Do you live with Myalgic Encephalomyelitis (ME) — also known as Chronic Fatigue Syndrome (CFS)?
Are you based in Liverpool, Southport, Wirral, Chester, or nearby?
💬 I’m Alisha Whittam, a long-term ME sufferer, and I’m reaching out to our local community with a clear mission:
To gather honest, real-life insights into the care and support (or lack of it) that ME sufferers are receiving across Merseyside and beyond.
Why This Matters
We’re incredibly lucky in Liverpool to have a dedicated ME department within the Infectious Diseases Team at the Royal Liverpool Hospital. But let’s be honest — the service at Broadgreen Hospital, where this team operates, is underfunded and overstretched.
The team genuinely cares, but it’s becoming clear that not all patients are being treated equally. Some GPs are diagnosing and managing ME themselves, which can mean that those patients aren’t referred on for additional care, like occupational therapy or specialist reviews. This raises serious questions:
❓ Are some people slipping through the cracks?
❓ Is the ME team being properly funded to manage our needs?
❓ Are local practices aware of the full pathway and support options?
📍 The level of care we receive should not be a postcode lottery.
Everyone — whether in Liverpool, Southport, Chester, or elsewhere — deserves:
-
Access to knowledgeable clinicians
-
Occupational therapy
-
Wheelchair support
-
A professional to talk to about living with this condition
🛑 That is not the reality for far too many of us. And it needs to change.
🤝 How You Can Help
If you are living with ME/CFS, please take a moment to email me with the following:
-
Do you have an ME/CFS diagnosis? (Yes / No / Awaiting diagnosis)
-
Where are you based? (Please share your local area only — no full address needed.)
-
Are you currently receiving any treatment or care for ME/CFS?
-
Where were you diagnosed, if applicable?
-
Would you like to be kept informed as this campaign develops?
📩 Click here to email me
🔒 Your Information Stays With Me
This is a personal project, led by me, and your responses will be kept fully confidential.
They will not be shared, sold, or passed on to any third party.
-
I will print and store your answers in a secure folder (no digital database).
-
Your input will only ever be used to help build a clearer picture of what’s happening locally so we can advocate for the care we all deserve.
What Happens Next?
Once we gather a clearer idea of who is getting help and who isn’t, we can:
-
Identify service gaps
-
Highlight any specific areas or clinicians falling short
-
Present a united voice to healthcare providers
-
Campaign for increased funding, staffing, and support services
This is just the beginning. The more people who share their story, the louder we can shout.
We Deserve Better
Together, we can shine a light on the true scale of ME in our region and start driving the change we so desperately need.
Thank you for being willing to speak up — even when it’s hard.
Your story really can make a difference.
With love always,
Alisha 🫶
