Dr Nina Muirhead says: Doctors believe in ME

Posted on 07/20/2021 by wames

Royal College of Physicians blog: Doctors believe in ME, 15 July 2021

 

In a follow up to her 2019 blog post, Dr Nina Muirhead discusses a recent surge in clinical interest in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

In 2019, I wrote to the RCP to share my experience of developing a neurological disease with multisystem symptoms following a virus. This is a disease characterised by symptom exacerbation following exertion, orthostatic hypotension, disturbed sleep, fatigue and cognitive impairment. We are now facing the next post-viral chronic disease challenge, post-acute sequelae SARS-CoV-2 infection (PASC) or ‘long COVID’. Averting the next potential ‘disaster’ is critically dependent on us, as healthcare providers, believing and providing supportive care to our post-viral patients. Doctors are now being urged to diagnose and systematically record cases in computerised medical record (CMR) systems.

This is especially important, as the REACT research numbers show that the illness burden is far higher than clinicians are currently recording. Long COVID patients are presenting to us, many with a long list of multisystem symptoms strikingly similar to the multisystem symptoms of ME/CFS, and we are on the steep learning curve to recognise this disease.

Continue reading for Dr Muirhead’s assessment of the four recent significant developments in ME/CFS.

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Top tips – Coping with hot weather

Posted on 07/20/2021 by wames

Top tips for ME/CFS: Coping with heat and hot weather

 

When memories of cold and wet weather are still fresh in the mind it is a relief to have some dry sunny weather.  However many people with ME and other chronic illnesses already struggle with temperature sensitivities and hot weather can make mann of us feel really ill. All of us can experience problems with prolonged high temperatures.

These simple precautions have been recommended by those who suffer and can help us to make the most of the warm weather and avoid unnecessary discomfort:

Keep out of the heat 

  • avoid going out in the hottest part of the day (11am – 3pm)
  • reorganise your day so you are more active when it is cooler
  • wear a hat when out, use high factor sunscreen
  • wear light, loose-fitting clothes, preferably cotton or linen
  • cover yourself up – this may actually keep you cooler, especially if the heat is low in humidity.

Indoors

  • use the coolest rooms in your home, as much as possible
  • lying on the floor might be cooler, as heat rises
  • close the curtains in rooms that get a lot of sun
  • keep windows closed while the room is cooler than it is outside. Open them when the temperature inside rises, and at night for ventilation.
  • water external and internal plants, and spray the ground outside windows with water (avoid creating slip hazards) to help cool the air
  • turn off lights and electronic equipment that emit heat even in standby mode.

Stay cool

  • take cool showers or baths, and splash yourself several times a day with cold water, particularly your face and the back of your neck
  • tie up long hair in a pony tail
  • run cold water over your wrists for 10 seconds on each hand. This will reduce your temperature for roughly an hour
  • soak your feet in a bucket of cold water. The body radiates heat from the hands, feet, face and ears, so cooling any of these will efficiently cool the body. Kids’ paddling pools are great for adults feet too
  • try storing lotions or cosmetic toners in the refrigerator to use on the body, including feet.

Eat & drink

  • drink regularly even if you do not feel thirsty – water or fruit juice are best
  • try to avoid alcohol, tea and coffee – they might make dehydration worse
  • don’t be tempted not to eat – try to eat more cold food, particularly salads and fruit, which contain water
  • carry a bottle/ container of water with you. Freeze it first and it will stay cold longer and can also be used to roll on your skin
  • eat spicy foods – they make you sweat without actually raising body temperature. Once your skin is damp, you’ll feel cooled by its evaporation.

Cooling aids

  • cooling gel pillow – a pillow filled with gel
  • migraine relief strips, such as Kool n soothe
  • cooling sprays and gels
  • keep cool scarf – made with a synthetic microporous material that is activated by water
  • fill a spray bottle with water and mist your face or the air around you – commercial ones vary in effectiveness
  • put a metal bowl of salted ice in front of a fan, and adjust the fan so that the air is blowing over the ice.
  • Or, use one or more 2 litre bottles and fill them mostly full of water (70%) & rock salt (10%). Leave 20% free for expansion. Freeze them, then place them in a large bowl (to catch the drips). Position a fan to blow on them. As the salty ice in the bottles melts, the air cools around them. The fan will blow that air at you. The water & salt in the bottles can be refrozen every night and used again repeatedly.

Some people are at higher risk and might need help

Older age: women over 75 years old appear to be more vulnerable to the effects of heat than older men, possibly due to having fewer sweat glands.

Chronic and severe illness: some conditions affect the way the body copes with heat. Medications that potentially affect renal function, sweating, thermoregulation or electrolyte balance can make people more vulnerable to the effects of heat.

Unable to adapt behaviour: due to mental confusion, mobility limitations, being bed bound, or if very young.

More info:

Public Health Wales: Extreme Hot Weather

VeryWellHealth: Warm weather survival with Fibromyalgia and ME/CFS    Adrienne Dellwo discusses temperature sensitivities and thermal allodynia (pain)

BBC News: How to cool your home in a warming world   Designing homes for rising temperatures

This revised article was first published in ME Voice 3 July 2013

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Research: Causal attributions & perceived stigma for ME/CFS

Posted on 07/18/2021 by wames

Causal attributions and perceived stigma for myalgic encephalomyelitis/ chronic fatigue syndrome, by Laura Froehlich, Daniel BR Hattesohl, Joseph Cotler,  Leonard A Jason , Carmen Scheibenbogen, Uta Behrends in Journal of Health Psychology, July 9 2021 [doi.org/10.1177/13591053211027631]

 

Research abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic disease with the hallmark symptom of post-exertional malaise. Evidence for physiological causes is converging, however, currently no diagnostic test or biomarker is available.

People with ME/CFS experience stigmatization, including the perception that the disease is psychosomatic. In a sample of 499 participants with self-diagnosed ME/CFS, we investigated perceived stigma as a pathway through which perceived others’ causal attributions relate to lower satisfaction with social roles and activities and functional status.

Higher perceived attributions by others to controllable and unstable causes predicted lower health-related and social outcomes via higher perceived stigma.

The role of perceived stigma for ME/CFS

… health-related quality of life outcomes were worse for people with ME/CFS who thought that others in their social environment viewed them as responsible for their condition and viewed the condition as likely to change. In turn, when people with ME/CFS perceived this pattern of others’ attributions, they also felt more stigmatized by these other people. Results were consistent except for non-significant direct and indirect effects for vitality. This might be explained by the fact that vitality items measure energy and exhaustion, which are closely tied to ME/CFS symptoms.

The perception that others view the illness as controllable and changeable indirectly predicted lower health-related quality of life for people with ME/CFS.

This result highlights that perceived stigma is a relevant process in ME/CFS: In line with basic stigma definitions… ME/CFS is perceived as:

  • discrediting (e.g. participants reported feeling embarrassed because of their disease) and
  • leads to social exclusion (e.g. participants reported being left out and avoided because of their disease).
  • In turn, perceived stigma was not only related to lower functional status, but participants also reported being less satisfied with their social roles (e.g. being bothered by their limitations to socialize and meet the needs of family and friends)
  • and activities (e.g. not being satisfied with the amount of household and leisure activities they can do).

Consequently, the social perceptions of ME/CFS are relevant to patients’ health and relationships. Findings point to pathways to improve the health-related and social situation of ME/CFS patients:

  • Further education of health practitioners and the public about physiological causes of ME/CFS could improve the situation for patients.
  • A widespread, evidence-based conception of ME/CFS as a physical condition could also increase the fit between illness perceptions by patients and their social environment, which in turn could reduce the negative consequences associated with ME/CFS (e.g. unsupportive social interactions, suicidal ideation).
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Survey – Do GPs in Wales use NICE guidance?

Posted on 07/18/2021 by wames

WAMES survey – NICE guidance in Wales

 

Survey – Do GPs in Wales use NICE guidance?

People with ME are looking forward to the publication of the revised NICE guidance, expected on 18th August 2021, which hopefully doesn’t recommend the discredited treatments of GET and CBT and highlights the key characteristic of Post Exertional Malaise (PEM)!

However the 2007 guidance did contain some helpful advice for GPs and yet many people told us they still struggled to get a diagnosis and management help.

The WAMES survey is designed to find out whether your GP/s showed a knowledge of the 2007 NICE Guidance during your consultations with them following publication in August 2007.

We hope your participation will help us to raise these questions for discussion with doctors’ leaders and NHS Wales:

  • If GPs didn’t use the old NICE guidance, will they be prepared to use the new guidance? What can be done to improve usage?
  • If GPs did use the old guidance then why did many people not find help and what can be done about that?
  • Were some recommendations followed and others not used? If so, what were they and why?

We have kept the questionnaire simple and as short as possible to make it easy to take part. Some people may not be able to answer all the questions because their diagnosis took place before 2007, or they never found a GP to give them a diagnosis. Please give us as much information as you can for the years 2007-2021 and let others know about the survey.

You may also have particular experiences you feel we and the NHS should know about. Please add them where comment is invited or contact us separately. Your responses will be included in a report and used in discussions on how the 2021 NICE guidance can help improve healthcare for people with ME in Wales.

Link to the survey  https://tinyurl.com/zwuf5d7k

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Research: Potential therapeutic benefit of Low Dose Naltrexone in ME/CFS

Posted on 07/16/2021 by wames

Potential Therapeutic Benefit of Low Dose Naltrexone in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: role of Transient Receptor Potential Melastatin 3 Ion channels in pathophysiology and treatment, by
Helene Cabanas,  Katsuhiko Muraki,  Natalie Eaton-Fitch,  Donald Ross Staines and Sonya Marshall-Gradisnik in Front. Immunol., 13 July 2021 [doi.org/10.3389/fimmu.2021.687806]

 

Research abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating multi-systemic chronic condition of unknown aetiology classified as an immune dysfunction syndrome and neurological disorder.

The discovery of the widely expressed Transient Receptor Potential Melastatin 3 (TRPM3) as a nociceptor channel substantially targeted by certain opioid receptors, and its implication in calcium (Ca2+)-dependent Natural Killer (NK) cell immune functions has raised the possibility that TRPM3 may be pharmacologically targeted to treat characteristic symptoms of ME/CFS.

Naltrexone hydrochloride (NTX) acts as an antagonist to the mu (μ)-opioid receptor thus negating its inhibitory function on TRPM3. Based on the benefits reported by patients on their symptoms, low dose NTX (LDN, 3.0–5.0 mg/day) treatment seems to offer some potential benefit suggesting that its effect may be targeted towards the pathomechanism of ME/CFS.

As there is no literature confirming the efficacy of LDN for ME/CFS patients in vitro, this study investigates the potential therapeutic effect of LDN in ME/CFS patients. TRPM3 ion channel activity was measured after modulation with Pregnenolone sulfate (PregS) and ononetin in NK cells on 9 ME/CFS patients taking LDN and 9 age- and sex-matched healthy controls using whole-cell patch-clamp technique.

We report that ME/CFS patients taking LDN have restored TRPM3-like ionic currents in NK cells. Small ionic currents with a typical TRPM3-like outward rectification were measured after application of PregS, a TRPM3-agonist, in NK cells from patients taking LDN. Additionally, PregS-evoked ionic currents through TRPM3 were significantly modulated by ononetin, a TRPM3-antagonist, in NK cells from ME/CFS patients taking LDN.

These data support the hypothesis that LDN may have potential as a treatment for ME/CFS by characterising the underlying regulatory mechanisms of LDN treatment involving TRPM3 and opioid receptors in NK cells.

Finally, this study may serve for the repurpose of marketed drugs, as well as support the approval of prospective randomized clinical studies on the role and dose of NTX in treating ME/CFS patients.

 

Sydney Morning Herald: Common drug could be a simple solution to a complex disease

Griffith University researchers have identified in lab experiments that low doses of naltrexone reverse abnormal cell functions associated with chronic fatigue syndrome, which clinicians refer to as myalgic encephalomyelitis (ME).

Griffith University professor Sonya Marshall-Gradisnik said their finding that naltrexone could treat the disease came on top of previous research – also a world first – in which the team proved that a defect in a specific ion channel in certain cells in the body, called TRPM3, was the cause of ME.

“It’s the first time these channels have ever been found to be faulty [in ME patients], and we’ve reproduced that four separate times,” Professor Marshall-Gradisnik said.

Gritffith news: World-first laboratory study finds low-dose Naltrexone may improve ME/CFS symptoms

“This study serves to support the repurposing of marketed drugs and support prospective randomised clinical trials using Naltrexone in treating ME/CFS patients,’’ Prof Staines said.

The world-first scientific research study was achieved using the gold standard of Patch Clamp electrophysiology (PCE) which examines cellular ion currents in pathophysiology and potential pharmacotherapeutics in selected cells from ME/CFS patients and healthy control volunteers.

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Research: Shadow burden of undiagnosed ME/CFS on society (Latvia)

Posted on 07/15/2021 by wames

Shadow Burden of undiagnosed Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) on society: retrospective and prospective—in light of COVID-19, by  Diana Araja, Uldis Berkis, Asja Lunga and Modra Murovska in J. Clin. Med. 2021, 10(14), 3017; [doi.org/10.3390/jcm10143017] 6 July 2021 (This article belongs to the Special Issue Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Diagnosis and Treatment)

 

Research abstract:

Background:

Myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) is a poorly understood, complex, multisystem disorder, with severe fatigue not alleviated by rest, and other symptoms, which lead to substantial reductions in functional activity and quality of life.

Due to the unclear aetiology, treatment of patients is complicated, but one of the initial problems is the insufficient diagnostic process. The increase in the number of undiagnosed ME/CFS patients became specifically relevant in the light of the COVID-19 pandemic.

The aim of this research was to investigate the issues of undiagnosed potential ME/CFS patients, with a hypothetical forecast of the expansion of post-viral CFS as a consequence of COVID-19 and its burden on society.

Methods:

The theoretical research was founded on the estimation of classic factors presumably affecting the diagnostic scope of ME/CFS and their ascription to Latvian circumstances, as well as a literature review to assess the potential interaction between ME/CFS and COVID-19 as a new contributing agent.

The empirical study design consisted of two parts:

  • The first part was dedicated to a comparison of the self-reported data of ME/CFS patients with those of persons experiencing symptoms similar to ME/CFS, but without a diagnosis. This part envisaged the creation of an assumption of the ME/CFS shadow burden “status quo”, not addressing the impact of COVID-19.
  • The second part aimed to investigate data from former COVID-19 patients’ surveys on the presence of ME/CFS symptoms, 6 months after being affected by COVID-19. Descriptive and analytical statistical methods were used to analyse the obtained data.

Results:

The received data assumed that the previously obtained data on the ME/CFS prevalence of 0.8% in the Latvian population are appropriate, and the literature review reports a prevalence of 0.2–1.0% in developed countries. Regarding the reciprocity of ME/CFS and COVID-19, the literature review showed a lack of research in this field.

The empirical results show quite similar self-esteem among ME/CFS patients and undiagnosed patients with longstanding disease experience, while former COVID-19 patients show a significantly lower severity of these problems.

Notably, “psychological distress (anxiety)” and “episodic fatigue” are significantly predominant symptoms reported by former COVID-19 patients in comparison with ME/CFS patients and undiagnosed patients prior to the COVID-19 pandemic. The results of our analysis predict that the total amount of direct medical costs for undiagnosed patients (out-of-pocket payments) is more than EUR 15 million p.a. (in Latvia), and this may increase by at least 15% due to the consequences of COVID-19.

Conclusions:

ME/CFS creates a significant shadow burden on society, even considering only the direct medical costs of undiagnosed patients—the number of whom in Latvia is probably at least five times higher than the number of discerned patients. Simultaneously, COVID-19 can induce long-lasting complications and chronic conditions, such as post-viral CFS, and increase this burden.

The Latvian research data assume that ME/CFS patients are not a high-risk group for COVID-19; however, COVID-19 causes ME/CFS-relevant symptoms in patients. This increases the need for monitoring of patients for even longer after recovering from COVID-19′s symptoms, in order to prevent complications and the progression of chronic diseases.

In the context of further epidemiological uncertainty, and the possibility of severe post-viral consequences, preventive measures are becoming significantly more important; an integrated diagnostic approach and appropriate treatment could reduce this burden in the future.

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Health Minister delegates reply re ME/CFS

Posted on 07/14/2021 by wames

Welsh Government replies re ME/CFS and long COVID

 

WAMES wrote to the Health Minister, Eluned Morgan MS, on 7th June about ME and long COVID. She is the first Health Minister to fail to reply herself. Instead she delegated her response to a member of the Government and Corporate Business Team, but the response clarifies some issues:

The £5 million given to Health Boards is a one-off payment to help Health Boards recover from the pandemic

“The funding can also be utilised to support other population groups affected by the pandemic e.g. those with additional rehabilitation needs due to waiting for planned care. A steering group is overseeing the implementation of this funding and one of the key principles for this group is to assure there will not be a two tier system for those with long COVID and those with similar existing conditions.

The funding will likely be used by health boards to fund Allied Health Professionals, GP’s and primary and community staff, rehabilitation support workers and develop Primary and Community infrastructure. As we are learning more about long COVID all the time it will also fund high quality, evidence based training and digital resources for all health professionals to assist in diagnosing, investigating and treating long COVID and supporting people in their treatment and rehabilitation.”

ME/CFS services are the responsibility of Health Boards

“With the increased focus upon long COVID, we expect any additional training and resource will also help support those with other fatigue related conditions as an increased focus is placed upon them.”

NICE guidance for ME/CFS

“The Welsh Government has always planned to respond and react to any changes within this guidance. As we await the publication and enter our NHS recovery phase, the Welsh Government are looking to ensure a renewed focus on long term conditions is adopted, ranging from supported self-management to diagnosis and treatment. This renewed consideration will take into account a wide range of voices and research to ensure services provide the level of care required.”

Supporting future service development

“You may be interested to know our National Clinical Framework has been published and sets out how clinical services must develop and become a learning health and care system. https://gov.wales/written-statement-national-clinical-framework-and-quality-statements. An Implementation Plan for this framework is being developed over the summer, which will outline how this revised approach will be monitored and adopted. Additionally an NHS Executive is currently being devised to create resource that will support Government to provide the strong system leadership and strategic direction which a planned system requires.”

WAMES response

The Welsh Government has restated that their role is to support NHS Wales develop services. In an ideal world the NHS would have identified the need to provide services for people with ME and sought the Welsh Government’s help. All past attempts by the Welsh Government to persuade Health Boards to cater for ME as a neurological or biomedical condition have been unsuccessful, whether focussing on ME alone or attempting to ‘ride the coattails’ of pain services, long term conditions, and now long COVID.

WAMES will continue to work with the Welsh Government once the revised NICE guidance is published and we are renewing efforts to engage with doctors’ leaders and Health Boards.  We are continuing to search for the ‘winning argument’, the words and images that will finally breach their defences and persuade them we are their responsibility and should be ignored no longer.

Watch this space for ways you can help!

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Research: Tolerability & efficacy of s.c. IgG self-treatment in ME/CFS patients with IgG/IgG subclass deficiency

Posted on 07/13/2021 by wames

Tolerability and efficacy of s.c. IgG self-treatment in ME/CFS patients with IgG/IgG subclass deficiency: a proof-of-concept study, by Carmen Scheibenbogen, Franziska Sotzny, Jelka Hartwig, Sandra Bauer, Helma Freitag, Kirsten Wittke, Wolfram Doehner, Nadja Scherbakov, Madlen Loebel, Patricia Grabowski in J Clin Med. 2021 May 29;10(11):2420 [doi: 10.3390/jcm10112420]

 

Research abstract:

Background:

Chronic fatigue syndrome (ME/CFS) is a complex disease frequently triggered by infections. IgG substitution may have therapeutic effect both by ameliorating susceptibility to infections and due to immunomodulatory effects.

Methods:

We conducted a proof of concept open trial with s.c. IgG in 17 ME/CFS patients suffering from recurrent infections and mild IgG or IgG subclass deficiency to assess tolerability and efficacy. Patients received s.c. IgG therapy of 0.8 g/kg/month for 12 months with an initial 2 months dose escalation phase of 0.2 g and 0.4 g/kg/month.

Results:

Primary outcome was improvement of fatigue assessed by Chalder Fatigue Scale (CFQ; decrease ≥ 6 points) and of physical functioning assessed by SF-36 (increase ≥ 25 points) at month 12. Of 12 patients receiving treatment per protocol 5 had a clinical response at month 12. Two additional patients had an improvement according to this definition at months 6 and 9. In four patients treatment was ceased due to adverse events and in one patient due to disease worsening. We identified LDH and soluble IL-2 receptor as potential biomarker for response.

Conclusion:

Our data indicate that self-administered s.c. IgG treatment is feasible and led to clinical improvement in a subset of ME/CFS patients.

Limitations

Taken together, our study has several limitations, including a small patient number and a lack of a control arm. The strength of this study is to show the feasibility of a dose escalation s.c. IgG home treatment in ME/CFS patients. Furthermore, it provides first evidence for efficacy of an intermediate dose s.c. IgG treatment and potential biomarkers for response. This warrants an RCT study.

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Research: Genetic study of T cell receptor in ME/CFS

Posted on 07/09/2021 by wames

Genetic study of T cell receptor (TCR) in myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), by Marthe Ueland in University of Oslo, June 21, 2021

 

Research abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling disease affecting patients physically and cognitively by e.g fatigue, post-exertional malaise (PEM), pain, memory-loss and concentration difficulties. It is currently no treatment for ME/CFS, and manifestation differs between individuals, which makes it difficult to identify its aetiology. Multiple genetic and environmental factors are believed to contribute to its development, thus categorizing it as a complex disease, which also is the case for autoimmune diseases (AID).

A hypothesis that ME/CFS is an immune-mediated disease has been suggested and are supported by various findings. Immunological alterations such as altered T cell response have been reported in patients. Additionally, has an increased occurrence of autoimmune diseases (AIDs) been observed in families with ME/CFS. The hypothesis is further supported by an identified association between human leukocyte antigen (HLA) class I and II and ME/CFS, a hallmark for most AIDs.

As HLA molecules present antigens to the T cell receptor (TCR), this receptor is of interest for further investigation. Furthermore, studies of TCRs have shown that both HLA molecules and single nucleotide polymorphisms (SNPs) located within the germline DNA can influence the gene usage in TCRs. Associations have been found between the TCR α chain

(TRA) region and immune-mediated diseases. For example has a genome-wide association study (GWAS) conducted in narcolepsy, which also has an HLA class II-association, identified associations (p<10-21) to three single nucleotide polymorphisms (SNPs) in TRA (rs1154155, rs12587781 and rs1263646), which was the first documented involvement of this region in disease. An additional small GWAS in ME/CFS showed association between three SNPs in TRA (rs17255510, rs11157573 and rs10144138) and the disease (adjusted p<0.05).

The aim of this thesis was to find methods that can be used to study genetic variants in the T cell receptor α region (TRA) to identify possible associations with ME/CFS. This was done by genotyping and sequencing. Association analysis of 30 SNPs genotyped using Illumina Immunochip (Ichip) and Taqman assays in a Norwegian cohort of 408 ME/CFS cases and 721 controls failed to show any association between TRA and ME/CFS. Since these included two of the SNPs previously associated with ME/CFS (rs17255510 and rs11157573), we did not replicate the findings.

Analysis of Ichip´s coverage of the TRA gene showed that it was inadequate with only 27 SNPs covered in this region, although 737 has been identified in the 1000 genomes CEU dataset. The TCR genetic regions are generally understudied due to homology and repetitive regions, which is problematic to cover with existing methods. Hence, two sequencing protocols were established in the TRA region. PacBio´s No-amp targeted sequencing utilizing the CRISPR-Cas9 system with SMRT sequencing was tested for fragments ranging from 4.8 to 20.1 kb, however, the highest read depth was obtained for fragments <6 kb. We conclude that this protocol is not suited for screening but can be a good complement to other sequencing methods. Long-range PCR with Illumina Miseq sequencing resulted in read depth able to detect genetic variant for some fragments, however, the approach required a lot of optimization. The obtained sequences were not studied in detail during this work and would therefore be of interest to investigate further to identify genetic variants. Future studies in this region would include targeted enrichment using capture probes.

In conclusion, we did not detect any association between ME/CFS and TRA, however, we revealed that the genetic variants tested thus far does not capture the genetic variation in this region. Furthermore, the sequencing protocols tested pave the way for further optimization and characterization of TRA by sequencing.

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Chest strap system monitors severity of CFS

Posted on 07/09/2021 by wames

Chest strap system monitors severity of Chronic Fatigue Syndrome, by Conn Hastings in Medgadget, July 8 2021

 

Researchers at the Universitat Autònoma de Barcelona in Catalonia, Spain, have developed a system to monitor the severity of myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome. The system includes a commercial chest strap sensor that measures heart rate variability and a paired app that collects, collates, and presents these data, allowing patients to monitor their condition and share information with their clinician.

ME is a debilitating condition, characterized by severe fatigue that interferes with daily activities. The prevalence of ME is expected to drastically increase in the coming years as it appears to be a common component of persistent COVID-19, also known as ‘long COVID’. ME may be triggered by persistent COVID-19, along with infection with other viruses, and some expect it to be a significant part of the wave of long COVID cases currently developing around the world.

The condition does not currently have diagnostic biomarkers or effective treatments, and historically has been largely overlooked and dismissed by medical science, so techniques to measure disease severity and track patient progress are surely welcome.

Read the full article

Research paper: Analysis of gender differences in HRV of patients with M/CFS using mobile-health technology

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