Welsh long COVID services to be opened up to ME/CFS & FM

Posted on 03/14/2023 by wames

Funding boost for services for long-term conditions

 

Health Minister Eluned Morgan has announced increased funding for Adferiad (long COVID) services. In 2022 she allocated £5m and this has now been raised to £8.3m for 2023. This will be shared between the 7 health boards in Wales to:

“widen access to Wales’ long-Covid services… to people with other long term conditions whose rehabilitation and recovery are similar – for example, people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), fibromyalgia and other post-viral associated conditions.”

The Adferiad (Recovery) Services have been developed to: “provide diagnosis, treatment, rehabilitation, and care for people experiencing long-term effects of COVID-19. They have been designed to respond to the particular needs of each individual whilst providing care as close to home as possible. People are supported by multi-professional teams including psychologists, physiotherapists, occupational therapists and nurses. If more specialist care is needed, people can be referred for further help and support.”

The Health Minister said:  “We know many people with other, long term conditions have reported feeling ‘misunderstood’ and ‘invisible’. I hope by widening access to Adferiad (Recovery) services we can better support people with conditions such as ME/CFS and fibromyalgia to get a diagnosis, manage their symptoms and access rehabilitation services, which are vital in helping improve physical and mental health and wellbeing.”

WAMES has already begun talking to some health boards about how services based on the NICE guideline and pathway can be effectively incorporated into their existing service model, so that appropriate provision is made for people with PEM/PESE. We will keep you updated on opportunities to give feedback for your area. In the meantime, please pass on to jan@wames.org.uk any information or experiences that will help us explain what people with ME/CFS need from health and wellbeing services in Wales.

  • Do you have a diagnosis?
  • Does your current GP use NICE 2021 to guide her/him?
  • Are there services in your community which understand ME/CFS?

#ImplementNICEmecfs

Deeside.com: Boost in funding for rehabilitation services in Wales to support Long COVID sufferers

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#newWAMESwebsite fund is growing!

Posted on 03/10/2023 by wames

#newWAMESwebsite total reaches £350

 

A big thank you to Sharon’s birthday fundraiser friends for raising more money to add to other income which gives us an extra £150 to develop a new website.

Read about the new website adventure we have embarked on.

 

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Research: Urine – another way to show inability to cope with exercise in ME/CFS

Posted on 03/09/2023 by wames

Urine shows abnormal reaction to exercise in ME/CFS

 

A small study of 8 women gave surprising results when their urine was examined after an exercise test and compared to healthy people.

“Our most unanticipated discovery is the lack of changes in the urine metabolome of ME/CFS patients during recovery while significant changes are induced in controls after CPET, potentially demonstrating the lack of adaptation to a severe stress in ME/CFS patients.”

“…significant differences were discovered between controls and ME/CFS patients in many lipid (steroids, acyl carnitines and acyl glycines) and amino acid subpathways (cysteine, methionine, SAM, and taurine; leucine, isoleucine, and valine; polyamine; tryptophan; and urea cycle, arginine and proline).”

To test the validity of these results researchers say that future studies should ensure BMI of participants is matched, diet is controlled and men are included.

 

Urine metabolomics exposes anomalous recovery after maximal exertion in female ME/CFS patients by Katherine A Glass, Arnaud Germain, Yuhsin V Huang and Maureen R Hanson in Int. J. Mol. Sci. 2023, 24(4), 3685;[doi.org/10.3390/ijms24043685]

Research abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating disease with unknown etiology or effective treatments.

Post-exertional malaise (PEM) is a key symptom that distinguishes ME/CFS patients. Investigating changes in the urine metabolome between ME/CFS patients and healthy subjects following exertion may help us understand PEM.

The aim of this pilot study was to comprehensively characterize the urine metabolomes of eight female healthy sedentary control subjects and ten female ME/CFS patients in response to a maximal cardiopulmonary exercise test (CPET).

Each subject provided urine samples at baseline and 24 h post-exercise. A total of 1403 metabolites were detected via LC-MS/MS by Metabolon® including amino acids, carbohydrates, lipids, nucleotides, cofactors and vitamins, xenobiotics, and unknown compounds.

Using a linear mixed effects model, pathway enrichment analysis, topology analysis, and correlations between urine and plasma metabolite levels, significant differences were discovered between controls and ME/CFS patients in many lipid (steroids, acyl carnitines and acyl glycines) and amino acid subpathways (cysteine, methionine, SAM, and taurine; leucine, isoleucine, and valine; polyamine; tryptophan; and urea cycle, arginine and proline).

Our most unanticipated discovery is the lack of changes in the urine metabolome of ME/CFS patients during recovery while significant changes are induced in controls after CPET, potentially demonstrating the lack of adaptation to a severe stress in ME/CFS patients.

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Orthostatic intolerance & chronotropic incompetence in ME

Posted on 03/06/2023 by wames

OI and CI in ME

 

Orthostatic intolerance and chronotropic incompetence in patients with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, by K Miwa in Circulation Reports 2023; 5: 55–61 [doi:10.1253/circrep.CR-22-0114]

Research abstract:

Orthostatic intolerance is a common symptom in ME/CFS, and the symptoms induced by sitting or standing can leave patients bedridden.

Chronotropic incompetence (CI) refers to the inability of the heart to increase its beat rate to a level that is proportionate to the activity being undertaken, or a reduced increase in heart rate during activity.

Previous studies have observed CI in ME/CFS patients. This study aimed to explore the role of POTS and CI in ME/CFS patients during orthostasis.

The recordings of 101 ME/CFS patients (International Consensus Criteria) who completed an active 10-minute standing test at least 3 times from July 2017 to December 2020 at the Miwa Naika Clinic (Japan) were included in this study.

This test involved recumbent rest for 5 minutes, and then standing with feet shoulder width apart for 10 minutes. Inability to reach 10 minutes was recorded as a failure, and postural orthostatic tachycardia syndrome (POTS), orthostatic hypotension or neurally mediated hypotension, were subsequently diagnosed depending on symptom and heart rate responses to the test.

CI was considered positive if a patient failed the test without POTS but, succeeded with POTS on other attempts.

The authors found that 13 participants completed standing tests with and without exhibiting POTS, whilst also completing and failing the test on different occasions. Of these patients, they were categorised as CI positive if test success occurred with POTS and test failure occurred without POTS being exhibited. Amongst these 13 patients, the authors found that 92% were CI positive, and 38% exclusively failed the test without experiencing POTS.

The authors conclude that these results demonstrate that the presence of POTS in ME/CFS patients is essential for the maintenance of orthostasis during 10-minute standing tests. The authors also conclude that some ME/CFS patients experience CI during standing tests, suggesting the presence of impaired sympathetic activation.

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Research: Distinguishing ME/CFS & FM

Posted on 02/23/2023 by wames

Distinguishing ME/CFS and FM through gene expression

 

Canadian researchers have measured the activity (expression) of genes in people with ME/CFS and Fibromyalgia. 3 of the 11 miRNA were over-expressed in ME/CFS and under-expressed in FM. These three miRNAs could be used as potential biomarkers to distinguish ME/CFS from FM.

microRNA is the name of a family of molecules that helps cells control the kinds and amounts of proteins they make. That is, cells use microRNA to help control gene expression. Molecules of microRNA are found in cells and in the bloodstream. OSUCCC

Research abstract

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and fibromyalgia (FM) are two chronic complex diseases with overlapping symptoms affecting multiple systems and organs over time. Due to the absence of validated biomarkers and similarity in symptoms, both disorders are misdiagnosed, and the comorbidity of the two is often unrecognized.

Our study aimed to investigate the expression profiles of 11 circulating miRNAs previously associated with ME/CFS pathogenesis in FM patients and individuals with a comorbid diagnosis of FM associated with ME/CFS (ME/CFS + FM), and matched sedentary healthy controls.

Whether these 11 circulating miRNAs expression can differentiate between the two disorders was also examined. Our results highlight differential circulating miRNAs expression signatures between ME/CFS, FM and ME/CFS + FM, which also correlate to symptom severity between ME/CFS and ME/CFS + FM groups.

We provided a prediction model, by using a machine-learning approach based on 11 circulating miRNAs levels, which can be used to discriminate between patients suffering from ME/CFS, FM and ME/CFS + FM.

These 11 miRNAs are proposed as potential biomarkers for discriminating ME/CFS from FM. The results of this study demonstrate that ME/CFS and FM are two distinct illnesses, and we highlight the comorbidity between the two conditions.

Proper diagnosis of patients suffering from ME/CFS, FM or ME/CFS + FM is crucial to elucidate the pathophysiology of both diseases, determine preventive measures, and establish more effective treatments.

Circulating microRNA expression signatures accurately discriminate myalgic encephalomyelitis from fibromyalgia and comorbid conditions, by Evguenia Nepotchatykh, Iurie Caraus, Wesam Elremaly, Corinne Leveau, Mohamed Elbakry, Christian Godbout, Bita Rostami-Afshari, Diana Petre, Nasrin Khatami, Anita Franco & Alain Moreau in Scientific Reports vol 13, Article number: 1896 (2023) [doi.org/10.1038/s41598-023-28955-9]

 

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The World ME Alliance & the WHO discuss disability health equity

Posted on 02/22/2023 by wames

The WMEA engages with the WHO over disability health equity

 

Following the World ME Alliance’s letter to the World Health Organization (WHO) highlighting critical gaps in their “Global report on health equity for persons with disabilities”, we have met with officials to discuss our recommendations.

This was a positive discussion on the importance of including those with energy limiting disabilities in global health responses. We discussed the range and severity of disability experienced by people with ME and other energy limiting disabilities, and the impact this can have on access to healthcare.

The WHO is now working to produce a Guide for Action, to help countries implement the recommendations set out in the “Global report on health equity for persons with disabilities”.

The World ME Alliance will continue to meet with WHO officials as this guide is developed, to ensure people with ME and other energy limiting disabilities are considered throughout.

We extend our thanks to Darryll Barrett (WHO Technical Lead for Disability), Dr Tarun Dua (Head of the Brian Health Unit), Dr Nicoline Schiess and Kaloyan Kamenov for a productive meeting, and look forward to ongoing work together.

This meeting was attended by the co-chairs of the World ME Alliance, Sonya Chowdhury and Oved Amitay, along with Sian Leary, our Head of Advocacy and Communications.

WAMES is an active member of the WMEA along with 20 other organisations around the globe

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Research: Different risk factors distinguish ME/CFS from severe fatigue

Posted on 02/16/2023 by wames

Severe Fatigue is not the same as ME/CFS

 

US researchers led by Prof Komaroff found that severe fatigue was much more common than ME/CFS in a large group of nurses and the triggers were different. There was an increased risk of ME/CFS in people with a history of mononucleosis (or glandular fever).

Research abstract:

Fatigue is a common reason that patients seek medical care. Only a fraction of these patients meet criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

To determine if ME/CFS is just a more extreme form of fatigue, or a qualitatively different condition, we assessed whether risk factors for ME/CFS and for Severe Fatigue were similar. An email questionnaire that inquired about symptoms of Severe Fatigue and ME/CFS was completed by 41,802 US female nurses from whom detailed medical and lifestyle information had been collected since 1989.

  • 102 met criteria for ME/CFS
  • 522 had Severe Fatigue
  • 41,178 individuals were without significant chronic fatigue.

We used Cox proportional hazards regression to estimate the Hazard Ratio (HR) of Severe Fatigue and of ME/CFS with each of several potential risk factors, according to the level of exposure to each risk factor.

The risk of Severe Fatigue was significantly increased among

  • participants who were older,
  • had a higher BMI in adulthood,
  • used hormone therapy,
  • had increased alcohol intake
  • and decreased caffeine intake.

In contrast, these risk factor associations were not seen in people with ME/CFS. A self-reported past history of acute infectious mononucleosis was associated with a non-significantly increased Hazard Ratio of later ME/CFS (HR 1.77, 0.87–3.61) and, to a lesser extent, of Severe Fatigue (HR 1.28, 0.98–1.66).

The different contribution of various risk factors to Severe Fatigue and ME/CFS suggests that ME/CFS has a qualitatively different underlying biology from the more common state of Severe Fatigue.

Different risk factors distinguish myalgic encephalomyelitis/ chronic fatigue syndrome from severe fatigue, by Natalia Palacios, Samantha Molsberry, Kathryn C Fitzgerald & Anthony L Komaroff in Scientific Reports vol 13, no.: 2469 (2023)

Image by freepik.com

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Are you good at maths and budgets?

Posted on 02/16/2023 by wames

WAMES is looking for a Treasurer

 

Liz is retiring, for a second time! She helpfully stepped up when Simon left last year, but now she really needs to call it a day.

The Treasurer is critical to our work of raising awareness of ME and influencing service improvement, and is a key member of the WAMES team. No charity can operate without one!

If you can easily balance your personal finances and enjoy planning and budgeting, then please consider doing the same for WAMES. Any additional knowledge and skills you might need can be picked up along the way.

The role of the treasurer is to:

  • ensure that proper financial records and procedures are maintained so we know how much money we have received and how much we are spending
  • give the management committee an understanding of WAMES’ financial affairs and advise on budgets, funding needs etc.

Arrange an informal chat with our Volunteering Support Officer: sharon@wames.org.uk                          Download details

Please note:

  • Training can be arranged & expenses will be paid
  • Most tasks can be carried out from home
  • ‘Role share’ is possible
  • You will get to know the team virtually
  • You don’t have to be knowledgeable about ME
  • The post will give useful experience to add to your CV
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Research: Impact of misdiagnosis in studies of ME/CFS

Posted on 02/16/2023 by wames

Researchers need to increase study sizes and apply strict diagnostic criteria

 

Polish researchers report that the difficulties with diagnosing ME/CFS and ensuring all research participants have the same condition, can lead to inaccurate research results.

Misdiagnosis can skew results significantly in studies with fewer than 500 participants. If research uses only participants with self-reported ME/CFS and does not check the diagnosis against accepted diagnostic criteria, then the study size needs to increase to improve accuracy.

It is also difficult to determine if results apply to all patients if only a group are studied women, young, old etc. And it is important to check that healthy controls in a study are in fact healthy.

Research studies should therefore have a large number of participants over 500 or 1,000, which could be achieved through multi-centre studies OR care is taken through applying diagnostic criteria and laboratory tests to ensure the group has the same diagnosis.

 

Research abstract:

Misdiagnosis of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) can occur when different case definitions are used by clinicians (relative misdiagnosis) or when failing the genuine diagnosis of another disease (misdiagnosis in a strict sense). This problem translates to a recurrent difficulty in reproducing research findings.

To tackle this problem, we simulated data from case-control studies under misdiagnosis in a strict sense. We then estimated the power to detect a genuine association between a potential causal factor and ME/CFS. A minimum power of 80% was obtained for studies with more than 500 individuals per study group. When the simulation study was extended to the situation where the potential causal factor could not be determined perfectly (e.g., seropositive/seronegative in serological association studies), the minimum power of 80% could only be achieved in studies with more than 1000 individuals per group.

In conclusion, current ME/CFS studies have suboptimal power under the assumption of misdiagnosis. This power can be improved by increasing the overall sample size using multi-centric studies, reporting the excluded illnesses and their exclusion criteria, or focusing on a homogeneous cohort of ME/CFS patients with a specific pathological mechanism where the chance of misdiagnosis is reduced.

Impact of Misdiagnosis in Case-Control Studies of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, by  João Malato Luís Graça, and Nuno Sepúlveda in Diagnostics 13 (3)
[doi:10.3390/diagnostics13030531]  1 Feb 2023
(This article belongs to the Section Pathology and Molecular Diagnostics)

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Biomarker research: Differentiating ME and FM

Posted on 02/15/2023 by wames

Differentiating ME and FM

 

Canadian researchers believe they have uncovered a way to tell the difference between people with ME, FM and both ME + FM. 11 miRNAs (microRNAs) are proposed as potential biomarkers.

microRNA is the name of a family of molecules that helps cells control the kinds and amounts of proteins they make. That is, cells use microRNA to help control gene expression.

Molecules of microRNA are found in cells and in the bloodstream.

Gene expression refers to whether a particular gene is making too much, too little or the normal amount of its protein at a particular time. OSU

Circulating microRNA expression signatures accurately discriminate myalgic encephalomyelitis from fibromyalgia and comorbid conditions, by Evguenia Nepotchatykh, Iurie Caraus, Wesam Elremaly, Corinne Leveau, Mohamed Elbakry, Christian Godbout, Bita Rostami-Afshari, Diana Petre, Nasrin Khatami, Anita Franco & Alain Moreau in Scientific Reports volume 13, Article number: 1896 (2023)

Research abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and fibromyalgia (FM) are two chronic complex diseases with overlapping symptoms affecting multiple systems and organs over time. Due to the absence of validated biomarkers and similarity in symptoms, both disorders are misdiagnosed, and the comorbidity of the two is often unrecognized.

Our study aimed to investigate the expression profiles of 11 circulating miRNAs previously associated with ME/CFS pathogenesis in FM patients and individuals with a comorbid diagnosis of FM associated with ME/CFS (ME/CFS + FM), and matched sedentary healthy controls. Whether these 11 circulating miRNAs expression can differentiate between the two disorders was also examined.

Our results highlight differential circulating miRNAs expression signatures between ME/CFS, FM and ME/CFS + FM, which also correlate to symptom severity between ME/CFS and ME/CFS + FM groups. We provided a prediction model, by using a machine-learning approach based on 11 circulating miRNAs levels, which can be used to discriminate between patients suffering from ME/CFS, FM and ME/CFS + FM. These 11 miRNAs are proposed as potential biomarkers for discriminating ME/CFS from FM.

The results of this study demonstrate that ME/CFS and FM are two distinct illnesses, and we highlight the comorbidity between the two conditions. Proper diagnosis of patients suffering from ME/CFS, FM or ME/CFS + FM is crucial to elucidate the pathophysiology of both diseases, determine preventive measures, and establish more effective treatments.

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