#newWAMESwebsite fundraising challenge!

Posted on 02/13/2023 by wames

WAMES needs a new website

 

The WAMES website has been showing its age for years so we are relieved to be in a position now in 2023 to be able to  upgrade it. This won’t happen overnight as it will take some time and energy to update the content and plan a new site. AND we need to raise the money to pay for it!

 

We invite you to join us in raising £1,500.

Our Volunteering Coordinator, Sharon Williams launched a couple of birthday fundraisers and so far has raised £200.

A great start – thanks Sharon!

What can you do?

Contact Sharon if you need some ideas sharon@wames.org.uk

Why £1,500?

We have contacted a number of Welsh web designers skilled in WordPress and have been gobsmacked to receive quotes varying from £400 to £10,000!

The lower the price, the fewer functions are offered and the more work the WAMES team would have to contribute. Unfortunately our skills are few, but we will still have to learn some new concepts and terminology to communicate effectively with the designer.

By the end of the process we will hopefully know what is meant by menu mapping, SEO optimisation, plug-ins, navigation, cross browser compatibility, hosting, SSL certificates etc. but if we want an effective website it will be essential that someone else is in charge of making it all happen!

£1,500 will cover the design, build and launch of the new website with initial hosting and support plan costs and rebranding.

Let the adventure begin!

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Research: Gut dysfunction found in ME/CFS

Posted on 02/09/2023 by wames

Gut bacteria could have answers for ME/CFS

 

Two separate US studies have found significant differences in the gut microbiomes of people with ME/CFS  compared to healthy people, although it was not possible to tell if they were a cause or consequence of ME/CFS. Researchers hope the findings will help to  develop a diagnostic tool, interventions (dietary, probiotic, prebiotic, or synbiotic) and divide patients into sub-groups to better treat them.

The microbiome may weigh as much as five pounds. The bacteria in the microbiome help digest our food, regulate our immune system, protect against other bacteria that cause disease, and produce vitamins including B vitamins B12, thiamine and riboflavin, and Vitamin K, which is needed for blood coagulation. (University of Washington)

Jackson Laboratory study

Julia Oh’s study compared microbiome samples from people with both short-term ME/CFS (under 4 years; 74 patients) and long-term ME/CFS over 10 years; 75 patients) as well as 79 age- and sex-matched healthy controls. The investigators also looked at blood plasma samples.

There was less diversity found in patients with short-term disease fewer microbes known to be butyrate producers. Butyrate is important for protecting the integrity of the gut barrier and is also known to play an important role in modulating the immune system.

In contrast, the gut microbiomes had re-established in those with long-term disease and were more similar to the healthy controls. However, there were a number of changes in the metabolites in their blood plasma, including many of those related to the immune system. They also had differences in levels of certain types of immune cells compared with the healthy controls.

Highlights

  • Multi-‘omics identified phenotypic, gut microbial, and metabolic biomarkers for ME/CFS
  • Reduced gut microbial diversity and increased plasma sphingomyelins in ME/CFS
  • Short-term patients had more severe gut microbial dysbiosis with decreased butyrate
  • Long-term patients had more significant metabolic and clinical aberrations

Multi-‘omics of gut microbiome-host interactions in short- and long-term ME/CFS, by Ruoyun Xiong, Courtney Gunter, Elizabeth Fleming, Suzanne D Vernon, Lucinda Bateman, Derya Unutmaz, Julia Oh

The Center for Solutions study

Williams’s study looked at the microbiomes of 106 people with ME/CFS and 91 healthy controls that were matched for age, sex, geography, and socioeconomic status. It also looked at levels of microbial species in the stool. It didn’t include analysis of blood plasma, though this group has already published plasma metabolomics analyses elsewhere. It did look at metabolites in the stool, which demonstrated reduced levels of butyrate metabolites in ME/CFS.

Highlights

  • ME/CFS patients have substantial gut microbiome dysbiosis
  • Bacterial abundances, functions, SCFAs and species interactions deviate in ME/CFS
  • Reduced F. prausnitzii and E. rectale in ME/CFS may contribute to butyrate deficiency
  • Low F. prausnitzii abundance correlates with more severe fatigue symptoms in ME/CFS

Deficient butyrate-producing capacity in the gut microbiome is associated with bacterial network disturbances and fatigue symptoms in ME/CFS, by Cheng Guo, Xiaoyu Che, Thomas, Briese, Amit Ranjan, Orchid Allicock, Rachel A Yates, Aaron Cheng, Dana March, Mady Hornig, Anthony L Komaroff,
Susan Levine, Lucinda Bateman, Suzanne D Vernon, Nancy G Klimas, Jose G Montoya, Daniel L Peterson, W Ian Lipkin, Brent L Williams

In the media:

NIH: Studies find that microbiome changes may be a signature for ME/CFS

NIH Director’s blog: More Clues into ME/CFS Discovered in Gut Microbiome

New Scientist: Chronic fatigue syndrome linked to lower levels of some gut bacteria

National Geographic: Chronic fatigue syndrome is a puzzle. Your gut microbiome may hold the key

Neuroscience news: Microbiome changes may be a signature for ME/CFS

Health rising: The NIH ME/CFS Gut Studies Pt. I: A Biomarker for Chronic Fatigue Syndrome (ME/CFS)?

News-medical: Research reveals differences in the gut microbiomes of people with ME/CFS

Science media centre: Expert reaction to two studies on the gut microbiome and ME/CFS

Yahoo news: Our gut bacteria may have the answers to this mystery illness affecting millions

Technology networks: Chronic Fatigue Syndrome patients have altered gut microbiota

EurekAlert: Myalgic encephalomyelitis/chronic fatigue syndrome is associated with distinct changes in the microbiome and gut metabolites

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Research: Endothelial dysfunction in ME/CFS

Posted on 02/08/2023 by wames

Endothelial dysfunction and vascular homestasis in ME/CFS

 

A sub-study of the RituxME trial by Norwegian researchers found a problem in the blood vessels on the heart in a group of people with ME/CFS. Treatment with Rituximab caused a slight but significant improvement in symptoms within 18 months. They conclude that the vascular or circulatory system could play a role in ME/CFS.

Endothelial dysfunction is a type of non-obstructive coronary artery disease (CAD) in which there are no heart artery blockages, but the large blood vessels on the heart’s surface constrict (narrow) instead of dilating (opening). This condition tends to affect more women than men and causes chronic chest pain. (Stanford)

 

Endothelial dysfunction in ME/CFS patients, by Miriam Kristine Sandvik, Kari Sørland, Elisabeth Leirgul, Ingrid Gurvin Rekeland, Christina Særsten Stavland, Olav Mella, Øystein Fluge in PLoS One, 2023 Feb 2;18(2):e0280942 [doi: 10.1371/journal.pone.0280942]

 

Research abstract

Objective:

A few earlier studies have found impaired endothelial function in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The present study investigated large-vessel and small-vessel endothelial function in patients with ME/CFS.

Study design:

The study was a substudy of the RituxME trial, a national, multicenter, randomized, double-blind, placebo-controlled phase III study on the effect of rituximab vs. placebo in ME/CFS patients in Norway.

Flow-mediated dilation (FMD) and post-occlusive reactive hyperemia (PORH) was measured at baseline and after 18 months of treatment in 39 patients and compared with healthy controls. Other outcome measures were symptom severity and various physical function measures.

Results:

ME/CFS patients had markedly reduced FMD compared to healthy controls at baseline (5.1% vs. 8.2%, p< 0.0001, adjusted for arterial diameter and sex), and significantly lower microvascular regulation measured by PORH than healthy controls (1354 PU vs. 2208 PU, p = 0.002).

There were no differences between the treatment and placebo groups in symptom changes or vascular measures. As a group, the ME/CFS patients experienced a slight, but significant improvement in clinical symptoms after 18 months. PORH, but not FMD, was similarly improved (1360 to 1834 PU, p = 0.028). There was no significant correlation between FMD and PORH.

There were non-significant tendencies towards associations between symptom severity/physical function measures and lower FMD and PORH, and a significant correlation between PORH and steps per 24 hours at baseline.

Conclusions:

ME/CFS patients had reduced macro- and microvascular endothelial function, indicating that vascular homeostasis may play a role in the clinical presentation of this disease.

 

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Research: Gut symptoms in ME/CFS

Posted on 02/07/2023 by wames

Gastrointestinal symptoms in ME/CFS

 

The RituxME study team  in Bergen, Norway have turned their attention to the little studied topic of gut symptoms in ME/CFS.

 

Key summary:

Gastrointestinal symptoms are common in ME/CFS, but there is a knowledge gap in the literature concerning gastrointestinal motility features and detailed symptom description.

In this study, patients with ME/CFS had signs of impaired gastric accommodation after a liquid meal.

Out of 20 patients, 15 patients reported fullness/bloating, 9 reported abdominal pain, and 7 reported nausea. The patients showed signs of visceral hypersensitivity on a drink test.

Our findings suggest that patients with ME/CFS share many similarities with patients with Functional Dyspepsia. The findings were not typical for Irritable Bowel Syndrome.

 

Gastric dysmotility and gastrointestinal symptoms in myalgic encephalomyelitis/chronic fatigue syndrome, by Elisabeth K Steinsvik, Trygve Hausken, Øystein Fluge, Olav Mella, Odd Helge Giljain in Scand J Gastroenterol. 2023 Feb 2;1-8. [doi: 10.1080/00365521.2023.2173533]

 

Research abstract:

Background:

Gastrointestinal symptoms are common in ME/CFS, but there is a knowledge gap in the literature concerning gastrointestinal motility features and detailed symptom description.

Objective:

In this study, we aimed to characterize gastric motility and gastric symptoms in response to a liquid meal.

Methods:

We included 20 patients with ME/CFS with abdominal complaints who were recruited to a double-blind randomized placebo-controlled trial of Rituximab. The patients of this sub study were examined with an ultrasound drink test, and gastrointestinal symptoms were evaluated using the Rome III questionnaire and Irritable Bowel Syndrome Symptom Severity Scale (IBS-SSS) questionnaire.

Results:

We found that patients commonly reported fullness/bloating (75%), abdominal pain (45%) and nausea (35%). Ultrasound measurements revealed lower proximal measurements of the stomach after a meal (p <0.01) and larger fasting antral area (p = 0.019) compared to healthy controls. The patients had a stronger symptomatic response to the liquid meal compared to healthy controls regarding epigastric pain, discomfort and nausea (p < 0.05). Ninety percent of the patients reported bowel movement frequencies within the normal range but scored high on bowel habit dissatisfaction and life disruption.

Conclusion:

The patients presented with fullness/bloating, nausea and epigastric pain, showed signs of impaired gastric accommodation and visceral hypersensitivity, showing that the gastrointestinal symptoms of ME/CFS patients are similar to functional dyspepsia.

 

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World ME day 2023 – theme: PEM

Posted on 02/07/2023 by wames

2023 World ME Day campaign announced

 

From the World ME Alliance:

The theme for World ME Day 2023 will be the hallmark symptom of ME: post-exertional malaise. The campaign is all about changing the narrative, so that globally people begin to understand this disease more accurately. That’s why our tagline this year is “ME: the disease where pushing harder can make you sicker”.

Our 21 member organisations and countless individuals will be collaborating across the globe to get this message out for May 12th.

We’re going to keep using the hashtag #LearnFromME, because we know the ME community has incredible knowledge and expertise to share, and everyone can #LearnFromME. Whether you are a health professional, a friend, a family member, a politician, a healthcare commissioner, or a member of the public: ME is a disease that we can and should learn from.

So what is post-exertional malaise, and why are we focusing on it? 

Post-exertional malaise (PEM) is something that everyone with ME experiences.

It is a worsening of symptoms after physical, mental, or emotional exertion that would not have caused a problem before the illness and is the hallmark symptom of ME. For some patients, sensory overload (light and sound) can induce PEM. PEM intensifies the severity of symptoms and may last days, weeks, or permanently. The symptoms typically begin to worsen 12 to 48 hours after the activity or exposure.

When someone hears about ME, we want this key aspect of the disease to be the first thing that comes to mind.

This is the story of ME that needs to be known, and learnt from.

Long COVID means millions more are experiencing post-exertional malaise

Before the COVID-19 pandemic hit, there were between 17 and 30 million people living with ME worldwide. But now there are 65 million people living with long COVID, and half of those individuals are experiencing post-exertional malaise.

This means the number of people living with ME has likely doubled over the past 3 years.

ME: the disease where pushing harder can make you sicker

Our 21 member organisations spanning 14 countries are all getting behind World ME Day and the focus on post-exertional malaise for 2023.

We plan to:

  • Define the story of ME around this core worsening of symptoms
  • Connect and build alongside those with long COVID
  • Create resources to help everyone #LearnFromME and post-exertional malaise
  • Lobby decision-makers globally for more research and better education around post-exertional malaise

In the run up to May 12th we’ll be creating ways for you to share your story of post-exertional malaise, or learn about this core aspect of ME and the impact it has.

 

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Research: Transcriptomics: female ME/CFS patients responded differently to an exercise challenge

Posted on 02/04/2023 by wames

Disrupted immune signatures found in females with ME/CFS

 

US researchers found that female ME/CFS patients responded differently to an exercise challenge that stimulates PEM, compared to healthy females.  They studied the RNA molecules in the cells (transcriptomics).

The ME/CFS patients did not show significant changes in gene expression, while the healthy patients did.

During the recovery period (commonly when PEM begins), the ME/CFS patients showed an abnormal immune and cellular response.

“The unique functional pathways identified provide a foundation for future research efforts into the disease, as well as for potential targeted treatment options.”

Stress-Induced Transcriptomic Changes in Females with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Reveal Disrupted Immune Signatures, by Derek J Van Booven, Jackson Gamer, Andrew Joseph, Melanie Perez, Oskar, Zarnowski, Meha Pandya, Fanny Collado, Nancy Klimas, Elisa Oltra and Lubov Nathanson in Int. J. Mol. Sci. 2023, 24(3) [10.3390/ijms24032698]

Research abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, complex multi-organ illness characterized by unexplained debilitating fatigue and post-exertional malaise (PEM), which is defined as a worsening of symptoms following even minor physical or mental exertion.

Our study aimed to evaluate transcriptomic changes in ME/CFS female patients undergoing an exercise challenge intended to precipitate PEM. Our time points (baseline before exercise challenge, the point of maximal exertion, and after an exercise challenge) allowed for the exploration of the transcriptomic response to exercise and recovery in female patients with ME/CFS, as compared to healthy controls (HCs).

Under maximal exertion, ME/CFS patients did not show significant changes in gene expression, while HCs demonstrated altered functional gene networks related to signaling and integral functions of their immune cells.

During the recovery period (commonly during onset of PEM), female ME/CFS patients showed dysregulated immune signaling pathways and dysfunctional cellular responses to stress. The unique functional pathways identified provide a foundation for future research efforts into the disease, as well as for potential targeted treatment options.

Health rising: Exercise triggers major immune system letdown in ME/CFS

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Treatment harms to patients with ME/CFS – GET & CBT

Posted on 02/02/2023 by wames

A review of treatment harms to patients with ME/CFS

 

Psychologist and researcher Dr David F Marks believes that as there is growing evidence that ME/CFS and PASC have similar symptoms “it seems highly possible that the same therapeutic approaches will be offered to patients with PASC as have already been tried with patients with ME/CFS.

It is timely to review the evidence on the potential harms of such treatments, one of which is Graded Exercise Therapy (GET) and another that is often combined with GET, Cognitive Behaviour Therapy (CBT).

Despite the evidence of physiological and cellular abnormalities in ME and CFS, these approaches follow the biopsychosocial model (BPSM) claimed by the discredited Psychosomatic School to legitimize the use of CBT and GET for patients with ME/CFS .

A recent review concluded:
The evidence …suggests that none of these psychosomatic hypotheses is empirically supported. The lack of robust supportive evidence together with the use of fallacious causal assumptions, inappropriate and harmful therapies, broken scientific principles, repeated methodological flaws and an unwillingness to share data all give the appearance of cargo cult science.

The psychosomatic approach needs to be replaced by a scientific, biologically grounded approach to MUS/ME/CFS that can be expected to provide patients with appropriate care and treatments.

Patients with MUS/ME/CFS and their families have not been treated with the dignity, respect and care that is their human right. Patients with MUS/ME/CFS and their families could consider a class action legal case against the injuring parties.”

Read the paper for full conclusions and an overview of the work of:

  • Twisk and Maes (2009)
  • Kindlon (2011) and (2017)
  • Vink and Vink-Niese (2018)
  • Geraghty and Blease (2019)
  • McPhee, Baldwin, Kindlon and Hughes (2019)
  • Friedberg, Sunnquist and Nacul (2020)
  • NICE Draft Guidance (2020)

Treatment Harms to Patients with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, by David F Marks in Adv Bioeng Biomed Sci Res, 6(1), 01-04, Feb 2022

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Hypothesis: Cerebrospinal fluid pressure increase in CFS & FM

Posted on 01/31/2023 by wames

The role of increased cerebrospinal fluid pressure in CFS and FM

 

Belgian researchers reviewed research literature to find characteristics signs that are shared with empty sella syndrome and suggest that moderate or intermittent increases in cerebrospinal fluid pressure are involved in causing FM and CFS and should stimulate further research into the causes of these conditions.

Review Plain Language Summary:

The cause of fibromyalgia (FM) and chronic fatigue syndrome (CFS) is not yet elucidated. Disturbances in the interactions between the hypothalamus, pituitary gland, and adrenal glands (the hypothalamo-pituitary-adrenal (HPA) axis) in FM and CFS may result in abnormal hormone production.

However, a novel hypothesis proposes that moderate increases in cerebral and spinal fluid pressure may underlie both FM and CFS. Increased cerebral pressure may impede blood flow in the pituitary gland, resulting in hormonal disturbances.

Indeed, it is well known that severely increased cerebral pressure can cause compression and flattening of the pituitary gland, potentially leading to pituitary hormone deficiency, termed empty sella syndrome. The sella (turcica) is a saddle-shaped notch in the bone at the base of the skull where the pituitary gland is located.

A search of the scientific literature revealed that increased cerebrospinal fluid pressure, obesity, female sex, headache and migraine, fatigue, visual disturbances, vertigo, hearing loss, and widespread pain were all more prevalent in empty sella, FM and CFS patients than in healthy individuals.

Furthermore, it was demonstrated that the injection of substances to stimulate pituitary hormone production resulted in similar responses, including reduced cortisol, growth hormone, luteinizing hormone, and thyroid-stimulating hormone production and increased prolactin production, in all three conditions compared to healthy individuals.

The findings of this review provide further support for the hypothesis that moderate or intermittent increases in cerebrospinal fluid pressure are involved in the pathogenesis of FM and CFS and should stimulate further research into the causes of these conditions.

The link between Empty Sella Syndrome, Fibromyalgia, and Chronic Fatigue Syndrome: The role of increased cerebrospinal fluid pressure, by Mieke Hulens, Wim Dankaerts, Ricky Rasschaert, Frans Bruyninckx, Peter De Mulder, Chris Bervoets in Journal of Pain Research 2023:16, Pages 205—219 [doi.org/10.2147/JPR.S394321] 25 January 2023

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#WAMES_800 fundraising target reached!

Posted on 01/26/2023 by wames

£800 raised will keep WAMES working during 2023

 

Grateful thanks goes to the Carmarthenshire ME Support Group for donating £100. This means we have reached our #WAMES_800 fundraising goal and we will be able to pay bills for running costs during 2023.

Thanks to all who have played a part in this great achievement by donating, shopping and fundraising. Financial pressures are increasing for all of us, but when many people make time to shop through a fundraising scheme or donate small amounts of money this can add up to enough to make a difference.

Make fundraising a habit

But… that is not the end of our fundraising unfortunately! We invite you to adopt a WAMES fundraising habit to ensure we reach 2024 financially secure. Every little counts!

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Call for WHO to recognise energy limiting disabilities

Posted on 01/26/2023 by wames

World ME Alliance highlights energy limiting disabilities

 

As a founding member of  the World ME Alliance WAMES joins ME organisations round the world in calling for better understanding in the WHO of the challenges people with ME and long COVID experience when trying to access healthcare.

Highlighting critical gaps in the WHO “Global report on health equity for persons with disabilities”

On the 2nd December 2022, the World Health Organization (WHO) published an important global report on health equity for persons with disabilities. The report is based upon the principle that persons with disabilities have the right to the highest attainable standard of health as those without disabilities.

It demonstrates that while some progress has been made in recent years, the world is still far from realizing this right for many persons with disabilities who continue to die earlier, have poorer health, and experience more limitations in everyday functioning than others.

The World ME Alliance and our members were pleased to see recognition of the poor health outcomes persons with disabilities face alongside actions to address this.

However, on reading the report we felt there were significant gaps around the distinct stigma and access barriers facing those with energy limiting disabilities, in particular myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID.

Our 21 members therefore joined together in writing a response to the report, and calling on the WHO to more fully integrate those with energy-limiting disabilities such as ME/CFS and long COVID into the upcoming “Guide for Action” being developed to support countries to implement the recommendations on improving health equity.

We included three recommendations:

  1. We recommend the creation of a committee or working group for the WHO for those disabled by energy-limiting illnesses – thus creating a mechanism for securing input from that community in the future.
  2. We suggest a section in the “Guide for Action” describing energy-limiting disabilities, and including a definition of post-exertional malaise. We believe it would be beneficial to include a story from someone with an energy-limiting disability in this toolkit.
  3. We noticed that the report mentioned on page 26 that the “evidence on how COVID-19 impacts disability prevalence in populations is still evolving,” and would instead contend that there has been a large amount of research clearly demonstrating the disabling impacts of COVID-19. We recommend an update to this section, or a section defining post-viral illness, in the upcoming “Guide for Action.” This would create an acknowledgement of research advances which have been made both in defining the scope of the disabling and long-term effects that people experience post-COVID, and in assessing the breadth of the impact societally.

We are hopeful that the WHO will work with us and other organizations to achieve better awareness of energy-limiting disabilities in their work going forwards, and look forward to their response.

Read the full letter

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