How will health professionals learn about ME in Wales?

Decades of stigma, misunderstanding and struggle have been experienced by people with ME/CFS when they have attempted to access healthcare in Wales. Knowing this, and realising that no local medical experts have made themselves known, WAMES has been calling for a national programme of training for health professionals using experts from outside the country. (See Delivery plan for Wales proposal).

The response from the Welsh Government to North Wales MS, Mark Isherwood’s Written Questions (see below) about the subject in the Senedd, has been disappointing. Only one course has been run, teaching a Lifestyle medicine approach to ME/CFS. This has 6 pillars: mental wellbeing; minimising harmful substances: healthy relationships; healthy eating; sleep; physical activity!

WAMES has been asking for NHS Wales to run widespread training on the 2021 NICE guideline and to encourage its use across the health service. #ImplementNICEmecfs

Unfortunately WAMES is still hearing about GPs telling patients they have a psychological condition, showing the misunderstanding about ME/CFS persists. Whenever we talk to Welsh Government and Health Boards they ask for examples of patients’ recent experiences and how often the problems arise.

Please tell us your stories of healthcare so we can advocate for better services.

• Does your GP (& others) know about NICE 2021?
• Do they understand about PEM?
• Do you feel confident about the information and advice you have received?

Tell us online, ring the helpline (029 2051 5061) or email jan@wames.org.uk

Don’t forget to tell us which Health Board area (and county) you reside in.

On 16 April 2024 Mark Isherwood MS tabled a written question in the Senedd:

WQ92480 (e)

How many training courses for GPs and health professionals in Wales have been run since the revised myalgic encephalomyelitis/ chronic fatigue syndrome NICE guideline was published in 2021?

Answered by Cabinet Secretary for Health and Social Care, 19/04/2024

Since the revised myalgic encephalomyelitis/chronic fatigue syndrome NICE guideline were published back in 2021, one training course has run in Wales which was attended by 19 delegates. The training was run as a webinar by HEIW in November 2023. The webinar was subsequently published and remains available.

On 16 April 2024 Mark Isherwood MS tabled a written question in the Senedd:

WQ92481 (e)
Have the Welsh Government and local health boards sourced expert myalgic encephalomyelitis/chronic fatigue syndrome training from outside Wales and if so, from where?

Answered by Cabinet Secretary for Health and Social Care, 19/04/2024

Dr Nina Muirhead has presented on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) in the past – however this has not occurred since the pandemic or the publication of the 2021 update by NICE.

Health Education Improvement Wales (HEIW) ran a webinar as part of its Lifestyle Medicine Series on this topic in November 2023.

This training was sourced from within Wales.

#World ME day, 12 May – Take action!

Together, we are battling a global health crisis – help us let the WHO know

A part of the World ME Alliance we are joining with nations all over the world, asking the people responsible for working with the World Health Organization to become a #GlobalVoiceForME.

In the UK this is Ms Nicky Shipton-Yates
WHO Policy Manager
International Directorate
Department of Health and Social Care

At the World ME Alliance, we estimate there are over 500,000 people with ME in UK.

Join this global effort to send a message to the WHO!

Take these simple steps to send an email to Nicky Shipton-Yates and copy in the World ME Alliance, so we can follow-up on the connections you help us to make!

1. Copy and paste the below template into a new email
2. Add your name to the first paragraph, and your contact details at the end
3. Edit the template to include a little about yourself, and how ME has impacted your life, as a person with ME or an ally.
4. Remember to be polite.
5. Copy and paste the recipients email address into the To: field, and remember to include us  at globalvoiceforme@worldmealliance.org as well!
6. Press send!

Share this article with other people in Wales and the rest of the UK to get more people involved!

Copy and paste your template letter to:

dhsc.publicenquiries@dhsc.gov.uk     globalvoiceforme@worldmealliance.org

Urgent Call for Action: Become a global voice for ME

Dear Ms Nicky Shipton-Yates,

I am [Insert Your Name], a citizen and advocate representing the 500,000 plus people with Myalgic Encephalomyelitis (ME) in the United Kingdom.

Before the COVID-19 pandemic, there were between 17 and 30 million people living with ME worldwide. Now, the World ME Alliance now estimates there are at least 55 million globally, with millions of new cases triggered by COVID-19. Research shows half of those with long COVID meet the criteria for an ME diagnosis.

ME has huge economic implications: most people with ME are unable to work, 25% are housebound or bedbound, and there are substantial costs associated with their care.

As we approach World ME Day 2024 on May 12th, dedicated to raising awareness about ME and its impact, I urge you to join me in becoming a voice for those affected by this debilitating condition.

ME was officially recognized as a neurological disease by the WHO 55 years ago, but still faces alarming challenges. Its severe and incurable nature significantly impacts patients’ quality of life, usually forcing them to stop working and taking part in society. Lack of recognition makes their struggles worse.

The World ME Alliance estimates that the numbers of people living with ME in the United Kingdom have more than doubled since the beginning of the COVID-19 pandemic.

I’m reaching out to ask for your help championing the cause of ME in United Kingdom. It’s crucial we take an active role in supporting those living with this devastating disease.

Please contact the World ME Alliance’s Head of Advocacy and Communications, via globalvoiceforme@worldmealliance.org, to arrange a Zoom meeting and explore how United Kingdom can become a #GlobalVoiceForME.

Your support is pivotal for improving the lives of those affected by ME.

Thank you for your time and consideration on this critical issue.

Yours sincerely,
[Your Full Name] [Your Contact Information]

No Welsh strategy to support ME/CFS service development

Following a question in the Senedd and discussions with Welsh Government officials it is now clear that the Welsh Government have rejected WAMES’ request to develop an all-Wales strategy or Delivery Plan to guide service development for ME/CFS in Wales.

Instead, the focus is on supporting Health Boards to develop services as they feel appropriate, as part of their existing Adferiad Long COVID service.

WAMES is very disappointed that all the focus is on rehabilitation services and that it has not been recognised that Health Boards across Wales would benefit from an all-Wales vision and strategy.

WAMES believes that national support and training would reduce the need for each Health Board to ‘reinvent the wheel’ and ensure a common understanding of the nature of ME/CFS, in line with the NICE guideline.

A patient’s journey through the NHS spans diagnosis, education about the illness, self-management support and informed medical care. A national strategy and vision would not remove the ability for Health Boards to address regional issues and needs, but it would remove some of the delays caused by a ‘trial and error’ approach to service development.

WAMES will continue to work with Health Boards to provide the patient and carer perspectiven and be part of the co-production approach that the Welsh Government have called for.

On 16 April 2024 Mark Isherwood MS tabled a written question in the Senedd:

What action will the Welsh Government take in light of the responses to the myalgic encephalomyelitis/chronic fatigue syndrome interim delivery plan, specifically the request from patients for a national strategy to address past stigma and lack of training for professionals?

The Cabinet Secretary for Health and Social Care, Eluned Morgan MS, answered on 23rd April:

Improvements to services for people with ME/CFS in Wales are being driven via our Adferiad (Recovery) programme, which was initially set up to support people with Long Covid.

The My Full Reality interim delivery plan about myalgic encephalomyelitis/chronic fatigue (ME/CFS) was a UK Government initiative. Together with officials from the other devolved governments, we maintained a watching brief about the development of the plan.

Information about the UK Government consultation on the interim delivery plan was circulated in Wales to encourage and enable people, clinicians, and other interested stakeholders to contribute. We are keen to take any learning from the feedback provided but, to date, we have yet to receive the country-specific feedback from the consultation from the UK Government. We have received a response from the Welsh Association of ME & CFS (WAMES), which has been shared with Adferiad-funded service leads in each health boards.

In addition to the £10m initially invested to establish Adferiad-funded services in every health board, £8.3m of recurrent funding has been allocated from March 2023 onwards. I have set out my expectation for this to be used to widen access to people with other long-term conditions whose rehabilitation and recovery needs are similar to people with Long Covid, including people with ME/CFS, and to continue to develop and expand community-focused, multi-disciplinary rehabilitation services, supported by referral pathways into secondary care for those who need it.

All health boards are developing needs-led services that will target recovery and rehabilitation needs focusing on proactive care, self-management, and supported self-management with extensive input from a broad multidisciplinary team. Co-production is an essential factor in service development, and I expect health boards to engage with people with lived experience in this process.

WAMES is grateful to Mark Isherwood MS for all the support he has given over the years to people with ME in Wales.

Joint hypermobility & ME/CFS

Solve ME’s analysis of its You + ME Registry-based population (now Solve Together) sheds light on the complex interplay between joint hypermobility, ME/CFS, and Ehlers Danlos Syndrome.

“Our results showed distinctive clinical characteristics in ME/CFS with joint hypermobility, including a higher likelihood of hereditary hypermobility, reduced health-related quality of life (HRQOL) related to physical functioning and pain, and a range of autonomic, cognitive, headache, gut, and musculoskeletal symptoms.

Sensitivity subgroup analysis underscored the importance of concurrent EDS. In this context, patients with both JH+ ME/CFS and EDS showed more severe symptoms, greater functional limitations, and an increased overall burden of symptoms compared to those with JH+ ME/CFS but without EDS.

These findings emphasize the need for comprehensive clinical assessment and consideration of underlying connective tissue disorders in ME/CFS patients presenting with joint hypermobility. A comprehensive understanding of the clinical features, prognosis, and disease trajectory for these patients could guide cohort selection for research studies and facilitate the discovery of underlying disease mechanisms and targeted therapies.

Further research is needed to understand the implications of joint hypermobility in ME/CFS for research, diagnosis, and clinical care.”

Do people with ME/CFS and joint hypermobility represent a disease subgroup? An analysis using registry data, by Kathleen Mudie, Allison Ramiller, Sadie Whittaker, Leslie E Phillips in Front Neurol 2024 Mar 13:15:1324879. doi: 10.3389/fneur.2024.1324879. eCollection 2024

Research abstract:

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic, multifaceted disease that affects millions globally. Despite its significant impact, the disease’s etiology remains poorly understood, and symptom heterogeneity poses challenges for diagnosis and treatment. Joint hypermobility, commonly seen in hypermobile Ehlers-Danlos Syndrome (hEDS), has been observed in ME/CFS patients but its prevalence and clinical significance within this population are not well-characterized.

Physical Exertion in ME & the PEM/PESE effect, with Karen Leslie of Physios for ME

Rob Messenger shared his motivations for raising funds and awareness for ME by walking 500 miles over 100 days and climbing a total of 65,000 feet in 2 previous blog posts: Fundraising success and Awareness raising. Now he shares reflections of his Discussions at Dawn videos

We recently bought another 4 more copies of A Physiotherapist’s Guide to Understanding and Managing ME/CFS, which was published in August last year, just a month or so after my Discussion at Dawn with one of its authors, Karen Leslie of Physios for ME.

Why 4? Well, it’s a great book about ME – aimed primarily at physios, but so well researched, up to date  and clearly written, that if you want to raise the understanding of any of the professionals working with you, or even your friends or family members, this book does the job.

So we’ve been saving up and buying them to give away – so far to: our Health Board’s Exec member for Neurology and Therapies (she invited me in to meet her), the HB officer setting up the new extended Long Covid + service (includes ME), a neuro rehab consultant , a registrar, and our GP. These four books are for the physio and OT from the neuro team, and a psychologist, and A.N.Other. Can’t recommend the book highly enough.

Not just about physical energy

I guessed that people who’ve heard just a bit about ME might associate it mainly with ‘fatigue’, and would think that’s to do with not having enough physical energy. Actually, ME is a multi-system illness producing multi-symptoms, and the ‘fatigue’ bit of it is both well beyond the kind that most of us experience, and can be both physical and neuro-cognitive.

Anyway, I thought I should check out the physical side of things first. What’s the latest science?

I guessed Physios for ME would know about that, and Karen Leslie kindly agreed to help me understand why an old bloke like me can hike 5 miles, puffing and panting his way up to Paxton’s Tower every morning, but our son who has very severe ME can’t even stand up, let alone walk out of his room.

Even after editing, the video of our discussion was >50 minutes long!  Well, there was a lot to talk about. And it’s really worth a listen – get yourself a cuppa and do it.

Physios for ME

Discussions at dawn interview with Karen Leslie

Karen explained that Physios for ME (there are 4 of them: Dr Nicola Clague-Baker, Dr Michelle Bull, Natalie Hilliard, and Karen) got together out of a shared professional experience of working with people with ME, and/or personal experience of being close to someone with the diagnosis.

We agreed that, in our experience, something that stands out in people with ME is their amazing psychological resilience in the face of adversity, and their desire and determination to try and get better.

Physios for ME are all very experienced professionals with different specialisms. As a specialist neurological physiotherapist , Karen works with people with many complex conditions, including stoke, brain injuries, MS and Parkinsons. She said:

“I treat lots and lots of really complex conditions, and wherever I go I know that my physio toolkit will help these people, and I can make a big difference. And I was pretty confident in that until I met somebody who had severe ME”.

She realised that lack of training and awareness means that she and her fellow physios in general have been poorly prepared to meet the needs of people with ME.

The PEM/PESE effect

The difference with ME is the need to consider post-exertional malaise  (PEM) – when multi-symptoms can be worsened and persist in a way which is out of all proportion to minimal ‘exertion’. It’s the stand-out feature of ME, but it’s poorly understood by health professionals.

Karen told me that sports scientists at the Workwell Foundation have used repeat Cardio-Pulmonary Exercise Tests (CPETs) to measure the difference between ME patients and healthy people, and to find a way of objectively measuring  PEM. They found that the ME patients started working anaerobically (rather than aerobically) much sooner than the healthy participants.

These were patients whose ME was towards the ‘milder’ end of the severity spectrum (they couldn’t have taken part if they were ‘severe’), but even so, whereas the healthy ‘control group’ could do just as well on the second day as the first, the average recovery time for the ME patients was 2 weeks, and one had not recovered a year later.

The PEM effect is disabling, and multi-system, which is why some prefer the term post-exertional symptom exacerbation (PESE). Although the trigger, in this experiment, is physical exertion, the effect is not just physical ‘fatigue’, but also body pain, and neuro-cognitive-sensory symptoms, affecting the ability to think and communicate, or deal with light and sound, for example.

We also discussed the apparently bizarre PEM effect my daughter experiences – getting pain in her legs when trying to read – and learned that this was neither unique nor inexplicable.

Cognitive ‘exertion’, or exposure to sensory overload, can also cause an exacerbation of both neuro-cognitive-sensory and physical symptoms.

Karen explained that Physios for ME have encountered this phenomenon in their ‘feasibility study’, in which people with severe ME  were visited at home and observed / measured when doing simple activities of daily living. Their observations were in line with Workwell’s results, but with more severe patients.

Unexpectedly, it was during a cognitive Maths challenge that the most people began working anaerobically, leading to physical symptoms including body pain.

PEM can only be relieved over time, with rest. But, if pushed too far, the person can be tipped into a longer lasting, more severe phase of the illness. This is why physiotherapists have to be aware of what’s happening physiologically in the ME patient, and take care not to trigger PEM.

“But that’s my job –  to adapt how I’m working to make sure that I’m not causing that person any harm”, Karen said.

Alternatives to Graded Exercise Therapy

We talked about how physiotherapists have to find strategies other than Graded Exercise Therapy (GET), since NICE (National Institute for Clinical and Health Excellence) concluded in its 2021 revised guidance, that:

“…any programme using fixed incremental increases in physical activity or exercise (for example, graded exercise therapy), or physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories, should not be offered to people with ME/CFS. The committee also wanted to reinforce that there is no therapy based on physical activity or exercise that is effective as a cure for ME/CFS.” (NG206 p78)

Karen gave lots of examples of how physiotherapists can assist people with ME, including helping them to understand energy management techniques – e.g. using pacing, and the value of ‘wearable devices’ and appropriate equipment.

She talked about the need for physiotherapists to be aware of the risk of PEM in ME patients, so that when exercise is appropriate or necessary, it can be used safely e.g. when the ME patient needs physiotherapy following an injury.

Info for physios

[N.B. And Physios for ME have recently published a one page leaflet to for people in that situation – a brief guide to give to your physiotherapist. Find it here in English and Welsh (and other languages).]

We went on to discuss Long Covid, and Physios for ME’s ambitions for research, and, of course, the book, which at that time was just being prepared for publication.

You can get it from the publisher: here as well as from bookshops and other on-line booksellers.

Catch up with Physios for ME’s resources, latest news and research at www.physiosforme.com

BIG THANKS!  to Karen for agreeing to have a Discussion at Dawn with me, and for all she and Physios for ME are doing to try to make the sun rise for people with ME!   Watch the video

 Rob’s interview with Dr Nina Muirhead

WAMES helpline hours

The WAMES helpline is run by volunteers and will be closed over the long Easter weekend. 

helpline@wames.org.uk  0290 2051 5061

The helpline will be closed from 5pm Thursday 26 March – 10am Tuesday 2 April 2024.

Normal hours are 10am – 7pm

For emotional support, the Samaritans can be contacted 24 hours a day, 7 days a week.

English – 116 123 – free number (24 hours a day, 7 days a week)

Cymraeg – 0808 164 0123 – free number (7am -11pm, 7 days a week)

Children and young people up to age 25 can also contact Meic by phone, email, SMS text and instant messaging.

• 8am to midnight, 7 days a week
• FREEPHONE: 0808 80 23456
• SMS TEXT: 84001
• IM/Webchat: www.meic.cymru

The Inextricable Link Between ME and Long Covid: Solidarity with International Long Covid Awareness Day

As we observe International Long COVID Awareness Day on March 15th, WAMES and the World ME Alliance stands in solidarity with the millions worldwide living with Long COVID, many of whom are now being diagnosed with Myalgic Encephalomyelitis (ME). This day serves as a poignant reminder of and call-to-action for the millions around the globe grappling with the debilitating long-term consequences of the COVID-19 pandemic, that are far from over.

Long COVID describes a collection of lingering symptoms devastating the lives of millions of COVID-19 survivors. These symptoms persist in an estimated 10–20% of COVID-19 patients, regardless of infection severity, even after the patient no longer tests positive for the virus or antibodies. While recovery times for COVID-19 vary from person to person, Long COVID generally refers to cases where symptoms continue to persist for 90 days or more.

Increasing research into Long COVID demonstrates many similarities to other chronic illnesses known to be associated with viral triggers, such as Myalgic Encephalomyelitis (ME), postural orthostatic tachycardia syndrome (POTS), dysautonomia, mast cell activation syndrome (MCAS), and more.

Research now suggests that 50% of people with Long COVID meet the criteria for an ME diagnosis. The World ME Alliance estimates that the number of people living with ME worldwide has likely doubled since the beginning of the COVID-19 pandemic.

As this phenomenon continues to garner increased attention from the medical community and society at large, it is crucial to acknowledge the intersection of Long COVID and ME.

On International Long COVID Awareness Day, we urge individuals, healthcare providers, and policymakers to recognise the profound impact of Long COVID, ME, dysautonomia and other infection associated chronic conditions.

Take Action with a Long COVID organisation today:

1. Long Covid Alliance: Join forces with the Long Covid Alliance to access resources, support networks, and advocacy opportunities dedicated to addressing the challenges of Long Covid.
2. COVID19 Longhauler Advocacy Project: Engage with the COVID19 Longhauler Advocacy Project for advocacy initiatives in the United States, community engagement, and updates on Long Covid research and support efforts.
3. LongCovidAwareness.Life: Explore LongCovidAwareness.Life for comprehensive information, personal stories, global calls-to-action, and resources related to Long Covid.

At the World ME Alliance, we stand united with individuals affected by Long COVID on International Long COVID Awareness Day. By fostering understanding, advocating for support, and joining forces with organisations dedicated to these overlapping conditions, we can create a more compassionate and informed society.

Together, we strive for a future where everyone receives the care, support, and dignity they deserve

Better care needed for young people with severe ME/CFS

A study of children and young people in the UK pre-pandemic found that investigation, referral and management of those with suspected severe ME/CFS do not always meet NICE recommendations.

This suggests patients may be receiving suboptimal care since alternative diagnoses are not appropriately excluded and specialist care is not provided. The low number of young people receiving domiciliary visits or social services assessment/support limits their access to management.

The researchers conclude that further work should focus not only on determining the most effective treatments for children with severe ME/CFS but also on exploring the barriers to accessing these services and how these can be addressed.

WHAT IS ALREADY KNOWN ON THIS TOPIC

• Myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), is a disabling condition that affects people of all ages, including children and young people (CYP).
• NICE (The National Institute for Health and Care Excellence) published guidelines in 2021 recommending that CYP with suspected severe ME/CFS should have standardised screening investigations to exclude conditions other than ME/CFS that might cause similar symptoms.
• Those with a confirmed diagnosis should be referred to specialist care and this should include domiciliary visits, particularly for individuals unable to leave their homes. It is not known how often these recommendations are implemented.

WHAT THIS STUDY ADDS

• The standardised investigations recommended by NICE are inconsistently performed for CYP with suspected severe ME/CFS, and this is a barrier to confirmation of diagnosis.
• Referral guidelines are not met for nearly one-third of CYP diagnosed with severe ME/CFS.
• Medication to manage symptoms is prescribed for the majority but domiciliary visits and social service referrals are quite uncommon, received by only 12% of confirmed cases.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

• This study suggests the provision for CYP with ME/CFS, including appropriate investigation and onward referral to specialist services requires standardisation in clinical practice.
• Further research is required to identify barriers to the NICE guideline’s implementation and how these can be tackled.

Management of severe ME/CFS in children and young people in the UK: a British Paediatric Surveillance Unit study  by Alexander Peter Royston, Sarah Burge,  Ilaria Idini,  Amberly Brigden, Katharine Claire Pike in BMJ Paediatrics Open 2024;8:e002436 [doi: 10.1136/bmjpo-2023-002436]

Research abstract:

Objective 

Severe myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) in children and young people (CYP) is a little-understood condition which significantly impacts education, development and quality of life.

We used data from a population-wide surveillance study to explore the screening investigation, referral and management of suspected cases of paediatric severe ME/CFS.

Methods 

A British Paediatric Surveillance Unit (BPSU) study reported cases of CYP with suspected severe ME/CFS between February 2018 and February 2019. Paediatricians reporting cases to BPSU and allied healthcare professionals in two large specialist paediatric ME/CFS centres were invited to complete questionnaires for CYP meeting the surveillance case definition. The study focused primarily on CYP with confirmed severe ME/CFS and the extent to which their care met NICE  (The National Institute for Health and Care Excellence) recommendations but also considered separately those with probable or possible severe ME/CFS.

Results

This study includes a total of 92 CYP with suspected severe ME/CFS; 33 meeting criteria for severe ME/CFS and an additional 59 classified as probable or possible severe ME/CFS. For 16 possible cases, incomplete investigation to exclude alternative diagnoses prevented confirmation of a severe ME/CFS diagnosis.

Only 21 of 33 (64%) confirmed severe ME/CFS cases had been referred to specialist services. The management provided varied considerably between patients and four received nothing at all. Of the management provided, the most frequent approaches were medication (67%), activity management (61%) and physiotherapy (61%).

Domiciliary assessments and support, and social services referrals were received by 12% and 6% of confirmed severe cases. Similar proportions of management approaches were seen in probable/possible severe ME/CFS.

Conclusion

Full investigation is frequently incomplete in CYP with suspected severe ME/CFS and recommendations for referral and management are poorly implemented, in particular the needs of CYP who are unable to leave their home might be poorly met.

Be part of the World ME Day 2024 campaign film

As we approach World ME Day 2024, WAMES and the World ME Alliance (WMEA) invites you to be a part of a new short film that aims to shed light on the reality of Myalgic Encephalomyelitis (ME).

The World Health Organization recognized ME 55 years ago, yet any treatment remains elusive, and millions more are now grappling with the aftermath of ME triggered by COVID-19. This global health crisis demands attention, and we need your voice to make a difference.

Take Part
Send us a short video of yourself reading out the script below.

This script has been developed by people with ME across four countries. We’ll join your videos together into one campaign film, to reach others and demonstrate that ME is a truly global health crisis. We’ll then use this to call on individuals, organisations and countries to join together as a #GlobalVoiceForME advocating for change.

Script for your video

“It’s 55 years since the World Health Organization officially recognised Myalgic Encephalomyelitis.

But there is still no cure. No treatments. And millions more are developing ME triggered by COVID-19.

Today, we estimate 55 million individuals worldwide are living with the debilitating effects of ME.

We demand recognition, research, and respect.

I am a [person with ME/ doctor/ researcher/ carer/ friend/ advocate/ family member/ nurse/ charity worker etc – tell us your relation to ME]

I am from [your country]

This is a global health crisis.

Take action with us for World ME Day.

Together, we are a Global Voice for ME.”

Severe ME – alternative participation
If it is difficult or impossible for you to read out a script, we still want you to participate. If you can, please upload a 5 second video of yourself looking directly into the camera. You don’t need to say anything.

We then aim to include this in the final cut, with subtitles that read “Many are too sick to speak”

Find out how to upload your video

The deadline for submissions is 1st April 2024

DecodeME results now due August 2025

The DecodeME team posted an update on 7 March 2024

• DecodeME was due to be completed by August of this year
• Extraction of the DNA from samples has taken far longer than anticipated.
• Our funders have agreed to a funded timeline extension
• DecodeME will now be completed before August of 2025 – results will be released as soon as possible before this date.

DecodeME will use small differences in the DNA of people with ME/CFS to look for biological causes of the disease.

We have an important project update to share with you.

DecodeME participants have done a great job completing questionnaires and returning spit samples. But the next step – extraction of DNA at UK Biocentre – has faced operational and capacity issues.

We have been working hard with UK Biocentre to resolve as many of these issues as possible and to avoid delays. While some issues were mitigated, it became obvious that we simply would not have enough time to perform all necessary data analyses by August 2024, the planned end date.

We discussed this situation with both our Scientific Advisory Board and funders. They agreed with our assessment and funding was awarded to extend the project until August 2025. This will give us sufficient time to finish the project.

We remain fully committed to completing this research to the highest possible scientific standards, ensuring that our findings are as robust as possible. We are acutely aware of the urgency to deliver the study results as soon as possible and we continue to work as hard as we can to fulfill these goals.

A message from our team:

“On the Patient and Public Involvement Steering Group, we recognise that this delay may be disappointing for you, as it is for us.  We live with, and see the impact of, ME/CFS on a daily basis. We’re grateful the funders are continuing to support this project with additional funding. DecodeME will deliver results as quickly as possible and we remain hopeful that the study will give us clues that lead to treatments”. Sian Leary, DecodeME PPI Steering Group member.

Watch our video message below

What’s next?

We continue to formulate plans to build on DecodeME. This includes discussing with other researchers plans for the replication and potential validation of any findings, and working towards securing the longer term future of the DecodeME cohort of participants.  We’ll share details of these plans as soon as we can.

We continue to be grateful for your support of, and engagement with, DecodeME. Your ongoing involvement, as a participant, continues to be essential for successfully completing the search for genetic causes of why people become ill with ME/CFS.

Find out more about the study from the website