Six myths and facts everyone should know about Myalgic Encephalomyelitis (ME) 

Myalgic encephalomyelitis (ME), also known as ME/CFS, is a debilitating illness that affects millions of people worldwide. However, persistent myths and misunderstandings hinder its recognition and treatment.

For World ME day on May 12th 2025 WAMES is joining with the World ME Alliance (WMEA) and countries around the world to debunk six of the most common myths about ME and share the medical facts everyone should know.

Challenge the myths, champion the facts!

In the run up to World ME Day we will be releasing images to share

Myth:  ME is a mental health condition

Fact: ME is a biological illness that disrupts the metabolism and impairs the brain, immune system and autonomic nervous system

Myth: ME is just about feeling tired

Fact: The defining symptom of ME is Post-Exertional Malaise (PEM)

– an extreme worsening of symptoms after even minor physical or mental exertion. While there is no cure for ME, there are compassionate ways to help patients manage their symptoms, in addition to pacing to prevent PEM.

Myth: You can exercise your way to recovery from ME

Fact: Exercise can be dangerous for people with ME

Unlike other chronic conditions where exercise can help, structured exercise programs often make ME symptoms worse as patients end up pushing themselves too far.

Myth: Only certain groups of people can develop ME

Fact: ME affects people of all races, genders, ages, and socioeconomic backgrounds

Myth: Doctors cannot help people with ME

Fact:  Doctors can help people manage ME symptoms

While there is no cure for ME, there are compassionate ways to help patients manage their symptoms, in addition to pacing, to prevent PEM.

Myth: Long COVID is entirely different from ME

Fact: Many Long COVID patients have symptoms that match ME

More information

Myth: ME is just about feeling tired

Myth: Mae ME yn ymwneud â theimlo’n flinedig

Myth: ME is a mental health condition

Myth: Mae ME yn gyflwr iechyd meddwl

Myth: You can exercise your way to recovery from ME

Myth: Gallwch ymarfer eich ffordd i wella o ME

Myth: Only certain groups of people can develop ME

Myth: Dim ond rhai grwpiau o bobl all ddatblygu ME

Myth: Doctors cannot help people with ME 

Myth: Ni all meddygon helpu pobl ag ME

Myth: Long COVID is entirely different to ME

Myth: Mae COVID Hir yn hollol wahanol i ME

#WorldMEDay      #MyalgicE       #MEAwareness

ME Voices Wales – book the date!

Join us online!

The first online event to explore ways that people affected by ME in can have a louder voice in Wales is scheduled for Tuesday 13 May at 11 am. If you can’t make that, there will be another chance to join in on Friday 16 May at 6pm.

Details of how to register will be available after the Easter week holiday.

What is an online event?

Sometimes called a virtual event, this is a way you can watch, listen and even take part in a conference or meeting without any tiresome travel, in the comfort of your own home, maybe even from your bed. You will need a digital device (computer, phone or tablet) and stable broadband connection or good mobile signal with plenty of data.

Many of us have been meeting online regularly with friends and family since the pandemic but if you are unsure how to get involved, let us know and we will try to help.

‘I can’t get online’

We understand that not everybody can access the internet, has a good mobile signal or ‘attend’ any kind of get together.

Please keep in touch and let us know about your situation, so we can look for ways that everybody can contribute.

Everybody who wants to should be able to hear about things that affect them and make their voice heard!

Find out more

ME Voices Wales – have your say! 

Sign up to be added to the e-news mailing list: mevoiceswales@gmail.com

Spread the word! #MEVoicesWales

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 17 April – 10am Tuesday 22 April 2025.

Normal hours are 10am – 7pm

Feel free to email queries and we will reply as soon as possible.

Alternative sources of help:

The Samaritans can be contacted for emotional support 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 (7pm-11pm – check times on the website)

Meic Cymru – 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: 080880 23456
SMS TEXT: 84001
IM/Webchat: www.meiccymru.org

CALM – Campaign against living miserably – 365 days a year

Helpline 5am to midnight
Freephone: 0800 585858
Webchat: www.thecalmzone.net/

Severe & very severe ME in Wales

Rob Messenger’s son, Cerith, has very severe ME. His local Senedd Member has offered to bid for a debate in the Senedd to raise concerns with the Health Minister about the lack of provision for people with severe and very severe ME.

We want to find out how many people in Wales are at this level of severity, understand their lived experiences, and work with the Welsh Government and the NHS to develop appropriate provision which can properly meet their needs.

If you have severe or very severe ME, or you are caring for someone who has, Rob would like you to get in touch. Please contact him by email at robertmessenger@btinternet.com

The NICE Guideline says:

• People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound. 
• People with very severe ME/CFS 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 swallow and may need to be tube fed.

See also

WAMES call for safe hospital care for severe ME in Wales

ME Voices Wales – have your say!

ME Voices Wales – have your say!

How can people with ME in Wales have a louder voice?

Who do we want to listen to us?

What changes do we want to see take place?

How can we find out about things that affect us?

ME Voices Wales is an exciting new project to bring people together so we can listen to each other and work out ways we can communicate about things that are important to us.

Individuals and groups have been supporting each other and raising awareness of ME/CFS in Wales for decades. Now that there is more acknowledgement of the condition and people say they actually want to hear from us, WAMES and FTWW are inviting people with ME throughout Wales to join us and help us make a louder noise.

Numbers matter

Often WAMES is asked by services or politicians ‘how many members do you have’ & ‘where do they live’? The more members, the greater a reason for paying attention. WAMES is not a membership organisation, though from the beginning we have collected experiences and opinions to shape our advocacy work.

We think there could be over 65,700 people with ME in Wales, since so many developed ME following COVID, but how many want to be heard?

The more people that sign up, the bigger the impact we can make!

Whose voices do we want to hear?

Since Oct 2021 the description of ME in the NICE guideline is one we recognise. Anyone living in Wales with ME or suspected ME, as described by NICE, or who lives with, or cares for someone with ME, is invited to join us.

The NICE guideline definition (even though it is not perfect!) gives us a recognisable and acceptable identity.

What will the project do?

First we need to listen to each other so we can understand what we want to talk about.

We are therefore planning an initial on-line event / series of events to discuss, listen and for you to have your say. We are also considering using other virtual events, local get togethers, short questionnaires, snail mail and polls to gather information.

Then we need to present our voices in a way that our target audience (NHS, politicians…) will hear so we might produce reports, statistical diagrams, infographics, videos etc. Whatever is needed.

How can you get involved?

Sign up to be kept in touch with the project as it develops

 you will be added to the e-news mailing list so you can find out what is planned.  See contact details below

Join the initial on-line event/s

We’ll soon be sending out details of how to register. [Register here ME Voices Wales tickets  Tues 13 May & Fri 16 May]

Take the Priorities Survey

Tell us what matters most to you as a person living with ME

Offer your help

can you help run virtual or f2f events OR devise surveys, diagrams or reports OR lead discussions OR something else we haven’t thought about yet?

Know people who are not online?

Give them a print-out of this announcement so they (or a carer) can contact us or they can phone us, and we will communicate through snail mail. We don’t want anyone to be left out!

Groups can become partners

any ME groups or groups in Wales with an interest in ME can offer their support, experience and expertise.

We look forward to hearing from you!

mevoiceswales@gmail.com

The Coach House, Frongog, Aberystwyth SY23 3HN

WAMES helpline: 029 2051 5061

ME/CFS – an urgent need for awareness, services, research funding and support (Women’s Health Plan)

The first Women’s Health Plan for Wales was launched in December 2024 and illustrates a 10-year vision to improve healthcare services for women, uncluding a call for urgent attention to ME/CFS.

Research shows that while women live longer than men, they live fewer years free from disability, wait longer for pain relief and many women report having their symptoms dismissed.

Created by the National Strategic Clinical Network for Women’s Health, the plan sets out how NHS organisations in Wales will close the gender health gap by providing better health services for women, ensuring they are listened to, and their health needs are understood.

There are nearly 60 actions in the Plan across eight priority areas.

ME/CFS comes under priority 8: Ageing well and long term conditions across the life course [p89]

7.8.6 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) disproportionately affects women, with recent studies indicating that
approximately 75-85% of individuals are female.

approximately 75-85% of people with ME/CFS are female

The impact of ME/CFS on women’s health can be profound, leading to significant physical, emotional, and social challenges. Women with ME/CFS experience a range of symptoms that hinder their ability to participate in daily activities, maintain employment, and act as carers. People with ME/CFS are more likely to have co-morbid conditions such as Irritable Bowel Syndrome and Fibromyalgia, which also affect more women than men, and can lead to additional challenges for diagnosis and healthcare support.

The ‘Women’s Health Wales Coalition Quality Statement’ emphasises the need for equitable access to diagnosis and treatment for women experiencing ME/CFS, recognising the unique challenges they face.

By integrating this understanding into the Plan, there is an urgent need for tailored healthcare services, increased awareness, and dedicated research funding aimed at improving diagnosis, treatment, and support for women affected by ME/CFS.

WAMES is continuing talks with the Women’s Clinical Health Network, led by Dr Helen Munro from Hywel Dda UHB as well as the other Clinical networks, to ensure that everybody within NHS Wales is aware of the needs of the ME community in Wales, and every possible avenue to improved services is explored.

Merry Christmas…

…and a happy, healthy and prosperous new year to one and all, from everyone at WAMES.

WAMES volunteers, both people with ME and carers, will be taking some much needed time off over the festive period so we can start the new year refreshed (hopefully!).

WAMES helpline hours
helpline@wames.org.uk
0290 2051 5061
Closed: 23 December – 5 January
Reopen: 6th January
Feel free to email queries and we will reply as soon as possible.

Alternative sources of help:

The Samaritans can be contacted for emotional support 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 (7pm-11pm – check times on the website)

Meic Cymru – 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: 080880 23456
SMS TEXT: 84001
IM/Webchat: www.meiccymru.org

CALM – Campaign against living miserably – 365 days a year

Helpline 5am to midnight
Freephone: 0800 585858
Webchat: www.thecalmzone.net/

Question about ME/CFS in the Senedd

On the 22nd October Adam Price MS tabled a written question to the Health Secretary:

What plans does the Welsh Government or NHS Wales have to establish an all-Wales pathway for patients with severe ME/CFS in Wales, and training for doctors and other health professionals?

The Cabinet Secretary Jeremy Miles MS, replied on 31 October:

The Adferiad (Recovery) programme, which was initially set up to support people with long-Covid is improving support for people with ME/CFs. £8m of recurrent funding has been allocated to health boards since March 2023 to widen access to Adferiad-funded services to people with other long-term conditions whose rehabilitation and recovery needs are similar to people with Long-Covid, including 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.

Unpaid Carers need care and support

Sylvia Penny, the Youth & Care Officer & Helpline coordinator for WAMES, is also an unpaid carer for her 2 adult children. One has severe ME and one has autism.

She spoke to ITV News at 6 about how difficult it is to find the financial and practical support she needs and that this has taken a toll on her health.

“You have to care for yourself, if you wish to care for others.”

Rob Simkins from Carers Wales explains that added costs and reduced income, being slow to realise you need help, plus a shortage of the right help for each family, can lead to crisis.

“Unpaid cares save the Welsh Government over £10 billion”

He wants to see Welsh Government and Councils make unpaid carers a priority and proactively seek them out to provide care.

“Unpaid carers are just as vital as our health and social care services.”

He urges people to reach out as there is some help available across Wales.