#EndMalnutrionInME guidelines

Posted on 08/08/2023 by wames

Severe ME day – #EndMalnutrionInME guidelines

 

ME needs to be recognised as a risk disease for malnutrition

For Severe ME Day 2023 the 25% Group, which represents people with severe ME, say that currently, allied health care professionals are often unaware that severe ME/CFS can cause nutritional difficulties; ME needs to be recognised as a risk disease for malnutrition and that this can be life threatening.

An early warning system needs to be put in place so that when a patient or their carer report difficulties maintaining nutrition and hydration needs, prompt action is taken.

The inclusion of ME in nutritional guidelines at a national level would help bring about recognition of the condition. However, it is imperative that health care professionals use the tools and guidelines that were specifically designed to manage and treatment malnutrition in conjunction with NICE Guideline 206.

With this in mind, 25% ME Group have gathered together the relevant sections from the guidelines, as well as the links for other useful websites for your ease of use:

  • The NICE Clinical Guideline NG206 for ME/CFS (1.12 and 1.17)
  • The NICE Clinical Guideline CG32: Nutrition support for adults (oral nutrition support, enteral tube feeding and parenteral nutrition covers adults who are malnourished in hospital or their own home or a care home.)
  • NICE Nutritional Support in Adults Quality Standard (QS24)

Read the full statement:

25% Group: Malnutrition in severe ME 

Download an extract:

Guidelines on Nutrition for ME

 

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Video: Very severe ME/CFS

Posted on 08/08/2023 by wames

Video: Very severe ME/CFS, from Broken Battery

 

Very Severe ME/CFS is a debilitating condition causing profound suffering and life-threatening symptoms.

Patients are in bed all day and dependent on care.

They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to ingest food and need to be tube fed [1].

Most doctors have had no formal training; many think it’s psychological and some don’t even believe in the condition. Misdiagnosis and inappropriate management are common.

Recently, there have been two high-profile cases of patients being refused support [2] and an inquest into the death of a person due to medical neglect is currently ongoing [3].

The NICE Guideline has more information including special sections relating to Severe and Very Severe ME/CFS [4].

1. https://www.mdpi.com/2227-9032/9/4/459
2. https://archive.li/2023.02.28-221814/…
3. https://www.codastory.com/waronscienc…
4. https://meassociation.org.uk/wp-conte…

#EndMalnutritionInME    #SevereMEday

Watch more videos from Broken Battery

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Standing strong-Global ME community is unified in support NICE ME/CFS guideline

Posted on 08/08/2023 by wames

Standing strong – Global ME community is unified in firm support for the NICE 2021 ME/CFS guideline

 

WAMES has joined 56 leaders in the ME community from across the globe in writing a rapid response to the July 2023 article titled “Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis.”

The World ME Alliance is disappointed that the Journal of Neurology and Neurosurgery and Psychiatry (JNNP) has not published our rapid response to this article.

Instead, this article remains published, while rapid responses rebutting it are not. This is a major disservice to people with ME everywhere. Readers of this article, and especially professionals who support and care for people with ME, must understand the strength of opposition to these author’s controversial assertions.

this response reiterates the significance of advancing treatments that genuinely improve the lives of those affected by ME

In our rapid response, authors from over 24 countries firmly endorse NICE’s statement that they “reject entirely the conclusions drawn by the authors of this analysis, and in particular their conclusion that NICE has not followed international standards for guideline development which has led to guidance that could harm rather than help patients”. And call for “progress beyond outdated and repetitive arguments.”

While awaiting NICE’s forthcoming detailed response, this rapid response underscores the international ME community’s unity in support of the 2021 NICE guideline on “Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management.” By shedding light on the extensive backing of the ME community and underscoring the imperative for ongoing research, this response reiterates the significance of advancing treatments that genuinely improve the lives of those affected by ME.

Read the unpublished letter

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Severe ME gallery 2023

Posted on 08/07/2023 by wames
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Oriel ME Difrifol 2023

Posted on 08/07/2023 by wames
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Severe ME Day 2023 – #EndmalnutritionInME

Posted on 08/07/2023 by wames

#EndMalnutritionInME – Severe ME day

 

August 8th marks an important day for the global ME (Myalgic Encephalomyelitis) community as we come together to observe Severe ME Day.

This year, the focus is on #EndMalnutritionInME, shedding light on the often overlooked and challenging aspect of accessing appropriate dietary support for individuals battling severe ME.

Severe ME affects roughly 25% of people with ME. For those affected, seemingly simple tasks become insurmountable challenges, making daily life a constant struggle. One lesser-known but crucial issue that significantly impacts the lives of individuals with severe ME is malnutrition.

Malnutrition can occur in people with severe and very severe ME for a number of reasons. In people with very severe ME one of the major causes is sheer debility; the person is just too debilitated to eat and drink sufficiently. Other causes include difficulty swallowing and gastrointestinal problems.

The Battle Against Malnutrition:

#EndMalnutritionInME serves as a rallying cry to address the distressing reality faced by some individuals with severe ME – the difficulty of accessing appropriate dietary support including tube feeding. At its worst, this has led to the death of some individuals.

To aid in spreading awareness about severe ME and #EndMalnutritionInME, our Alliance has created eight eye-catching graphics, each focussing on a different aspect of life that severe ME limits. These graphics are available for free download and use, and we encourage individuals, organisations, and communities to share their message and raise awareness on social media platforms and other channels on August 8th.

Find out more

Gallery of images in Welsh

Gallery of images in English

 

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Research: Impaired balance & physical capacity in ME/CFS & Long COVID

Posted on 08/02/2023 by wames

Impaired balance and physical capacity found in both ME/CFS and Long COVID

 

US researchers found that people with long COVID have reduced physical capacity and postural sway similar to people with ME/CFS, despite having the post-viral illness for an average of only 16 months, rather than 16 years (as in the ME/CFS participants).

Both groups were more impaired than healthy participants and this could mean that they might be at greater risk of falling. Support to adapt their occupational and home environments and schedules could be necessary, but rehabilitation programmes which target muscle strengthening should be explored with extreme caution due to Post-Exertional Malaise, and may only be suitable for a subset of individuals.

“Furthermore, as we are at the start of the long COVID pandemic, there is a real concern these physical capacity decrements may worsen over the next few years, having serious implications for the individual, their familial and social network, and worldwide economies.”

People with Long Covid and ME/CFS exhibit similarly impaired balance and physical capacity: a case-case-control study, by Lawrence D Hayes, Nilihan EM Sanal-Hayes, Marie Mclaughlin, Ethan CJ Berry, Nicholas F Sculthorpe in American Journal of Medicine 23 Jul 2023 [doi.org/10.1016/j.amjmed.2023.06.028]

Research abstract

Purpose
Postural sway and physical capacity had not previously been compared between people with long COVID and people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

Therefore, this study determined postural sway and physical capacity in people with long COVID (∼16 month illness duration; n=21) and ME/CFS (∼16 year illness duration; n=20), versus age-matched healthy controls (n=20).

Methods
Postural sway was during a 30 s static stand test. Physical capacity was determined using the timed up and go test and five times sit to stand test. Throughout, participants wore isoinertial measurement units.

Results
Postural sway was worse (i.e. greater) in people with long COVID and ME/CFS than controls, but not different between long COVID and ME/CFS. Performance of the timed up and go test and five times sit to stand test were worse in long COVID and ME/CFS than controls, but not different between long COVID and ME/CFS.

87% and 13% of long COVID and ME/CFS participants exceeded the threshold for muscle weakness in the five times sit to stand test and timed up and go test, respectively.

Conclusions
These data suggest that both people with long COVID and people with ME/CFS have similarly impaired balance and physical capacity. Therefore, there is an urgent need for interventions to target postural sway and physical capacity in people with ME/CFS, and given the current pandemic, people with long COVID.

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Introducing WAMES volunteer: Caitlin

Posted on 07/21/2023 by wames

Hi! I’m Caitlin and I volunteer with WAMES

 

I joined the WAMES team in late 2022. I’m currently progressing into my 3rd year as a Psychology student at university. For one of my previous modules, I had to find a volunteering placement. I found WAMES’ advertisement on my university’s website, and since joining the organisation, I have never looked back.

Initially, I decided to apply to WAMES through necessity, but also due to my own lack of education surrounding the topic of ME/CFS and chronic illness – whilst I don’t directly suffer, I have several family members who suffer with different chronic illnesses (like fibromyalgia) and thought this placement would be ideal in attempting to understand them a little bit better.

Since volunteering with WAMES, I have developed many different skills whilst working online – using online resources like social media to share useful information, and writing blog posts for the WAMES webpage has helped grow my confidence with online tools which I had not previously used. I thoroughly enjoy these aspects, as I get to research and explore more about what advances are being made in the medical world surrounding ME/CFS and develop my own understanding.

At WAMES, I have found a close-knit community that supports many different people and has incredible members that help each other and everyone. I hope to be able to continue to volunteer with this community in every way I can, helping to spread information about ME/CFS and other chronic illness – there’s ALWAYS more to learn about chronic illnesses!

Read more volunteer’s stories

Contact Sharon for more info about volunteering with WAMES: sharon@wames.org.uk

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Research review: Immune dysfunction in susceptible people leads to the post-viral fatigue syndromes ME/CFS & Long COVID

Posted on 07/19/2023 by wames

Immune dysfunction, ME/CFS and long COVID

 

This review of research by the New Zealand research team led by Prof Warren Tate looks at immunological factors that may explain why some patients never recover from viral infections. It argues that the corona pandemic “provides an unprecedented opportunity to understand the progression of these post-viral diseases.”

Figure 1. Proposal of how a genetically determined immune system or a primed immune system from a prior environmental exposure leads to ME/CFS following a major triggering event.

 

 

 

 

 

 

 

 

 

 

 

 

 

An understanding of the immune dysfunction in susceptible people who develop the post-viral fatigue syndromes Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID (esmed.org), by Max OM Walker, Katie Peppercorn, Torsten Kleffmann, Christina D Edgar & Warren P Tate in Medical Research Archives, [online] 11(7) Jul 2023 [doi.org/10.18103/mra.v11i7.1.4083]

Research abstract:

Viral infection in most people results in a transient immune/inflammatory response resulting in elimination of the virus and recovery where the immune system returns to that of the pre-infectious state.

In susceptible people by contrast there is a transition from an acute immune response to a chronic state that can lead to an ongoing lifelong complex post-viral illness, Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome.

This susceptibility is proposed to be genetic or be primed by prior health history. Complex abnormalities occur in immune cell functions, immune cell metabolism and energy production, and in cytokine immune modulator regulation.

The immune system of the brain/central nervous system becomes activated leading to dysfunction in regulation of body physiology and the onset of many neurological symptoms.

A dysfunctional immune system is core to the development of the post-viral condition as shown with diverse strategies of immune profiling.

Many studies have shown changes in numbers and activity of immune cells of different phenotypes and their metabolism. Immune regulating cytokines show complex altered patterns and vary with the stage of the disease, and there are elements of associated autoimmunity.

These complex changes are accompanied by an altered molecular homeostasis with immune cell transcripts and proteins no longer produced in a tightly regulated manner, reflected in the instability of the epigenetic code that controls gene expression. Potential key elements of the altered immune function in this disease needing further exploration are changes to the gut-brain-immune axis as a result of changes in the microbiome of the gut, and viral reactivation from latent elements of the triggering virus or from a prior viral infection.

Long COVID, an Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – like illness, is the post-viral condition that has arisen in large numbers solely from the pandemic virus Severe Acute Respiratory Syndrome Coronovirus-2. With over 760 million cases worldwide, an estimated ~100 million cases of Long COVID have occurred within a short period.

This now provides an unprecedented opportunity to understand the progression of these post-viral diseases, and to progress from a research phase mainly documenting the immune changes to considering potential immunotherapies that might improve the overall symptom profile of affected patients, and provide them with a better quality of life.

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Poem: This road, by Rachel Hazelwood

Posted on 07/18/2023 by wames

This Road: (I have walked this road before…..)

By Rachel Hazlewood

 

Somewhere faintly whispering in the shadows of my mind

Through an erstwhile firmly shuttered door

A distant thought – a memory I’d hoped I’d never find

I remember: I have walked this road before.

I have felt this empty chasm, strange detachment from the world

I have lived with this confusion and despair;

The routine and the rhythm once more have been unfurled

My coping strategies no longer there.

The future so uncertain, so many things unknown

One more time my mind and body cast adrift:

No words can ever tell you how exhausted I have grown,

How can I once again my spirits lift?

My mind confused and foggy; my body tired and weak;

‘Please not again,’ I hear myself implore:

A monumental effort needed to avoid a future bleak:

I remember: I have walked this road before…..

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