to diagnose ME/CFS and the lack of clinical assessment of noise and light hypersensitivity.

More research is needed using a standard case definition for ME/CFS and clinically assessed measures of hypersensitivity – both noise and light, but also other types of hypersensitivity.