I wrote on the subject of ME back in February 2025. Sadly no progress seems to have been made, questions to the government receive “dead bat” pro-forma answers and still the silent scandal of 1.35 million people in the UK suffering from ME/CFS (or Long Covid with ME-like symptoms) continues. That’s about 2,000 on average per UK parliamentary constituency.
Some figures: The average lifetime costs per patient with ME are £4.7 million on average.
There are £20 billion per year costs to the economy due to ME – and this is rising. (This includes loss of productivity and the fact that many patients are cared for by their parents)
There is currently no UK ring-fenced funding for long term research into the illness. This compares badly with Germany who have dedicated 500 million Euros over 10 years for research labelled a “National Decade Against Post-Infectious Diseases” (photo above shows the sort of public protests which preceded the commitment of that money).
Recently there have been a few reasons for hope.
George Monbiot recently wrote an impassioned article in the Guardian entitled “Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed“, which is very much worth a read. In particular, he highlights that some sufferers are still being pushed by GPs into GET (Graded Exercise Therapy) despite this contradicting NICE guidelines and evidence that it can be positively dangerous for ME patients.
Former Olympic sprinter Beth Dobbin has risked her health to tell the BBC about her condition:
Dobbin has been diagnosed with ME, or myalgic encephalomyelitis – a chronic, fluctuating disease, causing symptoms such as sleep problems, problems with thinking and memory, pain and severe, persistent fatigue that does not improve with rest, and more.
A conversation, or even something so simple as a light too bright or a sound too loud, can cause a “crash” that lasts 24, 48 hours, or in the worst cases, months on end.
This year, Dobbin has left the house on just five occasions.
Tessa Munt MP continues to energetically campaign for better treatment of ME patients as chair of the APPG on ME, which includes ten Liberal Democrat parliamentarians. The minutes of the APPG meetings continue to be a tonic. At least some people are doing something about ME!
But it really is time for significant government action on this. As the minutes of the APPG meeting on September 2nd state:
Why has there been no One Year Update on the government’s Final Delivery Plan of July 2025?
Note: For simplicity I have used the term “ME” to cover ME, CFS and Long Covid with ME-Like symptoms.
Glossary:
ME = Myalgic Encephalomyelitis
CFS = Chronic Fatigue Syndrome
NICE = The National Institute for Health and Care Excellence
APPG = All Party Parliamentary Group
* Paul Walter is a Liberal Democrat activist and member of the Liberal Democrat Voice team. He blogs at Liberal Burblings.
Follow @libdemvoice.org on Bluesky
Like us on Facebook
Subscribe to our feed
Sign-up for our daily email digest
Quite simply, the best book title. Ever.
The Joy of Six 1604
Farage and the snooper
The Future of this Blog.
Money can't buy you love (or votes it would appear!)
Catherine Hodgkinson
expats
Anthony Acton
cim
PM
2 Comments
First comment on this site but just wanted to flag that FND (Functional Neurology Disorder) is also in drastic need. When I was diagnosed with FND (a long term health condition with several similarities to ME) I was completely bedbound, having daily seizures and loss of speech, lack of limb control, poor mobility, pain, brain fog and fatigue. After 9 months of completely no support I was sent to the FND rehabilitation program which was a traumatic process which resulted in no improvements and even worsening of some symptons. For the following 7 years I had no referrals, no named doctor, and no treatment. I am fortunate enough that after years of nothing from the NHS, my dad was able to fund a private neurologist and following several interventions, my functioning has drastically improved. Most people are not in a position to receive this kind of support. I wonder how many other people are left without any kind of treatment plan or even check-ups.
Apologies for the informality of this comment – I hope it wasn’t inappropriate for me to mention this, but would love to see FND included or acknowledged in a plan to tackle long-term health conditions in the UK.
Hi Paul, I thought you might be interested to know that we have an ME/LC Lib Dems group where we discuss and coordinate our advocacy efforts – just drop me a line if you want to join!