Management of nutritional failure in people with severe ME/CFS: Review of the case for supplementing NICE Guideline NG206

Prof  Jonathan Edwards writes:

“In the United Kingdom, a small but steady stream of people diagnosed with ME/CFS have run into serious problems with nutrition because of difficulties with eating and drinking, and some have not survived.

The clinical problem is extremely difficult, with little or no formal evidence on which to base diagnosis-specific recommendations for care, or information about prognosis. In several cases, however, the problem has apparently been compounded by a lack of provision of adequate services, misunderstandings, and conflict between health care professionals over diagnosis and approach to management.

The following is a review of the clinical problem, including some suggestions for protocol content that might supplement NICE Guideline NG206.

The main conclusion is that there is an urgent need for a consensus amongst professionals that focuses on practice based reliable evidence rather than theory-laden diagnosis.”

All reasonable efforts should be made to avoid stimuli to which patients are intolerant, which can include light, sound, physical contact, and odours. Exposure to stimuli has in the past led to a breakdown in trust and care and failure of life support.

Content for a protocol

Prof Edwards’ suggestions are based on consultation with health care professionals with experience in the care of severe ME/CFS. They are in line with both NG206 and the section on nutritional support in the recent BACME Shared Clinical Practice Document on Severe and Very Severe ME/CFS (2024) and draws from A Physiotherapist’s Guide to Understanding and Managing ME/CFS (Clague-Baker et al., 2023).

The protocol should apply to any patient if:

1. They have persistent and severe clinical features of ME/CFS as defined by disabling fatigue or exhaustion, exertion intolerance with post-exertional malaise, and more generalised intolerance of environmental stimuli.
2. They are unable to maintain body weight and/or hydration through normal feeding.
3. There is no contraindication to specific feeding procedures (such as intestinal obstruction).

Recommendations:

• An outline of management is given in NICE Guideline NG206, including general recommendations on minimising environmental stimuli in hospital.
• Feeding support with nasogastric tube, gastrostomy, PICC, or other methods should be offered in a timely fashion but may require modification in the context of orthostatic intolerance without the use of a standard angle of head elevation during feeding periods.
• Standard nutritional guidelines should be used based on loss of weight and poor oral intake, in line with recommendations from the British Association for Parenteral and Enteral Nutrition (which uses the Malnutrition Universal Screening Tool, MUST (see https://www.bapen.org.uk/pdfs/must/must_full.pdf)
• Home-based services should be made use of wherever possible.

Read the full recommendations and review of evidence:

Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, by Jonathan Edwards in Qeios Jun 25 2024 [doi.org/10.32388/T9SXEU] Preprint

ME/CFS service development 

The development of health services for people with ME/CFS in Wales continues, although only one Health Board has fully launched their service.  Staff recruitment is a slow business and Health Boards continue to experience internal pressures due to staff shortages and financial constraints.

Sixteen months ago, in March 2023, the Health Minister announced funding to:

“widen access to Wales’ long-Covid services… to people with other long term conditions whose rehabilitation and recovery are similar – for example, people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), fibromyalgia and other post-viral associated conditions.”‘

WAMES has been working hard to explain to Health Boards how Post-Exertional Malaise (PEM) affects the lives of people with ME/CFS and how this impacts symptom management.

We are pleased that many Health Boards have been keen to hear about ME/CFS from those living with the condition in their area, and that some intend to consult further with patients. We hope this will translate into appropriate services for people with ME of all ages and severities.

This is what we know about the current state of development. Please let us know if you have additional information.

Aneurin Bevan University Health Board

ABUHB are well advanced with the development of education and symptom management sessions for adults with a range of conditions. These can be accessed by referral from a GP or other health professional. They are also are exploring extending services to include children with ME/CFS.

Betsi Cadwaladr UHB

BCUHB is accepting a few people onto revised, albeit reduced, ME/CFS services in Llanfairfechan near Conwy and Connah’s Quay in the east. The Health Board continues to develop a Community Complex Conditions Service for adults, which aims to include the housebound. There are still plans to consult with residents, but this has been delayed.

The ME/CFS service offers individual biopsychosocial assessments, which can be face to face or virtual, some individual follow-up sessions if appropriate, and group work based on Acceptance and Commitment (ACT) principles. The group focuses on better managing symptoms and includes: Pacing of activity/energy management; improving sleep; diet; and stress management.

Cardiff and Vale UHB

The development of a Long Term Conditions service in the Cardiff and Vale area is well under way, and a soft launch of some self-management support sessions has begun i.e they are accepting adult participants before all aspects of the service are up and running. They are also exploring the possibility of setting up a Complex illness clinic, which could cater for the severely affected. Their information about ME/CFS can be found on the optimistically named Keeping me well website. Continue reading →

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  CHANGE of DATE – now Sat 14th Dec!

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