* You must be over 18 years old to make a submission and give full consent.
For decades, many in our community have carried not only the weight of the illness itself, but frustration of being unheard or deeply misunderstood.
In recent years, efforts to promote the recognition of ME/CFS as a complex, chronic medical condition affecting multiple body systems have been noted. Research efforts seem to be expanding, and conversations appear to be changing.
When hope may no longer be a closely guarded secret – your voices matter more than ever!
Letters of Hope
A letter is a powerful thing, and this is your chance to tell the world the facts, share your truth and deliver a chance to be truly heard.
Writing a letter of hope is not about ignoring the realities of ME/CFS, rather acknowledging that people are starting to ask the right questions.
Your letter could include:
- A reflection on what recent progress means to you personally
- A chance to write an open letter and a plea to researchers, policymakers, or healthcare providers to provide hope that is so desperately needed
- Your letter may like to include your hopes for the future or a vision of what the future should look like.
Collective Voices
Individually our stories are undoubtedly powerful, but together, our voices are stronger.
Imagine a collection of letters – from people across the UK – each sharing their experience of ME/CFS and developments throughout the years. Hope may fluctuate, hope may be often dashed, however, we would suspect hope endures in many of us.
These letters may:
- Inspire others to share their story
- Build upon the sense of community connection
- Or even help to shape public understanding
Where we are today
Over recent years, it is clear we are beginning to see:
- Increased interest in biomedical research, which in part may be due to Long Covid and the 62% post pandemic ME/CFS prevalence figures (400K)
- A number of studies; Decode ME, and its follow up study Sequence ME-LC, plus the Rosetta Stone project funded (1.1M) by the ME Association are all working on finding answers. More details on other research the MEA is funding here
- Greater mainstream media attention
- And albeit slowly, we are seeing a change in medical attitudes among some healthcare professionals
But we must not forget that:
- We currently do not understand what causes or perpetuates this disease… despite years of research, and so further research is needed
- ME/CFS service provision across the UK remains uneven, with major regional disparities and limited support for severe cases. Most services focus on mild to moderate illness, often without medical oversight, and Long Covid services are continuing to close. However, progress is emerging: national service planning is underway, alongside some integrated NHS services and dedicated funding in Scotland and Wales—offering cautious hope for improvement.
- Medications for symptom management or to treat any comorbidities are limited, and currently we have no effective cure for this disease
- Daily activities of living remain difficult; quality of life is greatly reduced and the impact of the disease if far reaching and life-altering.
Your letter can share both realities, as it is OK to say: “I’ve seen some progress—and then offer the strong message that the community needs more.”
An Invitation
This is your invitation. Write a letter of hope, not because everything is fixed, but because something is changing. Write it for yourself, for others, for the future.
Together, letter by letter, we can create something powerful which is a record not just of what we’ve endured, but also of what we believe could be possible.
How to get involved depending on severity
If you’d like to write a ‘Letter of Hope’ either using your first name only, anonymously or using a pseudonym, please complete the following form to submit your letter and provide full explicit consent to share:
Please complete the form if you’re a person (18 years +*) who has ME/CFS or a representative of a person (18yrs +*) and has ME/CFS:
Severe ME
If you are severely affected by ME, and wish to take part, we are happy to receive short messages or quotes to use on your behalf.
Please do so via the form above
Template Letter
A guide to writing your letter and what it may include can be found via this template below, however this is purely for guidance as your letter should be yours and yours alone!
Letter of Hope Example
Here’s an example letter that may help you write your own submission:
Dear Reader,
Let me start by saying, I have had ME/CFS for over 20 years and not that long ago, having ME/CFS I felt like I was speaking into a void. Knowing symptoms and suffering were profoundly affecting myself and others, yet many were often met with disbelief, misunderstanding, or stigmatisation. It was hard to fight a system when you only have just enough energy to get through the day…..
In the last five years, something has begun to change, notably that scientists started listening to patients post pandemic and this may largely be due to the emergence of Long Covid.
The groundbreaking DecodeME study— the world’s largest genetic study—uncovered preliminary finding that showed distinct biological signals linked to the immune and nervous systems. Having fought so long to be believed, I felt validated and like the tide may be turning for us all.
In UK Parliament, during an ME/CFS debate November 2025, Ashley Dalton the then Parliamentary Under-Secretary (Department of Health and Social Care) stood to say clearly: we hear you, we believe you, and we must do better. Stories of those confined to darkened rooms, experiencing profound exhaustion seemed to be no longer hidden.
A stark advocate, Tessa Munt MP, (Lib Dem for Wells & Mendip Hills) stated she will continue to ‘keep minister’s feet to the fire’ and continues to advocate for patients as chair of the All-Party Parliamentary Group (APPG) on ME.
The publication of the UK ME/CFS Final Delivery Plan 2025 which was initially delayed, does mark a turning point. Recently there appears, albeit outwardly, a coordinated, cross-government commitment to improve research, healthcare, and understanding. It recognises the failures of the past and sets a course toward something better.
This is just the beginning; it’s a starting point – but one we’ve never had before. There is talk of improved services, education for healthcare professionals, and a renewed focus on biomedical research, however we need action sooner rather than later – this disease has been ignored for too long!
Hope for the ME/CFS community often hangs on every researcher who chooses to enter this field, every clinician who decides to do further reading on the condition, and on every MP who chooses to schedule/attend debates, ask parliamentary questions and join forces to support the APPG on ME.
Scientists have shown that they can work towards answers for the most complex conditions. Hope depends on future research and developing further understanding of ME/CFS, and the biological mechanisms that are highlighted today become tomorrow’s treatments.
And perhaps most importantly, hope depends on a future where belief is first and foremost and patients lived experience is counted!
The past five years have shown that progress is possible. Past narratives can change, and this message needs to be spread far and wide by those organisations who say they see us.
As part of the ME/CFS community, I implore people to help us to change attitudes and improve lives, and advocates to keep campaigning to ask the NHS/DHSC to fully fulfil the actions of the delivery plan as soon as possible.
With these developments, there is momentum and my hope in this continues – as many younger generations have had their life cut short by this awful debilitating multisystemic disease (as I did back in the 2000s)
Find the answers, fuel our hope and fight for us!
Kind regards,
Anon
Removing Consent
As per the submission form, you can withdraw consent at any time by emailing feedback@meassociation.org.uk, however, upon submitting your letter you must understand while we endeavour to remove from our platforms, we have not control over other people’s social media accounts – i.e. these posts may remain in situ.
Seeds of Hope
Our new campaign, Seeds of Hope, has just launched: