Preprint A Signal for Voice and Speech Abnormalities in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2025, Grach et al

Nightsong

Nightsong

Senior Member (Voting Rights)
Abstract:
Background/Objectives: Patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may report abnormalities in voice and speech; however, no formal research has been conducted in this area.

Methods: An online mixed-methods survey was completed by 687 people with ME/CFS. 302 respondents completed the qualitative component (43.96%). Questions assessed disease experience with ME/CFS and post-exertional malaise without prompting on specific symptoms. Within the qualitative results, a search of the terms “speech, voice,” “words,” and “speak” was conducted.

Results: Excluding neurocognitive associations, colloquial phrases, and “speech therapy,” there were 38 mentions across 28 unique qualitative survey responses (9.27%) of the terms in the context of voice or speech changes.

Conclusions: A notable portion of respondents reported voice or speech changes to open-ended qualitative questions about their disease experience. More research is needed regarding the implications of voice and speech anomalies in ME/CFS pathology and disease monitoring.

Link (MDPI preprint, May 2025, open access)
 
9.27% (28) of respondents to a survey of people with ME/CFS mentioned speech related issues.

It's an interesting topic but the paper is limited, with little detail about the issues.

Disappointing to see this in the discussion
Preliminary evidence from related conditions supports the relevance of this domain. One pilot study of 27 patients with Long COVID assessed the outcomes of a 10‐week program consisting of biweekly 45‐minute online classes focused on mindfulness, breathing retraining, vocal exercises, and singing. Program feedback was reported to be very positive with associated improvements in breathing and general well‐being, and and notably, 14.3% of those meeting ME/CFS criteria prior to the intervention no longer met those criteria afterward [10].
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coming from an author team that includes the Scientific Director of US ME Action. It is implied that if speech issues are a symptom of ME/CFS, training aiming to fix the speech issues will fix ME/CFS. Never mind all the reasons why people might report improvement when there isn't, or natural improvement unrelated to the intervention. It's just plain misleading to include that paragraph in there. As I've said elsewhere tonight, we need our advocates to be better.
 
I don't recall having vocal problems in the early days of ME, but I certainly get them now.

Sometimes I have great difficulty with phone calls (or live discussions) due to my voice getting more and more crackly and indistinct. It's annoying when I'm trying to sing along with music on the radio!

I'm not sure whether it may be to do with hayfever though.

It doesn't happen all the time, and I'm pretty sure there is no treatment, certainly not from the idiotic 'mindfulness'.
 
Hutan said:
9.27% (28) of respondents to a survey of people with ME/CFS mentioned speech related issues.

It's an interesting topic but the paper is limited, with little detail about the issues.

Disappointing to see this in the discussion

coming from an author team that includes the Scientific Director of US ME Action. It is implied that if speech issues are a symptom of ME/CFS, training aiming to fix the speech issues will fix ME/CFS. Never mind all the reasons why people might report improvement when there isn't, or natural improvement unrelated to the intervention. It's just plain misleading to include that paragraph in there. As I've said elsewhere tonight, we need our advocates to be better.
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Complete ignorance of the fact many people with the disease won’t be able to do a course like that as well.

I’ve unfortunately over time gotten the impression the US scientific director of ME action to not be the best via understanding very severe ME/CFS.
 
Hutan said:
Disappointing to see this in the discussion
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More so looking at the numbers in the referenced paper (in which 'Long Covid' is defined as 'still experiencing respiratory symptoms and/or increased fatigue at least 28 days post diagnosis'):

Only data from participants who had completed 10 or more classes (50%) were included in the analysis (n = 21, (F = 19 (91.5%)). All of these participants completed the post-intervention survey. Analysis of the DPQ-SF showed a reduction in the number of participants meeting the criteria set by three algorithms (Fukoda: n = 15 (71.4%), Canadian model: n = 8 (38.1%), IOM: n = 10 (47.6%)). Across the three algorithms and 21 participants, there were 13 instances of improvement (no longer meeting criteria for CFS/ME) and four instances of dis-improvement (newly meeting criteria for CFS/ME) (Table 3).
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At intervention baseline, three participants (four post-intervention) reported difficulty controlling their bowel since COVID-19 onset and two had bladder issues (three post-intervention). One participant had both bowel and bladder issues associated with COVID-19, which were unchanged post-intervention. Eighteen participants had COVID-associated new or worsened difficulty with concentration and 17 had new or worsened issues with short-term memory. These factors were unchanged post-intervention. There was a high level of PTSD reported, related to participants’ COVID-19 illness and/or hospitalisation. Between 10 and 13 participants reported unpleasant dreams, memories, and active avoidance strategies to stop thinking about the experience at intervention baseline. These figures remained largely unchanged after the intervention.
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https://pmc.ncbi.nlm.nih.gov/articles/PMC8906430/

Edited to add: 40% of the participants had been hospitalised.
 
I’ve had voice problems. At one point, they got bad and I needed to have pretty complete voice rest for a week or two (can’t remember exact length now) to get on top of them. Pacing myself better these days in general which I think is helping with this symptom.
 
Gutted, I suffer a lot with voice issues and I’d have loved a decent piece of research. I really think it’s an overlooked symptom.

When I was mild I-started to lose my voice if I got a bug. Except I didn’t get a bug, it was a little crash. It progressed until I lost my voice for over a month (which isn’t ideal if you’re an office worker) and culminated in me now struggling daily.

The PIP wouldn’t have it that I can’t always speak because they heard me speak, but that’s only because I ration my speaking….

eta I had a great consultant who explained and showed me the issue. I hold my throat muscles wrongly, at times. This seems to be due to stress (physical, not mental) basically it’s hard work to stand up, sit up, and also hold your throat correctly, hence why you don’t.
 
Sore and or croaky throat is one of the symptoms I got a lot when undiagnosed for all those years - thinking it was laryngitis or part of flu type bug. Now it is less frequent but a good indication of how bad my symptoms are. Today I have done nothing other than have a telephone appointment with my counsellor. I haven’t spoken at all other than the call but because I’ve got PEM from a social get together at the weekend I started croaking after 5 minutes on the phone and after one hour I now have a sore throat.
 
I always feel as is I have mucus in my throat when PEM starts. And I think my voice has become weaker. Either way I have to limit myself to talking no more than 20 minutes at a time otherwise I get PEM. I keep telling people I have laryngitis because at least that's something they understand.
 
Utsikt said:
Would it be brainfog at least? And do you have any reason to believe that it could be fixed with therapy as opposed to just waiting for it to end?
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Funnily enough, as I have been doing exercises and silent rest over the past 8 months or so, I realised at one point that I was having more and better conversations (strength of voice-wise) however with this came the old problems I’d forgotten about - slurred words, word-finding difficulties etc

I needed the physio/exercises to help to improve my speech, I had certainly got into “bad habits” however the exercise is to “improve” things - it won’t resolve the problem because ME fatigue is also in play.
 
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