Research: 2 symptoms can identify PEM in ME/CFS

Posted on 03/29/2023 by wames

Two symptoms can accurately identify post-exertional malaise in ME/CFS

 

Experienced researchers into PEM at the Workwell Institute in California set out to find a way of diagnosing PEM and believe they have uncovered important clues that they now need to test further.

“Post-exertional malaise may manifest in a multitude of ways with different symptoms, timing, and intensity. Yet, the findings of this study indicate clinicians only need to focus on the presence and duration of just a few symptom categories and prolonged duration to identify its existence.”

Summary of symptom clusters at each time point during the study, which differentiated between people with ME/CFS and sedentary control subjects.

“Inquiring about post-exertional cognitive dysfunction, decline in function, and lack of positive feelings/mood may help identify PEM quickly and accurately.”

 

Two symptoms can accurately identify post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome, by Todd E Davenport, Lily Chu, Staci Stevens, Jared Stevens, Christopher Snell, Mark Van Ness, in Work, pp. 1-15, 2023 [DOI: 10.3233/WOR-220554

Research abstract:

BACKGROUND:
Post-exertional malaise (PEM) is the hallmark symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) yet its diverse manifestations make it difficult to recognize. Brief instruments for detecting PEM are critical for clinical and scientific progress.

OBJECTIVE:
To develop a clinical prediction rule for PEM.

METHOD:
49 ME/CFS and 10 healthy, sedentary subjects recruited from the community completed two maximal cardiopulmonary exercise tests (CPETs) separated by 24 hours. At five different times, subjects reported symptoms which were then classified into 19 categories. The frequency of symptom reports between groups at each time point was compared using Fisher’s exact test. Receiver operating characteristics (ROC) analysis with area under the curve calculation was used to determine the number of different types of symptom reports that were sufficient to differentiate between ME/CFS and sedentary groups. The optimal number of symptoms was determined where sensitivity and specificity of the types of symptom reports were balanced.

RESULTS:
At all timepoints, a maximum of two symptoms was optimal to determine differences between groups. Only one symptom was necessary to optimally differentiate between groups at one week following the second CPET. Fatigue, cognitive dysfunction, lack of positive feelings/mood and decrease in function were consistent predictors of ME/CFS group membership across timepoints.

CONCLUSION:
Inquiring about post-exertional cognitive dysfunction, decline in function, and lack of positive feelings/mood may help identify PEM quickly and accurately. These findings should be validated with a larger sample of patients.

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#newWAMESwebsite – another donation received!

Posted on 03/27/2023 by wames

The new WAMES website fund continues to grow!

 

A big thank you to 2 south Wales donors whose £50 donation takes us to £400!

It is just 7 weeks since the fundraising challenge began so we are encouraged by the growing income to keep planning the new site and we hope to launch later this year.

Can you help?

 

Find out more about our #newWAMESwebsite plans

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Research: Adults with ME/CFS report high rates of youth symptoms

Posted on 03/27/2023 by wames

Adults recall childhood experience of ME/CFS

 

Prof Leonard Jason’s team in Chicago surveyed 617 adults and found a surprisingly high number (43%) had begun feeling ill while adolescents. They analysed their symptoms and experiences and found common themes, which they believe can lead to a better understanding of the experience of ME/CFS.

Table 3. Summary of themes from qualitative analysis (N = 70)
Themes Central meanings % (n)
Feeling misunderstood Comments related to being misunderstood, dismissed, or not believed by peers, educators, and medical practitioners 20.0 (14)
Mental health Descriptions of poor or adverse mental health experiences, either as a trigger for ME/CFS, or as a result of the unique burden of this illness 18.6 (13)
Family pattern/history Mention of a family history of ME/CFS or related chronic illness 17.1 (12)
Healthy childhood preceding sick adulthood Descriptions of being previously very healthy, active children before illness onset in adulthood 15.7 (11)
School attendance Descriptions of poor school attendance or problems functioning in a school setting 14.3 (10)
Lack of clarity until adulthood Descriptions of being ill for most of the patient’s life, and not having received a formal diagnosis or understanding the cause of illness until much later in life 8.6 (6)
Sharing of resources Attempts to share valuable resources or information related to illness experiences with fellow blog participants 8.6 (6)
Isolation/poor social supports Feelings of loneliness or isolation as a result of functional limitations or stigmatization 5.7 (4)
Coping mechanisms Methods that patients used to deal with their illness, either in terms of symptom management or the mental/emotional toll brought about by illness challenges 2.9 (2)

“The present study has several implications for future investigation. It is important that researchers and clinicians better understand patient-reported illness and family genetic history, patterns of symptom onset, and environmental exposure throughout the lifespan for patients with ME/CFS.

Representation of these issues in the literature will bolster our understanding of possible illness triggers or predispositions to ME/CFS in childhood and adolescence, as were revealed in the present study. It will also aid in legitimizing the lived experiences of patients who do not feel believed of their illness. There continues to be a lack of representation and knowledge of this illness despite its prevalence.”

 

Adults with ME/CFS report surprisingly high rates of youth symptoms: a qualitative analysis of patient blog commentary, by Madeline Johnson,  Chelsea Torres, Halli Watts-Rich, Leonard Jason in Work, Pre-press, pp. 1-11, 09 March 2023 [doi;10.3233/WOR-220484]

Research abstract:

BACKGROUND:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating chronic illness that impacts pediatric populations.

OBJECTIVE:
The current study aimed to better understand adult perceptions of their experiences leading up to their diagnosis of ME/CFS.

METHOD:
Patients provided data regarding symptoms of ME/CFS they may have experienced during childhood through a popular community blog forum, with participants interacting via blog comments in real-time and across various geographical locations.

RESULTS:
Descriptive analyses indicated that roughly 43% of adult survey participants reported having developed ME/CFS prior to age 18. A standard content analysis of patient blog commentary revealed several themes, such as poor mental health, family pattern/history, healthy childhood preceding sick adulthood, feeling misunderstood, lack of clarity until adulthood, sharing of resources, poor school functioning, isolation/poor social supports, and coping mechanisms.

CONCLUSION:
There are unique benefits and insights that can be used by investigators who collaborate with patient organizations as a means of better understanding ME/CFS illness severity, presentation, and lived experiences.

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Have you received helpful psychological or well-being support?

Posted on 03/24/2023 by wames

The WNA asks about psychological support

 

The Wales Neurological Alliance (WNA) are representatives on the Neurological Conditions Implementation Group (NCIG)’s Psychological Support Group, tasked with looking at how access to appropriate psychological support services can be improved for individuals and carers whose lives are affected by a neurological condition.

The challenges for WNA in this work are to ensure that the work does not just focus on certain conditions which affect larger groups of the population in Wales, but also considers access for those with rarer neurological conditions (e.g. Spina Bifida; Dystonia; Ataxia).    [NB – and overlooked conditions like ME/CFS]

The Psychological Support Group is currently defining the scope of ‘psychological’ support from well-being services through to clinical intervention.

The group is also gathering examples of best practice across Wales, and will soon start to map services to understand what services exist, where they exist and how people are able to access them.

 

How can you support this work?

  • Share examples of good practice of well-being support and/or clinical support you have accessed (or simply know of) in the NHS or via other organisations (e.g. charities)
  • If you are waiting for access to NHS well-being/mental health or clinical psychology support, no matter where you live, let us know what the challenges are, and how long you have been waiting.

To share information on any of the above please email wnacoordinator@gmail.com

We will shortly be sharing a framework document to help WNA map services that WNA member organisations provide so please look out for more information on this in the next couple of months.

We will also be asking NCIG’s Psychological Support Group to meet with WNA member organisations and individuals living with neurological conditions and will come back to you with further information on how you can get involved.

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Research: Pacing with a heart rate monitor

Posted on 03/23/2023 by wames

Experience and attitudes towards Pacing using a heart rate monitor: survey results

 

A survey by researchers who were led by the Physios for ME group, found over 30 benefits to the use of heart rate monitors (HRM) by people with ME (PwME). The monitors reduced the severity of ME, and severity and duration of PEM, but a lack of knowledge meant some people were misusing their devices.

“The concerning aspect of the use of the HRM was that some participants were using too high a level of estimated VAT or were attempting to use zones when working with the heart rate monitor. “

The main difficulties identified in using the monitors were lack of support, financial cost and too restrictive. “There is a clear need for people with ME and healthcare professionals advising them to know how to use these devices specifically for ME.”

Over 100 devices were used by participants with the most popular being the Apple watch, followed by Garmin, Fitbit and Polar devices. The results show that all the devices have the potential to improve the level of severity of ME, the severity of PEM and rate of recovery from PEM, independent of whether a chest strap is used, but there is a need for a more bespoke device that is easy to use with functions designed for people with ME.

The researchers say: “It is important to recognise that HRM is a management tool that needs to be used in conjunction with many other management strategies such as rest, prioritising, and planning. HRM is not a cure for ME, but it can be used as a management tool with the potential to help most PwME.”

 

An international survey of experiences and attitudes towards pacing using a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome by Nicola Clague-Baker, Todd Davenport, Mohammed Madi, Kathryn Dickinson, Karen Leslie, Michelle Bull, Natalie Hilliard in Work, 2023, pp. 1-10, 13 March 2023 [DOI: 10.3233/WOR-220512]

Research abstract: 

BACKGROUND:
Myalgic encephalomyelitis (ME) is a complex, multi-system neurological condition. The defining feature of ME is post-exertional malaise (PEM) with over 30 symptoms triggered by physical, cognitive, emotional and social activity. The cause of PEM is unclear but one area of research using cardio-pulmonary exercise tests show a reduced ventilatory anaerobic threshold (VAT) with repeated tests leading to PEM.

Pacing with heart rate monitoring (HRM) provides feedback to maintain activity intensity below the VAT. There is only one piece of research investigating the use of HRM although a number of guidelines recommend it.

OBJECTIVE:
To identify the experiences and attitudes of people with ME towards HRM.

METHODS:
A 40 question online survey was devised and released on ME websites, Twitter and Facebook pages. People with ME read the information sheet and followed an online link to the survey. The survey was open for three weeks and all answers were anonymous.

RESULTS:
488 people with ME completed the survey. Most participants were female, 35-50 years and with a reported illness of greater than 5 years. Over 100 types of HR monitor used. Over 30 benefits and over 30 negatives identified. HRM reduced severity of ME and severity and duration of PEM.

CONCLUSION:
Although there are limitations, HRM has many benefits including helping PwME to understand and manage their PEM and support them to increase their activities, including work. There is a need for more research and education of healthcare professionals in the safe use of HRM.

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Research: PEM in long COVID & ME/CFS

Posted on 03/21/2023 by wames

Post-Exertional Malaise in long COVID compared to ME/CFS

 

Researchers at the Bateman Horne clinic in Utah, USA asked long COVID and ME/CFS patients about PEM which they described as:

“an unusual worsening of symptoms after minimal physical or mental exertion, which can occur or persist 24 hours or more after the exertion”

The majority in both groups indicated PEM occurred within hours of exertion and lasted for several days.  Fatigue, muscle and joint pain, infection and immune reaction, neurologic and gastrointestinal symptoms, and orthostatic intolerance all worsened.

Long COVID respondents reported significantly more sleepiness, respiratory issues, depression and anxiety, irregular body temperature and excessive thirst than ME/CFS patients. Difference could be due to the nature of the COVID virus or because ME/CFS patients had been sick longer and had learned to manage some symptoms better.

The majority of both groups rested to recover from PEM, plus a variety of things to recover including sleep, hydration, and diet.  Most ME/CFS patients used physical awareness to prevent PEM whereas Long COVID respondents prevented PEM by avoiding triggers.

The researchers believe “Asking about PEM in people that have lingering symptoms following COVID-19 is essential to mitigate progression and possible development of ME/CFS.”

 

Post-exertional malaise among people with long COVID compared to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), by Suzanne D Vernon, Megan Hartle, Karena Sullivan, Jennifer Bell, Saeed Abbaszadeh, Derya Unutmaz, Lucinda Bateman in Work, pp. 1-8, 2023 Mar 2023 [doi: 10.3233/WOR-220581]

Research abstract:

Background:
Long COVID describes a condition with symptoms that linger for months to years following acute COVID-19. Many of these Long COVID symptoms are like those experienced by patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Objective:
We wanted to determine if people with Long COVID experienced post-exertional malaise (PEM), the hallmark symptom of ME/CFS, and if so, how it compared to PEM experienced by patients with ME/CFS.

Methods:
A questionnaire that asked about the domains of PEM including triggers, experience, recovery, and prevention was administered to 80 people seeking care for Long COVID at Bateman Horne Center. Their responses were compared to responses about PEM given by 151 patients with ME/CFS using chi-square tests of independence.

Results:
All but one Long COVID respondent reported having PEM. There were many significant differences in the types of PEM triggers, symptoms experienced during PEM, and ways to recover and prevent PEM between Long COVID and ME/CFS. Similarities between Long COVID and ME/CFS included low and medium physical and cognitive exertion to trigger PEM, symptoms of fatigue, pain, immune reaction, neurologic, orthostatic intolerance, and gastrointestinal symptoms during PEM, rest to recover from PEM, and pacing to prevent PEM.

Conclusion:
People with Long COVID experience PEM. There were significant differences in PEM experienced by people with Long COVID compared to patients with ME/CFS. This may be due to the newness of Long COVID, not knowing what exertional intolerance is or how to manage it.

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Recovery from exercise in persons with ME/CFS

Posted on 03/20/2023 by wames

Measuring recovery from exercise in ME/CFS

 

US researchers used a  2-day exercise study (CPET) to discover how long it took people with ME/CFS to recover from exercise. The 80 participants with ME/CFS took an average of almost 2 weeks to recover from a 2-day CPET, whereas healthy people only needed an average of two days.

Almost 10% of those with ME/CFS took more than 3 weeks to recover, with one person feeling he had not recovered after a full year. Recovery time back to the pre-exercise level was not affected by the severity of symptoms prior to taking part in the study.

Excerpts:

“it is likely that persons with ME constantly live in the long tail of the recovery response. While activities of daily living are not as stressful as the 2-day CPET, recovery from less intense activities of daily living is likely to follow a similar decay curve.

Such a response to physical activity would be consistent with the ubiquitous complaint from persons with ME that they have constant and persistent PEM. Most persons with ME would constantly experience exertion falling on an incompletely recovered decay curve, and thus their symptoms would increase to a high steady-state level.”

“Our data suggests that around 7–8% will have a prolonged recovery of 1–2 months, with a very small percentage of ME subjects feeling that they never recover.”

The researchers had not found this response to exercise outside ME/CFS, until people with long COVID began to report PEM from 2020.

 

Recovery from Exercise in Persons with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), by Geoffrey E Moore, Betsy A Keller, Jared Stevens, Xiangling Mao, Staci R Stevens, John K Chia, Susan M Levine, Carl J Franconi  and Maureen R Hanson in Medicina 2023, 59(3), 571; [doi.org/10.3390/medicina59030571] 15 March 2023
(This article belongs to the Special Issue Advances in ME/CFS Research and Clinical Care)

 

Research abstract:

Background and Objectives:

Post-exertional malaise (PEM) is the hallmark of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), but there has been little effort to quantitate the duration of PEM symptoms following a known exertional stressor. Using a Symptom Severity Scale (SSS) that includes nine common symptoms of ME/CFS, we sought to characterize the duration and severity of PEM symptoms following two cardiopulmonary exercise tests separated by 24 h (2-day CPET).

Materials and Methods: Eighty persons with ME/CFS and 64 controls (CTL) underwent a 2-day CPET. ME/CFS subjects met the Canadian Clinical Criteria for diagnosis of ME/CFS; controls were healthy but not participating in regular physical activity. All subjects who met maximal effort criteria on both CPETs were included. SSS scores were obtained at baseline, immediately prior to both CPETs, the day after the second CPET, and every two days after the CPET-1 for 10 days.

Results: There was a highly significant difference in judged recovery time (ME/CFS = 12.7 ± 1.2 d; CTL = 2.1 ± 0.2 d, mean ± s.e.m., Chi2 = 90.1, p < 0.0001). The range of ME/CFS patient recovery was 1–64 days, while the range in CTL was 1–10 days; one subject with ME/CFS had not recovered after one year and was not included in the analysis. Less than 10% of subjects with ME/CFS took more than three weeks to recover. There was no difference in recovery time based on the level of pre-test symptoms prior to CPET-1 (F = 1.12, p = 0.33).

Mean SSS scores at baseline were significantly higher than at pre-CPET-1 (5.70 ± 0.16 vs. 4.02 ± 0.18, p < 0.0001). Pharmacokinetic models showed an extremely prolonged decay of the PEM response (Chi2 > 22, p < 0.0001) to the 2-day CPET.

Conclusions:

ME/CFS subjects took an average of about two weeks to recover from a 2-day CPET, whereas sedentary controls needed only two days. These data quantitate the prolonged recovery time in ME/CFS and improve the ability to obtain well-informed consent prior to doing exercise testing in persons with ME/CFS. Quantitative monitoring of PEM symptoms may provide a method to help manage PEM.

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ME/CFS and Adferiad (Recovery) Long COVID

Posted on 03/17/2023 by wames

ME/CFS and Adferiad (Recovery) services

 

People in Wales, and further afield, have been expressing concern about plans to place ME/CFS services in existing Long COVID services. The Health Minister announced on the 14th March that there would be additional funding to widen access to Adferiad (Recovery) services to

“better support people with conditions such as ME/CFS and Fibromyalgia to get a diagnosis, manage their symptoms and access rehabilitation services”.

The name confusion

It is important to know that the Adferiad Recovery programme set up by substance abuse and mental health charities is NOT the same as the Welsh Government Adferiad (Recovery) programme for Long COVID. Each Health Board has set up a long COVID service based on common goals of the Adferiad programme which has been assessed regularly. So why do they have the same name? A VERY good question!

Is linking ME/CFS with other conditions a good idea?

We have been assured many times over the years by the Welsh Government and Health Boards that there is NO money for dedicated services. It was also clear that there had also been little will within NHS Wales to champion appropriate services for ME. Whether we like it or not long COVID has shone a light on ME and many with long COVID also meet the ME criteria, boosting numbers considerably and therefore adding to the need for services. [Research suggests 40 – 54% of people with long COVID have developed ME/CFS.]

There is an overlap in both symptoms and underlying dysfunction in ME/CFS, long COVID and Fibromyalgia. WAMES believes that people with ME triggered by COVID deserve a better service, just as people whose ME is triggered by other viruses and causes deserve to be recognised and offered services.

Diagnosis

Accurate diagnosis is where all good healthcare begins, whether that is diagnosis of a condition or acknowledgement of a symptom of unknown cause, that is disruptive to daily life.

All Heath Boards tell WAMES they are encouraging use of the 2021 ME/CFS NICE guideline in primary care. We don’t know yet how successful that is.

This is where you can help

  • Do you have a diagnosis? Is it recorded in your medical notes as ME/CFS?
  • Is it coded in the notes using SNOMED or READ or ICD codes?
  • If not, would you consider asking a GP if they agree with your suspicion that you have ME/CFS by checking it against the NICE guideline?

Until Health Boards know how many people there are living with ME in their area they can’t plan properly for services. They would probably be very surprised at how prevalent ME/CFS is these days!

Can a combined post-viral illness clinic work?

Only if everyone involved has a thorough understanding of the needs of each condition, are constantly updating their skills, if the pathways are clear, they take a patient-centred approach and there is appropriate management support for each condition.

WAMES has been asking Health Boards for their Service to include:

  • Assessment and care and support planning by an ME/CFS specialist team – as outlined at NICE 1.5
  • Managing ME/CFS and symptom management support – as outlined at NICE 1.11 onwards.

We believe that much that will help people with ME can also help people with other overlapping conditions. It would be churlish to refuse to share our hard earned knowledge! And maybe there are self-management approaches we can learn from others.

WAMES has met a number of health professionals throughout Wales who really want to push forward service development for ME/CFS but some have also observed that in their Health Board implementation of the full NICE guideline can only happen in stages, for a variety of reasons.

That is not ideal. However WAMES is keen to offer support to those willing to take the first steps and to keep speaking out where we believe service development continues to fail people with ME/CFS, to ensure the Welsh Government money really does begin to improve diagnosis, management and support for all with ME/CFS and PEM/PESE.

#Implement NICEmecfs      #LearnFromME

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Research: ME/CFS is common in Long COVID patients

Posted on 03/16/2023 by wames

ME/CFS is common in PASC / long COVID

 

A US long COVID clinic found that 43% of PASC/ long COVID patients met the criteria for ME/CFS though they acknowledge that a larger more diverse group of patients might alter the figures.

“Fatigue, post-exertional malaise, brain fog, unrefreshing sleep, and daytime sleepiness were the most prevalent and severe symptoms. This commonality between ME/CFS and ME/CFS-PASC may suggest a shared pathobiology. Therefore, defining specific subtypes within the umbrella of PASC/post-COVID conditions can help us understand different pathogenic mechanisms to tailor treatment.”

Flow chart. *Positive SARC-CoV-2 test and over 28 days with symptoms. **Severe fatigue, unrefreshing sleep, PEM, and brain fog or orthostatic intolerance.

Research abstract:

Background:

The global prevalence of PASC is estimated to be present in 0·43 and based on the WHO estimation of 470 million worldwide COVID-19 infections, corresponds to around 200 million people experiencing long COVID symptoms. Despite this, its clinical features are not well-defined.

Methods:

We collected retrospective data from 140 patients with PASC in a post-COVID-19 clinic on demographics, risk factors, illness severity (graded as one-mild to five-severe), functional status, and 29 symptoms and principal component symptoms cluster analysis. The Institute of Medicine (IOM) 2015 criteria were used to determine the Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) phenotype.

Findings:

  • The median age was 47 years,
  • 59.0% were female;
  • 49.3% White, 17.2% Hispanic, 14.9% Asian, and 6.7% Black
  • Only 12.7% required hospitalization.
  • Seventy-two (53.5%) patients had no known comorbid conditions.
  • Forty-five (33.9%) were significantly debilitated. The median duration of symptoms was 285.5 days, and the number of symptoms was 12.

The most common symptoms were;

  • fatigue (86.5%),
  • post-exertional malaise (82.8%),
  • brain fog (81.2%),
  • unrefreshing sleep (76.7%), and
  • lethargy (74.6%).

Forty-three percent fit the criteria for ME/CFS, majority were female, and obesity (BMI > 30 Kg/m2) (P = 0.00377895) and worse functional status (P = 0.0110474) were significantly associated with ME/CFS.

Interpretations: Most PASC patients evaluated at our clinic had no comorbid condition and were not hospitalized for acute COVID-19.

One-third of patients experienced a severe decline in their functional status. About 43% had the ME/CFS subtype.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is common in post-acute sequelae of SARS-CoV-2 infection (PASC): Results from a post-COVID-19 multidisciplinary clinic, by Hector Bonilla, Tom C Quach, Anushri Tiwari, Andres E Bonilla, Mitchell Miglis, Phillip C Yang, Lauren E Eggert, Husham Sharifi, Audra Horomanski, Aruna Subramanian, Liza Smirnoff, Norah Simpson, Houssan Halawi, Oliver Sum-Ping, Agnieszka Kalinowski, Zara M Patel, Robert William Shafer, Linda C Geng in Front Neurol. 2023 Feb 24;14:1090747; [doi:10.3389/fneur.2023.1090747]

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Research: Symptom-based clusters (sub-groups) in ME/CFS

Posted on 03/15/2023 by wames

Finding sub-groups in ME/CFS

 

Prof Leonard Jason worked with Dutch researchers to identify sub-groups of ME/CFS patients by symptom clusters. They used Leonard’s DePaul Symptom Questionnaire and data analysis software SOM. 45 subgroups were identified, some small. The researchers admit there are limitations with the study but have shown that sub-typing is possible.

“Classification of ME/CFS patients according to severity and symptoms patterns might be useful to develop tailored treatment options. Future studies are needed to investigate the relation between the identified symptom clusters and clinically relevant outcomes in patients with ME/CFS, including health-related quality of life and daily functioning.”

Table 2

DSQ-2 symptoms

Dutch database (n = 337) US database (n = 252)
Composite score
Mean (SD)		 Participants at 2/2 threshold (%) Composite score
Mean (SD)		 Participants at 2/2 threshold (%)
Fatigue/extreme tiredness 75.4 (17.5) 90.7 81.4 (15.1) 98.4
Post-exertional malaise
 Dead, heavy feeling after starting exercise 50.1 (26.9) 58.3 76.2 (24.7) 87.7
 Next-day soreness or fatigue after everyday activities 66.6 (20.8) 80.7 75.3 (21.6) 90.9
 Mentally tired after the slightest effort 61.7 (23.7) 72.8 68.2 (23.0) 86.1
 Physically tired after minimum exercise 67.0 (21.7) 81.2 77.8 (20.6) 92.9
 Physically drained or sick after mild activity 59.8 (22.8) 70.3 73.2 (22.5) 88.9
 Muscle fatigue after mild physical activity 63.1 (25.7) 74.4 72.2 (26.1) 86.1
 Worsening of symptoms after mild physical activity 67.7 (23.7) 78.5 78.8 (21.9) 92.9
 Worsening of symptoms after mild mental activity 59.1 (25.9) 66.5 63.4 (27.0) 76.6
 Difficulty reading (dyslexia) after mild physical or mental activity 41.2 (30.8) 40.6 44.6 (33.4) 49.2
Sleep
 Unrefreshing sleep 73.9 (22.3) 88.0 81.7 (19.1) 94.8
 Need to nap daily 56.2 (32.3) 56.4 58.1 (30.0) 66.7
 Problems falling asleep 47.4 (28.0) 49.9 55.9 (29.3) 63.9
 Problems staying asleep 52.7 (28.6) 56.4 58.4 (30.5) 65.1
 Waking up early in the morning (e.g. 3 AM) 43.2 (28.3) 43.1 48.9 (30.2) 49.6
 Sleeping all day and staying awake all night 18.4 (22.8) 9.5 17.7 (27.2) 16.3
 Daytime drowsiness 52.6 (26.9) 55.3 63.2 (26.9) 77.0
Pain
 Pain or aching in muscles 59.6 (24.8) 70.0 67.8 (26.0) 80.2
 Joint pain 51.1 (29.9) 59.4 57.2 (32.9) 64.7
 Eye pain 31.2 (24.6) 24.8 31.8 (28.8) 31.0
 Chest pain 23.1 (21.8) 11.7 25.8 (25.7) 19.0
 Bloating 38.2 (25.8) 37.6 47.1 (28.1) 50.4
 Abdomen/stomach pain 36.4 (23.2) 30.8 42.1 (27.7) 43.7
 Headaches 24.8 (23.8) 42.8 50.5 (26.3) 55.2
 Aching of the eyes or behind the eyes 29.0 (24.6) 17.4 36.8 (29.8) 36.9
 Sensitivity to pain 27.0 (30.0) 24.0 51.3 (32.9) 59.5
 Myofascial pain 15.7 (25.7) 12.5 26.3 (34.0) 30.2
Neurocognitive
 Muscle twitches 26.9 (22.3) 16.6 34.4 (25.5) 29.8
 Muscle weakness 44.7 (27.4) 45.2 63.5 (27.2) 74.6
 Sensitivity to noise 54.7 (26.8) 57.8 61.0 (26.8) 69.8
 Sensitivity to bright lights 47.3 (28.4) 46.0 53.2 (29.0) 55.6
 Problems remembering things 52.2 (22.5) 58.0 67.9 (24.1) 84.5
 Difficulty paying attention for a long period of time 60.8 (24.0) 73.3 70.4 (24.3) 86.1
 Difficulty finding the right word to say, or expressing thoughts 48.5 (22.4) 50.7 61.1 (24.7) 75.4
 Difficulty understanding things 33.3 (21.5) 23.2 48.5 (25.1) 55.2
 Only able to focus on one thing at a time 57.1 (25.2) 67.6 64.9 (25.1) 78.6
 Unable to focus vision 21.5 (23.6) 13.6 35.1 (27.4) 31.7
 Unable to focus attention 34.6 (22.9) 27.2 50.9 (25.1) 63.1
 Loss of depth perception 18.5 (25.6) 11.7 24.0 (29.5) 21.4
 Slowness of thought 47.3 (26.4) 50.7 56.9 (25.5) 71.4
 Absent-mindedness or forgetfulness 44.0 (22.6) 43.3 60.7 (24.5) 78.6
 Feeling disoriented 20.2 (22.7) 11.2 35.9 (25.3) 29.4
 Slowed speech 21.3 (22.7) 12.0 32.6 (27.1) 31.3
 Poor coordination 30.0 (25.1) 21.3 46.2 (28.6) 52.8
Autonomic
 Bladder problems 22.1 (28.0) 18.3 35.6 (32.5) 34.5
 Urinary urgency 34.5 (27.6) 31.3 39.7 (31.2) 42.9
 Waking up at night to urinate 51.2 (29.2) 49.6 45.7 (32.0) 46.4
 Irritable bowel problems 39.8 (29.7) 42.2 49.1 (32.7) 55.6
 Nausea 28.4 (21.5) 16.6 33.8 (26.9) 30.6
 Feeling unsteady on feet 34.2 (24.1) 23.7 44.0 (28.8) 46.4
 Shortness of breath or trouble catching breath 27.9 (22.2) 17.7 39.8 (28.0) 37.7
 Dizziness or fainting 31.3 (22.2) 19.6 42.1 (27.6) 43.7
 Irregular heart beats 27.8 (23.0) 16.1 30.4 (26.8) 28.6
 Heart beats quickly after standing 31.3 (28.9) 27.0 43.8 (32.6) 46.0
 Blurred or tunnel vision after standing 21.9 (26.4) 16.6 30.5 (31.2) 29.0
 Graying or blacking out after standing 32.5 (24.2) 23.2 22.7 (28.1) 17.5
 Inability to tolerate an upright position 27.3 (27.9) 18.3 46.7 (34.3) 52.0
Neuroendocrine
 Losing weight without trying 7.1 (16.7) 4.1 13.2 (21.9) 7.5
 Gaining weight without trying 18.3 (25.8) 13.9 36.3 (36.6) 41.3
 Lack of appetite 19.3 (21.4) 11.4 30.3 (25.8) 25.4
 Sweating hands 12.9 (21.2) 8.2 16.6 (25.7) 13.1
 Night sweats 33.0 (27.3) 29.2 36.1 (30.5) 31.3
 Cold limbs 51.9 (26.4) 58.3 46.9 (29.9) 48.4
 Feeling chills or shivers 31.7 (23.1) 21.5 34.0 (26.3) 32.9
 Feeling hot or cold for no reason 42.4 (24.8) 38.7 51.7 (26.9) 61.1
 Felling like you have a high temperature 29.6 (22.6) 19.3 33.0 (27.2) 29.4
 Feeling like you have a low temperature 20.7 (25.5) 15.8 24.7 (26.7) 21.8
 Alcohol intolerance 15.1 (30.8) 14.2 40.1 (36.9) 34.1
 Intolerance to extremes of temperature 42.3 (35.0) 41.7 64.9 (31.1) 72.2
 Fluctuations in temperature throughout the day 30.3 (28.5) 26.4 45.2 (31.8) 48.0
Immune
 Sore throat 30.1 (20.4) 17.4 37.3 (25.7) 32.9
 Tender/sore lymph nodes 23.4 (22.9) 14.4 37.5 (30.5) 36.5
 Fever 9.2 (16.9) 1.6 16.1 (22.1) 9.9
 Flu-like symptoms 36.1 (23.7) 28.3 51.8 (27.3) 57.1
 Sensitivity to smells, food, medications, or chemicals 25.6 (27.1) 19.1 45.0 (32.7) 46.8
 Viral infections with prolonged recovery periods 16.9 (24.7) 9.5 35.0 (32.7) 32.5
 Sinus infections 15.2 (24.0) 10.4 21.9 (26.2) 19.4
Others
 Sensitivity to mold 18.3 (28.9) 16.6 27.2 (36.3) 30.6
 Sensitivity to vibration 22.9 (29.9) 18.3 30.6 (35.0) 32.9

Symptom-based clusters in people with ME/CFS: an illustration of clinical variety in a cross-sectional cohort, by Anouk W Vaes, Maarten Van Herck, Qichen Deng, Jeannet M Delbressine, Leonard A Jason, Martijn A Spruit in J Transl Med. 2023 Feb 10;21(1):112 [doi: 10.1186/s12967-023-03946-6]

 

Research abstract

Background:

Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is a complex, heterogenous disease. It has been suggested that subgroups of people with ME/CFS exist, displaying a specific cluster of symptoms. Investigating symptom-based clusters may provide a better understanding of ME/CFS. Therefore, this study aimed to identify clusters in people with ME/CFS based on the frequency and severity of symptoms.

Methods:

Members of the Dutch ME/CFS Foundation completed an online version of the DePaul Symptom Questionnaire version 2. Self-organizing maps (SOM) were used to generate symptom-based clusters using severity and frequency scores of the 79 measured symptoms. An extra dataset (n = 252) was used to assess the reproducibility of the symptom-based clusters.

Results:

Data of 337 participants were analyzed (82% female; median (IQR) age: 55 (44-63) years). 45 clusters were identified, of which 13 clusters included ≥ 10 patients. Fatigue and PEM were reported across all of the symptom-based clusters, but the clusters were defined by a distinct pattern of symptom severity and frequency, as well as differences in clinical characteristics. 11% of the patients could not be classified into one of the 13 largest clusters. Applying the trained SOM to validation sample, resulted in a similar symptom pattern compared the Dutch dataset.

Conclusion:

This study demonstrated that in ME/CFS there are subgroups of patients displaying a similar pattern of symptoms. These symptom-based clusters were confirmed in an independent ME/CFS sample. Classification of ME/CFS patients according to severity and symptom patterns might be useful to develop tailored treatment options.

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