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!

Posted in News | Tagged , | Comments Off on WAMES is growing to meet the challenges of 2021

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

Posted in News | Tagged , , , , , , , , , , , , , | Comments Off on New study shows reduced ability to regulation of the cardiovascular system in patients with ME/CFS

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.

Posted in News | Tagged , , , , , , , | Comments Off on Dissecting the nature of Post-Exertional Malaise

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

 

Posted in News | Tagged , , , | Comments Off on Video: Living with ME/CFS: a paper stop-motion animation

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’

Posted in News | Tagged , , , , , , , , , , , | Comments Off on Food implications in central sensitization syndromes

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

Posted in News | Comments Off on Video: Diagnosed with ME, attending long COVID clinic

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.

Posted in News | Tagged , , , , , , , , , , , , , , , , , , , , , , | Comments Off on Deep phenotyping of ME/CFS in Japanese population

NICE ME/CFS guideline publication delay – Aug 2021

Posted on 03/29/2021 by wames

NICE ME/CFS guideline – new publication date

 

29/03/2021

Level 1A, City Tower
Piccadilly Plaza
Manchester
M1 4BT

www.nice.org.uk

 Dear Stakeholder,

Because of the large number of comments received during consultation on the ME/CFS guideline, and the additional work needed to respond to them fully, the publication date has changed. The guideline will now publish on 18th August 2021.

Kind regards,

Katie Stafford, Senior Guideline Coordinator

Posted in News | Comments Off on NICE ME/CFS guideline publication delay – Aug 2021

Comparative survey of people with ME/CFS in Italy, Latvia, & the UK (EUROMENE)

Posted on 03/25/2021 by wames

Comparative survey of people with ME/CFS in Italy, Latvia, and the UK: a report on behalf of the Socioeconomics Working Group of the European ME/CFS Research Network (EUROMENE) by Elenka Brenna, Diana Araja and Derek F H Pheby in Medicina 2021, 57(3), 300; [doi.org/10.3390/medicina57030300] (This article belongs to the Special Issue ME/CFS: Causes, Clinical Features and Diagnosis)

 

Research abstract:

Background and Objectives:

A comparative survey of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) patients was carried out in three countries, with the aim of identifying appropriate policy measures designed to alleviate the burden of disease both on patients and their families, and also on public institutions.

The survey addressed demographic features, the economic impact of the disease on household incomes, patterns of medical and social care, specific therapies, social relationships, and the impact of the illness on quality of life.

Materials and Methods:

Parallel surveys were undertaken in Italy, Latvia, and the UK. There were 88 completed responses from Italy, 75 from Latvia, and 448 from the UK. To facilitate comparisons, 95% confidence intervals were calculated in respect of responses to questions from all three countries. To explore to what extent general practitioners (GPs) manage ME/CFS disease, a separate questionnaire for GPs, with questions about the criteria for granting a diagnosis, laboratory examinations, the involvement of specialists, and methods of treatment, was undertaken in Latvia, and there were 91 completed responses from GPs.

Results:

The results are presented in respect of sociodemographic information, household income, disease progression and management, perceived effectiveness of treatment, responsibility for medical care, personal care, difficulty explaining the illness, and quality of life. Demographic details were similar in all three countries, and the impact of illness on net household incomes and quality of life. There were significant differences between the three countries in illness progression and management, which may reflect differences in patterns of health care and in societal attitudes. Graded exercise therapy, practiced in the UK, was found to be universally ineffective.

Conclusions:

There were similarities between respondents in all three countries in terms of demographic features, the impact of the illness on household incomes and on quality of life, and on difficulties experienced by respondents in discussing their illness with doctors, but also differences in patterns of medical care, availability of social care, and societal attitudes to ME/CFS.

Posted in News | Tagged , , , , , , , , , | Comments Off on Comparative survey of people with ME/CFS in Italy, Latvia, & the UK (EUROMENE)

WAMES statement on post-viral illnesses: COVID-19 & ME/CFS

Posted on 03/25/2021 by wames

WAMES statement on post-viral illnesses: COVID-19 and ME/CFS

 

WAMES is calling on all political parties in Wales to support an inclusive approach to responding to COVID-19 and ME/CFS.

Wales needs a strategy to recognise and treat illnesses triggered by ALL viruses.

 

What we know about post-COVID illness:

  • Almost 70%  of people affected by COVID experience damage to organs and lingering symptoms. https://www.bmj.com/content/371/bmj.m4470
    10-20% are thought to experience a collection of symptoms which is being called Long COVID, including fatigability, breathlessness, brain fog, pain, sleep disturbance, palpitations. In Wales there are an estimated 15,000 patients with Long COVID.
  • Long COVID is being recognised as a health crisis and the NHS is beginning to consider how they can support patients, some offering psychological and exercise therapies.
  • People who have been hospitalised by COVID-19 are offered referrals, management advice and treatment. People with minor symptoms (or who are asymptomatic) can also develop long lasting symptoms but are not always believed by their GP and can be refused support or referrals.
  • Some Health Boards are developing exercise therapy or virtual self-management classes. The COVID Recovery app has been launched in Wales “to reassure those people that there is support available to them and that they are not alone.” Not everyone has been able to access the app.
  • Based on data from other viruses, including a previous SARS virus, a percentage of survivors will go on to develop the long term condition ME/CFS, possibly as high as 27% https://www.meresearch.org.uk/covid-19-and-me-cfs-cases/

What we know about ME/CFS:

  • A large percentage of people with ME/CFS are aware that they developed the condition following a virus. Doctors suspect that many more also experienced a virus but haven’t made the connection between that and developing ME/CFS.
  • ME/CFS is classified by the World Health Organisation as ‘a condition of the nervous system’ at G93.3 along with other recognised neurological conditions.
  • Research is uncovering widespread dysfunction in many of the body’s systems with the body unable to produce energy to maintain those systems efficiently. The key characteristic for patients is Post-Exertional Symptom Exacerbation (PESE) also known as Post-exertional Malaise (PEM), which is also experienced by many people with long COVID.
  • There are an estimated 13,000 people of all ages with ME/CFS in Wales, approximately 25% of whom are severely affected. If up to 27% with long COVID were to go on to develop long term ME/CFS, the number of people with ME/CFS could rise to over 17,000 in a year or two.
  • Many doctors still do not recognise ME/CFS as a serious long-term, life altering condition and do not refer disabled patients to support services.
  • Health Boards in Wales have been resistant in recognising and offering services for ME/CFS. Three offer psychological and exercise therapies for small numbers of patients with fatigue, alongside pain patients. ME researchers have been warning about the dangers of exercise therapy for decades so many people with ME/CFS have chosen not to access those services.
  • Infections, alongside activity, can lead to relapse and severe illness in ME/CFS, but the condition has not been specifically recognised and included with other neurological conditions, amongst those needing to shield from COVID-19, or be prioritised for vaccination.

What does the WHO and NICE say about long COVID & ME/CFS?

  • The WHO calls on countries to recognise the ‘impact on the individual, on society, and on the economy’ of Post-COVID syndrome, to prioritise rehabilitation and systematically gather information – to practice the “three Rs”—recognition, research, and rehabilitation.
  • The WHO has made no statement about ME/CFS, which affects an estimated 20 million people worldwide.
  • NICE issued a cautionary notice in 2020 for Long COVID which questioned the appropriateness of exercise therapy.
  • NICE issued rapid guidelines for COVID-19 in Dec 2020 which acknowledged the need for supported self-management based on multi-disciplinary clinics and goal-setting, but without specific guidance on the nature of management options.
  • NICE reversed its 2014 ME/CFS guidelines in the 2020 draft, no longer recommending exercise therapy and highlighting the need to manage Post-Exertional Symptom Exacerbation (aka PEM). The final version, which is expected to continue to recommend multi-disciplinary services for ME/CFS, is due out 21 April 2021.

WAMES believes it is right that people suffering from post-COVID symptoms should receive appropriate support from health and social care. It is not right that the NHS and social services should continue to minimise and ignore the debility triggered by other viruses. Now is the time to put right past omissions and put in place appropriate services for ALL survivors of viruses.

In 2020 WAMES called on the Welsh Government to lead the way in caring for ALL survivors of viruses, without discrimination. The response from the Health Minister did not address the issue. WAMES is able to supply more information about any of the issues mentioned above.

Jan Russell, Chair    jan@wames.org.uk

Posted in News | Comments Off on WAMES statement on post-viral illnesses: COVID-19 & ME/CFS