Life-threatening malnutrition in very severe ME/CFS

Posted on 04/19/2021 by wames

Life-threatening malnutrition in very severe ME/CFS, by Helen Baxter, Nigel Speight and William Weir in Healthcare 2021, 9(4),  459; [doi.org/10.3390/healthcare9040459] 14 April 2021 (This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected)

 

Case Reports abstract:

Very severe Myalgic Encephalomyelitis (ME), (also known as Chronic Fatigue Syndrome) can lead to problems with nutrition and hydration. The reasons can be an inability to swallow, severe gastrointestinal problems tolerating food or the patient being too debilitated to eat and drink.

Some patients with very severe ME will require tube feeding, either enterally or parenterally. There can often be a significant delay in implementing this, due to professional opinion, allowing the patient to become severely malnourished. Healthcare professionals may fail to recognize that the problems are a direct consequence of very severe ME, preferring to postulate psychological theories rather than addressing the primary clinical need.

We present five case reports in which delay in instigating tube feeding led to severe malnutrition of a life-threatening degree. This case study aims to alert healthcare professionals to these realities.

 

Excerpt from Discussion:

This series of cases demonstrate a common set of problems. The clinicians involved seemed unaware that severe ME can lead to serious problems maintaining adequate nutrition and hydration. Perhaps this is understandable, as many clinicians will only meet one or two cases of severe ME in their careers, and the subject is poorly taught at both undergraduate and postgraduate levels…

Case 2 highlights an important issue. If a patient is failing to respond to enteral feeding, the possibility of MCAD needs to be considered. This is a recognized complication of severe ME and effective treatment exists in the form of oral cromoglycate and antihistamines. It has probably contributed to several deaths of severe ME sufferers.

In every case, the most positive improvement in their management came about as the result of the allocation of a named HENS dietician whose advanced training in enteral nutrition enabled them to make changes to the patient’s diet. In one case it enabled the patient to get to a healthy weight using enteral nutrition whilst making changes to the oral nutrition such that enteral feeding is now no longer required. In another case, dietary changes ameliorated suffering. All patients felt supported by their HENS dietician.

For patients with very severe ME connecting with a knowledgeable healthcare professional who does domiciliary visits is very important. Such a policy would reduce the need for hospital admissions which would be to the benefit of all. All patients with very severe ME should be allocated a HENS dietician as soon as nutritional difficulties become apparent.

An early warning system needs to be put in place for patients with severe ME so that when they or their representatives become aware of the development of problems with oral intake prompt action is taken and tube feeding started thereby avoiding undernutrition in patients with very severe ME. Early intervention in the form of tube feeding has been shown to be beneficial in patients with severe ME [1].

Patients with very severe ME are bedridden and require around the clock care. They are best cared for at home where the environment can be adapted to best meet their needs. These patients will have extreme sensitivity to noise and light, such that they need to be cared for in a darkened room. People with very severe ME invariably report travel to hospital and the hospital environment significantly exacerbates their condition. If an admission to hospital is necessary, and this should only be done for emergency treatment, they will require admission directly into a side room and to be cared for by a small number of staff who understand ME as an organic illness.

For the patient with very severe ME, it appears to be common practice for Clinical Commissioning Groups (CCGs) to adopt a ‘re-site in hospital’ policy despite a large study showing that with protocols in place trained nurses in the community can identify the position of NGT’s correctly without the need for hospital attendance [12].
Nonetheless it is stated: ‘Local protocols should address the clinical criteria that permit enteral feeding [13].’

None of the participants were offered NGT re-sites at home, instead they went to significant lengths to avoid trips to hospital if at all possible; re-siting their own NGTs or opting to have NJTs or PEGs. A constructive change would an implementation of national guidelines allowing NGT re-sites to be carried out in the community by appropriately trained professionals. A community-based service could bring potential savings to the NHS and certainly benefit patients with very severe ME. The treatment of serious undernutrition issues in ME needs to be included in national and local guidelines for use by health care professionals.

Summary article from MECENTRAAL

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Introducing WAMES volunteers: Jan Russell

Posted on 04/16/2021 by wames

Introducing WAMES volunteers: Jan Russell

 

The first in a series introducing WAMES volunteers: the Chair  

Back in 2000 I was one of a small band of support group reps who got together to discuss what we could do to improve services for people with ME. I had been active in the Mid & West Wales Support Group for many years.  Devolution had just removed control for most services from London to Cardiff, and ME wasn’t on the new government’s horizon. WAMES was established in 2001 and I became the volunteer Treasurer.

Jan Russell with long lockdown hair

Jan with lockdown hair, 2021

It very quickly became clear that book keeping was not my forte so the following year I gladly exchanged roles with the Secretary!  Finally 9 years ago I became chair. That was not an easy decision to make as I wasn’t sure I was well enough. However, I was motivated, having developed ME following 2 bouts of post viral debility in the mid 80s and I was very frustrated, even angry, that recognition and services were not improving.

Working as part of a team who understands ME is the most stress-free way to make a useful contribution, though I have to admit to having to operate outside my comfort zone on occasion. My husband (and carer) has made that possible and has provided important support!  As well being a trustee and chair (leading meetings and planning WAMES activities) I have also led the health services campaign, and got involved with the website, magazine, facebook… (the list goes on!).

There is so much work I could be doing with WAMES but I have found it important to develop other interests as well, to keep a balance in my life. Many of these activities had to replace the pastimes I could no longer do once I became ill and I now enjoy genealogy, pottering in the garden (on better days), wildlife watching (often from my house window) and reading crime novels.

Jan speaking at the Senedd, 2018

Looking back I can see how much I have learned and the new skills I have developed while volunteering. Before I became ill I was a librarian working first in schools in Scotland and then in Aberystwyth university. Making information available to people is second nature to me and I have enjoyed helping WAMES provide information and support to many families to help them access what few services are available.

l wish I could say I could also see how successful WAMES has been in influencing service improvement. That has been a painfully slow process, like water dripping on a stone. But I am relieved to say I can see an improvement in recognition and understanding of ME in Wales. I am sure the breakthrough is just round the corner and I am proud to have played a part in edging us towards that!

Read other volunteers’ stories:

Michelle

Sharon

Mia

Tony

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Insights into metabolite diagnostic biomarkers for ME/CFS

Posted on 04/13/2021 by wames

Insights into metabolite diagnostic biomarkers for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, by Emi Yamano, Yasuyoshi Watanabe and Yosky Kataoka in Int. J. Mol. Sci. 2021, 22(7), 3423; [doi.org/10.3390/ijms22073423] 26 March 2021
(This article belongs to the Special Issue Environmental Sensitivity Illnesses: Mechanisms and Molecular Signatures 2.0)

 

Review abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a persistent and unexplained pathological state characterized by exertional and severely debilitating fatigue, with/without infectious or neuropsychiatric symptoms, and with a minimum duration of 6 consecutive months.

Its pathogenesis is not fully understood. There are no firmly established diagnostic biomarkers or treatment, due to incomplete understanding of the etiology of ME/CFS and diagnostic uncertainty.

Establishing a biomarker for the objective diagnosis is urgently needed to treat a lot of patients. Recently, research on ME/CFS using metabolome analysis methods has been increasing. Here, we overview recent findings concerning the metabolic features in patients with ME/CFS and the animal models which contribute to the development of diagnostic biomarkers for ME/CFS and its treatment. In addition, we discuss future perspectives of studies on ME/CFS.

Table 2. Summary of major biochemical pathways with significant metabolites across patients with ME/CFS:

Table 2. Summary of major biochemical pathways with significant metabolites across patients with ME/CFS.

 

 

 

4. Conclusions
Common metabolic fluctuations were observed in fatigued animal models and human patients with ME/CFS and these findings could contribute to the elucidation of the pathophysiology of ME/CFS. Biomarker research, to distinguish between patients with ME/CFS and healthy individuals, is still evolving.

In previous studies, reactive oxygen metabolite-derived compounds (d-ROMs) [54] in the blood, exosomes and inclusion proteins/micro RNAs [5], monocyte number, and lipoprotein profiles have been reported to be informative markers for discriminating patients with ME/CFS from healthy controls [55]. Furthermore, inflammation and immune system activation have been suggested by many previous studies to be the root causes of ME/CFS, and the results from many such studies have shown elevation of cytokines and lymphokines in plasma [56].

Using positron emission tomography (PET), neuroinflammation was detected in wide-spread brain regions of patients with ME/CFS, which was associated with the severity of the specific neuro-psychologic symptoms [57].

We believe that in future, it will be possible to establish highly precise objective diagnostic biomarkers for ME/CFS, exhibiting diverse pathologies through the implementation of research that would integrate metabolomic markers reflecting the specific metabolism underlying the pathophysiology of fatigue with highly precise in vivo biomarkers.

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WAMES is growing to meet the challenges of 2021

Posted on 04/12/2021 by wames

WAMES is growing to meet the challenges of 2021 – AGM News

 

Our AGM was held virtually on 27th March 2021.   It was a time to take stock of the disruptions of 2020 and discuss how to tackle the challenges of the future for people with ME.

The big ongoing discussion is how we can continue to highlight the desperate need for services as we wait for the publication of the revised NICE guidelines in the midst of a growing group of patients with the overlapping symptoms of long COVID. We will be sharing those activities and requesting your help over the next few months.

 

Our Vision:

Our Vision is for a Wales where adults and children with ME, CFS and PVFS and their carers are taken seriously and treated with respect, where diagnosis, treatment and services are accessible without a battle.

 

Our Volunteers:

We are enjoying getting to know the growing number of volunteers who have been joining us over the last year. They will be critical in helping us to get ME taken more seriously in Wales. We need people with a wide range of skills and interests and are inviting more people to join us.  We work in Teams so we can share tasks and responsibilities, and inspire and encourage each other.

Volunteers are the lifeblood of  WAMES

 

Our Teams:

Trustees & Governance
we set the goals for WAMES and ensure we stay ‘on mission’ in line with charity law.

Administration
we work in the background and provide a framework for everything else to happen – maintaining records, memberships, mailing lists and general admin tasks.

Campaigns & Awareness
we find and respond to opportunities to improve services and spread the word about ME.

Support
we respond to queries and provide support to individuals and groups through the helpline, email, social media etc.

Communications
we look for ways to communicate bilingually about ME and WAMES throughout Wales using the website, social media and ‘pre-Covid’ paper formats.

Volunteering
we recruit, induct and support volunteers to ensure everyone has the best possible experience with WAMES.

Finances & fundraising
we find ways to raise enough money to fund our activities and ensure we plan ahead for the future.

Youth
this team has been less active for a few years but aims to pick up the pace and improve the support and information we give to children and young people.

Elected officers 2021:

  • Chair: Jan Russell
  • Acting secretary: Tony Thompson
  • Treasurer: Simon Horsman

See future blogs to meet our volunteers!

 

Finances:

For the 2nd year running in 2020 we spent more than we received! We received £510 and spent £969. Online shopping fundraising and donations from individuals make up the bulk of our income as people shop more from home, but we also saw a big drop in donations – 53%! We are working to develop a more sustainable way to fund our work as everybody experiences economic challenges.

The bulk of our expenditure in the past has been on travel and accommodation costs to enable us to campaign and raise awareness.  The pandemic has changed this. Instead, during 2021 we will need to invest in office hardware and software to ensure our growing team of volunteers can work effectively together virtually. We have enough money in the bank to make a start on this but will need to fundraise to complete the project.

Did you donate or fundraise by shopping online?
Thanks for the lifeline!

 

WAMES’ aim is to:

give a national voice to people with ME, CFS and PVFS in Wales, their carers and families, in order to improve services, access to services, awareness and support.

Help us…. Make a difference for ME in Wales!

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New study shows reduced ability to regulation of the cardiovascular system in patients with ME/CFS

Posted on 04/08/2021 by wames

Kavli Trust blog post on research into ME / CFS at Haukeland University: New study shows reduced ability to regulate the cardiovascular system in patients with ME / CFS, March 26, 2021     [Google translation of a Norwegian article]

 

The research group for ME / CFS at Haukeland University Hospital has published a new article on possible circulatory disorders in patients with ME/CFS. Examinations of patients’ blood vessels using ultrasound have been an important part of the study, which was carried out with support from the Kavli Foundation.

By the research group for ME / CFS at Haukeland University Hospital:

We performed examinations of the patients’ blood vessels as part of the Cyclophosphamide project on ME / CFS, which was carried out with support from the Kavli Foundation. The group has previously published results showing that 22 of the 40 participants in the study reported improvement in their ME disease after being treated with the cytotoxic drug cyclophosphamide in a controlled clinical trial.

Read more: Promising results from experiments with cancer medicine

This study is based on a hypothesis that impaired ability to regulate blood circulation is a possible disease mechanism in ME / CFS. The ability of the blood vessels to fine-tune the blood flow so that the tissue receives enough oxygen and nutrition, especially during exertion, may be affected. This may contribute to the patients’ symptom picture.

A recognized method for studying the regulation of blood circulation is to examine the function of the patients’ endothelium. This cell layer, which covers the inside of the blood vessels, contributes to the expansion and contraction of the veins as needed. During the examination, the patients’ blood circulation in the right arm is limited by means of a blood pressure cuff for five minutes. When this blockage is removed, the blood vessels should normally compensate by dilating and releasing more blood to the arm…

…At re-examination after 12 months, 55% of the patients had experienced a symptom improvement after treatment with cyclophosphamide. Nevertheless, the results for endothelial function at group level were relatively unchanged, and we found no systematic relationship between change in symptoms and change in endothelial function. Nor could we demonstrate a direct relationship between patients’ endothelial function and their level of activity, the severity of the disease, or how long they had been ill.

This study therefore concludes that there is an association between ME / CFS and reduced endothelial function, but that we can not see any direct correlation between endothelial function and the individual patient’s symptom pressure. Regulation of blood circulation is a complex process, and we still have a lot to learn about circulatory disorders in ME / CFS and how they affect patients’ symptoms.

You can read the study in its entirety at Frontiers in Medicine:

Reduced endothelial function in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome–results from open-label Cyclophosphamide intervention study, by Kari Sørland,  Miriam Kristine Sandvik,  Ingrid Gurvin Rekeland,  Lis Ribu,  Milada Cvancarova Småstuen,  Olav Mella and  Øystein Fluge in Front. Med., 22 March 2021 [doi.org/10.3389/fmed.2021.642710]

Read more: Collection page about ME research supported by the Kavli Foundation

Read the full translated article

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Dissecting the nature of Post-Exertional Malaise

Posted on 04/08/2021 by wames

Dissecting the nature of post-exertional malaise, by Megan Hartle, Lucinda Bateman  & Suzanne D Vernon in Fatigue: Biomedicine, Health & Behavior March 2021 [DOI: 10.1080/21641846.2021.1905415]

 

Research Abstract: 

Background:
Post-exertional malaise (PEM) is a defining characteristic of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) but there is insufficient research dissecting the nature of PEM from the patients’ perspective.

Methods:
A PEM questionnaire administered to 150 ME/CFS patients. It included open-ended questions about triggers, experiences, recovery, and prevention. Responses were re-coded into concise, representative topics. Chi-Square tests of independence were then used to test for differences and relationships between duration of ME/CFS illness (<4 years and >10 years), PEM onset and duration, and gender with PEM trigger, experience, recovery, and prevention.

Results:
Physical exertion was the most common trigger of PEM. The onset of PEM occurred within minutes after physical exertion compared to within hours after cognitive exertion (<0.05). ME/CFS patients sick for <4 years reported stress as a trigger significantly more often than those sick for >10 years (<0.001). ME/CFS patients sick for <4 years experienced more orthostatic symptoms during PEM than those sick for >10 years. ME/CFS patients sick for >10 years reported using medications to recover from PEM significantly more that those sick for <4 years (<0.01). Pacing and avoiding specific triggers were common approaches to prevent PEM.

Conclusions:
There are differences in PEM triggers, experiences and recovery based on duration of illness. Asking about PEM is important for diagnosis and to understand how to manage PEM. Given that PEM occurs more quickly after physical versus cognitive exertion, these results should instigate research on the relationship of upright posture, hypoperfusion and PEM.

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Video: Living with ME/CFS: a paper stop-motion animation

Posted on 04/07/2021 by wames

An Existence Project: paper stop-motion animation about ME/CFS, 2 April 2021

 

An Existence Project is a short stop-motion animation about what it is like to live with mild or moderate Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).

It was created by Inga Topolnicki using handmade watercolour paper props. She decided to make this film so there would be something accessible people could show their friends and family which would help them communicate the complex aspects of living with this chronic illness.

Illness forces you to rest in place so much that you begin to notice the little details of objects around you. The intricate aesthetic of this animation emerged from this increased awareness and an appreciation of the things around Inga’s home that became her whole world.

Chronic illness isolates us physically from others but also from society by a lack of understanding. Inga wants this film to help connect people again.

To learn more about ME/CFS (Australia): https://www.emerge.org.au/​
To help fund medical research into ME/CFS: https://www.omf.ngo/

To see behind the scenes follow me on Instagram or Facebook:
https://www.instagram.com/anexistenceproject/ https://www.facebook.com/anexistenceproject

#mecfs​       #stopmotion​      #chronicillness

 

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Food implications in central sensitization syndromes

Posted on 04/01/2021 by wames

Food implications in central sensitization syndromes, by Elena Aguilar-Aguilar, Helena Marcos-Pasero, Maria P Ikonomopoulou  and Viviana Loria-Kohen in J. Clin. Med. 2020, 9(12), 4106 [doi.org/10.3390/jcm9124106] (This article belongs to the Special Issue New Frontiers in the Diagnosis, Prediction, Prevention, and Management of Fibromyalgia)

 

Review abstract:

Fibromyalgia (FM), chronic fatigue syndrome (CFS) and multiple chemical sensitivity (MCS) are some of the central sensitization syndromes (CSSs). The complexity of their diagnosis, the high interindividual heterogeneity and the existence of multi-syndromic patients requires a multifaceted treatment.

The scientific literature is contradictory regarding the role of food in CSS, and evidence on the role of nutrition in MCS is particularly scarce. This review consists in gathering information about the current status of dietary recommendations (i.e., special dietary interventions, the role of additives, presence of micronutrient deficiencies, nutritional supplements and elimination of other nutrients and substances) and discussing the scientific evidence in depth to shed light on appropriate nutritional treatment managements for CSS patients. Current indications show that dietary modifications may vastly improve the patients’ quality of life at a low cost.

We suggest personalized treatment, taking into consideration the severity of the disease symptoms, quality of life, coexistence with other diseases, pharmacological treatment, changing clinical characteristics, nutritional status, energy requirements and food tolerances, among others, as the best ways to tailor specific dietary interventions. These approaches will partially overcome the lack of scientific and clinical research on MSC.

Patients should also be advised on the serious consequences of following dietary guidelines without a dietitian’s and clinician’s supervision.

‘It is striking that, despite the high prevalence of gastrointestinal and other diet-related problems and the impact nutritional treatment may have on these patients, none of these practical guides include dietary guidelines for the treatment of CSS patients’

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Video: Diagnosed with ME, attending long COVID clinic

Posted on 03/31/2021 by wames

Long Covid: ‘It’s like someone has piled sandbags on top of me’

Reece caught coronavirus during the first wave of the pandemic in March 2020, but like many twenty-somethings, he wasn’t hospitalised overnight.

What he thought would be a mild illness became a protracted nightmare with his partner Alice becoming his carer.

Months after his initial infection, he was diagnosed with CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) by his GP and referred to a specialist. His CFS/ME consultant later confirmed his CFS/ME symptoms were a form of ‘long Covid’ and referred him to a long Covid clinic [England].

Watch the BBC video                              March 30, 20212

Video Journalist: Lorna Acquah       Executive producer: Kate Forbes

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Deep phenotyping of ME/CFS in Japanese population

Posted on 03/29/2021 by wames

Deep phenotyping of myalgic encephalomyelitis/chronic fatigue syndrome in Japanese population, by Toshimori Kitami, Sanae Fukuda, Tamotsu Kato, Kouzi Yamaguti, Yasuhito Nakatomi, Emi Yamano, Yosky Kataoka, Kei Mizuno, Yuuri Tsuboi, Yasushi Kogo, Harukazu Suzuki, Masayoshi Itoh, Masaki Suimye Morioka, Hideya Kawaji, Haruhiko Koseki, Jun Kikuchi, Yoshihide Hayashizaki, Hiroshi Ohno, Hirohiko Kuratsune & Yasuyoshi Watanabe in Scientific Reports volume 10, Article number: 19933 (2020)

 

Research abstract: 

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and debilitating disease with no molecular diagnostics and no treatment options.

To identify potential markers of this illness, we profiled 48 patients and 52 controls for standard laboratory tests, plasma metabolomics, blood immuno-phenotyping and transcriptomics, and fecal microbiome analysis.

Here, we identified a set of 26 potential molecular markers that distinguished ME/CFS patients from healthy controls. Monocyte number, microbiome abundance, and lipoprotein profiles appeared to be the most informative markers. When we correlated these molecular changes to sleep and cognitive measurements of fatigue, we found that lipoprotein and microbiome profiles most closely correlated with sleep disruption while a different set of markers correlated with a cognitive parameter.

Sleep, lipoprotein, and microbiome changes occur early during the course of illness suggesting that these markers can be examined in a larger cohort for potential biomarker application. Our study points to a cluster of sleep-related molecular changes as a prominent feature of ME/CFS in our Japanese cohort.

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