Functional Capacity in ME/CFS: an assessment questionnaire

Researchers from Norway and Norwich have collaborated to improve the ability to  assess funcional capacity in ME/CFS, something they believe can inform all areas of life for affected people.

“The absence of effective tools to assess FC has significant consequences for timely diagnosis, clinical follow-up, assessments for patient disability benefits, and research studies.”

Using feedback from patients they have identified eight domains divided by activity types:

1. personal hygiene/basic functions
2. walking/movement
3. being upright
4. activities in the home
5. communication
6. activities outside the home
7. reactions to light and sound
8. concentration.

Two versions of the questionnaire were developed: a longer version comprising 55 questions (FUNCAP55), developed for improved diagnostic and disability benefit/insurance FC assessments; and a shorter version (FUNCAP27) for clinical patient follow-up and potential use in research.

Assessing Functional Capacity in Myalgic Encephalopathy/Chronic Fatigue Syndrome: A Patient-Informed Questionnaire, by Kristian Sommerfelt, Trude Schei, Katharine A Seton, and Simon R Carding in J. Clin. Med. 2024, 13(12), 3486; [doi.org/10.3390/jcm13123486] Published: 14 June 2024

Scottish medical students’ thoughts on learning about ME/CFS

In early 2024 medical students at Scottish medical schools were invited to take part in an essay competition, 500 words on the topic of ‘What is your most important learning point about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?’

In an article for the Journal of the Royal College of Physicians of Edinburgh Dr Nina Muirhead gives an overview to what they learnt about ME/CFS and how they reacted when writing for the competition, which was funded by the Scottish Government’s education project: Learn About ME.

‘Imagine my surprise to discover ME/CFS is definitely not rare, but inexplicably and infuriatingly unacknowledged’. (Fifth year medical student, Scotland)

Dr Muirhead writes “ME/CFS affects at least 280,000 people in the UK, including approximately 23,000 in Scotland. It is a neurological disease with multisystem symptoms, often triggered by a virus. People with ME/CFS may be left bedbound or housebound with a significantly reduced quality of life. Yet many healthcare professionals do not know how to diagnose or manage this devastating disease, nor do they know how, or what, to teach our next generation of doctors.”

‘Alas, the only time in the last four years I have encountered the term ME/CFS at medical school was as a differential diagnosis for fibromyalgia’ [medical student, Scotland]

ME/CFS also has a major impact on family members’ quality of life. Nearly a third of medical students responding commented on the impact on quality of life as being one of the most important things to learn about this disease.

One student described the experience and delay in diagnosis for two of their family members:

‘. . . these young women were discarded as victims of teenage laziness or anxiety. They had to fight to gain support from their GP  and their diagnosis took several second opinions and ultimately years’.

Another medical student displayed incredible insight in recognising the deficiency of the current system, which relies largely on patient self-help:

‘the burden being placed on the patient to improve their condition through mental work’.

Dr Muirhead sums up:

“It is vital that this topic features more prominently in the medical curriculum, and in our medical textbooks, to avoid patient harm due to delayed or mis-diagnosis and mismanagement.

There is a lot we can offer ME/CFS patients:

• an early and accurate diagnosis
• medication for symptom control
• practical support with disability applications and mobility aids

but above all, these medical students have reminded us that ME/CFS patients should be treated with kindness, compassion and belief.”

Read the full article: Medical students highlight the importance of medical education, kindness, compassion and belief when learning about patients with myalgic encephalomyelitis/chronic fatigue syndrome

Read the winning essay: Learning points about myalgic encephalitis/chronic fatigue syndrome: Bridging the gap between research, clinical practice and awareness, by Bhanu Wahi-Singh

“My most important learning point about ME/CFS, however, is how it really exemplifies that the best doctors are the ones that listen and form a relationship with patients. ME/CFS is often a truly debilitating chronic condition, and it is imperative for us as clinicians to recognise this and understand how it impacts the patient’s life, not just dismiss it because it is complex with an incomplete knowledge base…

ME/CFS is often a truly debilitating chronic condition, and it is imperative for us as clinicians to recognise this and understand how it impacts the patient’s life, not just dismiss it because it is complex with an incomplete knowledge base.”

An open letter from unpaid carers

…to the future UK Prime Minister 

Carers UK has organised an open letter on behalf of unpaid carers across the UK. They will deliver the final letter to 10 Downing Street following the General Election that is taking place on 4 July 2024.

Join the thousands of people who have already added their support!

The key message is a rquest to “to take significant steps over the next five years towards the UK being a society that recognises, values and supports unpaid carers:

1. Reform and significantly increase Carer’s Allowance and other social security payments for carers.
2. Deliver an ambitious and fully funded National Carers Strategy.
3. Invest in breaks, respite services, and introduce new legislation so all carers have the right to regular and meaningful breaks.
4. Make the NHS the most carer-friendly health service in the world.
5. Introduce a right to paid Carer’s Leave for working carers.
6. Recognise caring as the 10th protected characteristic under the Equality Act 2010.
7. Invest in social care services so no one has to care alone, and so Local Authorities are able to meet their existing duties to unpaid carers.
8. Provide more support to help carers manage their health and wellbeing.

Read the full letter and sign  

Carms ME Support Group

The group invites people with ME, family & carers to join them in Coleshill Social Centre, Llanelli for their bi-monthly meetings.

in the Coleshill Social Centre, Coleshill Terrace, Llanelli SA15 3BT.  The entrance is  round the left side.

More info: John James 01267 233793 [pm only]  rjames939@btinternet.com

Meetings: on the 1st Saturday of every second month at 2 pm

April 6th
June 1st
August 3rd
October 5th
Decmber 7th

Wellness with Welsh National Opera

Could breathing & singing coaching help people with ME?

WAMES has met with a representative from the Welsh National Orchestra to find out about their Wellness with WNO initiative.  They already offer a virtual singing and breathing programme to Health Boards for people with Long COVID, and are exploring how to include people with ME in those groups.

The 6 week programme was designed to support people experiencing feelings of breathlessness and anxiety with the aim of  improving breath control, lung function, circulation, and posture. A major benefit seems to be the ability to experience something fun and relaxing in an understanding environment.

April Heade, the WNO producer assured us they had no medical goals, and didn’t see the course as a treatment for Long COVID or ME/CFS, but she had observed that the social interaction, breathing exercises and a chance to sing simple songs appeared to release endorphins and bring a smile to people’s faces. There is also some evidence that singing has general health benefits and can affect blood flow and neuroplasticity of the brain but there is no attempt to use the sessions as medical tools.

Of course, any activity can trigger a PEM flare up or relapse, but April assured us that they understood that ill people needed to be flexible and might not always be able to join in with everything. The advantage of being online, is that on worse days people can monitor a session and join in when they can. A good voice is not necessary as everybody is muted (except the course presenters) and nobody will ever know you are not a professional singer!

This course will not suit everybody but some people may feel they are well enough or are managing their symptoms sufficiently well to make space for it in their weekly management plan.

April explains the content of the hour long sessions

WAMES would like to hear from you if you have tried this or a similar course, or would like to. Did you enjoy it? Did it help you? Would you recommend it? What advice or questions do you have?

Drop us a note (or a song) jan@wames.org.uk or use the contact form.

When art eases pain

PF from south Wales has found better pain management through ‘Diamond Art.’

I want to tell you about the new way I’ve found to help me with my pain management. This is through the process of doing ‘Diamond Art, (DA).

I have in the past been artistically active using various mediums of paint (watercolour & acrylic), charcoal, pen, oil pastels & dry pastels, all of which need mental energy for creativity as well as physical energy for the application.

I have found myself, in the last couple of years, unable to be creative in any way & colouring by numbers isn’t my thing. I cannot colour in from pre-printed forms as I find the lines too thick, which spoil the end result, or the lines are so fine I can’t see them!

However recently in the last six months I tried my hand at ‘Diamond Art.’ I like to refer to it simply as DA.

Create a Diamond painting by affixing vibrantly coloured resin rhinestones to a self-adhesive canvas with a diamond art kit

To those who aren’t familiar with DA, you can purchase a pack costing from £1.99 to £50, which will consist of:

• a pre-printed, slightly gummy canvas. Different sizes are available & the gummy element is a glue for beads to be attached to the canvas.
• a range of coloured beads specifically for each canvas, possibly from 23 – 38 different colours. The colours are coded into the canvas print. The greater the number of colours, the more difficult it becomes, along with the complexity of the canvas print & size you choose.
• you are also supplied sometimes with other items which usually include a type of stylus similar to a pen with which you apply the beads to the canvas.

This activity is good for beginners & those who enjoy more complexity with a higher skill level. A kind person gifted me a pack so I could try my hand at it.

I admit I struggled to cope with the codes & stickiness of the canvas for a while, as my eyesight & brain fog do hinder me, as well as needing physical effort.

However, I just spent some time looking at it all before doing anything, to get my head around the codes which usually consist of numbers ranging from 1 – 9, alphabetical letters & some symbols relating to each small bag of beads.

A helpful trick I found was if I wrote the correct code with permanent ink on each pack of coloured beads, before I began to apply the beads to the canvas, this helped me visually and with my cognitive issues & brain fog. There are canvases with a range of complexity – simple to complex –  to suit every cognitive experience.

I found myself in a state of calm

Amazingly as I progressed through my first canvas, I found myself in a state of calm. I just focused on the process of applying the beads to the canvas whilst other forms of anxiety & my chronic pain went to the back of my mind. This calmness was amplified within me as I found the range of colours a form of colour therapy where certain colours can lift you towards a happier state of mind, just as art used to do for me.

The different type of processes between DA and other forms of Art  means I find the former so much easier. Art requires so much creative energy. In DA it is not needed. So much so, I have written this article in hope someone may find it helpful in their pain management. I hope you do find it helps, given time to overcome the initial learning curve of the codes. Please pass on what can be ‘good news!’

Please note: I do not receive any promotions or gifts, etc from persons or companies in regards to DA.

More information:

Wiki How: How to Diamond Paint 

More articles by PF:

Pacing my way through Pain Clinic

WAMES is always keen to hear stories of what helps you. Contact the jan@wames.org.uk or complete a contact form.

Build a better understanding of ME – share the WMEA ME factsheet

As WAMES joins countries round the world on #WorldMEday in 2024 calling for a #GlobalVoiceForME, we are fortunate to be able to share a fact sheet that highlights the key characteristic of the illness, Post-Exertional Malaise (PEM), also known as Post-Exertional Symptom Exacerbation (PESE).

Produced with the help of people affected by ME in many countries involved in the World ME Alliance, it is available in a range of languages, so it can help build a basic understanding of ME across borders.

Myalgic Encephalomyelitis (ME), also preciously known as chronic fatigue syndrome (CFS), is a disabling, chronic and complex disease.

People with ME are not able to function the same way they did before they became ill. ME changes people’s ability to do daily tasks, like taking a shower or preparing a meal. It often makes it hard to keep a job, go to school, and take part in family and social life. At least 1 in 4 people with ME are bed- or house-bound for long periods during their illness.

ME can get worse after any activity, and pushing harder can make someone with ME more ill. This hallmark symptom is known as Post-Exertional Malaise (PEM).

The COVID-19 pandemic has brought this issue to the forefront, with a growing number of people with long COVID experiencing PEM. This has further highlighted the already urgent need for increased awareness and understanding of ME and its associated symptoms.

Download the ME Factsheet
English           Welsh

English easy-formatting (useful for text-speech software)

Español          Français         Italiano         Portugese     

Hebrew          Catalan

The simple information provided should be known by every healthcare professional, and we hope will give the general public a better understanding of the huge impact of ME.

Whether you are only hearing about ME for the first time, are a healthcare professional or maybe a family member of someone with ME, we hope that our new factsheet will give you a better understanding of this disease and its associated symptoms. Please share it widely with friends, family, and colleagues to help us raise awareness and understanding of this important issue.

FInd out more about World ME day:

World ME Day: ME is a global crisis: Be a #GlobalVoiceForME

Together, we are battling a global health crisis

With your support, we will be a #GlobalVoiceForME

This year marks the 55th anniversary since the World Health Organization (WHO) officially acknowledged ME as a neurological condition, highlighting the urgency of addressing this global health crisis.

In recent times, the landscape of ME has evolved, with COVID-19 triggering a surge in the numbers of individuals affected by ME.

Today, we estimate that more than 55 million individuals worldwide (maybe up to 110 million) are living with the debilitating effects of this condition. Amidst these escalating numbers, WAMES and other member organisations of the World ME Alliance are actively joining forces, amplifying our support for initiatives that seek to address the multifaceted impact of ME on individuals and communities alike.

Bring your voice to building change together!

• 55 years since the World Health Organization (WHO) officially acknowledged ME as a neurological illness
• 55 million upwards now have ME following the COVID pandemic
• no diagnostic test, no cure, no universal treatment
• international cooperation needed to forge a breakthrough!
• we ask the WHO and countries round the world to support #WorldMEDay and take action!

Make a poster declaring yourself as a #GlobalVoiceForME to share on social media.  Read the stories from people around the world

Make a twibbon for use on X

Bridging borders online event 10 May 2024 Find out what advocates round the world are doing to raise awareness of ME

Invite the UK WHO rep to be a #GlobalVoiceForME

Share the World ME film – to be posted on 12 May

Share the ME factsheet – English, Cymraeg, other languages

Press release: Unveiling the Global ME crisis

#WorldMEday    #GlobalVoiceForME

Bridging borders – a WMEA online event 

The Bridging borders event, hosted by the World ME Alliance, will take you on a journey across the globe. ME advocates from a variety of countries will share their innovative advocacy campaigns aimed at breaking down barriers and amplifying the voices of those affected by ME.

Speakers:

Mlindeni Gabela and Sam Pearce – South Africa
Giada da Ros – Italy
Hélène Bennès – France
Emily Taylor – USA
Linda Campbell – Northern Ireland
Martin Hippe – Germany
Joan Serra Hoffman – Portugal
Sonya Chowdhury – UK

Find out more about the speakers

Join us!

Support the international ME family and be inspired to do more in your own advocacy.

Friday 10th May at 5pm BST

Register for free to watch on zoom

RSVP to watch on Facebook

building a #GlobalVoiceForME    #WorldMEday

Show the world you are a #GlobalVoiceForME!

Create a custom poster for #WorldMEDay and join WAMES and advocates from Wales and around the world highlighting the global crisis of ME.

Bring your voice to building change together!

• 55 years since the World Health Organization (WHO) officially acknowledged ME as a neurological illness
• 55 million upwards now have ME following the COVID pandemic
• no diagnostic test, no cure, no universal treatment
• international cooperation needed to forge a breakthrough!
• we ask the WHO and countries round the world to support #WorldMEDay and take action!

To take part go to the World ME Alliance website and follow the instructions to insert a photo of yourself in the template. Save it and share your poster on social media to boost the campaign.

[If you experience problems inserting your photo on the website, try downloading an empty frame and inserting on your own device]

Michelle from South Wales says: “Out of sight, out of mind, to all health professionals because I am both confined to my bed and home and I cannot visit them! Time for change.”

See more voices for ME from around the globe and find out how to take more action: Global voice for ME

Ask the UK rep to the World Health Organisation to be a #GlobalVoiceForME